UKDEMENTIA - Careinfo.org

Transcription

10
th
UK
#UKDC2015
DEM ENTI A
CONGRESS
3-5 November 2015
The International Centre, Telford
academic partner
in association with
main sponsor
sponsors
gold sponsor
OFFICIAL PROGRAMME
Welcome
th
UK
DEM ENT I A
CONGRESS
CONGRESS SUMMARY
10
th
UK
DEMENTI A
CONGRESS
Welcome to the 10th UK Dementia Congress
It is my great pleasure, on behalf of the Journal of Dementia Care, our Congress
Planning Committee and all our sponsors to offer you a warm welcome to our tenth
annual Congress.
It is a ‘big’ birthday for us at Hawker and for all those who over the ten years have
contributed so much to Congress and thereby to the wider dementia care community.
We will be celebrating throughout Congress and particularly on the middle evening
(4 November) with a wonderful selection of arts activities, exhibitions and workshops.
I would also like to draw your attention to the launch of JDC’s new gold, silver and
bronze membership levels subscriptions on our new website www.journalofdementiacare.
co.uk. The new levels bring all sorts of additional and exciting levels for current and
new subscribers including online access and a weekly brilliantly edited e-newsletter
from our editor Mark Ivory. Full details on our Hawker exhibition stand.
As always we have organised a controversial topic for our debate followed by a
stimulating programme for you with plenty of opportunity to have your say.
A large and lively exhibition and ample time to network and socialise with
like-minded colleagues complete the unique experience Congress offers.
As the event organiser, the Journal of Dementia Care is indebted to a great number
of people and organisations. A big thank you to the Congress Planning Committee (see
page 8) who helped shape the event and selected such interesting topics and speakers.
We greatly appreciate the generous support of all our sponsors, and particularly our
Main Sponsor Barchester Healthcare for their wonderful and much appreciated
sponsorship. It is their sustained commitment and enthusiasm for achieving the
highest levels of dementia care that helps make possible this annual UK-wide
opportunity to get together and learn from each other.
We are also extremely grateful to all our supporting organisations and exhibitors who
add so much to the event. In particular I would like to thank the University of Bradford,
the Alzheimer’s Society, Dementia Care Matters, Anchor, the Joseph Rowntree
Foundation and the University of Worcester for their magnificent support.
We wish you all a very productive and enjoyable Congress. By contributing and taking
back to your workplace what you learn here in Telford, you can make a real difference
to the quality of life of the people you support.
Dr Richard Hawkins MBBS FRCS, Editor-in-Chief, Journal of Dementia Care
TUESDAY 3 NOVEMBER
CONGRESS OPENING
MAIN HALL
10
DEBATE & DRINKS RECEPTION
18:20-19:30
Open Debate (We warmly welcome your contributions to this debate.)
The motion: This house believes that care and support services for people
Conference registration and
with dementia and their carers have improved over the last ten years
exhibition viewing
This motion will be proposed and opposed by a panel of speakers – Keith
Oliver & George Rook, living with dementia; Ruth Eley & Louise Langham,
tide (together in dementia every day); Reinhard Guss, Kent & Medway
Welcome and introduction
NHS
PT & Isabelle Latham, University of Worcester – then opened up for
Dr Richard Hawkins, Editor in
discussion
and contributions from the floor.
Chief of the Journal of Dementia
Chair
Professor
Mary Marshall
Care and Director of Hawker
Events. Plus: Students from the
University of Bradford: Rachel
Congress drinks reception in the main exhibition area – all welcome.
Fitton and Tom Rose
16:45-17:55
18:00-18:20
19:30-20:15
www.careinfo.org/ukdc-2015
Tuesday 3 November (More details below left)
16:45-17:55 Registration
18:00-18:20 Welcome and introduction
18:20-19:30 Congress debate
19:30-20:15 Congress drinks reception
Wednesday 4 November (Full details: pp4-5)
08:30-09:15 Early bird sessions
09:40-11:30 Plenary session
11:30-12:00 Refreshments & exhibition
12:00-13:10 Parallel sessions
13:10-14:10
Lunch, posters & exhibition
14:10-15:00 Plenary session: keynote
18:00-21:00 Special 10th birthday event:
a celebration of the arts in
dementia care
Thursday 5 November (Full details: pp6-7)
08:30-09:00 Early bird sessions
11:00-11:50
Plenary session/workshops
13:10-14:10
Lunch, posters & exhibition
15:20
Close
PROGRAMME CONTENTS
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6
8
10
18
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4 November programme ■
5 November programme ■
Added attractions
Congress supporters
Speakers’ biographies
Speakers’ abstracts
Download the
UKDC app today!
Features of this app (for
iOS and Android devices,
called UKDC 2015 available
from Google Play Store for Android and App Store for
iPhones and iPads) will allow you to vote during the
opening debate using keypad voting, a chat function to
keep in touch with others at the congress also using the
app, plan your schedule for each
day along with details of the
venue, poster presenters,
exhibition and connect to Twitter.
The app, sponsored by MBi Social
Care, is free to download and is
designed to enhance your
experience of this year’s
Congress.
Search your app store
for UKDC 2015 now
3
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Wednesday 4 November programme
08:00-09:25 CONFERENCE REGISTRATION
08:30-09:15
EARLY BIRD
SESSIONS:
EB1.1 [NEWPORT 1] Being together really matters - bringing family relationships into the heart of dementia care David Sheard, Dementia
Care Matters
EB1.2 [BECKBURY 2] Using the Mental Capacity Act (MCA) to empower our client group Sara Wilcox, Pathways Through Dementia
Chair: Emma Hewat
EB1.3 [NEWPORT 2] Living well with dementia: Sex, intimacy and well-being. Strange bedfellows? Danuta Lipinska, specialist in ageing
and dementia care
EB1.4 [BECKBURY 1] The arts in dementia care - three presentations:
Challenging culture, practice and inequality in Tameside: Cultural arts alternatives to anti-psychotics in dementia Ursula Humphreys ,
Tameside Council; ‘All of Me’: A life story performance Clare Cook, Moseley Hall Hospital, Birmingham. Music Reawakening: Musicianship
and access for families with early-stage dementia Veronica Franklin Gould, Arts4Dementia. Chair: Jo Moriarty
EB1.5 [PATTINGHAM] Acute hospital care - three presentations: A multi-site evaluation of the Person, Interactions & Environment (PIE)
programme to improve person-centred care for people with dementia in acute hospital wards Rosemary Woolley, Bradford Teaching Hospitals;
Student volunteers make a difference in the well-being of people with dementia in hospital Barbara Schofield, Calderdale & Huddersfield NHS FT;
Inpatient dementia friendly menu linked with the Butterfly Scheme Hannah Seymour, University Hospitals of Morecambe Bay FT. Chair: Sian Jones
09:40-11:30 MAIN HALL
PLENARY SESSION:
Chair: Jeremy Hughes, Chief Executive,
Alzheimer’s Society
PLEN 1
Keynote speakers:
• People with dementia and carers from the DEEP (Dementia Engagement and
Empowerment) group and tide (together in dementia everyday)
• Women and dementia: Professor Dawn Brooker, University of Worcester, Philly Hare,
Joseph Rowntree Foundation and Wendy Mitchell, York Minds and Voices
• Jane Ellison MP, Parliamentary Under Secretary of State for Public Health
11:30-12:00 REFRESHMENTS & EXHIBITION VIEWING
12:00-13.10 PARALLEL SESSIONS:
1.1 [MAIN HALL] CARE ENVIRONMENT 1.2 [NEWPORT 1]
WORKSHOP: INVOLVEMENT
Can we design to reduce distressed
1.3 [LUDLOW 1]
FOCUS ON OUTCOMES
1.7 [BECKBURY 2]
SATELLITE SYMPOSIUM
behaviour?
Prof Mary Marshall, University of
Stirling
Support worker care within the
Household Model Mark Howard &
Valerie Taylor, Order Of St John Care
Trust
“Why don't we go into the garden?”
Debbie Carroll & Mark Rendell, Step
Change
Design Ltd
Chair:
Dr Nori Graham
The benefits of a dementia hub
Tim McLachlan, Alzheimer’s Society
‘Kathy's Story’ Moving from
personal outcomes to organisational
settings Helen Sanderson, Helen
Sanderson Associates & Ian
McCreath, Alzheimer’s Society
Try something new Kerry Phelps & Joanne
Lane, Alzheimer’s Society, Wales
Chair: Zoe Harris
‘Anchor Inspires’: Innovative model
of dementia care
Joanne Laverty, David Moore & Gillian
Allatt, Anchor, with Ann Wilson & Flo
Frances (team leaders, Cranlea care
home) will present a new model of
person-centred care for people with
dementia, and Anchor’s newlydeveloped internal accreditation
awarded to homes
delivering inspirational
care – followed by group
discussion.
A workshop to discuss the involvement of
people with dementia and carers in planning
and co-creation of services, professional
education and research. Participants will
consider what are the key factors and resources
needed to give effective support, and the
positive and negative impacts for all involved.
Chair: Reinhard Guss, Kent & Medway NHS PT.
Involving Keith Oliver, KMPT, Nicola Jacobson,
Christopher Russell & members of the LINK
group, Julia Burton-Jones and Sylvia Cowleard,
Dementia Pathfinders; Jane McKeown & Bev
Graham, Sheffield Health & Social Care NHS FT
and Sheffield Dementia Involvement Group
1.4 [PATTINGHAM] WORKSHOP: MEETING THE
NEEDS OF DIVERSE ETHNIC COMMUNITIES
1.5 [NEWPORT 2]
IMPROVING SUPPORT FOR CARE HOMES
Workshop to consider effective approaches to
developing services which meet the needs of
diverse ethnic populations
The discussion will focus on the evaluation of the
Alzheimer’s Society’s Information Programme for
South Asian Families (IPSAF), conducted by the
University of Bradford’s School of Dementia Studies.
Presenters: Professor Jan Oyebode, Sahdia Parveen
(University of Bradford); Alice Clark & Gill Read
(Alzheimer’s Society); Neena Bilku & Disho Sandhu
(BME United);
Professor Martin Prince,
Kings College London
Achieving the Care Act: A new commissioner/provider relationship Catherine Murray-Howard, Community
Integrated Care & Dave Sweeney, Halton CCG
The South Devon Dementia Learning Community
Tammy Jones & Natalie Portwine, Devon Partnership
NHS Trust
A self-assessment tool to check progress in
delivering person-centred care
Gillian Bailey, Helen Sanderson Associates
CLEAR: Dementia Care and Distressed Behaviour
Dr Frances Duffy, Northern Health
& Social Care Trust
Chair: Hazel Heath
1.6 [BECKBURY 1] EUROPEAN PERSPECTIVES
Chair: Karen Harrison Dening
Facilitators and barriers to opening a Meeting Centre
for people with dementia and their carers in the UK
Dawn Brooker & Shirley Evans, University of Worcester,
Rose-Marie Dröes, VU University Medical Centre
Dementia friendly communities – a European overview
Toby Williamson, Mental Health Foundation
Best practice strategies for transition from home
care to long-term residential and nursing care (RightTimePlaceCare) Caroline Sutcliffe & David Jolley,
University of Manchester
Antipsychotic use in long-term institutional care in
eight European countries: results from the RightTimePlaceCare study David Jolley, University of Manchester
13.10-14.10 LUNCH, POSTER & EXHIBITION VIEWING
14.10-15:00 MAIN HALL PLEN 2
PLENARY SESSION Chair: Professor Murna Downs
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The Tom Kitwood Memorial Address: Fiscal and policy challenges for long-term care for people
living with dementia Professor Martin Prince, Professor of Epidemiological Psychiatry at the Institute of
Psychiatry, King’s College London, and Joint Director of the Centre for Global Mental Health
Telford, 3-5 November 2015
Wednesday 4 November programme
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15.10-16.20 PARALLEL SESSIONS:
2.1 [MAIN HALL] STAFF DEVELOPMENT
2.2 [NEWPORT 2] RESEARCH
2.3 [BECKBURY 2] EARLY SUPPORT Chair: Susanna Howard
Capturing care and compassion in all
settings
Lynne Phair, independent nurse adviser
& Hazel Heath, independent nurse consultant
Some truth about truth telling, ‘delusions’
and different realities in dementia
Toby Williamson, Mental Health Foundation
The Feeling of Being:
the ‘S’ Factor in dementia care
David Sheard, Dementia Care Matters
Chair: Professor Graham Stokes
Evidence for practice: recent research
funded by the National Institute for Health
Research (NIHR) Chair: Piers Kotting, NIHR
Comorbidity and dementia: improving
healthcare for people with dementia (CoDem)
Anne Marie Burn, University of Hertfordshire
Well-being and health for people with
dementia in care homes (WHELD): overview of
learning over five years Jane Fossey, Oxford
Health NHS FT & Prof Clive Ballard, King’s
College London
Exploring the concept of complexity in NHS
dementia inpatient wards
Lesley Jones, University of Manchester
Developing a national Reading Well Books on Prescription
scheme in public libraries for people with dementia and their
carers Debbie Hicks, The Reading Agency, Nada Savitch, Innovations
in Dementia, Rose Vickridge, Alzheimer’s Society
Putting people with dementia in control:
Co-production of an electronic care and support planning tool
Rebecca Jarvis & Hugo de Waal, Health Innovation Network
Development of a Dementia Peer Support Resource Pack Amy
Semple, Health Innovation Network, Nada Savitch, Innovations in
Dementia
Evaluating the impact of dementia specific education on the
knowledge, skills and attitudes of practitioners in primary
care
Sarah Smith, University of Bradford
2.4 [BECKBURY 1] YOUNGER PEOPLE WITH DEMENTIA
2.5 [PATTINGHAM] ACUTE HOSPITAL CARE
The Stockport Young Onset Dementia Service:
creating a community based, person centred service
out of existing resources
Ruth Chaplin & Erika Slater, The Meadows
Support from clinic to community for people with
young onset dementia Anna Eden, Young Dementia UK
Developing a service for younger people living with
dementia: Initial reflections
Christina Maciejewski & Mark Jones, Cardiff & Vale
University Local Health Board
Family experiences of living with bvFrontotemporal
Dementia (bvFTD): implications of a qualitative
longitudinal research study for practice Jenny La
Fontaine, University of Bradford. Chair: Hilda Hayo
Chair: Sian Jones
From pain stories to clinical decision making:
Bridging the gap in acute hospital dementia care
Reena Lasrado, University of Manchester
The dementia-friendly Butterfly Room within A&E at
Airedale Hospital Dr Meg Crossley & Maria Moloney,
Airedale NHS Foundation Trust
Demonstrating that dementia friendly design
improves outcomes on an acute medical ward
Gary Cleeve, Health Education Wessex
Have patient passports and life stories become a ‘tick
box’ exercise? Jeni Bell, University Hospital Southampton
NHS FT, Sarah Mould, Dementia Training Company
2.6 [NEWPORT 1]
WORKSHOP: SUPPORT FOR CARERS
Striding forward: ‘I might be laughing now’
Workshop to include film showing, presentation and
discussion highlighting the importance of an involvementled approach in supporting the health and well-being of
family carers and those living with dementia. Presented
by Diane Hinchliffe, independent emotional well-being
practititioner and family carers from the Striding
Forward group. Chair: John Killick
16.20-16.50 REFRESHMENTS & EXHIBITION VIEWING
16:50-18:00 PARALLEL SESSIONS:
3.1 [MAIN HALL] QUESTION TIME PANEL
A chance to have your say, seek opinions and
learn from expert discussion on pressing
issues in dementia care.
Panel to include:
Andrea Sutcliffe (CQC)
Professor Martin Prince
Professor Rose Marie Dröes
Jeremy Hughes, David Sheard
Professor Murna Downs (chair)
3.4 [BECKBURY 2] CULTURE & ETHNICITY
Promoting cultural competency in the
domiciliary care workforce supporting people
living with dementia – report from a pilot
project Michal Herz & Kate Read, University of
Worcester
Dementia, culture and ethnicity
Julia Botsford & Karen Harrison Dening,
Dementia UK The Reminiscence Tea House
Story - Developing Dementia Peer Support and
Information for the UK Chinese Community
David Truswell, Central and North West London
NHS Foundation Trust
Chair: Buz Loveday
3.2 [NEWPORT 2] ACTIVITY & COGNITIVE STIMULATION
THERAPY Chair: Sarah Reed
Improving mental and physical wellbeing through sporting
memories Tony Jameson-Allen & Chris Wilkins, Sporting
Memories Network
Creating alliances to support the development of peer
support Henry Mooney, Everton Football Club & Tommy Dunne
The use of nature in Cognitive Stimulation Therapy Wendy
Brewin, Sensory Trust & Laura Walker, Memory Matters South West
Making a difference with Cognitive Stimulation Therapy Helen
Davies, South Staffordshire & Shropshire Foundation Trust
3.5 [BECKBURY 1] COMMISSIONING & SERVICE
PLANNING Chair: Professor Steve Iliffe
Dementia Roadmap one year on Dr Jill Rasmussen,
SE Coast Strategic Clinical Network & Barbara
Stephens (Dementia Pathfinders)
Development of tools to improve quality of dementia
care across all settings Dr Amanda Thompsell, South
London & Maudsley NHS FT & Ruth Evans, NHS England
Partnership working to improve dementia
diagnosis and care both pre and post diagnosis
across Dorset Carlvin Josephs, NHS Dorset CCG &
Derek Dodd (Alzheimer’s Society).
The Genio Dementia Programme: Working in
partnership to transform dementia services Fiona
Keogh, Genio, Ireland.
3.3 [NEWPORT 1] WORKSHOP: CREATIVE THINKING
Applying creative thinking and innovative approaches
in dementia care In this interactive workshop Ladder to
the Moon and City University London will demonstrate
the impact of their creative approaches to dementia
care. Participants will then apply different creativity
techniques to common challenges they face to develop
new ideas for providing person-centred care cultures.
Facilitators: Neil Maiden & Alise Kirtley, City University,
London; Chris Gage & Shula Hawes, Ladder to the Moon
3.6 [PATTINGHAM] STAFF DEVELOPMENT – CARE HOMES
Evaluation of a person-centred cascade training project to
support small care homes in the East Riding Jan Robins,
University of Bradford & Fiona Macmillan, Skills for Care
The impact of the Admiral Nurse in promoting the dignity of
care home residents Isabelle Latham, University of
Worcester & Victoria Elliot, Orders of St John Care Trust
Challenging the tick box culture of training: evaluating the
perceptions of care home staff on the barriers and facilitators in translating dementia training into practice
Lyn Sheldrake, Sunrise Senior Living
Improving end of life care for people with dementia
Maggie Stobbart-Rowlands & Barbara Walker, Gold
Standards Framework Centre Chair: Claire Surr
18.00-21:00 SPECIAL 1OTH BIRTHDAY EVENT:
A CELEBRATION OF THE ARTS IN DEMENTIA CARE All welcome
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Thursday 5 November programme
08:00-09:10 CONFERENCE REGISTRATION
08:30-09:00
EARLY BIRD
SESSIONS:
EB1.1 [NEWPORT 1] Yoga and well-being Clare Morris, yoga teacher and psychotherapist
EB1.2 [BECKBURY 1] Delivering person-centred continence care Phil Benson, Community Integrated Care
EB1.3 [BECKBURY 2] The experiential impacts of cognitive function tests upon men with dementia and their carers
Edward Tolhurst, Staffordshire University
EB1.4 [NEWPORT 2] Person-centred approaches in ‘late stage’ dementia care Luke Tanner, Dementia Care Matters
EB1.5 [PATTINGHAM] Dance and music Malcolm Burgin and Gill Roberts, Alive! Activities
[NEWPORT 1] Lunchtime 13.30-14.00: Dementia Friends – the UK’s biggest social action movement on dementia. Dianne Beaumont,
Alzheimer’s Society, will lead a fun, interactive session that will give you an insight into what those 1.3 million badges really mean.
4.1 [MAIN HALL] SUPPORT & CARE AT HOME
4.2 [NEWPORT 2] ACUTE HOSPITAL CARE
4.3 [PATTINGHAM] SYMPOSIUM: CARE HOMES
Homecare that gives you wings: the journey from
task & time to time that matters
Colin Richings & Sian Gardner, Monmouthshire
County Council, Peter Priednieks & Gilly Brooks,
Dementia Care Matters
Using life history as part of a holistic toolkit to
inform care planning and improve outcomes for
people with dementia
Zoe Elkins & Rachel Wort, The Good Care Group
Supporting family caregivers in meeting the needs
of people with dementia living at home presenting
with behaviours that challenge
Alan Howarth & Debbie Sells, Northumberland Tyne
& Wear NHS FT.
Chair: Professor Bob Woods
Facilitating change and practice development in
acute hospital dementia care
Hilary Woodhead & Emma Hewat, Support in Dementia
A dementia specific model of care for the acute
setting Becky Lambert & Danielle Wilde, Royal Free
London NHS Foundation Trust
Paving the way: Real solutions for improving
hospital care Gavin Terry, Alzheimer's Society
Services after hospital: Action to develop
recommendations - the SHARED study
Carole Mockford, University of Warwick
Chair: Rachel Thompson
IMPROVING HEALTH CARE IN CARE HOMES
The discussion will focus on proactive approaches
including: using telemedicine to support care home
staff (Rachel Binks, Airedale Partners Vanguard); the
role of the admissions process in detecting acute
deterioration in residents’ health (Jenny Adams,
University of Bradford); establishing care pathways
for commonly occurring health conditions (Dr
Catherine Powell); developing optimal approaches
to enhancing knowledge and skills of nursing home
staff (Dr Alan Blighe); and the role of partnership
working with family carers. Chair: Professor Murna
Downs, University of Bradford.
4.4 [BECKBURY 1] ARTS IN DEMENTIA CARE
4.5 [BECKBURY 2]
SYMPOSIUM: DEMENTIA FRIENDLY COMMUNITIES
4.6 [NEWPORT 1]
SYMPOSIUM: PERSON-CENTRED CARE
Dementia friendly communities:
evidence and learning from four UK projects
Philly Hare, Programme Manager & Natalie Gordon,
Policy and Research Intern, Joseph Rowntree
Foundation, Wendy Mitchell, York Minds & Voices
Although Dementia Friendly Communities are
growing in strength and number, the evidence base
is as yet underdeveloped. JRF has funded and
evaluated demonstration projects in York, Bradford,
Londonderry and East Sutherland – as well as in
their own organisation. They will present the results
at this session, and some films, and invite
discussion.
What can professionals learn from people with
dementia?
In this symposium people with dementia will talk
about their experiences of symptoms, diagnosis
and post-diagnosis support, and discuss with
professionals how clinical and social support for
people with dementia can be improved.
Chair: Lucy Whitman, editor of a new book: ’People
with dementia speak out’
A New Stage: dementia-friendly performances at
West Yorkshire Playhouse
Nicky Taylor, West Yorkshire Playhouse
House of Memories: a museum training
intervention Claire Benjamin & Carol Rogers,
National Museums Liverpool Art amongst the
teacups - creating a volunteer arts befriending
scheme Kathryn Gilfoy, Westminster Arts
Training for expressive and visual artists in
reminiscence in dementia care
Pam Schweitzer, European Reminiscence Network
Chair: Buz Loveday
10:25-11:00 REFRESHMENTS & EXHIBITION VIEWING
11:0011:50
MAIN
HALL
PLENARY
SESSION:
PLEN 3
Towards more
integrative, personcentred dementia care
ALT 1 [NEWPORT 2] Chair: Maria Parsons
LATER STAGE DEMENTIA CARE:
Professor Rose-Marie
Dröes, Dept. of
Psychiatry
VU University Medical
Center, Amsterdam
Chair:
Professor Dawn Brooker,
University of Worcester
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SESSIONS RUNNING CONCURRENTLY:
Namaste Care as a Hospital Service: A Pilot Study Kimberley St John, Guys and St Thomas NHS FT
Sensor e-Textiles: dementia and wellbeing Professor Cathy Treadaway, Cardiff Metropolitan University
ALT 2 [NEWPORT 1]
WORKSHOP: READING POETRY WITH PEOPLE WITH DEMENTIA
Reading poetry in groups of people with dementia in care homes, day centres and hospital wards provides
stimulus, enjoyment and social cohesion. The poems chosen come from all periods, some by people with
dementia themselves. In this workshop John Killick, poet and author, and Helen Bate, Pictures to Share, will
run a typical session for the participants, followed by a discussion of positives and pitfalls of the activity so
that they can introduce it in their own workplaces.
Thursday 5 November programme
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5.1 [MAIN HALL] LIVED EXPERIENCE OF DEMENTIA
Dementia is more than memory: issues around
sensory challenges Agnes Houston, living with
dementia & Donna Houston, Deal with Dementia
Travelling with dementia Josie O’Sullivan, Scottish
Dementia Working Group Dementia Diaries: How
technology is being used to amplify the voices of
people with dementia Paul Myles and Laurence Ivil,
On Our Radar.
Chair: David Sheard
5.4 [LUDLOW 1] CONNECTING COMMUNITIES
How to hear from the less-often heard: Alzheimer’s Society
Connecting Communities Project with BAME groups in the
UK Tim McLachlan & Alli Anthony, Alzheimer’s Society; ‘Time
for dementia’ - a novel clerkship programme Sophie
Mackrell, Alzheimer’s Society & Stephanie Daly, Brighton &
Sussex Medical School; Peterborough Dementia Resource
Centre (one–stop hub) Claire Stockwell-Lance
& Kevin Bowyer, Alzheimer’s Society
Chair: Julia Botsford
5.6 [BECKBURY 2] SYMPOSIUM: CARERS
From strength to strength: Family carers matter too
Symposium with Ruth Eley, Pat Broster and Jean Tottie,
Life Story Network, Jill Pendleton, Merseycare NHS Trust,
Louise Marks, Carers Trust, Hilary Tetlow, former carer
5.2 [NEWPORT 1]
WORKSHOP: THE NEWCASTLE MODEL
5.3 [NEWPORT 2]
AVOIDING HOSPITAL ADMISSIONS
Revisions to the Newcastle model: treating behaviour
that challenges In this workshop with the original
developers of the Newcastle model, up-to-date developments will be presented and discussed. Led by
Professor Ian James, Roberta Caiazza and Karin Smith,
Northumberland, Tyne and Wear NHS Mental Health FT
Recognising and responding to dementia in the
ambulance service: Training and training needs Sarah
Voss, University of the West of England
Development of Dementia Home Treatment Team (Shield)
in Telford Julia Jones & Karen Lockley, Telford & Wrekin
Memory Service
Setting up a crisis and home treatment service
(Response Enhanced Assessment Crisis and
Treatment-REACT service) for older adults (dementia
and functional) and Economic Evaluation Lucy Young &
Dr Sabarigirivasan Muthukrishnan, REACT Cardiff & Vale
UHB Craven Care Homes Quality Improvement Support
Project Sharon Louise Robinson, specialist nurse practitioner,
Craven, North Yorks Chair: Dr Amanda Thompsell
5.5 [PATTINGHAM]
TECHNOLOGY IN DEMENTIA CARE
5.7 [BECKBURY 1]
DEMENTIA FRIENDLY COMMUNITIES
Match.com: People living with dementia leading
innovation to produce solutions that fit the real
challenges that dementia brings Jill Pendleton
(Mersey Care NHS Trust), Gina Shaw/Tommy Dunne,
Service User Reference Forum, Liverpool
Music Mirrors Heather Edwards, Norfolk & Suffolk NHS
FT
Re-MindMe: Bringing Tech to dementia care Simon
Hooper & Etienne Abrahams, Health-Connected Ltd
Something Sensory inspired by people living with
dementia Nina Evans & Emma Beadle, Designability
Chair: Professor Mary Marshall
The Alive Inside education project – bringing a
hospital and a community together Lucy Frost,
Brighton & Sussex University Hospitals NHS Trust &
Sarah West (West Creative)
Age UK - Making mainstream services accessible to
people with dementia Steve Milton, Innovations in
Dementia & Neil Mapes, Dementia Adventure
Old, grey, and locked away – Running a Cognitive
Stimulation Therapy group in a prison environment
Gemma Williams, HMP Norwich & Judith Farmer, Forgetme-Nots
Dementia: learning across generations
Grace Stead, Sheffield Dementia
Action Alliance
Chair: Toby Williamson
13:10-14:10 LUNCH, POSTER & EXHIBITION VIEWING
14:10-15.20 PARALLEL SESSIONS:
6.1 [MAIN HALL]
PERFORMANCE & DISCUSSION
6.2 [BECKBURY 1]
SYMPOSIUM: DEMENTIA FRIENDLY COMMUNITIES
6.3 [NEWPORT 2]
QUALITY OF LIFE IN CARE HOMES
Collecting stories, making memories – a play
about life story by Haylo Theatre and
EDUCATE
By popular request, a repeat visit to
congress by Haylo Theatre – Hayley Riley and
Louise Evans – and the EDUCATE group of
people with dementia and carers in
Stockport, who worked together to produce
this powerful drama and educational tool
Supporting and incentivising community progress – how we
recognise, measure and share our success
Nikki Crowther, Head of Community Engagement, Alzheimer’s Society
Building a Dementia Friendly Telford & Wrekin
Cathy Bowler, Chair of Telford & Wrekin Dementia Action Alliance, with
Maureen McGregor (Ironbridge) & Ann Shaw (West Mercia police)
A personal perspective - why it’s important to live in a dementia
friendly society
Joy Watson, Alzheimer’s Society Ambassador
Chair: Professor Bob Woods
Doll therapy in dementia care
Gary Mitchell & Joanne Agnelli,
Four Seasons Health Care
Outcomes of cognitive stimulation therapy
programme in care homes Angie Williams &
Donna Hathaway, The Orders of St John Care
Trust
‘What’s love got to do with it?’ Sally
Knocker, Dementia Care Matters Chair:
Susanna Howard
6.4 [BECKBURY 2]
CARE HOMES: FAMILY, COMMUNITY & VOLUNTEERS
Volunteering in care homes - what is the evidence
of impact and how can it be developed? Matthew Hill
and Tracy Whittle, National Council for Voluntary
Organisations; Our House: involving the local
community Ruth O’Dea & Carol Wootton, The Orders
of St John Care Trust; Light bulb moments for care
homes Sarah Penney, Ulster University
Chair: Polly Kaiser
6.5 [PATTINGHAM] CARERS & FAMILIES
6.6 [NEWPORT 1] WORKSHOP: LEADERSHIP
An example of leadership and collaborative
working Elaine Ferris, The Good Care Group
Social care responses to caring for someone with
dementia Jo Moriarty, King's College London
Developing a specialist Admiral Nursing Service
within a local authority setting Amy Pepper
& Sandra Roche, London Borough of Sutton
Getting Along – Filling the peri-diagnostic gap
Damian Murphy, Innovations in Dementia
Chair: Hazel Heath
‘Well-led’ is now one of the Care Quality
Commission’s six key criteria for assessing care
homes. In this expert-led workshop participants will
discuss what in their experience are the key steps
to effective leadership in care homes.
Led by: David Sheard, Dementia Care Matters & JoAnne Wilson, Matron/Manager, Poppy Lodge, Galanos
House, Royal British Legion
15:20 CLOSE
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Added attractions
ADDED ATTRACTIONS AT CONGRESS
TUESDAY 3 NOVEMBER
DRINKS RECEPTION, 19:30-20:15
All welcome – in the exhibition hall.
WEDNESDAY 4 NOVEMBER
BOOK SIGNING
At the end of parallel session 3.1 in Beckbury 2, Julia Botsford and Karen Harrison
Dening will sign copies of their new book Dementia, Culture and Ethnicity: Issues
for All, published by Jessica Kingsley Publishers.
Imagine Digital: Roma Patel from the Mixed Reality Lab will describe and
demonstrate her work with people living in care homes, making a series of crafted
objects with the addition of digital technology and making sensory boxes.
Westminster Arts Resonate programme: This exhibition shows artwork from a
recent mosaic project at St Vincent’s day centre in Hammersmith and Fulham. DEMENTIA FRIENDS CHAMPIONS DROP-IN
Le Peregrinazioni or The Wanderings: Commissioned by Westminster Arts, this is a
Wednesday afternoon from 4.20pm at the Alzheimer’s Society stand in the main
short film made by artist David Little following a one to one project with
exhibition hall. Are you a Dementia Friends Champion? A glass of champagne and a gift
Domenica Moscato. Since the death of her husband, and with advancing
is waiting for you at our stall as a thank you from the Dementia Friends team for all the
dementia, Domenica continues to produces huge numbers of extraordinary
work you have done as a Champion in your community. So stop by and say hello!
abstract drawings and paintings. 18.00-21.00 SPECIAL 10TH BIRTHDAY EVENT:
A CELEBRATION OF THE ARTS IN DEMENTIA CARE [LUDLOW 1]
Making Space: Seen from the outside, this installation by Telford and Wrekin
Councils Creative Development team and its partners has limited clues as to
what’s going on inside. People are the same having a landscape of experience
Please join us at this special event to celebrate the 10th Birthday of the UK
Dementia Congress. There will be a drinks reception and light buffet, as well as an internally. You are invited to take a closer look inside at this installation created
specifically for the conference. exciting evening of dance, drama, film, exhibitions and short workshops
celebrating the arts in dementia care. The Person Within: An exhibition of provocative images made by people living in
Haylo Theatre: Back by popular demand, Hayley and Louise bring interactive pres- eight Central & Cecil care homes. Salmagundi Films worked with residents and
entation and performance and a workshop exploring the significance of memories. staff to produce a collection of 35 vibrant digital self-portraits.
Mrs Minteeda’s Marvellous Mind: Bright Shadow bring their performance installa- Our Time: Creativity and support for people with dementia and their partners at West
tion that puts you in the shoes of a person with dementia, illustrating the physical Yorkshire Playhouse. Connecting with nature is food for the soul: explore a range of
props to stimulate the sense and the imagination. This workshop will explore the
and emotional impact of dementia-related impairments. words shared at our stall through improvised movement and creative expression.
Getting On: New Brewery Arts with the Orders of St John Care Trust (OSJCT),
funded by the Baring Foundation, have created a piece of public art for the
enjoyment of older people in care homes. Automata artist Robert Race worked
with people living in Millbrook Lodge to create their own small automata which
inspired his final piece exhibited here.
Dance and Dementia CIC: Dance and Dementia CIC aims to increase wellbeing by
providing opportunities for people affected by dementia to engage physically,
socially and emotionally through movement and dance. Everyone is invited to join
in our workshops.
Alive Activities! Dance Alive! sessions are based upon the Biodanza system and
participants are invited to express themselves through movement and stillness,
silence and sound. Everyone is invited to jump in and try out this session in a
supportive, playful environment. The Ignite Programme: Engage & Create are bringing a new Ignite session to
congress for attendees to experience. Using artworks from gallery and museum
collections, the sessions are suitable for people at all stages of dementia.
Shaping the Feelings, Celebrating the Achievements: John Killick gives two
short readings of poems drawn from twenty-two years of writing down the words
of people with dementia. They come from those with the condition in England,
Scotland, Wales and Ireland, and from individuals and groups in care homes,
hospital wards, day centres and their own homes. All the poems have been
published in one or other of the eight books John has edited.
Dementia and Imagination: This visual art exhibition is from a three-year multidisciplinary research project at the University of Bangor, ‘Can art improve life for
people with dementia and their carers?’
THURSDAY 5 NOVEMBER
13.30-14.00: DEMENTIA FRIENDS – THE UK’S BIGGEST SOCIAL ACTION MOVEMENT ON DEMENTIA [NEWPORT 1]
Dianne Beaumont, Alzheimer’s Society, will lead a fun, interactive session that will give you an insight into what those 1.3 million badges really mean.
EVERY DAY
POSTER PRESENTATIONS
Important and innovative projects and services are featured in our poster display, in the Ludlow foyer/exhibition area.
We warmly welcome people living with dementia and their carers to this Congress
We very much appreciate the contribution you bring to the whole event, and will do our best to ensure you spend an enjoyable and rewarding
few days with us. Please feel free to ask our staff for help or guidance at any time. There is a quiet area with soft seating reserved for you, on
the mezzanine level in the poster display area; staff will be able to direct you there. If you would like us to reserve a place for you in any
parallel session, please let us know (we are also happy to reserve places for any other delegates who may be less mobile).
With thanks to... The 10th UK Dementia Congress has been planned in consultation with a group of advisers including: Professor Dawn Brooker, University of Worcester; Professor Murna
Downs, University of Bradford; Dr Nori Graham, Age Action Alliance; Hazel Heath, JDC Consultant Editor; Professor Steve Iliffe, University College London; the Alzheimer’s Society;
Professor Jill Manthorpe, King’s College London; Lynne Phair, independent consultant nurse and expert witness; Nada Savitch & Rachael Litherland, Innovations in Dementia; Graham
Stokes, Bupa Care Homes; Claire Surr, Bradford Dementia Group; Jude Sweeting, Ladder to the Moon; Rachel Thompson, Dementia UK; Professor Bob Woods, University of Bangor.
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Congress supporters
ACTIVE MINDS
CALL TO MIND
Active Minds was set up to create evidence-based and age-appropriate
resources to allow people living with dementia to continue to enjoy their
hobbies and pass times, and do so in a dignified way
Call to mind… is a specially designed board game, trialled and developed
with a team at UCL. It’s a journey of discovery for those living with
dementia. It’s engaging, fun and informative. This tool stimulates
memories, encourages conversations, relieves boredom and boosts selfesteem. Can be used with family friends and carers at home, or in
professional settings.
ALZHEIMER’S SOCIETY
Alzheimer’s Society is the UK’s leading support and research charity for
people with dementia and their families. We provide information and
support services and fund innovative research. We also deliver education
and training to professionals.
COMMUNITY INTEGRATED CARE
Community Integrated Care is one of Britain’s most successful social care
charities, supporting over 5000 people across England and Scotland. This
year we have pioneered innovation in dementia care – developing integrated
models of support with our CCG and local authority partners, investing in
dementia-friendly environments and championing person-centred
approaches to support. Find out more: www.c-i-c.co.uk / @ComIntCare
ANCHOR
Anchor is England’s largest not-for-profit provider of housing and care
for older people
DAILY SPARKLE
The Daily Sparkle reminiscence newspaper is the U.K.’s leading activity
resource for people living with dementia. Come visit our stand and
collect some free samples. The Daily Sparkle is achieving some amazing
results, measured by an independent market research company. Find out
why The Daily Sparkle is so well loved.
BARCHESTER HEALTH CARE
In Barchester’s Memory Lane communities, we help individuals in our
care to continue living their lives as independently as possible by
working alongside them rather than for them, and by promoting positive
memories wherever we can.
DEMENTIA CARE MATTERS
We are a leading global dementia care culture change organisation. We
provide consultancy, learning development, training resources and
practice based research. We believe a new culture of care comes from
focussing on a model of emotional intelligence.
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DEMENTIA PATHFINDERS
JESSICA KINGSLEY PUBLISHERS
Dementia Pathfinders Community Interest Company is a social enterprise
delivering education and learning for people working in the dementia
care field and providing therapeutic care and support for people with
dementia and their families. Dementia Pathfinders works in collaboration
with the Royal College of General Practitioners to host the Dementia
Roadmap. http://dementiaroadmap.info/
Jessica Kingsley Publishers is an independent, award-winning company
with an international reputation for publishing theoretically rigorous yet
accessible books for professionals, academics and students. We are
proud to have 7 titles chosen for the Reading Well Books on Prescription
for Dementia Scheme. Please visit our stand to browse our extensive
selection of titles.
DEMENTIA UK
Family carers and people with dementia are at the heart of everything
we do. We provide Admiral Nurses, specialist dementia nurses who give
practical and emotional support to families affected by dementia.
JOSEPH ROWNTREE FOUNDATION
The Joseph Rowntree Foundation is an independent organisation working
to inspire social change through research, policy and practice. The
research programme Dementia Without Walls draws together JRF’s
learning about building a society which is more inclusive, welcoming and
accessible to people with dementia.
HAMMOND CARE
HammondCare is an independent Christian charity specialising in
dementia and aged care, palliative care, rehabilitation and older persons'
mental health. Internationally we deliver a range of programs including
specialist dementia design schools, audits and endorsements; bespoke
education, training, conferences and dementia consultancy to aged,
acute and community care. We are focused on improving the lives of
people living with dementia.
LADDER TO THE MOON
We’re experts in leading creativity in the care sector, and we’re
passionate about wellbeing. We deliver change through CQC recognised
training and consultancy. We know that everyone living and working in
care can have a great quality of life and we bring this about by
supporting care cultures to be person-centred, open and vibrant.
HAWKER PUBLICATIONS
Publishers of Caring Times, Journal of Dementia Care (JDC) and dementia
books, as well as organisers of many care and dementia conferences and
events across the UK, including the National Care Awards and National
Dementia Care Awards – see www.careinfo.org. Launched at the 10th UK
Dementia Congress is the new JDC website www.journalofdementiacare.co.uk
which offers three levels of member subscriptions designed to meet the
needs of everybody working in dementia care. Please visit the Hawker stand.
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LES IVES ILLUSTRATION
Les Ives Illustration produces Reminiscence activity products for people
living with dementia. Including books, memory card packs, posters and
age appropriate colouring sets. A nominated supplier to BUPA care
homes, Alzheimer branches, care homes, day centres and individual
carers across the UK. Jigsaws and food themed memory card sets will be
available in the New Year.
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LEWY BODY SOCIETY
PATHWAYS THROUGH DEMENTIA
Run solely by volunteers, the Lewy Body Society (reg charity 1114579)
funds research into and raises awareness of Lewy body dementias, both
dementia with Lewy bodies and Parkinson’s disease dementia. Founded in
2006 in the UK, it is the only charity in Europe dedicated solely to Lewy
body dementias.
Pathways Through Dementia is a charity which specialises in the legal
aspects of the dementia journey, for example paying for care, managing
finances, welfare benefits, and community care laws relevant to our client
group. They run a legal helpline and deliver talks and training to a range of
audiences.
PICTURES TO SHARE
MBI SOCIAL CARE
A growing provider, MBi have adapted the ‘triangle of care’ model to
foster and sustain therapeutic relationships between residents, professional carers, and the family and friends network. We believe person
centeredness is only possible when the emotional, physical, and social
needs of an individual are met. This is our mission.
Pictures to Share is a Social Enterprise publishing books for people with
dementia. The books are designed to provide a means of communicating
in an enjoyable and meaningful way. There are currently 14 titles
including our latest title ‘Inessential Things’ which combines the magic of
poetry with beautiful images.
RIS
MYBRAINBOOK
MyBrainBook is a new way to provide the best support to people with
dementia, their families and carers. The tool puts people with dementia
at the centre of decisions about their care, helping to manage their lives
and remain independent longer through support planning, practical
advice and community-based care networks.
For more than 38 year RIS Healthcare has been dedicated to providing a
wide range of products designed to improve oral care. RIS is the UK
distributor of the BioXtra range of products for managing symptoms of
dry mouth. RIS Products have launched oraNurse Unflavoured
Toothpaste for a wide range of people who have an intolerance to mint.
SCIE: The Social Care Institute for Excellence
SCIE is a leading improvement support agency working with adults’,
families’ and children's care and support services across the UK.
We offer dementia awareness training and resources to support people
with dementia including the Dementia Gateway, Social Care TV and online
learning. Visit www.scie.org.uk
ONTEX
Ontex will be showcasing our RCN Accredited Dementia e-learning
module. This module will give you an understanding of Dementia and an
awareness of how people with this disorder are effected. You can find our
12 RCN accredited e-learning modules at
www.thecontinenceinstitute.com
We hope you enjoy learning with iD Expert
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SCIE: THE SOCIAL CARE INSTITUTE FOR EXCELLENCE
SCIE is a leading improvement support agency working with adults’,
families’ and children's care and support services across the UK.
We offer dementia awareness training and resources to support people
with dementia including the Dementia Gateway, Social Care TV and online
learning. Visit www.scie.org.uk
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SHAW HEALTHCARE
UNIVERSITY OF BRADFORD
Shaw healthcare are proud to be one of the UK’s largest leading
healthcare providers in the UK and are dedicated to providing a spectrum
of healthcare services, from comprehensive care packages to lower level
support in the community for the elderly and adults with physical,
sensory or mental health support requirements.
For over twenty years the School of Dementia Studies at the University of
Bradford (formerly Bradford Dementia Group) has been leading the field
in excellence in dementia research, education, training and practice
development to enhance the lives of people with dementia and their
families and to support the practitioners who care for them.
SHROPSHIRE DEMENTIA ACTION ALLIANCE
UNIVERSITY OF WORCESTER
Shropshire Dementia Action Alliance is a growing group of organisations
and individuals, including people with dementia and carers, dedicated to
making Shropshire a place for people to live well with dementia.
The Association for Dementia Studies is an active research and education
centre. Our multi-professional team are experts in the field of personcentred dementia care and support. Through research, education and
scholarship, we make a substantial contribution to building evidencebased practical ways of working with people living with dementia and
their families that enables them to live well.
TELFORD & WREKIN COUNCIL AND
CLINICAL COMMISSIONING GROUP
Enabling family carers to have greater resilience and be experts by
experience, through a programme of workshops offering peer support,
information, knowledge sharing and skill development.
WOLVERHAMPTON UNIVERSITY
Wolverhampton University has established The Centre for Applied
Research and Education (CARE) in Dementia. The centre oversees
research and education in dementia for internal and external partners.
Dementia education is also integrated into programmes, including Health,
Science, Sports and Social Care. For your bespoke training and research
requirements please visit http://www.wlv.ac.uk/research/researchinstitutes-and-centres/centre-for-health-and-social-care-improvement-c
hsci/care---centre-for-applied-research-and-education-/I
THOMAS POCKLINGTON TRUST
Pocklington works to bring about positive change to the lives of people
with sight loss. A central part of our work is to increase knowledge and
awareness of sight loss and our research initiatives aim to identify
practical ways in which we, and others, can improve people’s lives.
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Speaker biographies
SPEAKER BIOGRAPHIES
JENNY ADAMS
University of Bradford
Jenny started nurse training in 1978 and has worked with people across all ages as a
midwife and as a health visitor. She has been a lecturer in the School of Nursing since
2002 and was very fortunate to be given the opportunity to study for a PhD,
commencing in 2013 on a part time basis. The aim of the study is to improve the
recognition of acute physical deterioration in the health of nursing home residents
with particular reference to the role of admissions assessment and ongoing monitoring
of physical health.
the National Early Warning Score and a pathway for patients with sepsis. Rachel is
actively involved in the Intensive Care Society SSQ, and is now on the NAHP Committee.
In 2011, Airedale NHS Foundation Trust opened their Telehealth hub to support patients
with long term conditions.
ALAN BLIGHE
Alan is Research Programme Manager for the NIHR funded study Better Health in
Residents in Care Homes project, a collaborative project, led by the University of
Bradford, which aims to improve early detection of deterioration of health conditions
that can be easily treated in the home. Alan has research interests in healthy ageing,
FRANK ARROJO
care of vulnerable populations and memory and perception. He has experience of a
Former carer and member of tide ("together in dementia everyday")
diverse range of fields and techniques, including neuroscience, human behavioural
Frank cared for his mum who lived with vascular dementia for some 20 years and
studies, health economic analysis, project management and statistics. He has spent
eventually had to give up his career as a successful Business Manager to continue
caring for her at home. He struggled with little or no support for most of this time, the several years working for the UK and Welsh Governments, providing research and
only positive difference was being referred to an Admiral Nurse in the last 6 months of statistical expertise on major economic and social inclusion programs (respectively).
his mum’s care. Frank was an active supporter of the Carers’ Call to Action and now it’s
legacy tide (“together in dementia everyday”). He is involved in many national
JULIA BOTSFORD
initiatives and has established and runs two local carers groups.
Dementia UK
Julia Botsford is Research and Evaluation Admiral Nurse at the national charity
Dementia UK. She has over thirty years' experience as a nurse and in that time has
GILL BAILEY
held a variety of posts incorporating clinical, teaching and research roles. In 2011 she
Helen Sanderson Associates
Gill Bailey trained initially as a learning disability nurse and has worked with a range of completed a Doctorate at Northumbria University with research which explored the
impact of dementia on partners of people with dementia within African Caribbean and
providers and commissioning units across Adult Health and Social Care for 30 years.
She has worked with Helen Sanderson Associates since 2000. In the last fifteen years Greek Cypriot communities. Julia has presented and published widely. She is currently
Honorary Associate Professor in Mental Health at Middlesex University.
her work has focused on enhancing the delivery of personalised support to older
people and people living with dementia. She has worked with providers to introduce
Individual Service funds in residential and homecare services. Gill also works part-time WENDY BREWIN
with Alternative Futures Group as their personalisation lead, an external provider of
Sensory Trust
health and social care supporting 1200 people who have a learning disability.
Wendy Brewin has over 20 years of experience connecting people of all ages and
abilities with outdoor environments through practical and creative approaches. Initially
specialising in creative community consultation approaches, her work since 2006 has
EMMA BEADLE
focused on enhancing the quality of life for people living with dementia in both
Designability
Emma Beadle's qualifications include a BA (Hons) Printed Textiles from Loughborough residential and domestic settings. Through the Creative Spaces project Wendy demonstrates how human connection with nature can be a coping mechanism for living with
University (2009) and Foundation Art and Design, London College of Fashion (2006).
Since then she has acquired considerable experience of working with people living with dementia and support greater social, physical and mental activity. Activities and
resources are embedding nature into people’s daily lives in subtle ways but with signifdementia and their carers in a variety of roles. Her role at Designability was to
icantly positive impact.
facilitate and support consultation and evaluation work with users, carers and health
professionals. She has combined her background in art and textiles with her recent
experience in the field of dementia in Designability's Sensory Project. Emma has
recently started studying for her PGDip/MSc Occupational Therapy at London
Southbank University.
DAWN BROOKER
Association for Dementia Studies, University of Worcester
Professor Dawn Brooker (PhD C Psychol clin) is internationally recognised for scholarship
in practice development of person-centred dementia care. She is the director of the
Association for Dementia Studies at the University of Worcester in the UK where she
PHIL BENSON
leads a team dedicated to improving the quality of life for people affected by dementia.
Community Integrated Care
Recent research includes developing practice in person-centred approaches for people
Phil Benson is a Service Manager working for Community Integrated Care. Phil has
taken the lead on many projects to support services in delivering personalised support living with dementia at home, in care homes, hospitals and housing; Care fit for VIPS and
and promote best practice in dementia care. He is passionate about life story work and Stand by me toolkits; understanding the role of care culture and how to impact change;
the role it plays in getting to know a person and supporting them in a meaningful, life- providing alternatives to anti-psychotic medications; the Enriched Opportunities
Programme; early intervention and dementia friendly communities. She recently
enhancing way. Next year, Phil will be managing Community Integrated Care’s new
completed work funded by an EU Joint Action on developing evidence-based recommendementia specialist service, Eachstep Blackburn.
dations on timely diagnosis as part of the ALCOVE programme. She is also the UK lead on
a JPND funded programme to implement and evaluate the Dutch Meeting Centres for
NEENA BILKU
people with dementia and their carers across Europe. She has long-established working
BME United Ltd
relationships with practitioners and scholars worldwide and has recently spearheaded an
For the past 10 years Neena Bilku has been working for BME United Ltd, as a
international movement: Global Action on Personhood (GAP) in Dementia Care.
Community Engagement Coordinator for Stop Smoking Service and EPP (Expert patient
program). Due to her work in this field she has been working actively with diverse
PAT BROSTER
ethnic communities and collaborating with people who are living with long term
The Life Story Network
conditions, informal carers and dementia care professionals.
Pat established a successful event management company spanning twenty years and
has since used this experience to support Third Sector organisations to improve the
RACHEL BINKS
health and wellbeing of local communities and social enterprises. Pat currently chairs
Airedale Partners Vanguard
the Liverpool Dementia Action Alliance Transport Group, is an invited participant to
Rachel qualified as a nurse at St. James’s Hospital, Leeds and took up her present post Public Health England Governance Board on Dementia and a former carer of her
as a Nurse Consultant in 2000. At Airedale, she introduced the Early Warning Score for mother who had dementia. Pat is now developing and leading the national involvement
recognising patients becoming acutely ill and leads a 24/7 nursing team who respond
network ‘tide’- together in dementia everyday; and contributing to creating dementia
to these patients, prevent further deterioration and educate staff. She helped develop friendly transport in Liverpool.
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Speaker biographies
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MALCOLM BURGIN
GARY CLEEVE
Alive!
Malcolm Burgin is passionate about people, their lives, and their experiences. He loves
being able to facilitate a reconnection to what is important in people’s lives. Since
joining Alive! he has been instrumental in establishing the Activity Network Working
Group in Dorset and co-facilitates the Bournemouth Dorset and Poole Activity Coordinators Forum with Partners in Care, a project he will be replicating in Hampshire and
Wiltshire over the coming months. Malcolm manages the Russell Cotes 'Museums to
You' project in Bournemouth - a collection-based outreach learning programme for
vulnerable older people. Malcolm is a qualified teacher of Biodanza, a movement based
system of human development and integration.
Salisbury NHS Foundation Trust/Health Education Wessex
Gary Cleeve has worked in the NHS since 2000, registering as a nurse in 2005. He has
since worked in Acute Medicine, Community and Specialist Older Persons Services.
Gary is currently a trainee consultant practitioner in frailty.
ALEX BURTON
SYLVIA COWLEARD
CLARE COOK
Birmingham and Solihull Mental Health Foundation Trust
Clare Cook leads a team of occupational therapists working with people who have
dementia and /or mental health challenges. Her background has been in neurorehab
and neuropsychiatry before joining the older people’s service in Birmingham.
Lancashire Dementia Voices
Alex Burton served in HM Forces for 13 years, and worked as a Robot and Automation
Engineer and Development Consultant for the Ministry of Defence. He is now in medical
retirement, with a diagnosis of early onset Alzheimer’s in 2011. He founded Lancashire
Dementia Voices in 2014, a group which campaigns for patients and carers affected by
dementia, giving service users a voice at the heart of development and planning for
better dementia health services and community support. He is passionate about
improving end of life care and social support for patients and families, and for the
choice of home deaths of loved ones, supported by community-based services.
Dementia Pathfinders
Sylvia Cowleard is an Associate with Dementia Pathfinders. Sylvia contributed to a
Department of Health funded project in 2014/15 to develop training for the social care
workforce to meet the needs of people living with young onset dementia. Sylvia has
been providing training to the care sector for over 20 years, devising and delivering
creative, interactive and experience led programmes to bring about positive change in
practice. Sylvia has first-hand experience as a carer enabling her to relate to different
perspectives of care. She has experience of working with a variety of organisations
and runs her own consultancy business, Beeches Training.
JULIA BURTON-JONES
CLAIRE CRAIG
Julia Burton-Jones is an Associate with Dementia Pathfinders, working recently on a
project looking at the social care needs of people with young onset dementia and their
families where her role was listening to the stories of those affected by young onset
dementia and helping them contribute to social care training programmes. She edited
their accounts of life with young onset dementia for a new guide published by Dementia
Pathfinders in September 2015. She also works as dementia specialist project officer for
the Church of England Diocese of Rochester and as dementia facilitator with Music for Life.
Sheffield Hallam University
Claire Craig is a qualified occupational therapist and is currently co-director of the
interdisciplinary research centre, Lab4Living at Sheffield Hallam University. Claire has
spent the last eighteen years working alongside people with dementia. Her work has
focused particularly on the role of the arts and creative practice in promoting wellbeing for people living with dementia and their carers.
DEBBIE CARROLL
Airedale NHS Foundation Trust
Meg Crossley is Clinical Director for Multi Professional Education and Training and is
also a Director of postgraduate medical education.
Step Change Design
Debbie Carroll and Mark Rendell are garden designers based in Southampton and North
Wales. They are both passionate about the importance of the outside space in aiding
health and wellbeing. They teamed up in 2012 to answer a question about their sector’s
practices: why aren’t care home gardens being used more, even when they have been
redesigned? The research project confronted them with some uncomfortable home
truths about general design approaches with the care sector. They have formed Step
Change Design to promote their new approach based on their findings, ‘relationshipcentred design’. See www.stepchange-design.co.uk for more information.
RAY CARVER
Carer and member of tide (‘together in dementia everyday’)
Ray Carver was a health visitor, midwife and nursing leader but gave up her career to care
for her husband Dave who developed early onset dementia 18 years ago. Despite working
in health for many years she struggled to find age appropriate support. Dave now lives in a
nursing home. Ray is an active supporter of tide – ‘together in dementia everyday’, hosted
by the Life Story Network. Ray believes that tide's vision “To be the voice, friend and
future of all dementia carers” will highlight and maintain the focus on carers and benefit
all those affected by this life changing disease.
MEG CROSSLEY
HELEN DAVIES
South Staffordshire and Shropshire Foundation Trust
Prior to working in health services, Helen Davies worked for the local authority in
advising and assessing benefit claims. Wanting to work more directly in supporting
people’s independence and health needs, Helen left to study occupational therapy and
qualified in June 2014. Helen began her first OT post with South Staffordshire and
Shropshire Foundation Trust in September 2014, and has since enjoyed supporting
people with dementia through Telford & Wrekin Memory Service.
MURNA DOWNS
Murna Downs is Professor in Dementia Studies and Head of the University of Bradford’s
School of Dementia Studies, an international leader in person-centred care research,
education and training. She co-directs the University’s Alzheimer’s Society funded
Doctoral Training Centre on dementia care and services research focusing on transitions
in dementia care. Murna leads a programme of person-centred research currently
focused on developing and testing interventions to improve care in care homes. She has
published on a range of topics from early diagnosis through to end of life, most recently
RUTH CHAPLIN
on transitions in dementia care, emphasising the perspective of people living with
Young Onset Dementia team
dementia and their families. She is co-editor of the textbook Excellence in dementia
Ruth Chaplin is an Occupational Therapist in Pennine Care NHS Trust, currently working care: Research into practice and is series editor of the Jessica Kingsley Good Practice
as a Community Mental Health Team Manager in Older Adult mental Health Services in Guides on Dementia Care. Murna is a member of the National Institute for Health
Stockport. She is a co- facilitator of the Stockport EDUCATE Project (Early Dementia
Research Portfolio Development Group for Dementia and Neurodegenerative Diseases,
Users Co-operative Aiming to Educate). Her clinical work is mainly with people with a
serves on the Research Advisory Council of the Alzheimer’s Society, is an ambassador
young onset dementia.
for the Alzheimer’s Society and is an adviser to Alzheimer Europe.
ALICE CLARK
Alice leads on identifying and scoping services for people with dementia and carers,
requiring further development. She is currently conducting a review around future
service models in hospital services, Cognitive Stimulation groups and End of Life care
and support. Alice has several years’ experience working in health, social care and the
voluntary sector covering business development, project management and service
delivery. She has worked in community health teams, substance misuse, homelessness/housing services and criminal justice. Her focus has been developing care and
support services that are led by individual user and community needs, enabling people
to maintain independence, choice and control.
ROSE-MARIE DRÖES
VU University Medical Center, Amsterdam
Rose-Marie Dröes is Professor of Psychosocial Care for People with Dementia at the
Department of Psychiatry of VU University Medical Center in Amsterdam. She is head
of the research group ‘Care and support in dementia’ of this department and the
Regional Institute for Mental Health Care GGZ-inGeest in Amsterdam. She is a partner
of the Alzheimer Center VUmc and Member of the board of the Amsterdam Center on
Aging VUmc-VU. Since 2012 she has been a member of the advisory board of the
Quality Institute of the Dutch National Care Institute (ZIN). Dröes (human movement
scientist) wrote her PhD thesis (1991) on the psychosocial effects of movement
activation on people with dementia living in nursing homes. She was the developer of
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the successful Meeting Centers Support Programme for people with dementia and their
carers (1993) which has spread throughout the Netherlands and is now being
implemented in other European countries (UK, Italy, Poland; WWW.MEETINGDEM.EU).
She has conducted many national and European studies into psychosocial care in
dementia, including assistive technology, palliative care, caregiver training and
combined support programmes, and has published more than 200 articles.
psychology, with a special interest in dementia care. Prior to joining The Good Care
Group in 2009, Zoe was the strategic dementia lead for a large residential care home
provider, and has run high quality dementia care homes. Zoe is passionate about
promoting well-being for people with dementia and providing highly individualised care
and support with dignity and respect at its heart.
NINA EVANS
FRANCES DUFFY
Northern Health and Social Care Trust
Dr Frances Duffy is the Consultant Clinical Psychology Lead for Older People in the
Northern Health and Social Care Trust, Northern Ireland. Frances completed a DPhil
investigating Memory Deficits in Alzheimer’s disease. She lectured in Neuropsychology
and subsequently trained as a Clinical Psychologist followed by a Postgraduate Diploma
in Clinical Neuropsychology. She is a committee member of the BPS Faculty for the
Psychology of Older People (FPOP). Frances is clinical lead for the Memory Service and
Dementia Home Support Team and has developed the CLEAR Dementia Care model to
help understand and address the behavioural and psychological symptoms of dementia.
ANNA EDEN
Designability
Nina Evans is an Occupational Therapist specialising in Assistive Technology. Her
interest is in how inclusive product design can contribute to improving quality of life.
As a member of a multi-disciplinary team at the charity Designability, she has
contributed to a wide range of research and iterative development projects.
JUDITH FARMER
The Forget-Me-Nots
Judith has much experience in person-centred care and communication. Her two
special interests are in group Cognitive Stimulation Therapy (CST) and Dementia Care
Mapping. She has worked extensively with Bradford Dementia Group and other leading
training organisations.
Young Dementia UK
Anna Eden has worked for YDUK for 9 years and is now the Support Services Manager. ELAINE FERRIS
Previously she worked for 12 years for a charity supporting people with HIV/AIDS where The Good Care Group
many of the issues were the same – people facing a terminal condition with stigma and Elaine has worked for over 25 years in health and social care settings, including seven
social isolation.
years as General Manager and Registered Manager of a nursing home with a large
dementia community. Elaine has commissioned services and managed and coached
HEATHER EDWARDS
large teams. As Area Manager for The Good Care Group, she uses her experience to
promote dementia care excellence across Kent and Sussex working collaboratively with
Norfolk and Suffolk NHS Mental Health Trust (NSFT)
Heather Edwards studied music before teaching and lecturing at the University of East Anglia professionals and organisations to build working partnerships, uphold best practice
and to develop business across the region. Elaine sits on Kent Dementia Action Alliance
(1980-2014) and Cambridge, Madingley Hall. She is an honorary researcher with NSFT and
UEA. In 2012, having developed a neuro-rehab singing model for people living with dementia, steering groups and chairs a local Dementia Friendly Communities Forum.
she founded the voluntary organisation Come Singing to carry this work forward and now
leads 24 groups monthly in Norwich for Age UK, NSFT, NHS, BUPA, Barchester, Norse and
VERONICA FRANKLIN GOULD
other organisations. Music Mirrors arose from this experience and is a response to the need Arts 4 Dementia
for people to retain their individual voices, memories and identity even when words fail.
Veronica Franklin Gould, art historian and biographer, has followed her Reawakening
the Mind multiple arts workshop resource for early stage dementia, with a more
specialist Music Reawakening – Musicianship and Access for Early Stage Dementia
outlining practice in opera, orchestras and choirs nationwide. Arts 4 Dementia particiLife Story Network
pants’ artwork illustrates the Dementia Action Alliance annual report and Public Health
Ruth Eley is a founder Director and vice-chair of the Life Story Network. She delivers
England’s Little Book of Friendship. Veronica’s conferences provide platforms for
training in the use of life story work to improve relationship centred care for
vulnerable people and help keep them connected. As a Director of AESOP Consortium, leaders in arts and dementia. Awards include London 2012 Inspire Mark, Positive
she was a member of the project team that explored how to create a dementia friendly Breakthrough in Mental Health - Dementia Award 2013, Sunday Times “Change Makers”
2014 finalist and “Highly Commended” in Adult Learners Week Awards 2015.
city in York, funded by the Joseph Rowntree Foundation. Ruth is the chair of the
Liverpool Dementia Action Alliance which includes nearly 40 members working
together to help Liverpool become a dementia-friendly city. She is currently co-editing LUCY FROST
a book on life story work with Polly Kaiser.
Sussex Community NHS Trust
RUTH ELEY
Lucy is Dementia Lead in an NHS Trust and works across the organisation to promote
excellent care for people living with dementia. Lucy also leads on Dementia Education
for Trust staff. Lucy is committed to empowering people to live well with dementia,
The Orders of St John Care Trust
and encouraging the adoption of person centred approaches. An advocate of the value
Victoria trained as a nurse and then did a BSc in community nursing and MSc in social
of social media for health professionals, she tweets and blogs regularly. Lucy has a
policy. She was Care Director at OSJCT for 7 years prior to her current role. During
this period she was appointed to three Admiral nurse posts within OSJCT in conjunction special interest in the active involvement of people with dementia in their care, and
culture change within organisations to challenge the stigma faced by people with
with DUK and My Home Life. Victoria is currently a NICE Social Care Fellow.
dementia.
VICTORIA ELLIOT
JANE ELLISON MP
Parliamentary Under Secretary of State for Public Health
Jane Ellison was elected MP for Battersea in 2010 and re-elected in 2015. She gives
practical help to local businesses and is President of Wandsworth Chamber of
Commerce. She fought successfully to keep Battersea’s Bolingbroke hospital site in
community use – now home to a school and health centre. Jane is a leading
campaigner against Female Genital Mutilation (FGM). In 2013, Jane was appointed as
Public Health Minister at the Department of Health. Following the 2015 General
Election, she was re-appointed to the role. Her Ministerial responsibilities include
tackling health inequalities, immunization policy, preventing avoidable deaths, and
sexual health. Jane has held hundreds of advice surgeries, responded to over 14,000
constituents and gives practical and positive support to local schools, charities and
community groups. She is a school governor, Patron of the Home-Start Wandsworth
charity, and lives in the Balham area of the constituency with husband John. Jane
enjoys country walking, is a choir member and music charity Trustee.
ZOE ELKINS
The Good Care Group
Zoe Elkins is Head of Care Strategy for professional home care provider The Good Care
Group. With over ten years’ experience in the care sector, Zoe’s background is in
20
CHRIS GAGE
Ladder to the Moon
Chris is a social entrepreneur, with a specialism in dementia and a background in
applied creative practice. He is Managing Director of Ladder to the Moon, a
consultancy that supports care services to be creative, vibrant places to live, work and
visit that deliver outstanding business results. The company is internationally
respected for developing creative cultures in care services and Chris has pioneered
this unique approach in order to lead and support the change that he wanted to see in
the services that his Grandmother used. Ladder to the Moon is a founder member of
the National Skills Academy for Social Care. Chris’ work and articles have featured on
Channel 4, and across the sector press. He has consulted in the USA, and speaks internationally.
SIAN GARDNER
Monmouthshire County Council
Sian has worked in older peoples services for the last 20 years. The focus of her
current role is the development of consistent person centred care throughout direct
care services. To be able to do this we must always begin with knowing the person
ordinarily before providing care. To know what’s important to individuals and what
Speaker biographies
matters enables us to provide true relationship based care.
We place as much importance on Emotional and Psychological wellbeing as we do
physical wellbeing. We know that this is when we see people flourish and enjoy a
quality of life as opposed to just receiving quality care.
NATALIE GORDON
Joseph Rowntree Foundation
A Policy and Research intern at JRF, Natalie has worked tirelessly to make JRF and
JRHT a dementia friendly organisation, delivering Dementia Friends sessions and
writing an internal training needs analysis. Currently studying a Masters in Social
Policy at LSE, Natalie’s interests include researching the impact of welfare reform,
poverty dynamics and policies to support carers. She has worked in the voluntary
sector recruiting volunteers and as a Trainer Facilitator for local and international
projects. She volunteers for a community befriending programme with older people
and has delivered advocacy workshops in Mumbai for Sightsavers. Natalie is a Trustee
at Merton and Lambeth CAB.
BEVERLY GRAHAM
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MICHAL HERZ
Michal has 15 years of supporting people living with dementia. Currently, a senior
lecturer and head of education for the Association for Dementia Studies at the
University of Worcester, Michal has worked in care homes, care organisations and at
the Alzheimer’s Society. Michal’s undergraduate, MSc and post graduate diploma are in
the fields of psychology and old age, with a special interest on psychoanalytic thinking
in the context of dementia. Michal is currently working on her PhD “And then there
were three: Incorporating a live-in care-worker into the home of a couple where one
spouse has dementia.”
EMMA HEWAT
Support in Dementia
Emma Hewat and Hilary Woodhead have 40 years joint experience of working directly
with people with dementia and their families, managing services and developing
complex packages of bespoke service improvement and training. They co-founded
Support In Dementia in 2014. Support In Dementia provides dementia specialist
support and improvement for health and social care, through education and training,
service improvement and project management.
Alzheimer’s Society, Sheffield
Beverly Graham has worked with people with dementia for 15 years in a variety of
settings and she is currently a dementia support worker at the Alzheimer’s Society
Sheffield. Her role involves providing information and guidance to people with
dementia and family and professional carers. Beverly also offers support and facilitates
a range of groups, including a large city centre dementia café, singing for the brain
groups and peer support groups for people living with dementia. Beverly has a special
interest in enabling/empowering people with dementia to have a voice and she cofacilitates Sheffield Dementia Involvement Group (SHINDIG).
Institute for Volunteering Research
Matt has been at IVR since 2008 developing specialities in volunteering in health and
social care, youth social action and international volunteering. He is also a regular
blogger on national data including the economic value of volunteering and issues of
diversity. Matt is currently in the final year of a PhD exploring the power of volunteers
in public service delivery.
REINHARD GUSS
DIANE HINCHLIFFE
Kent & Medway NHS Partnership Trust
Reinhard studied Clinical Psychology and Gerontology at Heidelberg University in the
1980s. He came to the UK initially to conduct research on the effectiveness of CBT
stress management training for carers of people with dementia, and subsequently
obtained UK recognition of qualifications. He has since worked as a Clinical Psychologist, with a special interest in Memory Clinics, early diagnosis and therapeutic
approaches in dementia and services for younger people with a dementia. For the past
three years he has lead the Dementia Workstream of the Faculty of the Psychology of
Older People in the BPS. Reinhard is a member of the BPS Dementia Advisory Group,
Chair of the Faculty of the Psychology of Older People, and Co-chair of the Dementia
Action Alliance for the not-for profit sector.
Creative People Development
Diane Hinchliffe has been working in the field of community and participatory work for
over twenty years. For the last 7 years her focus has been the development and
delivery of creative, involvement – led projects with a therapeutic aim to support the
emotional health and wellbeing of individuals. As a therapist and therapeutic practitioner, Diane promotes the health and wellbeing of those affected by dementia through
her work with Striding Forward Dementia Awareness Group, poetry in care homes and
by offering access to low cost psychotherapy.
MATTHEW HILL
SIMON HOOPER
Health-Connected Ltd
The two founders of Health-Connected and the RemindMeCare dementia care system
PHILLY HARE
software are not from the health sector. Their current focus has derived from personal
Joseph Rowntree Foundation
and family experience of dementia and the care process. With backgrounds in business
Philly Hare is a Programme Manager at JRF. She is currently overseeing the final year and technology, including with LastMInute.com, Endemol and Inmarsat, training in
of the Dementia without Walls programme. Philly’s particular interests are the
dementia care was undertaken to understand the care process and the requirements
empowerment and inclusion of older people, including people with dementia, and the
for the creation of a reminiscence session format that is a step change beyond current
application of research evidence to practice. As a qualified social worker, Philly has
formats. Partnerships with experts in dementia care enabled the design, development,
experience within the NHS, Local Authorities and the voluntary sector in many areas of trial and deployment of a set of functionalities that enhance the ability to learn,
adult social care. In the 1990s, she managed the Scarborough/ Ryedale Kings Fund
engage and interact with a variety of persons involved in the dementia care.
Carers Project and later set up the Princess Royal Trust Carers’ Resource. She spent
five years as Senior Researcher with the independent consultancy, Acton Shapiro, prior
to joining JRF in April 2006. Philly has a first degree in English and Philosophy (Exeter AGNES HOUSTON
Deal with Dementia
University) and an MSc in Applied Social Studies (Oxford University).
Agnes comes from a nursing background and she was diagnosed at age 57 with
dementia of the Alzheimer type in 2006. Soon afterwards she joined the Scottish
DONNA HATHAWAY
Dementia Working Group and has campaigned for better training on dementia care in
acute hospitals, raising awareness on sensory challenges commonly experienced by
Donna Hathaway joined The Orders of St John Care Trust six years ago as a carer, which those with dementia. She is the co-Vice Chair of the European Working Group of People
she enjoyed immensely. She became an activity coordinator three and half years ago. with Dementia and was recently awarded an MBE.
In this role she developed therapeutic relationships with residents and got to know
more about them as people before they came into the Home. Donna has completed
MARK HOWARD
Cognitive Stimulation Therapy training and also Chair Based Movement training for
older people. Donna formulates the monthly activity and marketing plan, is the Home Orders of St John Care Trust
Mark qualified as an RMN in 1991 and throughout his nursing career he has worked
Dementia Lead and supports with developing life story work in the home.
within older peoples mental health services in a variety of settings including wards,
day hospitals, in the community and a private care home, predominantly caring for
HAZEL HEATH
people with dementia. Mark also has experience of working with older people with a
Independent Consultant Nurse
functional mental illness. Since March 2013 Mark has been an Admiral Nurse for the
Hazel Heath is an Independent Nurse Consultant for Older People, Honorary Senior
Orders of St John Care Trust, mainly supporting the care teams in the homes but also
Research Fellow City University London and Consultant Editor to the Journal of Dementia supporting residents’ families and memory cafes.
Care. In 2013 she was awarded a Fellowship of the Royal College of Nursing. Hazel is also
a member of the Editorial Board of the International Journal of Older People. Hazel is a
seasoned campaigner for improving care for older people. She has given evidence to a
House of Commons Select Committee and created the tool which determined NHS funding
for long-term nursing in England. Hazel’s work is widely published, she is an experienced
conference presenter and has edited/co-edited six textbooks.
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ALAN HOWARTH
CARLVIN JOSEPHS
Northumberland, Tyne & Wear NHS Foundation Trust
Alan works for the Northumberland Challenging Behaviour Service and has been with the
Service since February 2011. He qualified in 2007 from Newcastle University and worked
in a secondary care older persons mental health service where he was responsible for
providing psychological therapies and challenging behaviour input before moving to his
current post. He is originally from Glasgow and moved to the north east in 2004.
Dorset Healthcare University NHS Foundation Trust
Carlvin Josephs is is a Registered Mental Health Nurse working with Dorset Healthcare
University Foundation Trust since 2003.Prior to joining the Memory Assessment
Service he worked with the Poole Older Persons Community Mental Health team
providing mental health nurse support to people with dementia but also other forms of
mental health diagnoses. He joined the Memory Assessment Service in the role as
team leader in March 2012. Carlvin has been member of the team jointly working with
the Memory Support and Advisory Service and Dorset Clinical Commissioning Group on
delivering the Memory Gateway.
NICOLA JACOBSON
Nicola works as a Dementia Practice Development Coach for the Association for
Dementia Studies at the University of Worcester and is involved in both teaching and
research. Her employment background is in care, care management and delivering
community dementia services. She has a professional training as a Dance Movement
Psychotherapist. Alongside her work at the University she continues to practice Dance
Therapy part-time in care settings with people affected by dementia.
REBECCA JARVIS
Health Innovation Network
Rebecca Jarvis has spent much of her career working in commissioning and
programme management across health and social care organisations in South London
after completing the Essex County Council management trainee scheme. She has also
worked as a teacher of English and science in high schools in Japan and Zimbabwe.
FIONA KEOGH
Genio
Fiona Keogh, PhD, is Director of Research and Evidence with Genio. Fiona has over 20
years’ experience in conducting health services research and evaluation in Ireland, in
mental health, disability and dementia. Her special interest is supporting and implementing change in complex systems. She has also carried out significant work in health
policy, contributing to the Value for Money and Policy Review of Disability Services in
Ireland (2012) and writing much of the government’s current mental health policy A
Vision for Change (2006). Most recently she was a member of the working group which
developed Ireland’s National Dementia Strategy (2014).
JOHN KILLICK
Dementia Positive
John Killick has been writing poetry with people living with dementia for twenty-two
DAVID JOLLEY
years and eight books of poems have come from this work. He was Research Fellow in
David Jolley is a pioneer Psychogeriatrician with clinical and academic profiles; estab- Communication Through the Arts at DSDC, University of Stirling for six years. He is
currently in his fifth year as Poet Mentor at the Courtyard Centre for the Arts in
lishing services, teaching, training and research in Manchester, Wolverhampton and
Hereford. He has published books in the field on Communication, the Arts, Creativity
Tameside. Hon Professor Wolverhampton University, Reader at PSSRU of Manchester
University and Chair of the Section of Old Age Psychiatry, RCPsych 1990-94. David has and Playfulness. His most recent text is ‘Dementia Positive’ (Luath Press) and is a
conducted research and published on a range of clinical and service aspects of mental ‘Reading Well’ prescribed book.
health in older people, currently including memory clinics in Primary Care, hospice
contributions to end of life care in dementia, comparison of services in Europe and
ALISE KIRTLEY
improving services for ethnic minority groups in England.
City Univesity, London
Alise Kirtley works independently on a variety of projects that aim to support people
living with dementia, their family and professional carers, to flourish. Alise has worked
JULIA JONES
as
a Culture Change Manager and Practice Development Consultant with care homes;
South Staffordshire and Shropshire NHS Foundation Trust, Telford & Wrekin
lead training and awareness workshops for professional carers, nurses, and family
Dementia Home Treatment Team
carers; lead and contributed to research for Innovations in Dementia, The Bigger Boat
Julia qualified as a Mental Health nurse in 2003 and completed BSC in Specialist
for Ageing and Dementia, and My Home Life; and is a visiting researcher at the Centre
Practice Community Mental Health nursing and Community Nurse Prescriber in 2008.
for Creativity in Professional Practice at City University to support the development of
Since qualifying in 2003 Julia has worked mainly with people with enduring mental
digital technologies to enhance person-centred dementia care.
health illnesses but for the past 4 years she has worked for the Telford and Wrekin
Memory service. In January 2013 Julia lead on the successful development of the
Dementia Home Treatment Team.
SALLY KNOCKER
Having trained in dramatherapy, Sally is particularly passionate about bringing variety,
movement and fun to daily life. She worked with NAPA, the National Activity Providers
The University of Manchester / Greater Manchester West MHFT
Association for ten years prior to joining Dementia Care Matters. She currently project
Lesley has been a mental health nurse for over 20 years, a large proportion of which has
manages Butterfly Projects in care homes working with Dementia Care Matters across
been spent working with people who have dementia. Lesley has had a number of positions
including sister, clinical leader and practice development nurse. Currently she is an Advanced the United Kingdom and Ireland, as well as a consultant trainer. Sally is the author of
Practitioner in Dementia Care and an NIHR Clinical Doctoral Research Fellow in her last year the latest in the Dementia Care Matters series, published with Hawker Publications,
‘Loving, the Essence of Being a Butterfly in Dementia Care.’
of PhD study. Lesley’s PhD is focused on exploring the concept of complexity in dementia.
Her interests are working with people with dementia who have other comorbidities and high
JENNY LA FONTAINE
levels of need, pain assessment in dementia, end of life care and life story work.
Worcestershire Health and Care Trust and University of Bradford
Jenny has many years’ experience working in the NHS in and within Higher Education.
MARK JONES
She has specialised in working with people living with dementia and their families
Cardiff and Vale University Local Health Board
throughout most of her career. Her current role is a development post with a strategic
Mark is a Dementia Care Advisor with The Younger Onset Dementia Service at Cardiff
brief to provide specialist advice and support to facilitate the development of services
and Vale University Health Board. In 1997 he qualified as a Social Worker achieving a
distinction Masters from the University of York. Mark has worked within Neurosciences and specialist trained staff for younger people with dementia and their families. She
has specialist interests in working therapeutically with families and people living with
at Leeds General Infirmary, and mental health services in Wakefield, where he was an
dementia and in early intervention. Jenny is in the fifth year of a part-time PhD.
Approved Mental Health Professional. In 2006 he joined Mental Health Services for
LESLEY JONES
Older People in Cardiff. He is a Trustee of the Charity Re-live which focuses upon
theatre and life story work with people at the margins of society.
BECKY LAMBERT
South London & Maudsley Mental Health Foundation Trust
Becky Lambert is an Occupational Therapist who specialised in dementia in 2013
working on the health Foundation funded project My Discharge project. She worked as
Devon Partnership NHS Trust
the Dementia Lead at the Royal Free London NHS Foundation Trust from December 2013
Tammy Jones registered as a Mental Health Nurse in 1999 and later qualified as an
– September 2015 and is now the Head of OT at the Maudsley for Older Adults, mental
Adult nurse in 2003. Tammy has held various roles within Mental Health including
Psychiatric Liaison Nurse with a specialist interest in Older Adults. Devon Partnership health and dementia. Becky set up and runs the Pan London Acute Dementia Leads
NHS Trust successfully bid for the Prime Ministers Dementia Challenge Fund and Tammy Network and is part of the Strategic Clinical Leadership group for dementia.
was appointed Project Lead for the South Devon Dementia Learning Community Project
which won a BMJ Award for Dementia Team of the Year 2015.
TAMMY JONES
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Speaker biographies
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REENA LASRADO
NEIL MAIDEN
The University of Manchester
Reena Lasrado is a qualified social worker and has worked with communities and
hospitals in India and the UK. She has worked in research, education and currently
holds a postdoctoral research position at the University of Manchester. She completed
her PhD at the University of Manchester on the topic of culture and suicide in India.
Reena’s research interests are suicide, para-suicide, murder-suicide, dementia and life
threatening illness.
City University, London
Neil is Professor of Digital Creativity in the Cass Business School of City University
London, where he leads its Centre for Creativity in Professional Practice. He
undertakes research and teaching to enhance professional work with creative skills,
knowledge and practices, often with new forms of digital technologies. With European
Union and Skills for Care funding, he has developed new forms of digital support for
care staff to think creatively during person-centred care, and evaluated it in different
care environments. He has also piloted different forms of mobile technologies for use
in residential care homes.
ISABELLE LATHAM
Isabelle has been a Senior Lecturer at the Association for Dementia Studies since 2011.
She leads on research in care homes and contributes to many ADS education
programmes. Isabelle’s career started as a care worker with older people, and
includes over 15 years’ experience of working in health and social care with a focus on
safeguarding from abuse and educating frontline staff. She managed an advocacy
service for people living with dementia before moving to work as a safeguarding
officer for a national care provider. Prior to joining ADS she was training and
development manager for a Safeguarding Vulnerable Adults Board.
LOUISE MARKS
Carers Trust
Louise is currently in post at Carers Trust as Dementia & Older Carers Policy and
Development Officer. This is a reasonably new post for Carers Trust. Her role is to raise
the profile of older carers and carers, of people with a dementia, to influence local and
national policy and identify and spread good practice amongst out Network Partners.
Before taking up the post at Carers Trust Louise worked for 10 years at Suffolk Family
Carers, advising and supporting carers.
JOANNE LAVERTY
JOANNA MARSHALL
Anchor
Joanne Laverty has worked in health and social care for over 15 years. Joanne
previously worked as a Social Worker in a children’s residential unit, crisis resolution
home treatment team, a community mental health team and an older adults team and
has supported people living with dementia and their families in these various roles.
Tees, Esk & Wear Valleys NHS Foundation Trust
Joanna leads the Durham and Darlington Care Home Liaison team, working with
Nursing and Occupational Therapy colleagues to embed the use of psychological
formulation and develop the use of non-pharmacological interventions for behaviour
that challenges. Joanna qualified as a Clinical Psychologist in 2005 from Newcastle
University. She did her older adult placement with the Newcastle Challenging
Behaviour team and was involved in the development of the Newcastle formulation
model. Joanna did the first doctoral research project on therapeutic lies in dementia
care and has continued to collaborate with Professor Ian A. James.
DANUTA LIPINSKA
Trainer and Counsellor
Supporting people with dementia, their carers and professionals who support them
continues to be an enduring passion and privilege which began in the USA 30 years
ago. Danuta continues training counsellors and therapists to work with persons with
dementia and is patron of the Forget-Me-Nots Cognitive Stimulation Therapy Group in
Norwich. Danuta is currently working on her next book on living with dementia and the
experience of sex and wellness, as well as mentoring others to publish and present at
conferences. Through 'My Home Life', Danuta works with care home managers across
the UK whose creative ways of supporting residents and relatives with dementia is
inspirational.
MARY MARSHALL
Mary Marshall is Professor Emeritus at Stirling University where she worked in
dementia care for many years. She now writes and lectures in dementia care especially
about design. Her most recent book was about culturally appropriate outside spaces
for people with dementia. Her current area of interest is in design and behaviour.
JANE MCKEOWN
Sheffield Health and Social Care NHS FT
Jane is a mental health nurse who has worked with people with dementia for the past 30
years. Her current role combines research, education and involvement work with people
South Staffordshire and Shropshire NHS Foundation Trust, Telford & Wrekin
living with dementia and their family carers. The different aspects of her work have a
Dementia Home Treatment Team
central focus on developing approaches that enable people with dementia to have their
Karen qualified as a mental health nurse in 1989 and worked for 14 years in a hospital
say and be able to share their experiences with healthcare staff, students and researchers.
environment, mostly on EMI wards. She then took up a community post in Bridgnorth in
2003 where she worked for 8 years before moving to the Telford & Wrekin Memory Service Jane co-founded and facilitates Sheffield Dementia Involvement Group (SHINDIG).
where she has worked for the past four and a half years. Whilst in Bridgnorth, Karen
undertook and obtained a Specialist Practice degree in community mental health nursing. STEVE MILTON
Karen has worked within and helped develop the Dementia Home Treatment team in
Innovations in Dementia
Telford since January 2013.
Steve has been working in dementia since joining the Alzheimer’s Society in 1995
KAREN LOCKLEY
CHRISTINA MACIEJEWSKI
Cardiff and Vale University Local Health Board
Christina held the position of Consultant Clinical Psychologist and Head of Older Adult
Specialty in Cardiff and Vale University Local Health Board for 17 years. During this
time she was tasked with researching the need for a service for younger people living
with dementia locally and also led on the survey of services for younger people with
dementia across Wales (Dementia Services Development Centre-Wales 2003). In 2014
the opportunity arose to work in the newly developed service for younger people and
Christina has now been working in the service for a year.
SOPHIE MACKRELL
Sophie Mackrell is a Clinical Psychologist Older Adult Specialist, with 20 years
experience of working with people with a diagnosis of dementia and their carers.
Sophie is currently employed by the Alzheimer’s Society as Network Manager of the
Time for Dementia Programme, an educational programme for Medical, Nursing and
Paramedic students in Sussex and Surrey. Sophie is responsible for recruiting and
supporting participants who are taking part in the programme. Sophie is passionate
about training all staff in dementia and involving people with a diagnosis and their
carers in the process.
where he set up and ran the National Helpline for seven years. He became a director
of Innovations in Dementia in 2007. Steve leads Innovations in Dementia’s work on
dementia friendly communities, or as he prefers to call it -accessibility. As you might
expect - Steve is a keen advocate of a rights-based approach to dementia.
WENDY MITCHELL
Wendy was diagnosed with early onset Alzheimer’s on 31st July 2014. She is 59 years
young, lives happily alone in Yorkshire and has 2 daughters. Having retired from the
NHS at the end of March, much of her time is now taken up raising awareness by
speaking at events large and small. She is an Ambassador for the Alzheimer’s Society
and is passionate about research and patient involvement. She was recently named as
one of the Top 50 Patients’ Leads by the Health Service Journal for her work promoting
research. She writes a daily blog www.whichmeamItoday.wordpress.com which now
serves as her memory.
PETER MITTLER
Peter Mittler CBE is Emeritus Professor of Special Needs Education at the University of
Manchester. He trained as a clinical psychologist, and devoted his career to
championing the rights of people with intellectual and developmental disabilities to
education and citizenship. He is a former President of Inclusion International and a UN
consultant on disability and education. He was diagnosed with ‘early, very mild
Alzheimer’s’ in 2006 and is now actively promoting access for people living with
dementia to the UN Convention on the Rights of Persons with Disabilities.
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Speaker biographies
CAROLE MOCKFORD
PAUL MYLES
University of Warwick
Carole is a researcher at the University of Warwick medical school having worked on
various projects in health research including systematic reviews on patient and public
involvement in health services (PAPIRIS study) and the use of Do Not Attempt
Cardiopulmonary Resuscitation orders. She spent four years on an international study
implementing continence recommendations into care homes (FIRE study). Previously
she was a researcher at the University of Oxford where she also gained a DPhil in
developing a quality of life instrument for carers of people living with motor neurone
disease. Carole is currently the principal investigator on the SHARED study.
On Our Radar
Paul Myles is Editorial Manager at On Our Radar. He is a former investigative reporter
for C4 Dispatches and is responsible for training participants and developing, editing
and pitching stories to media for the Dementia Diaries project.
HENRY MOONEY
RUTH O’DEA
The Orders Of St John Care Trust, Bemerton Lodge
Ruth has been working in the care industry for over 20 years. She qualified as a
Registered Mental health nurse in 2005 and following this spent a year working in
substance misuse. She then returned to geriatric care and began working for OSJCT in
2007 as Head of Care. Ruth soon progressed to Home Manager of a specialist dementia
home. She has a passion for working collaboratively with residents and improving the
lives of those affected by dementia. As a home manager Ruth is always looking for new
innovative ways to improve the lives of those around her.
Everton Football Club
Henry Mooney, current Everton Football Club's Community Engagement Officer, also
manages a number of programmes for Everton's Health & Wellbeing team. Henry
manages Pass on the Memories, a project that engages people living with memory loss
and their carers. The project runs in partnership with Mersey Care, who are the mental JOSIE O’SULLIVAN
health providers for the Merseyside region.
Scottish Dementia Working Group (SDWG)
Josie O'Sullivan is a founding member and current committee member of the Scottish
Dementia Working Group (SDWG). She was diagnosed with vascular dementia over ten
CLAIRE MORRIS
years ago. Being part of the group and sharing experiences, tips and advice has been a
valuable support and she now feels that she lives well with dementia. Josie spent her
Clare’s interest is in developing therapeutic interventions for people with dementia
and their families, including those at risk of genetic forms of dementia. She practices working life supporting underprivileged children as a youth leader in community
education. As an active campaigner with SDWG, Josie contributed to both Scotland's
yoga therapy, has launched the Positive Spin cycling project with Cycle Training UK,
National Dementia Strategies. She is also valued member of the Scottish Opera's
and is a counsellor with many years experience with people with dementia and their
families. She runs workshops for Dementia Pathfinders and teaches Personal Construct dementia project.
Psychology. Publications on the experience of symptoms of dementia, Personal
Construct Psychology and Dementia, and Yoga with people with dementia can be
JAN OYEBODE
downloaded from her website: http://www.personalconstructpsychology.co.uk
Jan is Professor of Dementia Care in the School of Dementia Studies at the University
of Bradford. Her current research interests focus on understanding the experiences
and support needs of people living with or affected by dementia, in particular, underRetired GP
standing how couples and families negotiate the impact of dementia on relationships
Dr Rukiya Mukadam was born in Srinagar, Kashmir, India in 1951. She was educated in
Kashmir, qualified as a doctor and married a colleague. She worked as a GP in Malawi for and exploring the role of culture, age and type of dementia. Jan moved to Bradford in
2013 to take up her current post and before that combined a career as a clinical
many years and came to the UK in 2009. Subtle changes were noticed about 4 years
ago, such as forgetting some ingredients in tried and tested recipes; nearly setting the psychologist with older people in the NHS with academic roles, working in Merseyside,
Newcastle and Birmingham.
flat on fire on 2 or 3 occasions; incidents at ATM machines. She was diagnosed with
early stage Alzheimer’s in April 2014. Rukiya has a very supportive family and has
joined a memory café and is doing exercises on her phone to improve her memory.
JILL PENDLETON
RUKIYA MUKADAM
Mersey Care NHS Trust
Jill trained as an occupational therapist and has worked with people with dementia for
over 20 years. Following a Masters she was seconded to a training and practice
Innovation in Dementia
development role, leading on to her post as Dementia Lead. More recently she has
With a background in learning disability nursing, and formation living in community in
taken on the role of Project Manager for Innovate Dementia, a trans-European project
Latin America, Damian’s counter cultural approach has served him as the first
independent advocate for people with dementia in acute hospitals (2000-2002), followed which utilises a living lab approach working with people living with dementia,
businesses, health and social care professionals to co-create and test technological
by a decade developing community-based support services and training materials with
the Alzheimer’s Society, and working within the long term care sector. Damian is also an innovations that improve independence, autonomy and quality of life. Her clinical work
is currently within the memory service running post diagnostic, peer support and coassociate of the Life Story Network. He co-wrote the SCIE Open Dementia e-learning
creation groups for developing technology and innovation.
programme and currently facilitates the York ‘Minds and Voices’ DEEP group.
DAMIAN MURPHY
CATHERINE MURRAY-HOWARD
SARAH PENNEY
Community Integrated Care
Cath Murray-Howard is Deputy Chief Executive of Community Integrated Care, one of
Britain’s biggest and most successful social care charities. She takes lead responsibility for the business development strategy, cultivation of strategic partnerships and
corporate communications. Cath works closely with commissioners across England and
Scotland, and her colleagues in Operations, HR and Quality, giving her a broad,
specialist understanding of the care sector and the issues that both providers and
commissioners of care services face. She has a proven track record of developing new
innovative models of support, assisting in the remodelling services, and contributing to
the development of new care pathways.
Ulster University
Sarah is currently a Research Fellow at Ulster University and project Manager for
Ulster University project Improving Quality of Life in Nursing and Residential Homes in
Northern Ireland. Sarah has a background in surgical nursing before managing several
health and social care projects and then worked as a care home manager before
moving to Ulster University to manage a project to develop practice in care homes.
Specific interests are supporting staff to develop practice in dementia care and
dementia design. She sits on the Northern Ireland expert panel to assist with the
development of a national learning & development framework and is also Dementia
Lead for a Belfast charity.
SABARIGIRIVASAN MUTHUKRISHNAN
LYNNE PHAIR
Cardiff and Vale University Health Board
Dr Muthukrishnan is the Consultant Old Age Psychiatrist for the Community REACT
Service. He is also the Clinical Director for the Mental Health Services for Older
People’s Directorate and Neuropsychiatry Service for the Cardiff and Vale University
Health Board. Dr Muthukrishnan jointly won the Best Consultant Service Development
award in 2014 from the Old Age Faculty of the Royal College of Psychiatrists. In the
Community REACT service one of his roles is to avoid inpatient admission for older
adults with functional mental illness and adults with a diagnosis of dementia. Dr
Muthukrishnan evaluates the economic effectiveness of the Community REACT service
and collates feedback from those who use the service.
Independent Consultant Nurse
Lynne is currently an Independent Consultant Nurse and Expert Witness for Older
People and Safeguarding Vulnerable Adults. She is Clinical Advisor for Milford Care,
Specialist Advisor for the Care Quality Commission, Visiting Lecturer University of
Worcester, Quality & Service Director for Abbeyfield South Downs, Consultant to the
Crisis Prevention Institute and member of the Editorial Advisory Board of the Journal
of Dementia Care and Journal of Adult Protection. She is also the author of the
sitandseeTM Tool. She has written widely, speaks nationally and has been an advisor to
BBC Radio 4 “File on 4”, BBC Panorama, and ITV “Exposure”.
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Speaker biographies
KERRY PHELPS
Kerry is Service Manager for Alzheimer’s Society’s Try Something New project covering
North and South West Wales. Kerry started as part-time administrator and then
became the Befriending Manager for Bridgend and District before being successfully
appointed as Service Manager two years ago. She is also an Alzheimer’s Society
trainer. The skills and knowledge acquired through working with Alzheimer’s Society
over the past 5 and a half years has helped her to understand what is important to
those affected by dementia when accessing services and has enabled her to ensure
that Try Something New strives to meet the needs of those affected by dementia.
NATALIE PORTWINE
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dementia, Parkinson’s); she also has experience as a commissioner. She is the RCGP
Clinical Lead for Dementia, Strategic Clinical Network SE Clinical Lead for dementia,
Chair of the Lewy Body Society Specialist Advisory Group and Primary Care Representative on the RCPsych Old Age Faculty. She has also led the development of the
Dementia Roadmap (www.dementiaroamap.info).
MARK RENDELL
Step Change Design
Mark Rendell and Debbie Carroll are garden designers based in Southampton and North
Wales. They are both passionate about the importance of the outside space in aiding
health and wellbeing. They teamed up in 2012 to answer a question about their sector’s
practices: why aren’t care home gardens being used more, even when they have been
redesigned? The research project confronted them with some uncomfortable home
truths about general design approaches with the care sector. They have formed Step
Change Design to promote their new approach based on their findings, ‘relationshipcentred design’. See www.stepchange-design.co.uk for more information.
Devon Partnership NHS Trust
Natalie Portwine qualified as a Mental Health Nurse in 1988. She is a Senior Mental
Health Practitioner seconded to the South Devon Dementia Learning Community
project. This role has enabled Natalie to share her knowledge and enthusiasm to
improve the quality of lives of people living with dementia in care homes. Natalie has
taken the lead on devising, developing and delivering a training package in care homes GILL ROBERTS
and support of care home dementia champions. She is very proud to be part of the
Alive!
project team who received the BMJ Dementia Team of the Year 2015 award.
Gill Roberts manages a South-West based team of workshop presenters for Alive!,
develops and runs training courses and workshops for Alive!’s Active Care project, and
leads around 250 interactive Activity and Reminiscence sessions a year, including Tai
CATHERINE POWELL
Chi workshops for people living with dementia. Gill is passionate about developing and
supporting a person-centred culture in residential care settings. Her work is informed
Catherine Powell is Research Fellow on the NIHR funded study Better Health in
by a background in participatory performing arts, in healthcare and carers’ charities,
Residents in Care Homes project (BHiRCH), a collaborative project, led by the
and by close family experience of what it means to live with dementia. Gill finds
University of Bradford, which aims to improve early detection of deterioration of
Alive!’s innovative use of iPad apps a great tool for supporting people to live well with
health conditions that can be easily treated in the home. She joined the School of
Dementia Studies in April 2015. Catherine has a BA in Sociology and Social Policy from dementia.
the University of York, an MA in Social Research from the University of Leeds and a PhD
in Sociology and Social Policy from the University of Leeds. Catherine’s research
JAN ROBINS
interests focus on care, older people and intergenerational relationships.
Hertfordshire Foundation University Trust
Since qualifying as a mental health nurse in 1990 Jan has worked with people living
with dementia in a wide variety of clinical roles. She has completed an MSc in training
PETER PRIEDNIEKS
in dementia care with Bradford School of Dementia Studies where she was also a
lecturer. During her time at Bradford she was responsible for the development and
Peter has held a very varied work life as a Science teacher in Nottingham, an RAF
implementation of bespoke cascade training for large national and international care
Officer with responsibility for training and development and a Training and
providers. This model was adapted for use in the Acute Hospitals across West
Development Manager in industry. A director of Dementia Care Matters for 20 years,
Peter is also a Master Practitioner in Neuro – Linguistic Programming which explores Yorkshire. In July 2015 Jan was appointed as a senior lecturer/nurse consultant for
dementia care, a joint post with the University of Hertfordshire and Hertfordshire
how people form their identity and view of the world. Peter leads on Dementia Care
Partnership University Foundation Trust. Jan’s research interests are the educational
Matters national training programme facilitating the Leadership Matters in Dementia
needs of families and friends of people living with dementia who reside in care homes.
Care course and the Training Skills Matters course. Peter is a lead consultant in a
number of Dementia Care Matters Butterfly Service care homes.
SHARON LOUISE ROBINSON
MARTIN PRINCE
King’s College London
Martin Prince is Professor of Epidemiological Psychiatry, Head of Department of the
Health Service and Population Research department, and joint-Director of the Centre
for Global Mental Health which is a joint King’s Health Partner and London School of
Hygiene centre. He trained in psychiatry at the Maudsley Hospital and in epidemiology
at the London School of Hygiene and Tropical Medicine. His work is oriented to the
salience of mental and neurological disorders to health and social policy in low and
middle income countries (LMIC), with a focus on ageing and dementia. He has
coordinated, since 1998, the 10/66 Dementia Research Group: a network of researchers
mainly from LMIC working together to promote more good research into dementia in
those regions. The group has published 100 papers covering dementia prevalence,
incidence, aetiology and impact and contributed to knowledge of public health aspects
of ageing and chronic disease in LMIC. He was co-author of the Dementia UK report
that informed the UK Government’s National Dementia Strategy. He led the
development of the widely reported ADI World Alzheimer Reports for 2009 (prevalence
and numbers), 2010 (societal cost), 2011 (early intervention), 2013 (long-term care) and
2014 (prevention) and was a leading contributor to the WHO World Dementia Report
2012. He was one of three editors for the 2007 Lancet Series on Global Mental Health,
and is committed to further research and advocacy to support the call for action for
improved coverage of evidence-based community treatments. He coordinated the
development of the WHO Mental Health Gap Action Plan (mhGAP) clinical guidelines for
dementia care by non-specialists in LMIC.
JILL RASMUSSEN
SE Coast Clinical Network
Dr. Jill Rasmussen MBChB, FRCGP, FFPM, is a Community Clinician with special interest
in psychiatry and neurology. Since 1994, she has combined part-time clinical practice
with her own independent research consultancy. In the NHS she is a GP with Special
Interest in Mental Health and Intellectual Disability who has special responsibility for
patients with serious / common mental illness and neurodegenerative diseases (e.g.
Fisher Medical Centre
Having always been passionate about caring for older people, Sharon’s current role
allows her the opportunity to influence change. As a brownie Sharon did voluntary
work within a care home making afternoon teas. She qualified as a Registered General
Nurse in 1992 and since then has developed a broad range of clinical experience. Her
most valuable experience is a personal one having been a carer for her father in law
who is living with dementia. Sharon is currently studying toward an MSc in Advanced
Practice.
SANDRA ROCHE
London Borough of Sutton
Sandra qualified as a Social worker in 1997 and gained her MSc at the London School of
Economics in the same year. Her passion for improving dementia care began as a
teenager when she became a carer for her grandmother. As Head of Service in Sutton
she is responsible for delivering the better care fund and has ensured that the needs
of people with dementia and their families are at the forefront of emerging new ways
of working.
CAROL ROGERS
National Museums Liverpool
Carol Rogers is responsible for education and community participation across National
Museums Liverpool’s eight venues. She also oversees the delivery of Visitor Services,
Fundraising, Marketing and Communications. Her profile is well known across the North
West of England and she maintains an extensive national network of education,
museum, health and social care partnerships. Her work is recognised for its creativity,
innovation and enterprise; successfully connecting cross sector organisations and
resources. In January 2015, Carol was awarded an MBE for her role leading National
Museums Liverpool’s multi-award-winning House of Memories programme. Prior to
joining National Museums Liverpool, Carol was Education Director for Liverpool’s
successful campaign to be European Capital of Culture 2008.
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Speaker biographies
GEORGE ROOK
AMY SEMPLE
Shropshire Dementia Action Alliance
George has worked to improve patient experience and outcomes in Shropshire for six
years, since he stopped working full time. He lives with several long term conditions
and has a diagnosis of mixed dementia at a fairly early stage. George is involved with
Patient Engagement Panels with his local acute and community healthcare providers,
and also with Shropshire CCG. George helped start the Shropshire Dementia Action
Alliance, of which he is Chair. George has worked on the Patients in Control project to
co-design and co-facilitate the workshop for commissioners. He is passionate about
putting patients at the heart of everything the NHS does, at national and local levels,
and through his work he hopes he can influence change.
Health Innovation Network South London
Amy Semple is an experienced project manager and social researcher. She has led on
early years and older people health and wellbeing projects for the past eight years,
working across the statutory, charitable and voluntary sectors. Prior to this Amy
worked in the private sector in business development and event management.
ASSUMPTA RYAN
DAVID SHEARD
Ulster University
Assumpta Ryan is Reader with the School of Nursing and the Institute of Nursing and
Health Research where she leads the ‘Provision of Care to Older People’ strand of the
Person-centred Practice Research Centre. Her research is focused on ageing and the
care of older people. Specific interests include the needs and experiences of family
carers, the impact of community care on older people, the experience of entry to longterm care from the perspective of older people and their families, quality of life in
nursing and residential homes and dementia care. Her expertise lies in the field of
qualitative research with a particular focus on grounded theory methodology.
She is the project lead for the Ulster University project Improving Quality of Life in
Nursing and Residential Homes in Northern Ireland.
HANNAH SEYMOUR
Royal Lancaster Infirmary
Hannah Seymour is a dietitian at Royal Lancaster Infirmary in acute medicine and
surgery, and also a Public Health Nutritionist.
Over the last 35 years David has been a challenging and motivational speaker in the
UK, Ireland, USA, Canada and Australia. His main focus in speaking, consultancy,
training, writing and his media work in national TV is to shape culture change in
dementia care and to emphasise that ‘Feelings Matter Most.’ Dementia Care Matters’
belief and approach as a team are outlined in 19 publications and DVDs entitled the
‘Feelings Matter Most’ series including in 2015 its new DVD Giving: hope for the future
of dementia care. David is a Visiting Senior Fellow in the School of Health and Social
Care, University of Surrey and is Doctor of the University (DUniv).
LYN SHELDRAKE
Sunrise Senior Living
Lyn Sheldrake is a specialist dementia nurse practitioner. She has a degree in
Calderdale & Huddersfield NHS Foundation Trust
Psychology and a Masters in Advancing Health Care Practice and has worked in
Since qualifying in the 1980’s Barbara has worked in a variety of settings. Barbara has dementia care for 15 years. She has a background in research and evaluation and has
held a number of senior nursing positions, led numerous service improvement initiative worked in both the acute sector and in the community supporting people living with
and now works as nurse consultant for older people. In March 2011 Barbara was
dementia and their carers. Lyn has worked for Sunrise for nearly three years as UK
awarded the first Claire Rayner PhD Scholarship for the study of Compassion in Nursing Head of Dementia Care and formerly as the Head of Quality and Evaluation at the
at the University of Huddersfield. Throughout her career, Barbara has developed an
Alzheimer’s Society. Lyn has a particular interest in the link between research,
ambition to contribute towards improvements in hospital care for older people in
education and practice.
particular those living with dementia, and others at risk of developing delirium.
BARBARA SCHOFIELD
PAM SCHWEITZER
European Reminiscence Network
Pam Schweitzer is a director, trainer and consultant in reminiscence arts, specialising
in reminiscence theatre and reminiscence in dementia care. As founder and Artistic
Director of Age Exchange (1983-2005) she developed a new form of theatre calling on
the reminiscences of older people and playing back the past for them. Her work with
people with dementia and their family carers was recognised last year when she won
the National Care Awards Lifetime Achievement award. As Director of the European
Reminiscence Network, Pam has led a Europe-wide initiative in reminiscence in
dementia care and a training and apprenticeship scheme.
HELEN SANDERSON
Helen Sanderson Associates and Community Circles
Helen Sanderson has been at the forefront of the development of person-centred
thinking and planning in the UK over the last twenty years. Helen was the Department
of Health’s expert advisor on person-centred approaches for 10 years. She is the coauthor of Personalisation and Dementia – a guide for person-centred practice, and
Making Individual Service Funds Work for People with Dementia Living in Care Homes,
both with Gill Bailey and published by JKP. Helen lives in Heaton Moor, with Andy and
her three daughters. She is a black belt in karate, but is now trying to spend more time
doing yoga, and is learning mindfulness.
DISHO SANDHU
BME United
Disho has been a full time carer who has been looking after her husband and mother
for the last 13 years. Disho’s husband is suffering from heart condition and her mother,
who has passed away recently, lived with dementia.
DEBBIE SELLS
Northumberland Tyne & Wear NHS Foundation Trust
Debbie is a mental health nurse who has worked in dementia services for the last 29 years
across a range of clinical in-patient and community settings. For the last 8 years she has
worked within a specialist Challenging Behaviour Service offering a psychosocial
perspective to meeting the needs of individuals with dementia who are experiencing
distress. As Lead Practitioner for Domiciliary Services she has been active in developing an
initiative which supports and educates family carers to manage difficult behaviours. Debbie
is currently studying Intermediate level Family Therapy and Systemic Practice and is keen to
explore how this can be integrated into her work with families in dementia services.
26
DIANNE SMITH
University Hospitals of Morecambe Bay
Dianne Smith is currently the Matron for Professional Standards in Dementia at UHMBT.
Her background is as a registered nurse and previous ward manager in acute elderly
medicine at the Royal Lancaster Infirmary.
SARAH SMITH
Sarah Smith is a Cognitive Psychologist. Broadly, her research interests concern how
higher order cognitive processes, such as executive processes, awareness of memory
and subjective experiences associated with remembering, interact with memory
function. She is particularly interested in the concept of everyday memory and understanding how memory works in the context of carrying out everyday tasks (such as
taking medication) and remembering past personal events that are significant for
maintaining identity.
BARBARA STEPHENS
Barbara Stephens is Chief Executive of Dementia Pathfinders, a social enterprise
developing innovative services for people living with dementia and providing training
for the health and care workforce. Barbara has extensive experience in dementia
having worked previously for Dementia UK and the Alzheimer’s Society. She is keen to
understand the ‘lived experience’ of dementia and has an interest in solution focused
approaches. A key aim of Dementia Pathfinders is to initiate projects that harness the
skills and knowledge of people directly affected by dementia. Dementia Pathfinders
was awarded the contract to host the Dementia Roadmap by the RCGP in April 2015.
CRAIG STEVENS
Alive!
Craig Stevens is a hugely popular entertainer who has been working with older people
in West Sussex since 2007. His passions are person-centred entertainment, singing,
comedy and having fun. As one of Alive!’s Regional Managers, he has developed his
team of presenters and leads Activity and Reminiscence training sessions. He has
extended the charity’s workshop resources, helped in sales and marketing and
promotes Alive!’s vision along the south coast. Craig is trained in NLP and as a
Laughter Yoga teacher. His passions are meditation, yoga, singing and dance, bushcraft
and walking in nature.
Speaker biographies
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MAGGIE STOBBART-ROWLANDS
AMANDA THOMPSELL
Gold Standards Framework Centre
At the Gold Standards Framework Centre, Maggie leads on the Care Homes Training and
Accreditation Programme, Domiciliary Care and Dementia. As an RMN/RGN, she has
had a long and varied career in nursing, including prison nursing and care homes. She
studied Health Services Management and Masters in Leading Health Care Services at
the RCN, London. Prior to joining the GSF team she was manager of a nursing home,
specialising in end of life care which was the first home to implement GSF and become
accredited in Cornwall. She was also proactive in raising the profile of end of life care
and GSF throughout the county, raising awareness with other care home staff and
commissioners to the needs of residents in care homes. Cornwall is one of the few
counties to have trained all of their care homes and community hospitals in GSF. She
continues to travel nationally to improve end of life care across the country.
South London and Maudsley NHS Foundation Trust
Dr Thompsell is a consultant old age psychiatrist. She has worked with care homes, in
old age hospital liaison and more recently specialist care. She leads the Improving Care
work stream for the London Dementia Strategic Clinical Leadership Group. This group
represents a cross-section of clinicians and other professionals from all over the
capital. The group provides the opportunity to focus on identified health issues from a
broad strategic perspective. Her research interests include improving care for those
with severe dementia and the role of technology in dementia care.
ANDREA SUTCLIFFE
Care Quality Commission
Andrea has nearly 30 years’ experience in health and social care managing a range of
services including those for children and older people. Andrea joined CQC in October
2013 and leads on the regulation and inspection of adult social care. Andrea is also
responsible for the registration team supporting all health and care sectors. She
joined CQC from the Social Care Institute for Excellence (SCIE) where she was Chief
Executive from April 2012. Previously Andrea was Chief Executive of the Appointments
Commission and was an Executive Director at the National Institute for Health and
Clinical Excellence. Andrea is an advocate for the use of social media to share
information and learn from others. She tweets at @Crouchendtiger7 and writes a
weekly blog for the CQC website. Andrea is passionate about people who use services,
their families and carers being at the heart of everything CQC does.
DAVE SWEENEY
NHS Halton CCG and Halton Borough Council
Dave Sweeney is Director of Transformation working across NHS Halton CCG and Halton
Borough Council. This role was amongst the first of its kind in the country, embracing
the new world of system integration. He is an award winning commissioner and has
also worked in health service delivery. Dave is also a lifelong punk rocker and co-hosts
a community radio show for the CCG.
SUSANNAH THWAITES
Tees, Esk & Wear Valley NHS Foundation Trust
Susannah is a Clinical Specialist Occupational Therapist with Tees, Esk & Wear Valleys
NHS Foundation Trust, who works within the Care Home Liaison team. She works
predominantly with people with dementia who are in the later stages of dementia and
are presenting with behaviours that care home staff are experiencing as challenging.
Susannah’s special interests are using sensory based interventions to meaningfully
engage or to provide positive approaches to care and education for care home staff.
EDWARD TOLHURST
Staffordshire University
Edward’s research focus is the experience of dementia and how this is shaped by relationships, social location and socio-cultural factors. His qualitative doctoral research
addressed spousal relationships and dementia which was explored through joint
interviews with men with dementia and their partners. He is presently undertaking
research on the experience of caring for a person with dementia and this has included
facilitating focus groups with carers. Edward’s current university teaching
commitments include modules on research methodology, healthy living through the
lifespan and also supervising a PhD on professional identity.
JEAN TOTTIE
Life Story Network CIC
Jean took early retirement from the NHS when her father needed more care and
support as his dementia advanced rapidly. She now works voluntarily to improve
services for people with dementia and their carers and is Chair of the Life Story
Network CIC. She is passionate about supporting family carers to have a voice, to be
partners in care and use their experience to help other carers and professionals so
NICKY TAYLOR
that services continue to improve. Jean works with family carers to build their
West Yorkshire Playhouse
resilience by focussing on communication and relationships using narrative therapy.
Nicky has twenty years' experience working with older people and people with dementia
Jean has been working to establish a national network for carers of people with
focusing on arts, health and wellbeing. As Community Development Manager at West
Yorkshire Playhouse she develops innovative methods of connecting people with dementia dementia – tide, together in dementia everyday.
with the arts and leads Heydays, the Playhouse’s flagship participatory arts project. She
conceived and led the UK’s first Dementia Friendly Performance of a mainstream theatre
CATHY TREADAWAY
show and is currently sharing this model with other theatres and arts centres with support Cardiff Metropolitan University
from the Baring Foundation. She is a 2014 Winston Churchill Memorial Trust Fellow
Cathy is Professor of Creative Practice at Cardiff School of Art and Design. She was one
researching and sharing practice on arts and dementia in North America and Australasia. of the founder members of CARIAD (Centre for Applied Research in Inclusive Arts and
VAL TAYLOR
Val Taylor has worked for the Trust for the last five years. Following on from her
previous career in education she moved over to care, primarily to deliver activities of
daily living at Apple Trees, a specialist dementia care home. Val is also the Dementia
Lead for the home.
Design), is a Fellow of the Royal Society of Arts, Fellow of the Higher Education
Academy and Visiting Scholar at the University of Technology Sydney. In January 2015
Cathy was awarded a major AHRC research award for LAUGH (Ludic Activities Using
Gesture and Haptics), an international interdisciplinary collaboration which over the
next three years will be developing playful artefacts to support the wellbeing of people
with late stage dementia.
SARAH VOSS
GAVIN TERRY
Gavin has been Policy Manager at Alzheimer’s Society since March 2014 and leads the
Policy team in the analysis of emerging health, social care and public policy and how it
relates to the needs and experiences of people affected by dementia. His team are
also responsible for forging relationships and working to influence key stakeholders, as
well as developing key policy evidence around dementia to support the Society’s
lobbying and campaigning strategic objectives. Gavin previously held the role of Policy
Manager at Diabetes UK and, prior to working in the voluntary sector, worked in the
NHS in both primary and acute care service development.
HILARY TETLOW
Former carer and member of tide ("together in dementia everyday")
Hilary Tetlow gave up running her own fashion merchandising consultancy company to
care for her mother for the last 3 years of her life. Her mother had Alzheimer’s and
passed away just before Christmas last year. Hilary is active in her local CCG and the
recently formed SURF Group (service users reference forum) in Liverpool. She is
passionate to improve the profile and wellbeing of carers and is an active member and
supporter of tide (“together in dementia everyday”) hosted by Life Story Network.
University of the West of England
Sarah Voss is a Senior Research Fellow in Emergency Care at the University of the West
of England, Bristol. She is currently engaged with a number of pre-hospital research
projects as part of the Critical and Emergency Care Research Team. Previous and ongoing work has led to excellent levels of ambulance service engagement which has
provided the opportunity to link in to previous research initiatives on the recognition
and management of dementia. Current and planned work with ambulance services will
explore alternatives to acute hospital admissions for people with dementia.
HUGO DE WAAL
Health Innovation Network
Dr Hugo de Waal is the Clinical Director for Dementia. He is a Consultant Psychiatrist,
based in Norfolk and in the South London and Maudsley NHS Foundation Trust and an
Associate Postgraduate Dean in Cambridge. He has a national and international
reputation in designing dementia services.
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Speaker biographies
BARBARA WALKER
JO-ANNE WILSON
Gold Standards Framework Centre
Barbara qualified as a nurse in 1982 and since then has developed a broad range of
experience in the best quality care of older people, especially end of life and dementia
care. She has undertaken post-graduate palliative care training with the University of
Huddersfield, and attained her BSc honours in dementia studies with the University of
Bradford. She is a dementia mapper and enjoys working with care teams to help
improve the well-being of people living with dementia and those who are at the end of
their lives. A keen gardener, she spends her spare time in her garden with her small
grandchildren.
Galanos House
Jo grew up in Warwickshire and trained in London to be a nurse. Jo started to work in
the elderly care sector in 1997 specialising in dementia where she gained various
dementia related qualifications and a teaching certificate. During this time whilst
working in care homes and the community, Jo also worked for Warwickshire Action
Reminiscence Project as a trainer, teaching Reminiscence and Person Centred
Dementia. Jo has worked at Galanos House since 2003 and set up the specialist
dementia service in Poppy Lodge in 2011. She has played a key role in developing the
home, working with Dementia Care Matters to become a Butterfly Service accredited
home since 2013.
LAURA WALKER
Memory Matters South West
With a background in mental health nursing, Laura worked for the NHS and the private
sector before starting Memory Matters in 2010. Since then she has developed and
delivered training programmes focusing on person-centred interventions. Her work
includes a pilot programme for care home staff to encourage appropriate personcentred intervention with the aim to reduce behaviours that challenged staff. As well
as delivering training in Cognitive Stimulation Therapy to NHS, care homes and Third
Sector staff, Laura has developed a model of day care for people with mild to moderate
dementia based on the core principles of CST, peer support and self-help.
HILARY WOODHEAD
Support in Dementia
Hilary Woodhead and Emma Hewat have 40 years joint experience of working directly
with people with dementia and their families, managing services and developing
complex packages of bespoke service improvement and training. They co-founded
Support In Dementia in 2014. Support In Dementia provides dementia specialist
support and improvement for health and social care, through education and training,
service improvement and project management.
PAT WOODS
SARA WILCOX
Pathways Through Dementia
Sara founded Pathways Through Dementia in 2012, a charity which focuses on the legal
aspects of the dementia journey. For 5 years prior to starting the charity, Sara ran a
legal helpline, gave talks and delivered training to a wide range of audiences on topics
such as paying for care, managing money, welfare benefits, and community care laws.
She started Pathways, re-opened the helpline and now travels across the country
giving talks to community groups, business networks, health professionals, and
solicitors. Sara also has personal experience of dementia as both her maternal
grandmother and paternal grandfather died with Alzheimer’s disease.
DANIELLE WILDE
Royal Free London NHS Foundation Trust
Danielle Wilde took over the My discharge Project in January 2014 as a dementia
specialist OT. She used the learning outcomes from the project to develop the CAPER
toolkit. This provides valuable sharing of her skills through practical guidance and an
effective way to support multiple professionals in addressing the complex needs of
patients who have dementia. She is now Dementia Lead AHP at the Royal Free London
NHS Foundation Trust.
ANGIE WILLIAMS
Angie Williams began her career as a health care assistant and subsequently
completed Registered Mental Health Nurse training. Once qualifying, Angie became a
staff nurse in a day hospital for older people, further developing her career as a
Memory Service Admiral Nurse. Angie left the NHS to join The Orders of St John Care
Trust and became the second care home based Admiral Nurse. There have been many
opportunities to influence changes in practice and improve the lives of both formal and
informal carers, which in turn improve the lived experience of residents. Angie has
presented at several conferences and has had posters and articles published about the
work of the Admiral Nurse in care homes.
GEMMA WILLIAMS
Norfolk County Council
Gemma has a background in mental health nursing, and a special interest in person
centred dementia care. For the last three years Gemma has worked as a prison
librarian. Gemma is a volunteer for the Forget me Nots charity, helping facilitate
Cognitive Stimulation Therapy groups, including a group in the prison lifers' unit.
Carer
Pat Woods. Pat’s wife, Liz, was diagnosed in 2011 with Post Cortical Atrophy aged 56.
Pat has lived and worked in Oxford for many years.
ROSEMARY WOOLLEY
Bradford Institute for Health Research
For the past ten years, Rosie Woolley has worked on a series of linked projects around
using observational tools in acute care to help describe and develop person-centred
care practices for people with dementia in acute wards. Following on from work to
investigate the use of Dementia Care Mapping in elderly care wards, she took the lead
in developing a qualitative approach to observing care (the Person, Interactions &
Environment) tool for use in the first audit of dementia in general hospitals in England
& Wales 2011. Rosie has a behavioural sciences background and an MSc in social
research methods.
CAROL WOOTON
The Orders Of St John Care Trust, Bemerton Lodge
Carol Wooton is the head of care at Bemerton Lodge, part of The Orders of St John Care
Trust. Carol has worked in the care sector for 14 years, progressing from a carer to her
current role over this time. During this time Carol has looked after individuals with
differing needs and has always tried to be an advocate for person centred care and
encouraging independence to enhance the resident’s lives. Currently her role involves
caring for people who have more advanced levels of dementia which includes
promoting activities of daily living alongside the carers.
RACHEL WORT
The Good Care Group
Rachael Wort is a Regional Manager for professional home care provider The Good Care
Group. With over 20 years’ experience in the care sector, Rachael’s background is
varied, with qualifications in disability, counselling and augmentative communications
assessment and intervention. Rachael developed more than a keen interest in
dementia care whilst supporting her own mother with young onset dementia. Prior to
joining The Good Care Group in 2013, Rachael developed and managed a therapeutic
activities day centre for those with dementia. This centre became the flagship centre
of the local authority. Rachael is keen to see people with dementia and their
significant others well supported through meaningful and highly individualised service
provision and respectful and dignified care management.
LUCY YOUNG
TOBY WILLIAMSON
Mental Health Foundation
Toby joined the Foundation in 2002 and is responsible for the Foundation’s work on
mental health in later life, dementia, and mental capacity. Recent work on dementia he
has led on includes the Foundation’s involvement with the DEEP network, dementia and
human rights, dementia friendly communities, different realties experienced by people
with more severe dementia, self-management and peer support. He has published
extensively and is currently co-authoring a book on values-based practice and dementia.
He also led on policy work at the Foundation and for 18 months was seconded to work at
the Ministry of Justice to work on their Mental Capacity Act Implementation Programme.
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REACT, Cardiff & Vale University Health Board
For 3 years Lucy Young has been a Dementia Care Advisor in the Community REACT
service. Her work consists of family intervention, carer education and support during a
crisis. Lucy has started a group for family members during a crisis. Lucy is passionate
about continuing to raise people’s awareness to Dementia and she delivers training on
Dementia across the health board to improve education in all working areas. Lucy also
is a lead facilitator for ‘Providing Care for Individuals with Dementia’ which is an
Agored Cymru recognised course that is offered to care homes.
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SPEAKERS’ ABSTRACTS
Gillian Bailey, Helen Sanderson Associates [1.5]
A SELF-ASSESSMENT TOOL TO CHECK PROGRESS IN
DELIVERING PERSON-CENTRED CARE
The North East dementia strategy stated that they wanted to improve the overall
quality of support to people living with dementia in residential care homes, and in
order to do that they wanted to take stock of where they were right now in terms of
delivering personalised support and identify what it would look like if they were
successful and develop a plan to move towards the vision of success on centred
services. This presentation will give an overview of how we used the Progress for
Providers self-assessment tool to support this, 176 homes from across the North East
participated in the programme. The focus of the programme was delivering change, not
training, leading to delivery of personalised support to each person living in the home
and a more person centred culture by shifting the habits and expectations of all stakeholders. Managers from each care home in each local authority were invited to a day
where they used the Progress for Providers (P4P) self assessment tool to assess
where they were in terms of delivering personalised support by going through each
element of P4P and decide what would need to happen in each home in order to deliver
personalised support. Managers then learned about how person centred thinking tools
could help and identified key members of their team to attend 2 day training on person
centred thinking skills to support them. Local capacity was developed by mentoring
candidates nominated by the local authorities to become accredited in delivering the
person centred thinking skills two day training course to provide on-going coaching
within the homes.
Jeni Bell, University Hospital Southampton NHS FT and Sarah Mould, Dementia
Training Company [2.5]
HAVE PATIENT PASSPORTS AND LIFE STORIES BECOME A
‘TICK BOX’ EXERCISE?
Since the National Dementia Strategy (2009), many documents have advocated that
using patient passports and life stories enhances person centred care planning.
However the authors would like to propose the idea that the completion of these
documents has not always had the desired effect. This oral presentation and film will
present the innovative work undertaken to challenge how caregivers collect and use
life history information and provides a learning tool to improve the understanding and
skills of the individual in making this information meaningful. The project aimed to
provide evidence that supporting people in developing their skills to engage with the
person with dementia and develop care planning and implementation that met
individual needs would reduce anxiety and distress and enhance well being for the
person with dementia. The joint project between the Admiral Nurse Clinical Specialist
and the Dementia Training Company was to develop a short training film based on their
observations of practice in a variety of care settings and their experiences of
collecting life stories of individuals with dementia to promote person centred care. The
film was part of a training package that included facilitated discussions and workshop
activities. Questionnaires were developed to capture the learning of the individuals and
their personal change growth in understanding. Dementia Care Mapping was used to
observe the difference in interactions between caregivers and people with dementia.
Some services and caregivers were able to review their approach to collating life
stories and developed confidence in using the information constructively in their care
planning and care delivery for individuals with dementia. This project has shown that
there need to be clear objectives as to how life history tools are promoted and how
they enhance person centred care.
Claire Benjamin and Carol Rogers, National Museums Liverpool [4.4]
tion that combines dramatic set pieces, forum theatre, interactive facilitation, museum
and gallery tours, reminiscence therapy and museum education activities. The active
programme is supplemented by branded training resources, which can be taken away
and adapted for use in a range of care settings. Independent evaluation completed by
research partners at the Liverpool John Moores University has revealed significant
outcomes including increased awareness and understanding of dementia and its implications; improved subjective wellbeing for professional dementia carers; skills
development including listening, communication and professional empathy; improved
capacity for individual and collective critical, reflective care practice; confidence in
trying new, creative approaches to dementia care; and increased cultural engagement
with museums.
Phil Benson, Community Integrated Care [EB 1.2]
DELIVERING PERSON-CENTRED CONTINENCE CARE
Continence care is one of the fundamental areas of support when providing support to
older people and there are a huge amount of resources and research in the field of
continence care but we identified that when elements from research and best practice
are implemented in a person centred, responsive manner the benefits to a person’s
quality of life can be tremendous. We wanted to see if there was a measurable or
observable improvement in a person’s wellbeing and quality of life when that person
received person centred, responsive continence care that was bespoke to them.
During our research we found that enabling the team to use a wider range of products
and selecting the best product for the person as an individual we were able to reduce
the overall requirement for continence support; this reduced the amount of occasions
a person had to receive continence care and in some cases improved a person’s
continence. We also found that when we looked at the cause of a person’s incontinence
in much more detail we were able to establish that some people required more signage
or more specific support – be it guidance or assistance – and did not necessarily need
any continence products as the cause of their incontinence could be managed without
them. This had the largest improvement in quality of life with people visibly less
distressed or anxious about wearing continence products.
Wendy Brewin, Sensory Trust and Laura Walker, Memory Matters South West [3.2]
THE USE OF NATURE IN COGNITIVE STIMULATION THERAPY
Cognitive Stimulation Therapy and nature both enhance the cognitive abilities of
people with mild to moderate dementia. Sensory Trust and Memory Matters South
West combined CST and nature-based approaches in a small pilot project to discover if,
(a) immersion in nature enhanced people’s experience of CST, (b) if CST sessions could
be adapted to incorporate outdoor environments and nature-inspired activities and (c)
whether our approaches stimulated communication, physical and mental health
through the use of cognitive tasks. We adhered to the weekly themes as set out by the
CST programme and supported them through the use of outdoor activities. Our presentation will include a breakdown of the nature-based approaches used and their impact
on the participants; including those activities which successfully supported group
members and those that were less successful. We will outline any issues we faced and
the solutions we used to overcome them as well as difficulties we were unable to
overcome. This is a new approach we have not used before and ‘new ground’ for both
the Sensory Trust and Memory Matters South West in combining these two psychosocial approaches to dementia care. This has the potential to enhance current CST
programmes, to take this psychosocial method to a new level; to support people living
with mild to moderate who are attending CST and MCST groups around the UK and
those who are providing this vital support.
Julia Botsford and Karen Harrison Dening, Dementia UK [3.4]
HOUSE OF MEMORIES: A MUSEUM TRAINING INTERVENTION DEMENTIA, CULTURE AND ETHNICITY
In 2012, National Museums Liverpool launched a dementia care training programme
that has since received critical acclaim across multiple platforms, with more than
8,000 health, housing and social carers having participated nationally. House of
Memories is a museum training intervention with the aim of enabling carers to help
those directly affected to ‘live well’ with dementia. Other developments include a ‘My
House of Memories’ app, and House of Memories ‘buddy’ programme for family carers.
Dementia affects people differently, often leading to social withdrawal and isolation.
Maintaining communication and conversational opportunities are immensely valuable
for the person‘s wellbeing, quality of life and sense of staying connected. To address
the increasing societal challenges that dementia presents, House of Memories was
developed as a tool to support communication, cognitive stimulation and engagement
in meaningful activity, whilst also providing practical resources for the health and
social care sector. House of Memories is a full-day museums-based training interven-
Cultural and ethnic background play a major role in determining a person's beliefs
about health and illness as well as their attitudes and preferences when it comes to
accessing treatment and care. In dementia care, practitioners need to ensure that the
people they are working with receive support which is delivered appropriately and with
cultural sensitivity. The aims are (a) to explore some of the challenges and benefits of
working within and across ethnicities and (b) to consider issues associated with
promoting effective communication when working across and within ethnic groups and
cultures. Method: In discussing the issues, illustrative examples will be drawn from the
personal experiences of family carers from a range of different cultural perspectives
as well as from a research study which explored the experiences of Black Caribbean
and Greek Cypriot partners of people with dementia. Results: Cultural and ethnic
backgrounds are important facets of who we are and how we relate to each other. The
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perceived identities of the practitioner or researcher on the one hand, and the person
with dementia and their family on the other, will have an impact on interactions and
the quality of relationship that develops between them. Carers report both positive
and negative experiences in this respect, both within and across cultural and ethnic
groups. Where the person with dementia's ability to understand and express
themselves in English is limited there can be significant challenges in accessing
appropriate care and support, although good communication is still achievable.
Discussion and Conclusions: The existence of cultural and ethnic differences between
practitioner/researcher and person with dementia and carer can bring benefits and
challenges. The same applies where there is a shared background. Sensitivity to
cultural issues and identities, as well as strategies to address cultural and language
issues is crucial in delivering effective and person centred care in dementia.
on the home’s care culture (its practices and procedures) to uncover the key factors
that helped or hindered meaningful and active outside space for the residents.
Ruth Chaplin, Pennine Care NHS Foundation Trust [2.4]
THE STOCKPORT YOUNG ONSET DEMENTIA SERVICE –
DOES NO NEW MONEY MEAN NO SERVICE? - CREATING AN
EFFECTIVE, PERSON-CENTRED SERVICE OUT OF EXISTING
RESOURCES
There are now approximately 42, 325 people under the age of 65 who have a known
diagnosis of dementia (Alzheimer's Society 2014). Separate, age appropriate services
for younger people with dementia are recommended by the Alzheimer's society and
the NICE Dementia Guidelines (2011)
Dawn Brooker, Association for Dementia Studies, University of Worcester, Philly
In 2009 in response to consultation meetings with younger people with dementia and
Hare, Joseph Rowntree Foundation and Wendy Mitchell, York Minds and Voices
their families the staff team at the Meadows decided to create a young onset dementia
[PLEN 1]
team out of existing community mental health team resources. The team is comprised
WOMEN AND DEMENTIA
of small amounts of input from a Consultant Psychiatrist, a community psychiatric
Dawn Brooker was commissioned by Alzheimer’s Disease International (ADI) to review nurse, an occupational therapist, a Young Onset Social Inclusion worker and a social
the international research on women and dementia. The subsequent report Women and worker. The aim of the team was to improve the quality and continuity of care given to
Dementia: A global research review was authored by Dr Rosie Erol, Prof Dawn Brooker this client group, to increase their levels of participation in their local communities and
and Prof Liz Peel from the University of Worcester and published early 2015. It provides to reduce the number of admissions to the hospital mental health services.
an overview of international research from all over the world, highlighting the need for
a broader, evidence based approach to female-targeted dementia health programmes Gary Cleeve, Salisbury NHS Foundation Trust/Health Education Wessex [2.5]
particularly in low and middle income countries, where female-led family caring
DEMONSTRATING THAT DEMENTIA FRIENDLY DESIGN
remains the predominant care model. Equally in high income countries, more women
live with dementia, more women are family carers and more women make up the
IMPROVES OUTCOMES ON AN ACUTE MEDICAL WARD
health and social care workforce. Dementia initiatives will impact on women differently Evidence exists highlighting how the physical environment can impact those with a
from men and all policy makers need to be aware of this.
cognitive impairment related to dementia. Many clinical environments present
challenges and dangers to those with dementia. This project aimed to apply the best
Dawn Brooker & Shirley Evans, University of Worcester, Rose-Marie Dröes, VU
available evidence in order to redesign an acute general ward. It was expected that the
University Medical Centre [1.6]
design changes would support practice changes, in turn improving patient experience
and outcomes. Although the focus was on dementia, the ward needed to retain funcFACILITATORS AND BARRIERS TO OPENING A MEETING
tionality as an acute medical ward. Utilising the King’s Fund Assessment tool ‘Is your
CENTRE FOR PEOPLE WITH DEMENTIA AND THEIR CARERS Ward Dementia Friendly?’ the Project Team assessed the clinical areas and generated a
score which was low, indicating that the environment was not dementia friendly. Using
IN THE UK
the tool enabled insight into what could be improved and initial plans were made.
MEETINGDEM is a Joint Programme for Neurodegenerative Disease Research (JPND)
These plans were then measured against best available evidence using a broad
funded project. It focuses on the adaptive implementation and evaluation of the
Meeting Centre Support Programme (MCSP) for people with dementia and their carers literature search and review. The project team also visited other services that had
redesigned their environments already. Final evidence based plans were agreed and
in Europe. MCSP was developed and evaluated positively in the Netherlands and is
the team looked at practice changes that would support the new ward design. The
being piloted in three European countries, Italy, Poland and the United Kingdom. The
aim of the initial phase was to investigate what the potential conditions for successful medical and nursing teams fully engaged and adopted these practice changes whilst
implementation of the MCSP are and to identify what country specific facilitators and located on a temporary ward, ensuring that they were embedded as far as possible
barriers were foreseen and what country specific strategies and resources are needed into team culture before moving back to the newly opened ward. Following a
for successful adaptive implementation of the Dutch MCSP model. The programme will successful move back, measurement of the impact could begin. Initial findings were
38% increase in the visibility of our nursing staff – as reported by patients and their
be further evaluated in comparison with usual day care in terms of its impact on the
families, 75% decrease in negative comments about receiving timely care and
behaviour, mood and quality of life of people with dementia and carers, and the cost
attention, 35% increase in positive comments relating to eating, drinking and nutrition
effectiveness. We will report on the UK data regarding potential facilitators, barriers
overall, 80% decrease in violence and aggression towards to staff, 40% increase in
and possible solutions to implement MCSP successfully and compare it with the data
positive comments about the overall standard of care and 40% increase in falls,
from Italy and Poland. Major barriers foreseen in the UK and which were in common
however 100% decrease in harm associated with falling.
with the other countries included financing; the risk from competition with other
organizations given funding pressures; the difficulty of developing a programme which
Clare Cook, Birmingham and Solihull Mental Health Foundation Trust [EB 1.4]
meets the needs of people at different stages of dementia and minority groups and
their carers; the capacity of the Meeting Centre as it is possible that expectations of
ALL OF ME: A LIFE STORY PERFORMANCE
potential participants might be raised and then cannot be accommodated, and availWe use the arts to encourage engagement and the maintenance of self. We have
ability of suitably qualified and experienced personnel including volunteers. The
combined this with the work on life stories to create a production for service users,
process of identifying facilitators, barriers and solutions at an early stage can be seen families, staff and the public called ‘All of me’. The play blends life stories from 4
to be an important aspect of the implementation process for Meeting Centres which
service users and the story of a fictional couple affected by dementia. We discuss the
will help support others to set up an MCSP. The implementation of an MCSP can be seen experience of working with the Women and Theatre Company to stage this event.
as an opportunity to change the approach to dementia care and to promote social
inclusion of people with dementia and carers.
Claire Craig, Sheffield Hallam University and Grace Stead, Sheffield Dementia
Action Alliance [5.7]
Malcolm Burgin and Gill Roberts, Alive! Activities
DANCE AND MUSIC
DEMENTIA: LEARNING ACROSS GENERATIONS
At present over two million students are enrolled on courses at Universities in the
United Kingdom (Higher Education Statistics Agency 2014). This number represents a
significant proportion of the total population. Equipping individuals with the
knowledge, skills and understanding of who people with dementia are is essential for a
number of reasons. First and foremost many students will be personally affected now
or in the future by dementia: whether this is through having a family member or friend
Debbie Carroll & Mark Rendell, Step Change Design Ltd [1.1]
with the diagnosis. Professionally students will also have a role to play. Not only are
many health care students educated in universities but so are future policy makers,
“WHY DON’T WE GO INTO THE GARDEN?”
architects, designers who will have a role in developing and designing dementia care in
Two UK garden designers set out to identify which features and design elements help
create an actively used outside space in a care setting for people living with dementia. the future. This presentation describes an educational innovation that brings together
design students, people with dementia and clinicians. It will describe the background
Early on in the self-funded research project the designers observed that there was
more influencing the use of the garden than the design alone. They widened their remit to the work; the methods used and will include videos of some of the innovative design
to include observations made in the indoor setting as well as the outdoors, focusing in solutions that were created in partnership with people with dementia and their carers.
Start your conference day the Alive! way. Connect with the breath, with your being and
with each other in a fun and energising workshop. Led by Gill Roberts, this session
offers a taster of Alive!’s approach to dance and movement for people living with
dementia - and is guaranteed to set you up for the day ahead.
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We will reflect on the transformative nature of the innovation in terms of its impact on
the students and their understanding of who people with dementia are and the role
they may play in the future in designing products with people. Importantly it will also
include reflections from people with dementia and their carers about the value of
design in promoting well-being and the value of being involved in research and
teaching opportunities.
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Frances Duffy, Northern Health & Social Care Trust [1.5]
CLEAR: DEMENTIA CARE AND DISTRESSED BEHAVIOUR
People living with dementia in care homes can present with Behavioural and Psychological Symptoms of Dementia (BPSD) that care home staff find challenging and
difficult to understand. BPSD can lead to unnecessary breakdown in placement or
unnecessary admission to hospital. The Northern Health and Social Care Trust
Dementia Home Support Team (DHST) accepts referrals for service users who present
Meg Crossley, Airedale NHS Foundation Trust [2.5]
with BPSD whose placement is at risk. CLEAR Dementia Care was developed to help
THE DEMENTIA-FRIENDLY BUTTERFLY ROOM WITHIN A&E AT understand BPSD in the context of the person and their environment; and identify any
unmet need(s). Understanding BPSD requires engagement and support from care
AIREDALE HOSPITAL
home staff. CLEAR Dementia Care also addresses the challenges care home staff
Airedale Hospital was the second-ever Butterfly Scheme hospital and delivers the
experience in accurately recording and understanding behaviour. Individually tailored
scheme very successfully, but wanted to promote dementia-friendly care from the
Behavior Charts are used to record daily activity and help understand behaviour.
moment of hospitalisation. A & E / ED can be stressful for everyone, but especially so
Written recommendations provided to care home staff describe the behaviour, why it
for a person with dementia and their carers. The building of a new A&E department,
may be occurring, and have a plan to address identified unmet need. The Challenging
opening in December 2014, would allow dementia-friendliness to be incorporated
Behaviour Scale (CBS, Moniz-Cook et al., 2001) is administered to assess the frequency
within the whole design and structure. The team wanted the hospital s dementiaand intensity of behaviours at the beginning and end of intervention. Since DHST
friendly approach and use of the Butterfly Scheme to be enhanced by providing as
introduced CLEAR Dementia Care, the average length of involvement from DHST has
dementia-friendly an environment as possible in the hectic world of A&E. They knew
that noise, distracting technology and confusing surroundings would ideally be avoided reduced by 53% and the number of face to face contacts for a service user has
reduced by 52%. This indicates that CLEAR Dementia Care is more time efficient and
to provide as calm a space as possible whilst supporting safe care. Within the new
is helping DHST to effectively intervene and support individuals and their carers. The
department an especially dementia-friendly Butterfly Room would be designed to
minimise stress during emergency care. The team consulted with a dementia-friendly assessment tools and paperwork promote ownership and joint accountability between
DHST and care home staff with increased engagement and collaborative working.
design company, plus with the Butterfly Scheme coordinator and people living with
There is more accurate recording of behaviour, which in turn, facilitates a timely
dementia and carers. A fundraising campaign was launched to help purchase the best
environmental enhancements available. A&E staff report that the Butterfly Room and formulation and successful intervention plan. The outcome is better care, enhanced
the new environment better enable patients families to participate in their care. Staff quality of life for the person with dementia and their placement is maintained.
comment that care is now more individualised and more tailored to dementia care
Helen Davies, South Staffordshire and Shropshire Foundation Trust [3.2]
needs. Patients living with dementia have commented that this is now a supportive,
calming environment, with particular comments approving the colour scheme and
MAKING A DIFFERENCE WITH
signage, which enhance way finding. Discussion and conclusions: Allowing for safe care COGNITIVE STIMULATION THERAPY
whilst removing the typically most distressing elements of emergency care environCognitive stimulation therapy (CST) is a brief non-pharmacological treatment
ments and providing soothing distractions not only supports the person with dementia, programme appropriate for people with mild to moderate dementia. Recognised in
who is then calmer, but also their family carer and the staff within the department.
NICE guidelines and reflecting Living Well with Dementia values, a CST group was set up
Dementia-friendly features promote dementia-friendly care. Insightful design within
for people with dementia living in the community in the Telford and Wrekin Area. The
the department as a whole supports the well-being of all patients with cognitive
group aimed to empower, educate and support people with dementia in how they can
impairment.
adopt CST principles and activities into their everyday lives and so retain their skills
and independence for longer periods, as well as provide social opportunities and peer
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support to people with dementia, who can otherwise become socially isolated. Using
the ‘Making a Difference’ workbook published by The Journal for Dementia Care as a
guideline, the memory service set up one 1.5 hr session per week for 10 weeks with
evaluation forms being issued at the end of the ten sessions. A one-off maintenance
session was also conducted approximately 6 weeks after sessions ended. Feedback
from the groups showed people enjoyed the sessions and in some cases led to people
engaging in new activities to sustain CST activities. DEMQOL outcome measures utilised
did not consistently match verbal feedback provided by carers and people attending
the sessions, therefore outcome measures are still being explored. Transport and
service availability to provide this led to some limitations with people attending
sessions, and the group is not suitable for people with severe dementia. From our
experiences, CST can be effective form of therapy that can improve the quality of life
and confidence of those who attend sessions. CST can be used as a stepping stone and
support group to encourage people to become engaged in and sustain meaningful
occupations that will further improve their mental and physical health and quality of
life long term.
admissions assessment is variable and medical conditions are not well covered. Care
homes appear to rely on the care assistant having an in depth knowledge of the
resident and noticing a change in health status. However, care assistants do not
usually have access to the assessment and care planning documentation. Nor is it clear
that close relatives know how to report concerns over changes in the health of a
resident. This planned study will explore current approaches to admissions
assessment and ongoing monitoring in nursing homes with the aim of producing
guidance appropriate to this setting.
Anna Eden, Young Dementia UK and Pat Woods [2.4]
SUPPORT FROM CLINIC TO COMMUNITY FOR PEOPLE WITH
YOUNG ONSET DEMENTIA
The lack of adequate post diagnostic support has been identified for all people with
dementia but for those under 65, appropriate support is even rarer. A pilot project
sought to address the lack of good, timely post diagnostic support for younger people
with dementia and their families and to provide easy access to information, advice and
support relevant to their needs. A YDUK Family Support Worker attends each clinic
Professor Murna Downs, Jenny Adams, Catherine Powell, University of Bradford,
when a new diagnosis was being given and sits in to hear the diagnosis. Contact is
and Rachel Binks, Airedale Partners Vanguard [4.3]
then followed up immediately after the clinic or arranged within the next few days.
IMPROVING HEALTH CARE IN CARE HOMES
The support worker also had agreement to attend clinics when people supported by
As the health of care home residents becomes increasingly complex, there is a need
YDUK attend. Our aim was to ensure that the Support worker could offer emotional
for effective practices in nursing homes that can successfully manage their health
support for person with dementia and family, connect them with other support
conditions. The Better Health in Residents in Care Homes project (BHiRCH) is a collabo- available, link them with other people in similar situations, equip families with the
rative project, led by the University of Bradford, which aims to improve early diagnosis 'tools' they need to adapt to their changed lives and to offer a continuity of support.
of deterioration of four conditions that most commonly lead to hospitalisation:
The pilot project will be presented and Pat Woods will speak about the positive effect
congestive heart failure, urinary tract infection, respiratory infection and dehydration. of being connected in, ongoing support and living well.
By improving early detection of acute changes in these conditions, we aim to prevent
further deterioration and thus improve outcomes for the resident. It is hoped that this Heather Edwards, Norfolk and Suffolk NHS Foundation Trust [5.5]
will correspondingly lead to a reduction in the rate of unnecessary hospital admissions
MUSIC MIRRORS
of care home residents. These presentations focus on two key elements that will
inform the development of the complex intervention for this project. Dr Alan Blighe will Music Mirrors build on and take further the accepted power of music to trigger autobifirst provide an overview of how we have developed a novel care pathway, which will be ographical memory and support relationships. In this project, people with early-stage
dementia are helped to create their own resources of brief written life-story with cues
our primary end-user tool in delivering the intervention in care homes. Dr Catherine
of sound or music embedded in a form easily stored and ‘portable’ all through the
Powell will then describe the findings from interviews with key academic and care
dementia journey. This can be very useful at times of change, crisis or transition in
home informants about the competencies required for early detection of changes in
care. Making a Music Mirror appears to be easily accepted as post-diagnostic support.
health, and effective approaches to up skilling care home staff for this task.
Collaborators include University College London, Lancaster University, Queen Margaret Using a person’s own individual words linked to significant sounds seems particularly
helpful in sparking memory and sustaining identity, and this information can easily
University, Bradford Institute for Health Research (BIHR), Newcastle University and
travel with the person with dementia for quick access and use if care circumstances
Barchester Care Homes. This report is independent research funded by the National
change. It is in effect a simple form of advance care planning. The concept was
Institute for Health Research. The views expressed in this presentation are those of
developed by a voluntary organisation (Come Singing) with Norfolk and Suffolk NHS
the authors and not necessarily those of the NHS, the National Institute for Health
Foundation Mental Health Trust and is used by (amongst others) the Norfolk and
Research or the Department of Health.
Norwich University Hospital and Age UK. It also forms part of My Brain Book, a digital
Enhancing health in care homes using technology
dementia care platform developed by the South London Health Initiative Network and
Rachel Binks’ presentation describes the Immedicare service provided to nursing
Ixico. Training (with manual) is delivered via short workshops: over 200 professional
and residential care homes by Airedale NHS Foundation Trust and the technical
and informal carers have trained in the past year and there has been a promising pilot
company Involve. Launched in 2011 it now supports 10,000 nursing and care home
project linking older school-age children with care home residents. NSFT is now
residents living in almost 300 homes across England. Delivered remotely via a 24/7
Telehealth Hub, it provides immediate access to a clinical opinion through secure video undertaking an evaluation of the service with the University of East Anglia as part of
conferencing or via dedicated telephone lines. The model seeks to promote independ- work towards an NIHR research bid.
The potential of Music Mirrors has been recognised beyond dementia - a simple,
ence and quality of life while reducing hospital admissions, emergency department
almost cost-free means of helping people to keep their voices if words and memories
attendance and primary care visits. It is highlighted as an emerging model of care in
fade. This presentation will describe how this innovation is being implemented and
the 5 Year Forward View. Feedback from residents and staff has been positive. An
evaluation by York Health Economics Consortium demonstrated significant savings due describe examples of use.
to a 37% reduction in urgent admissions and a 45% reduction in emergency
department attendances. Recent related developments include: 1) Goldline - a service Ruth Eley, Pat Broster and Jean Tottie, Life Story Network, Jill Pendleton,
Merseycare NHS Trust, Louise Marks, Carers Trust and Hilary Tetlow, former carer
co-created with patients, GPs, commissioners, and a local hospice which specifically
[5.6]
addresses needs of patients approaching end of life and their carers. It supports
people to achieve their wish for a ‘good death’ at home. We have seen a significant
FROM STRENGTH TO STRETH: FAMILY CARERS MATTER TOO
reduction in the percentage of patients in this cohort who die in hospital (14%, the
This symposium will be chaired by Ruth Eley of the Life Story Network and will draw
lowest in England); 2) The Intermediate Care Hub facilitates a single point of access
together work from three projects, all concerning the vital role of family carers in
and coordinated assessment of intermediate care needs. Staffed by a health and social supporting people living with dementia. (1) The Carers Trust’s research report A Road
care team this ensures an integrated approach to assessment, resulting in long term
Less Rocky – Supporting Carers of People with Dementia along with the resulting (a)
care placements being avoided and staff and system efficiencies being realised; and 3) toolkit for professionals who may come into contact with carers and (b) road map to
GP Triage allowing care homes with telemedicine to use the hub as a GP triage centre. guide carers through their caring role; presented by Louise Marks. (2) Merseycare NHS
The clinical staff triage calls from homes requesting a GP visit. Following an
Trust’s structured diagnostic support programme for people living with dementia and
assessment via video, support, advice and on-going monitoring can be undertaken,
carers; presented by Jill Pendleton. (3) Together in Dementia Everyday (‘tide’) – the
preventing a GP visit becoming necessary.
new national carers’ involvement network, launched in June 2015, which is building up
Admissions assessment and ongoing monitoring of health in care homes
a cohort of expertise which the NHS and social care can draw on when reviewing,
Admissions assessment and subsequent planned monitoring are key patient safety
designing and developing service provision; presented by Jean Tottie, Hilary Tetlow and
initiatives to improve early recognition of acute deterioration in physical health of
Pat Broster.
patients in hospital (NICE, 2007). However, there is little known about the admissions
The session will outline the benefits of a structured approach to providing support
assessment and the relationship to planned subsequent monitoring of care home
for carers, based on evaluation, in particular the value of giving timely information
residents in the UK, and how this impacts on the recognition and management of acute about dementia, what services can offer and how to access them, as well as of peer
physical deterioration. There may also be a tension between person centred care and support and feeling connected to others. It will explore how carers have used their
patient safety approaches to improving the quality of acute care in care homes. Jenny voice and influence across a range of initiatives in recent years, culminating in the
Adams reviews published research which suggests that the purpose and quality of
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development of ‘tide’. It will also highlight some of the challenges of enabling carers to Jane Fossey, Oxford Health NHS Foundation Trust & Clive Ballard, King’s College
access support in their own right and the importance of ensuring that not only do they London [2.2]
have a voice but also the confidence and resilience to speak up and participate at
WELL-BEING AND HEALTH FOR PEOPLE WITH DEMENTIA IN
whatever level is appropriate for them – in case reviews, in research, in training or at
CARE
HOMES: OVERVIEW OF LEARNING OVER 5 YEARS
conferences, for example. The session will be interactive, with plenty of opportunity to
This presentation outlines key findings from WHELD, a five year NIHR funded
ask questions and share practice examples.
programme which aims to provide an effective, simple and practical intervention which
improves the mental health and quality of life and reduces sedative drugs used for
Zoe Elkins and Rachel Wort, The Good Care Group [4.1]
people with dementia living in care homes. Some of the findings will be shared in this
USING LIFE HISTORY AS PART OF A HOLISTIC TOOLKIT TO
presentation. These have implications for the experience of people living in care homes
because they will influence future national guidance on prescribing, and recommendaINFORM CARE PLANNING AND IMPROVE OUTCOMES FOR
tions for training and support given to care home staff.
PEOPLE WITH DEMENTIA
Our aim was to use life history work in a one-to-one 24/7 home care setting to improve
well-being and reduce incidence of behavioural challenges, building upon the existing
evidence base for life-history work and using this technique in a focussed, purposeful
way to improve long-term outcomes for people with dementia through person centred
care-planning and delivery. We hypothesise that life-history work can be most effective
when used as part of an integrated and holistic model of care which is tailored
completely to the needs and wishes of the individual and simplified over time to keep
pace with cognitive decline. Homecare managers were trained in the understanding of
the subjective experience of dementia based on The SPECAL Photograph Album
explanation (Garner, 2008). The managers were taught to use specific techniques
including SPECAL Observational Tracking (SPOT) - a simple way of discovering what is
acceptable to the person living with dementia and taking into account their idiosyncratic speech, gesture and body language. The combination of life-history work and
data gathering using SPOT revealed how people with dementia draw on intact factual
information from the past to assist their understanding of the present. Our staff were
able to find synchronicity with a shared interpretation of reality, avoiding contradiction
and unnecessary confusion. Each manager was asked to develop and promote personcentred, individualised strategies for a selected person living with dementia. Our case
study evidence demonstrates that when life-history work is used as part of a holistic
model of individualised care and is underpinned by a working knowledge of how people
with dementia experience the world, it becomes possible to sustain well-being for
them, keeping pace with cognitive decline. The SPECAL approach and its associated
method give care professionals an integrated toolkit and a blueprint for using complementary techniques to improve outcomes for people living with dementia.
Nina Evans and Emma Beadle, Designability [5.5]
SOMETHING SENSORY INSPIRED BY PEOPLE LIVING WITH
DEMENTIA
Sensory products can encourage relaxation and diversion. This need is often identified
by repetitive and restless behaviours. By matching an object with an individual’s
sensory profile, stimulation can be enjoyable and effective. The charity Designability
set out to design a multisensorial, exploratory product for comfort and physical
occupation inspired by observations and interactions of people living with dementia,
and the insights of carers. Central to the project was delivering “desirability” and a
product with universal appeal.
Veronica Franklin Gould, Arts 4 Dementia [EB 1.4]
MUSIC REAWAKENING: MUSICIANSHIP AND ACCESS FOR
FAMILIES WITH EARLY-STAGE DEMENTIA
The power of music can bypass symptoms of dementia, reaching deep emotions to
stimulate thought processes and enable speech. Playing an instrument, singing opera
choruses, learning to play or sing, conducting members of a national orchestra, collaborating to create a song cycle can rehabilitate families affected by dementia. Arts 4
Dementia (A4D) believes that when diagnosed with dementia, they should be advised
that musical exercise can preserve cognitive function and directed to appropriate
musical interventions as cognitive rehabilitation. A4D, the charity developing
programmes at arts venues for people with early stage dementia and carers, focussed
on music this year, initially because A4D music projects kept participants symptom
free for days afterwards, then by videos of a violinist with dementia playing fluently
with the Philharmonia Orchestra and evidence of participants with dementia learning
to play instruments with the BUDI Orchestra and in Germany Music Reawakening, the
outcome of the A4D Best Practice Symposium 2015 at Wigmore Hall, presents
programmes developed by leading opera companies, orchestras and choirs, workshop
guidance, and neurological evidence that music can increase and maintain cognitive
ability and improve wellbeing. These include Scottish Opera, Glyndebourne, English
Touring Opera, the Philharmonia Orchestra, the A4D collaboration with English
Chamber Orchestra and London College of Music, Forget-me-Not Chorus and choirs for
young onset dementia. Participants report rediscovering lost skills and value working
with professionals in creating new music, opera, their own ideas integral to each
project and final performance. Informed by training and mentoring, the programmes
celebrate participants’ abilities and musicianship, rather than losses. A4D’s ECO
programme, exploring ways to enable musicians with dementia to address technical
difficulties so as to enjoy playing in an ensemble without worry, proved especially
rewarding for musicians with young onset dementia and culminated in a performance
of the participants’ composition on stage at Wigmore Hall.
Lucy Frost, Brighton & Sussex University Hospitals NHS Trust and Sarah West, West
Creative [5.7]
THE ALIVE INSIDE EDUCATION PROJECT – BRINGING A
HOSPITAL AND COMMUNITY TOGETHER
The Alive Inside Project was an initiative aimed at educating NHS staff about living with
dementia in the context of the power of music. The film was produced in America,
charting the efforts of a social worker who attempts to help people living in nursing
AN EXAMPLE OF LEADERSHIP AND COLLABORATIVE
homes access music of their own taste and choosing, to invoke memories, emotions
WORKING
The Prime Minister Challenge for Dementia 2020 outlines the next steps for diagnosing and simply the powerful human response music brings about. As Dementia Lead Nurse
for Brighton and Sussex University Hospitals NHS Trust, Lucy Frost led a group
those with a cognitive impairment and where GP responsibilities now lie. Sharing
including Brighton based social enterprise Engage and Create and local film maker
knowledge and information can support personal choice and control over decisions.
Sarah West to bring the film to Brighton. The project ran alongside a one day education
The Care Act calls for support and planning and a legal entitlement to a personal
budget. Working collaboratively care providers and solicitors can support GPs, people programme to help hospital staff better understand how to support a person with
living with dementia and their families to make choices and decisions. Our aim was to dementia. To widen its reach, the film screenings were held in public, and were
attended by NHS staff from across many different sectors and settings. A guest
provide collaborative, community seminars to people with dementia and their family
members. The seminars were designed to give concise current advice and information speaker was invited to each screening, to discuss current issues around dementia care,
giving participants a sense of the current sphere of dementia care and support, in
about legal decisions and actions to take when planning ahead with practical advice
relation to the positives and the challenges. The presentation will explore the impact
about how to broach difficult conversations and decisions. We hypothesised that by
of the education programme and the film on those who accessed it, and the pledges
providing both legal, practical information and knowledge about dementia we would
made by participants as a result of seeing this film. The presentation will explore the
help people feel comfortable to talk to legal and social care professionals about
forward planning without obligation. Following feedback from our audiences about lack impact of music for people living with dementia, in the context of the many challenges
for people living with dementia in care and nursing homes, in a less than perfect health
of availability of information; which was reaffirmed by a separate short survey
undertaken locally in this field, we went on to develop seminars for GP surgeries. The and social care system. The session will summarise the benefits brought to an NHS
Trust by stepping out of the hospital walls and into the community.
next phase will be open to GP surgeries and surgery teams. There are limitations on
everyone’s time so each seminar requires consideration of future customers and
Kathryn Gilfoy, Westminster Arts [4.4]
deliver of service to contributing services. We were fortunate with venues up to 35
people being available in local office space and given free. Seminar staff time was also ART AMONGST THE TEACUPS – CREATING A VOLUNTEER
given freely in evenings and lunch breaks. To be sustainable regular seminars would be ARTS BEFRIENDING SCHEME
hard to deliver solely on good will. It may be possible to consider joint partnerships
The Creative Befrienders project was born out of the belief that a dementia care
and agreements in the future to support the financial and time constraints.
package should contain non-medical elements to meet the needs of whole person. Also
Elaine Ferris, The Good Care Group [6.5]
that in any one catchment area there will be a range of people living with dementia
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with very differing needs which requires a bespoke response. The Dementia Advisor in
Westminster was finding that there was plenty on offer in the community for people
who could easily engage with community style events and were able to attend a
workshop, but not for people who were losing confidence or becoming more fearful of
going out, let alone were coping with physical age related difficulties. Starting as a
pilot, Creative Befrienders created pathways for people to remain linked to their
community, local arts and community whilst offering a low cost arts intervention to
decrease isolation, maintain old pastimes or create new ways of living well with
dementia. The presentation will look at how the project was developed, delivered and
assessed. We will examine lessons learned around recruitment, training and support of
artists, and how to develop a referrals system, and how we looked to partner with
other initiatives going on locally. We will cite examples of goal setting and show images
of artwork created, and how artists sought to bed the work within wider community
frameworks. The pilot confirmed the need for the project and funding is now secured to
also offer the project across Hammersmith & Fulham and Kensington & Chelsea. It is
clear that the volunteers, family carers and befriendees value the programme and the
sense of their own development and that the programme is playing a larger role in
engaging artists into this area of work.
Reinhard Guss, Kent & Medway NHS Partnership Trust, Keith Oliver and Lewis Slade
[1.2]
WORKSHIP TO DISCUSS THE INVOLVEMENT OF PEOPLE WITH
DEMENTIA AND CARERS IN PLANNING AND CO-CREATION OF
SERVICES, PROFESSIONAL EDUCATION AND RESEARCH
Service user involvement is widely accepted as essential for delivery of quality
services. An increasing amount of research has been published outlining potential
benefits, but without fully exploring the time for preparation, the support required and
the impact on the service user. We will examine these areas through scientific enquiry
and personal accounts of experience. As an introduction to the panel discussion, we
aim to present on the East Kent Forget Me Nots model of service user involvement,
which is facilitated by links with the psychology department of the local trust and
support from undergraduate psychology students on clinical placement. We will
consider how this model promotes collegiate relationships between people living with
dementia and professionals through person-centred support. The time and preparation
of the support required will be discussed. Positive impacts for those involved, as well
as challenges and negative experiences, will be considered. The importance of
meaningful service user involvement will be evidenced by discussing the far-reaching
impact of involvement in the care and support of people living with dementia.
Objective analysis of data as well as subjective personal experience will be used to
support arguments made, and limitations and learning points will be discussed. This
will be explored in the context of how things have improved (or not) for people living
with dementia over the last ten years. Dementia Service User Involvement has grown
exponentially, but needs significant levels of support in order to enable people with
dementia to fully participate. Working with volunteers or with unpaid interns or
students on placement is a model that is seen as cost effective to provide this support.
Philly Hare and Natalie Gordon, Joseph Rowntree Foundation [4.5]
DEMENTIA FRIENDLY COMMUNITIES: EVIDENCE AND
LEARNING FROM FOUR UK PROJECTS
Philly Hare, Natalie Gordon and Wendy Mitchell will all contribute to the Symposium on
Dementia friendly communities: evidence and learning from five UK projects. Although
Dementia Friendly Communities (DFCs) are growing in strength and number, the
evidence base is as yet underdeveloped. JRF has funded and evaluated demonstration
projects in York, Bradford, Londonderry and East Sutherland – as well as in our own
organisation. The symposium will draw on these reports, some of which will be
launched on the day at Congress. Our evidence shows that the active, meaningful
engagement of people with dementia and their families is fundamental. It must be
encouraged, resourced and nurtured. DFCs must seek to engage with, and achieve
equity for, all people with dementia, whatever their circumstances. Practical barriers
to inclusion must be addressed if normal lives are to be continued. The human rights of
people with dementia and of carers must be recognised and promoted if real inclusion
is to be achieved. DFCs must be underpinned by ongoing awareness raising, training
and positive media coverage. Connections and networks, within and beyond the
community, are at the heart of DFCs. Local grassroots community activity is the
bedrock of DFCs: it unearths innovation, untapped assets, unsuspected champions and
creative partnerships. This activity must be supported by strong strategic planning,
commissioning and leadership for DFCs to flourish and be sustainable. Both primary
and secondary health providers have a vital role to play in supporting social inclusion.
However, there is no template - each community must develop its own approach, based
on its unique cultural, geographical, spiritual and human assets. We will present the
results of our evaluations at this session, with some very short films. Philly will also be
in conversation with Wendy Mitchell, who has a diagnosis of dementia. They will discuss
how and why the involvement of people with dementia is so central in DFCs – and give
some very practical examples.
34
Michael Herz & Kate Read, University of Worcester [3.4]
PROMOTING CULTURAL COMPETENCY IN THE DOMICILIARY
CARE WORKFORCE SUPPORTING PEOPLE LIVING WITH
DEMENTIA – REPORT FROM A PILOT PROJECT
Research on dementia care in black, Asian and minority ethnic (BAME) communities in
the UK has reported that though there is in general a low service uptake, those that
have used services have frequently experienced cultural and language barriers. This is
a pilot project aimed to develop and promote a culturally competent workforce within a
home care agency that supports older people with dementia from diverse groups. The
action learning set had two overarching aims (1) increasing knowledge and understanding of dementia within key senior staff, including exploration of how to meet the needs
of people with dementia who are from culturally diverse backgrounds and (2)
empowering staff to work with colleagues and carers to disseminate and sustain good
practice to provide leadership and strategic focus around the challenges and opportunities for providing excellence in person centred domiciliary based dementia care. ADS
designed, developed and delivered two action learning sets across 5 days face to face
teaching. These were split into 3 days and 2 days respectively over a 2 month period.
This is an opportunity to develop a revised action learning set and an associated
manual for trainers to use within domiciliary care settings. In order to achieve this, an
evaluation has been conducted. In order to respond effectively to the growing numbers
of older adults at risk of developing dementia from BAME communities it is essential
that bespoke, dementia education specifically designed for domiciliary care agencies
is developed.
Debbie Hicks, The Reading Agency, Nada Savitch, Innovations in Dementia, and
Janet Baylis, Alzheimer’s Society [2.3]
DEVELOPING A NATIONAL ‘READING WELL’ BOOKS ON
PRESCRIPTION SCHEME IN PUBLIC LIBRARIES FOR PEOPLE
WITH DEMENTIA AND THEIR CARERS
There is an enormous need for high-quality information and advice about dementia,
and libraries, as non-stigmatised, familiar and welcoming public spaces, are ideally
positioned to offer these, as well as signpost to other available services. The
development of a new Reading Well Books on Prescription for dementia scheme builds
on the success of the first scheme for common mental health conditions that was
launched in all English public libraries in June 2013; in its first year it reached 275,000
people. The aim of the project was to create a dementia offer in libraries focused on a
book list of high-quality titles to support people with dementia and their carers,
following clinical guidance for dementia care. The books would be made available in
public libraries, so that people could select titles themselves and they could be
recommended by health professionals to patients. A review of the policy framework,
clinical guidelines and evidence base that would underpin a Books on Prescription
scheme for people with dementia and their carers was conducted. We then consulted
with a wide range of dementia, carer and health organisations on these areas, and to
gain recommendations of book titles. A steering group was established and several
meetings were held to review a shortlist. Consultation with people with dementia and
carer groups about individual titles, appropriate formats and genres, through the DEEP
network, was a crucial part of the selection of titles. A list of 25 titles was selected by
the group, providing information and advice, support for living well with dementia,
support for carers, and personal stories. Feedback from people with dementia and
their carers was central to the selection of titles and often challenged professional
assumptions and values. Since its launch in January 2015, the book list has been taken
up by almost all English public library authorities and book loans have been very
strong.
Matthew Hill and Tracy Whittle, National Council for Voluntary Organisations [6.4]
VOLUNTEERING IN CARE HOMES – WHAT IS THE EVIDENCE
OF IMPACT AND HOW CAN IT BE DEVELOPED?
There is growing evidence for the positive role volunteers can contribute to supporting
dementia care in a number of settings. Yet there is a relative dearth of research
surrounding their role in care homes specifically (where approximately 80% of residents
are living with dementia). In particular, there is little impact evidence and insufficient
good practice guidance to inform development. In this context, the Department of Health
funded the Volunteering in Care Homes project to recruit volunteers to share their time
and skills with residents through befriending and activity-based roles.
This paper is based on the interim evaluation report 2014-15. The report draws on
detailed monitoring data; an online volunteer survey (42% response rate); telephone
interviews with care home and partner organisation staff and, most importantly, five
organisational case studies which included 36 in-depth interviews with residents,
relatives, volunteers and staff. Drawing on subjective measures, compelling evidence
of profound positive impacts on residents with dementia has been found – especially
around social and emotional wellbeing but with less evidence around physical and
mental health. The primary contribution of volunteers is the sheer time they offer but
there is also evidence of a distinctive contribution based on the equality, closeness and
altruistic dynamic that underpins their relationship with residents. There has been a
wide variety in the level of impact across different pilot areas, homes and roles with
one-to-one, regular, sustained befriender roles having the largest impact. The
evaluation identified a number of elements of volunteer management that could
increase impact including enhanced selection, improved training (especially around
more severe dementia) and developing volunteers within their role. This form of
community engagement has huge potential within the specialist care home setting.
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Alan Howarth and Debbie Sells, Northumberland Tyne & Wear NHS Foundation Trust
[4.1]
SUPPORTING FAMILY CAREGIVERS IN MEETING THE NEEDS
OF PEOPLE WITH DEMENTIA LIVING AT HOME PRESENTING
WITH BEHAVIOURS THAT CHALLENGE
The Northumberland Challenging Behaviour Service (NCBS) works predominantly with
care staff in care homes struggling to understand behaviour arising in the context of
dementia. Through the development of needs-led care plans we work with staff to help
STRIDING FORWARD: ‘I MIGHT BE LAUGHING NOW’
Family carers have a vital role to play alongside professionals in the care of a loved one them understand and meet the needs of their residents. Given that the majority of
people with dementia live at home supported by family caregivers and behaviours that
affected by dementia and yet can often get missed. The roles once existing as a wife,
challenge are often the reason for hospital admission or a move in to long-term care
husband, daughter, son, are often overtaken by the role of ‘carer’; leaving some
we carried out a service development initiative focusing on supporting family
individuals feeling a sense of loss and bereavement. The emotional impact of
caregivers to understand and manage behaviours that challenge. The initiative had
supporting a loved and the fear of sharing unwanted thoughts and feelings with
someone can leave people feeling lonely and isolated. The workshop will combine film two main phases. 1) We adapted the model that we use in care homes (i.e. the
and discussion to highlight the impact of living with dementia from the perspective of Newcastle model) to make it applicable to family caregivers and the difficulties they
experience. 2) We implemented the model with a small number of family caregivers
the family ‘carers’ of Striding Forward. I might be laughing now highlights the
and assessed the impact on the frequency of the behaviour, the distress of the
challenges and the highs and lows of supporting a loved one with the condition; from
the early signs of change, to finding help in what sometimes feels a postcode lottery, caregiver and their experience of caregiving. The outcomes to-date are positive. We
successfully developed a model that we feel helps explain the distress experienced by
and finally to finding a way for life to go on.
family caregivers when faced with behaviours that challenge. Our work with family
The film and subsequent discussions will encourage participants to consider the
following: What role for professionals to better support the emotional wellbeing of family caregivers, albeit a relatively small number, has been successful as the people with
‘carers’? How can professionals work in partnership with family ‘carers’ in continuing to dementia have presented with fewer behaviours, caregivers report feeling less
‘care’, within the context of health & social care? How do we acknowledge the emotional distressed and feel generally better about their caregiving role. Whilst it is important
to acknowledge that we have worked with a relatively small number of caregivers our
impact of dementia, whilst supporting family ‘carers’ to stay connected to their loved
approach has been successful. As a result, work with family caregivers has become a
one? Please be aware that the film I might be laughing now offers a lived experience of
core component of the service that we offer and has been rolled out across the Trust.
dementia from a carer perspective, which some people might find emotive.
All qualified nurses within older peoples’ services have received training on the
approach and we support them through supervision.
Simon Hooper, Health-Connected Ltd [5.5]
Diane Hinchliffe, Creative People Development [2.6]
RE-MINDME: BRINGING TECH TO DEMENTIA CARE
Having spent two years researching the tech needs of the formal care sector regarding
dementia care and one year building algorithms to define the Life History, preferences,
likes and dislikes of the person with dementia, RemindMeCare was launched earlier this
year to bring enhanced person centred care to the care process along the dementia
journey from diagnosis to hospital ward, thereby being a ‘portable care process’.
Through enabling remote family connectivity, bespoke reminiscence, data acquisition
and reporting. RemindMeCare brings cutting edge search, database and social media
tools to the front line of care and through enhancing person centred care delivery, is
able to bring a quantifiable return on investment to the use of tech in care. Assisting
also in client acquisition, family reassurance, cost effective bespoke entertainment
including music playlists and automated reporting, including CQC reporting on key
person centred care regulation 9 and 10, RemindMeCare addresses many key areas of
care needs and in an extremely cost effective manner.
Ursula Humphreys, Tameside Council [EB 1.4]
CHALLENGING CULTURE, PRACTICE AND INEQUALITY
IN TAMESIDE: CULTURAL ARTS ALTERNATIVES TO
ANTIPSYCHOTICS IN DEMENTIA
There is a clear evidence-base for the use of cultural arts interventions in managing
behaviours that challenge in dementia, although medicalised and task-oriented models of
care dominate health and social care practice. There is an acknowledged over-reliance on
pharmacological methods, which show only modest efficacy yet frequent serious side
effects. Long-term reliance on psychotropic medications is contrary to clinical guidance,
although its prevalence within dementia care is evident both locally and nationally. The
project aimed to test how cultural arts interventions could be delivered in a range of
clinical, social care and universal settings; determine whether or not cultural arts could
be embraced by care staff; understand what the barriers/enablers are to integrate
Agnes Houston, living with dementia and Donna Houston, Deal with Dementia [5.1] cultural arts into mainstream practice; provide a set of recommendations to inform
future commissioning decisions and dementia service redesign priorities; determine if
DEMENTIA IS MORE THAN MEMORY: ISSUES AROUND
cultural change within commissioning and service delivery practices could be influenced
and achieved. Music and performance-based sessions respectively were delivered in a
SENSORY CHALLENGES
number of different settings. Both approaches work to a participant-led model, providing
This project Dementia and Sensory Challenges was instigated by Agnes Houston a
opportunities for growth and expression, in the moment. This was distinct from reminisperson with dementia. To raise awareness and give hope to other people with
cence activity, which relies on memory and cognition.
dementia and their carers on how to live a positive life with dementia and sensory
Observations in relation to the project aims were made and recorded through
challenges. This resulted in a booklet inspired by and created with the words of people
journal logs by project co-ordination staff. The project was formally evaluated, using
with dementia to show a snapshot of our lived experiences. The booklet will give
focus groups and semi-structured interviews with care staff, the arts practitioners,
readers ideas on how to make the lives of people with dementia more pleasant,
project commissioners and strategic service leaders, against the key research. Initial
allowing them to be more socially included and no longer feeling alone.
findings indicate that cultural arts approaches to dementia care were embraced
differently in different settings and cultural change happened within acute and social
Mark Howard & Valerie Taylor, Orders of St John Care Trust [1.1]
care settings as a direct result of the project.
SUPPORT WORKER CARE WITHIN THE HOUSEHOLD MODEL
Professor Ian James, Roberta Caiazza and Karin Smith, Northumberland, Tyne and
Apple Trees was opened in March 2014 and is the first new build care home by the
Wear NHS Mental Health FT [5.2]
Orders Of St John Care Trust in Lincolnshire and replaced a 1960’s former local
authority care home. It is the first care home the organisation has built using the
household model providing dementia care. Along with the new building, a new person- THE NEWCASTLE MODEL
The Newcastle Model is a well respected formulation-led approach used in the
centred approach to care was introduced with traditional carers replaced by support
workers (companions). Over the first year the home has been open a group of residents treatment of behaviour that challenges. It is employed across the UK and has been
who moved from the previous home to Apple Trees were monitored with regular quality used in major clinical trials.
Since its introduction in 1997, there have been developments in the areas of
of life assessments using formal assessment tools. This presentation will give an
overview of Apple Trees and the people who live and work in the home. We will discuss dementia and behaviour that challenge. This workshop provides an overview of the
adaptations of the Newcastle model to accommodate both the developments occurring
the outcomes from the quality of life assessments; look at how the residents are
in the scientific literature and the use of the approach within different settings.
engaging with the new environment and their local community. The support worker
Method: The workshop will commence with a review of the use of the Newcastle model,
role will be explained with the successes and challenges discussed. Apple Trees has
including case study material. An overview of clinical tools and questionnaires used to
been a success and due to this the Trust has set out a commitment to use this model
support the approach will be described. A series of research projects and audits will be
for future new homes within its new dementia strategy.
presented to highlight aspects of the model requiring attention and alteration.
The second part of the workshop will describe the most recent development known as
'Communication and Interaction Training' (CAIT). This was initiated to ensure that care
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plans derived from the Newcastle model were carried out effectively. Those attending
the interactive workshop will be appraised of the up-to-date developments in an internationally respected treatment approach. Participants will be given the opportunity to
use clinical tools and discuss their use with highly experienced clinicians in dementia.
This will be the first presentation of this workshop. The Newcastle model is almost 20
years old. Recent developments have improved its use in various settings. This
workshop will allow audiences to examine the model more fully, through the use of an
interactive presentation. Participants will be able to trial some of the newer clinical
tools and will receive expert guidance on their use.
Tony Jameson-Allen and Chris Wilkins, Sporting Memories Network [3.2]
IMPROVING MENTAL AND PHYSICAL WELL-BEING THROUGH
SPORTING MEMORIES
Sporting Memories Network was awarded Best National Dementia Friendly Initiative,
listed as one of Britain's Top 50 Radicals by Nesta & The Observer and Best National
Football Community Scheme in 2014. Here we explore how working in partnership with
people living with dementia, an inclusive, community based, volunteer-led, collaborative partnership approach led to a flourishing model that supports carers, promotes
participation in sport and exercise and has received backing from public health, CCG's,
Health & Wellbeing Boards and councils across England & Scotland. We will explore the
use of social media and traditional media to engage generations and look at how
replacing the traditional media release led to extraordinary opportunities to speak
about dementia to global audiences in very non traditional circumstances. We will also
outline how and why national governing bodies of sport including England Rugby, the
Premier League and the MCC have backed the work and commissioned inter-generational projects to inspire future generations whilst supporting older generations. The
presentation will also include film and audio clips of group members speaking about
their experiences of living with dementia and of participating in sporting memories
activities. We will also explore, in our role as chair of the PM's task and finish group on
the role of sport & leisure in dementia friendly communities, our initial findings of
positive practice examples.
Rebecca Jarvis and Hugo de Waal, Health Innovation Network [2.3]
PUTTING PEOPLE WITH DEMENTIA IN CONTROL: COPRODUCTION OF AN ELECTRONIC CARE AND SUPPORT
PLANNING TOOL
This project aimed to develop, in partnership with people with dementia, an online self
management platform which puts people in control of the care and support they
receive. In the first six months, the aims were to co-produce a prototype electronic
care and support planning tool, seek feedback on the prototype tool from people with
dementia and their carers and identify how the use of the tool should be facilitated.
We formed a partnership with IXICO, a digital health company, and with SBRI funding
developed a prototype support planning tool. We worked with Innovations in Dementia,
a community interest company, to involve people with dementia and their families in
the design of the tool. We held a series of workshops with people with dementia and
family members to agree the main elements of a ‘support plan’, which components to
include in the first development phase, and the ‘look and feel’ of the product. We
worked with local voluntary sector organisations to identify people with dementia and
their carers to test the prototype which we called ‘MyBrainBook’.
19 people with dementia completed a MyBrainBook profile with their carer and a
facilitator. It initiated important conversations and people could see the benefits of
sharing their profile with health professionals. Most made suggestions for how the
functionality could be improved. Most people with dementia thought that they could
use MyBrainBook by themselves, but acknowledged this would depend on the stage of
dementia. The facilitators felt that they were able to help people to understand the
questions and explore them in more depth, support people to think about themselves
and their support needs and to balance the differing views of the person with dementia
and the carer. Co-Author: Dr Hugo de Waal, Health Innovation Network
David Jolley, University of Manchester [1.6]
ANTIPSYCHOTIC USE IN LONG-TERM INSTITUTIONAL CARE IN
EIGHT EUROPEAN COUNTRIES: RESULTS FROM THE RIGHTTIMEPLACECARE STUDY
This study uses data from the RightTimePlaceCare (RTPC) project which examined the
transition of people with dementia at the margins of care, from community living to
Long-term Care in Estonia, Finland, France, Germany, Netherlands, Spain, Sweden and
England 2010 - 2013. It focusses on prescriptions of antipsychotic medicines in care
home populations where there is international concern that these drugs are used to
excess. They can have adverse effects including increased death rates. The objectives
were to determine factors associated with the antipsychotic prescription for people
with dementia recently admitted to institutional long-term care facilities and to
ascertain differences in the use of this medication in eight European countries.
Discussion: Despite shared acknowledgement of the unwanted effects of antipsy-
36
chotics they are prescribed to a third of all new residents in care homes in these eight
counties. They are prescribed for individuals with more advanced dementia who are
physically less able and who are demonstrating neuropsychiatric and behavioral
symptoms which are seen to be helped by such medication. Differences between
counties may relate to fashion or reflect differences in the characteristics of people at
the time of admission. The issue for practice is that prescriptions should be reviewed
once people have settled in their new environment and alternative non-medicinal
therapies introduced, for there is good evidence that many people will remain well
when antipsychotics are discontinued. Co-authors : Adelaide de Mauleon, Sandrine
Sourdet, Anna Renom-Guiteras, Sophie Guyonnet, Helena Leino-Kilpi, Staffan Karlsson,
Michel Bleijlevens, Adela Zabategui, Kai Saks, Bruno Vellas, Maria Soto.
Julia Jones and Karen Lockley, Telford & Wrekin Memory Service [5.3]
DEVELOPMENT OF DEMENTIA HOME TREATMENT TEAM
(SHIELF) IN TELFORD
The dementia Home Treatment team in Telford started in January 2013, initially as a six
month pilot; this was in response to nationals concerns about the rising rates of
dementia in the UK. Following the success of the pilot, it became evident that there was
a need for Dementia Home Treatment, not just in Telford but across Shropshire. Initially
we and other teams within our trust had differing models of home treatment and these
were brought together under the shield project in January 2014. (The Support at Home Interventions to Enhance Life in Dementia http://www.ucl.ac.uk/shield/). The aims of the
shield project are to support people with dementia and their carers and enhance the
quality of life in the home environment. We try to prevent hospital, and care home
admission where possible. We also support care home staff in managing the behavioural
and psychological symptoms of dementia by observing, giving advice and role modelling.
We are available to support timely discharge from hospital in order to promote
continuity of care for the person with dementia. In Telford home treatment has meant
that we are able to support people though a crisis in their own home, provide support to
family and carers as well as the patient. We are able to support, and joint work with, a
number of other agencies including social services, health visitors, district nurses, care
providers, Alzheimer’s society and admiral nurses. We have been able to provide
treatment groups as well as individual support and take a positive approach to risk
management. The limitations are working with the financial and resource constraints of
publically funded services, and helping people with dementia access non-specific
dementia services within the community.
Lesley Jones, University of Manchester [2.2]
EXPLORING THE CONCEPT OF COMPLEXITY IN NHS
DEMENTIA INPATIENT WARDS
The field of NHS dementia inpatient mental health care has been overlooked in national
dementia policy guidance. This is despite the Royal College of Psychiatrists (2011)
stating that people with dementia in these environments are “the most vulnerable…
and have the greatest need and complexity” (p.6). This presentation will present the
initial findings from a PhD study which explores the concept of complexity in dementia
within dementia inpatient mental health wards. The study consists of three phases. In
Phase One an online survey of national opinion leaders’ perspectives regarding
complexity in dementia has been completed. Phases Two and Three have been
undertaken within one participating NHS mental health Trust. Phase two involved
individual interviews with clinical staff from inpatient areas and focus groups with
community mental health teams. Phase Three involves observation of people with
dementia and aspects of care within two NHS dementia inpatient mental health wards.
This presentation will present the analysis from Phases One and Two of the study. The
analysis indicates that the construction of complexity in dementia revolves around the
interaction between three domains. These domains are identified as firstly, the
presence of multiple factors/needs; secondly, the degree of intensity/severity of need
and thirdly, the presence of high levels of risk and/or severe distress. How these three
domains interact with each other and intersect with the presentation of the person’s
dementia provides an indication of the degree of complexity experienced. This study
has at its core the ‘hidden faces and environments of dementia care’. It brings
together two important aspects of dementia care; complexity and its meaning in
relation to people with dementia who are inpatients on NHS dementia wards. The
study findings will develop knowledge and practice by giving meaning to the term
complexity and by identifying components of assessment to be considered when
caring for people with dementia.
Tammy Jones & Natalie Portwine, Devon Partnership NHS Trust [1.5]
THE SOUTH DEVON LEARNING COMMUNITY
There is a need for a better trained and more respected workforce, where training and
practice development is key to improvements in the culture of care homes with
improved quality of life. Following the publication of the National Dementia Strategy
the Torbay Older Peoples Mental Health Local Implementation Group reviewed best
practice and evidence and developed an innovative solution to support the very large
number of local care homes in Torbay. The aim of this evaluation project is to
investigate the process and impact of the South Devon Dementia Learning Community
in residential care settings within the Torbay area. This research will determine the
feasibility and effectiveness of this model in care homes; it will also examine a range of
outcomes relevant to resident well-being, staff experience in working with persons
with dementia, and care practices. 23 care homes within the Torbay area volunteered
to be part of this project and were randomly allocated to either intervention or control.
The intervention homes received free in-house training delivered as follows - 4 hours
of Dementia Awareness Training: What is Dementia, Person Centred Care, Behaviour we
find challenging, Communication, End of Life, Environment, Mental Capacity Act and
DoLs and 3 hours Change Management Session titled Aspiring to Make a Difference
which is based on the strengths model Appreciative Inquiry this allows staff to develop
their own change projects which start off as small PDSA cycles; and the development
of the dementia champion role with peer support to keep the momentum going.
Results indicated improved quality of care in care homes, improved care home environments, change in attitude towards dementia and reduced staff sickness.
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family households where close relationships can flourish. This workshop will share the
‘Top 20’ ingredients of bringing ‘love’ to the heart of all we do. Workshop participants
are invited to think of reasons why such a simple obvious approach to dementia care
still seems so controversial. They will be asked to join the movement for ensuring that
loving care is not only ‘allowed’ but positively encouraged and nurtured in dementia
care workforces.
Jenny La Fontaine, Worcestershire Health and Care Trust and University of Bradford
[2.4]
FAMILY EXPERIENCES OF LIVING WITH BV FRONTOTEMPORAL
DEMENTIA: IMPLICATIONS OF A QUALITATIVE LONGITUDINAL
RESEARCH STUDY FOR PRACTICE
Evidence suggests that dementia presents challenges for whole families; requiring ongoing assimilation, adjustment and adaptation. Relationships provide important social
and emotional benefits; thus understanding the impact of dementia and the support
Carlvin Josephs, Dorset Healthcare University NHS Foundation Trust and Derek
needs of families is critical to facilitating opportunities to live well with dementia. It is
Dodd, Alzheimer’s Society [3.5]
widely recognised that behavioural-variant Frontotemporal Dementia (bvFTD) brings
PARTNERSHIP WORKING TO IMPROVE DEMENTIA DIAGNOSIS specific challenges for relationships, but little is understood about the nature of these
challenges and how families adapt and adjust to bvFTD over time. My research study
ACROSS DORSET
has sought to develop an in-depth and detailed understanding of the inter-generational
The improvement of services for people affected by dementia across Dorset to “Live
family experience of bvFTD over time. I interviewed people living with bvFTD and their
Well with Dementia” is a top health and social care priority. Dorset’s diagnosis rate was family members on 3 separate occasions over 2 years. Nineteen people were
the lowest in the country. A partnership approach has made huge improvements not
interviewed from 7 families. Analysis involved bringing the results together within and
only to diagnosis rates which are now at 60% across the entire Dorset area, but
across families to provide an in-depth understanding of the experience of family life
importantly to the care and support provided to people with dementia and their carers with bvFTD. The results illustrate the importance of the pre-existing relationship and
both pre and post diagnosis. The aims of creating a Memory Gateway Service were to
its influence on the experience of living with bvFTD. For these families, a significant
improve dementia diagnosis rates and to provide a holistic service offering both pre
and early change occurred in relationships between the person and their family,
and post diagnosis support for both people with memory impairments and their carers towards one in which loss of reciprocity and increased responsibility feature. This preswith single point of referral for professional but also other support agencies and self- entation focuses on the family experience of changes in empathy, and considers the
referrers . This has been achieved through a unique model of health and social care
implication of these changes for the work that may be required to support families,
support commissioned by health and social care and provided through a statutory NHS including the person with bvFTD.
provider and the voluntary sector. The Memory Gateway includes Memory Support and
Advisory Services provided through the Alzheimer s Society and Memory Assessment Becky Lambert and Danielle Wilde, Royal Free London NHS Foundation Trust [4.2]
Services through Dorset Healthcare NHS Foundation Trust. The services link in directly
A DEMENTIA SPECIFIC MODEL OF CARE FOR THE ACUTE
with Dementia Friendly Communities, Dementia Friends initiative, support groups
including Cognitive Stimulation, Memory Cafes and Singing for the Brain. The Memory
SETTING
Gateway is supported and already seen to be valued by the public and by GPs. Care and Carrying out pilot projects in the acute setting can be a challenge experience with the
support is provided in an on-going way. It is early days as the service is only 6 months ever changing healthcare environment. The complexity of dementia care can make this
old but it has had a significant impact on working relationships between Primary Care, even more difficult. This presentation is designed to provide advice from our learning
Secondary Care, Social Care and Third Sector services and service delivery. The entire around the challenges faced how to learn from and address them to ensure sustainable
model of the service meets a number of objectives set out in the Dementia Strategy.
and effective changes. It will address the importance of data collection and how to use
it to expand the project and introduce you to the CAPER model of care that was
Fiona Keogh, Genio [3.5]
produced as a result of the learning outcomes of our dementia specific project.
PROGRAMME: WORKING IN PARTNERSHIP TO TRANSFORM
DEMENTIA SERVICES
The Genio Dementia Programme, running since 2011, is jointly funded by Ireland’s
Health Service Executive and the Atlantic Philanthropies. The programme is designed
to address gaps in dementia services and to work at a systems level to: (i) develop new
service models of individually tailored, community-based supports so that people with
dementia (PWD) can remain at home living well; (ii) develop such supports for people
across the spectrum of dementia (iii) develop Integrated Care Pathways (ICPs) for PWD
to improve their experience in acute hospitals; and (iv) build leadership and capacity in
the field to support change. Because of the variety of actors involved in supporting
people with dementia, multi-stakeholder consortia were encouraged to come together
to apply for innovation funding. To support the concept of co-production, it was a
requirement that people with dementia and family carers were members of consortia.
Using a competitive process, innovation funding was awarded to consortia to develop
community supports or ICPs. A learning network was developed to share learning from
these sites and to build leadership, knowledge and skills. Evidence of impact is
established through a combination of regular on- site monitoring and data gathering
along with research and evaluation commissioned to external organisations to
establish outcomes and costs. This presentation will describe the programme and the
outcomes from twelve innovation grants to multi-stakeholder consortia to develop
community-based supports and Integrated Care Pathways. Early learning will be
presented and the possibilities presented by multi-stakeholder consortia to support
profound change in the development and delivery of dementia services will be
discussed.
Sally Knocker, Dementia Care Matters [5.7]
‘WHAT’S LOVE GOT TO DO WITH IT?’
When you visit a house with people living with a dementia, which looks, sounds and
feels good within minutes of arriving, it is generally because you immediately sense it
is ‘full of love.’ The Dementia Care Matters Butterfly Household model of care breaks
down the ‘us and them’ divisions of traditional institutions in order to create small
Reena Lasrado, University of Manchester [2.5]
FROM PAIN STORIES TO CLINICAL DECISION MAKING:
BRIDGING THE GAP IN ACUTE HOSPITAL DEMENTIA CARE
A number of studies have reported that pain is sub-optimally recognised and managed in
people with dementia and that this negatively impacts upon the person’s quality of
life.The experience of pain in dementia is often understood and perceived in terms of
changes in behaviour, mental status, body movements, facial expressions and vocalisation, e.g. crying, moaning and shouting. On admission to an acute hospital setting, these
diverse and individualistic response patterns to pain experiences make recognition,
assessment and management challenging for clinical staff. To help inform practice, this
session discusses acute care hospital patients’ pain experiences and expressions, and
the process of positioning their stories of pain to aid clinical decision-making. Between
2013-2015 a multi-site case study was conducted across four acute hospitals in England
and Scotland. Following ethical approval, 31 patients with dementia were observed at
the bedside across different hospital wards. Semi-structured interviews were carried
out with 4 carers and 52 health care professionals. Additionally, the context of care was
observed and medical notes were audited. Data were analysed inductively using a
thematic approach. This paper discusses the findings that focus only on the identified
and observed presence of pain in a sub-sample of 15 patients with dementia across the
hospital sites. This data highlights that patients used a combination of direct and
indirect verbal expressions, phrases and bodily gestures to communicate their pain
experience. Amongst the verbal expressions, the most prominent was the use of
metaphorical language to communicate pain, discomfort and distress, such as the
locutions ‘its murder’ and ‘volcano’. By combining various approaches to documenting
these embodied gestures, physical expressions and meaningful /biographical
metaphors, it was possible to start to piece together an overarching ‘pain story’ to act
as a conduit for clinical decision-making and practice. Further unpacking the meaning,
elements, application and evaluation of a pain story is necessary.
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Isabelle Latham, University of Worcester and Victoria Elliot, Orders of St John Care also asked for practical support to enable them to continue to access local community
Trust [3.6]
resources. The Welsh Government (National Dementia Vision 2011) provided some
initial funding which allowed the development of a full time dementia advisor post and
THE IMPACT OF THE ADMIRAL NURSE IN PROMOTING THE
one full time and one part-time home support worker. The decision to designate a
DIGNITY OF CARE HOME RESIDENTS
ward area within the Health Board for younger people with dementia facilitated the
OSJCT was only the second care home organisation to employ an in-house Admiral Nurse repatriation of a number of younger people who had previously been placed in out of
to provide dementia specialist consultancy, training, and advice. The role was created as area continuing healthcare placements due to behaviour that challenges. The repatriapart of OSJCT’s strategy to ensure excellence in care and nursing practice. It aimed to
tion of these people also made available funding to create a multidisciplinary
combine the expertise of dementia specialist Admiral Nursing with the best-practice
community team dedicated to working with younger people with dementia. The
evidence-base of My Home Life in improving the quality of life for those living, working community team is currently supporting 120 younger people with dementia and their
and dying in care homes. This year long evaluation, funded by the Burdett Trust for
families offering dedicated care co-ordination and 1:1 support. The new funding
Nursing and carried out by the Association for Dementia Studies, at the University of
released by the repatriation project has extended the community service to include
Worcester sought to add to sparse research concerning the Admiral Nurse role and its
multi- professional part-time team posts of all key health professions. The service is
implementation in care homes in particular. The evaluation explored: the impact of the able to offer post diagnostic support, ongoing family support and informal get
role on care homes, staff and the work they do; the impact on Dementia Café attendees; togethers in addition to all necessary therapeutic support. The in-patient service is
and the competencies and attributes of the role that contribute to its effectiveness. The currently supporting the continuing healthcare needs of 5 male and 5 female patients
evaluation provided evidence of positive impacts of the role on both the people with
with behaviour that challenges in a dedicated unit close to their family and friends. The
whom they work and the processes of the care home and organisation. It also
repatriation project also produced a significant saving for the Health Board in 2014-15.
highlighted that Admiral Nurse practitioners in care home organisations must bring not The presentation will reflect on the challenges and progress made to date and also
only their dementia expertise, but also experience and knowledge of how to support
consider remaining gaps in service provision and the priorities for future development.
practice and culture change within care home environments. This is something that
would not routinely be required of a ‘traditional’ Admiral Nurse. The presentation will
Sophie Mackrell, Alzheimer’s Society and Stephanie Daly, Brighton & Sussex
provide information on 1) the roles and responsibilities the role undertakes at a
Medical School [5.4]
strategic and practical level within a care home, 2) the benefits the role can bring to
TIME
FOR DEMENTIA PROGRAMME (TFD): EVALUATION OF A
residents, staff, families and the wider organisation and 3) the value an Admiral Nurse
can bring as opposed to a directly employed dementia nurse specialist.
NOVEL MULTI-PROFESSIONAL LONGITUDINAL CLERKSHIP IN
Joanne Laverty, David Moore & Gillian Allatt, Anchor, with Ann Wilson and Flo
Frances, Cranlea Care Home [1.7]
DEMENTIA
The programme uses a longitudinal clerkship model (LC) to enhance undergraduate
learning by providing a two year period on-going contact with a person with dementia
ANCHOR INSPIRES: INNOVATIVE MODEL OF DEMENTIA CARE and their family carers as an integral element of their degree. Aim: To recruit and
Anchor Inspires refers to inspiring dementia services and indicates four key elements. support people with a diagnosis of dementia and their carer to share their experiences
of living with dementia with medical students from Brighton and Sussex University and
The emphasis is on what is important to the customer and what we deliver to ensure
nursing, paramedic and mental health students at the University of Surrey. Two
the customer is re-assured, safe, engaged and, most importantly, happy. The aims of
the accreditation are to drive an improved standard for delivering excellent dementia outcomes (1) to evaluate the LC in terms of process and its impact on student
attitudes, understanding, knowledge and behaviours towards dementia. (2) to evaluate
services, ensure we meet customers’ expectations, removing the use of unnecessary
the satisfaction and views of patients and carers enrolled in the LC, and to assess its
use of anti-psychotic medication, ensure Anchor meets the new fundamental
impact on patient quality of life and carer burden. Method: Students paired with
regulatory standards, provide a platform for further improvements and improve on
Anchor’s care quality objectives. Anchor Inspires is a nomination process. Care home individuals with dementia and their family carers, who they will visit on a regular basis
as part of their undergraduate curriculum. Students and people with dementia and
locations must meet the criteria before embarking on this process: CQC compliant,
registered manager in post, Dementia and Dignity Champions in post. There also must family carers they visit will be assessed annually for a period of 2 years. Students will
be evidence of currently supporting people living with dementia. We recognised at the be assessed on their experiences of the clerkship as well as their knowledge and
start of the process that for any change/improvements to occur there needed to be a attitudes towards the condition. Individuals with dementia (and their carers) will be
firm commitment from key internal stakeholders who fully understand the benefits of assessed on their satisfaction of the LC and its impact on patient quality of life and
carer burden. Assessments will take the form of questionnaires, individual interviews
Anchor Inspires. The Dementia & Dignity Champions are also a crucial part of the
and focus group discussions. Recruitment is through Alzheimer’s Society services,
process. The Champions of change are nominated and identified as natural leaders
Memory Assessment Services, GP surgeries and research networks. Discussion: Time
who would champion the cause of best practice and were committed to long-term
for Dementia aims to develop, deliver and evaluate an innovative educational initiative
change. Key care quality benchmarks were established in order to measure improvements and a high percentage accreditation pass mark was also agreed of 80%. It was in dementia. Continuity of learning experience will be enabled by on-going longitudinal
contact. The programme fully respects and values the contribution and experience of
also agreed that the accreditation would be removed if standards fell.
people with dementia and their carers. We seek to help students to develop an understanding of the emerging challenges presented by the ageing population,
Danuta Lipinska, Trainer and Counsellor [EB 1.3]
multi-morbidity and long-term conditions using dementia as an exemplar condition.
LIVING WELL WITH DEMENTIA: SEX, INTIMACY AND WELL-
BEING. STRANGE BEDFELLOWS?
Sex is not easy to talk about, with strangers, our sexual partners, and especially not
with our adult children or parents. The most frequent discussions are those
concerning problems, difficulties, and safeguarding events when living with dementia.
Is the time is long overdue for an honest exploration of healthy sex and it's wholistic
benefits? This interactive session will review our knowledge, challenge our
stereotypes, and explore positive aspects of our sexuality, needs for intimacy and
sexual expression as part of our humanity and indeed, our human rights.
There will be a particular focus on how we are affected by cognitive change since the
brain is the biggest sex organ, and how we might find alternatives or ways of compensating for neurology, as lovers, relatives or professionals. We will explore the ways in
which we might develop a positive approach in sensitive, life giving ways whilst not
abandoning our responsibilities to its challenges.
All welcome. Bring an open mind and a sense of humour.
Neil Maiden & Alise Kirtley, City University, London, Chris Gage & Jude Sweeting,
Ladder to the Moon [3.3]
APPLYING CREATIVE THINKING AND INNOVATIVE
APPROACHES IN DEMENTIA CARE
Creativity is not a gift of a chosen few, but a skill that can be developed with the use of
evidence-based techniques. In dementia care, creative thinking plays a pivotal role in
being able to offer services of highest quality; from leadership and workforce
development through to person-centred practice and positive risk taking. In fact, the
Care Quality Commission states that creativity and innovation are key differentiators
between Good and Outstanding adult social care services.
In this workshop, Ladder to the Moon and City University London will explain and
contextualise creativity in care, in the light of CQC guidance. They will demonstrate
how creativity and innovation can be put into practice, with reference to their own
tools and the impact these have caused.
In small groups, participants will then use different creativity techniques to develop
Christina Maciejewski & Mark Jones, Cardiff and Vale University Local Health Board
new ideas for providing person-centred care. Groups will consider real-life scenarios
[2.4]
discuss case studies of creative and innovative practice, to fuel their own ideas
DEVELOPING A SERVICE FOR YOUNGER PEOPLE LIVING WITH and
and self-reflection. A short closing presentation will emphasise key factors in
DEMENTIA: INITIAL REFLECTIONS
successful use of creative and innovative approaches, as well as the challenges. ParticThis presentation describes the development of a service for younger people living
ipants will also be signposted to the resources that are available to support creative
with dementia and their families in the Cardiff and Vale area. Local research identified and innovative practice. This workshop will be of interest to care service owners, care
that younger people living with dementia reported a lack of appropriate services and
commissioners, care practitioners, carers and people living with dementia. Participants
38
will gain: Understanding of the role creativity and innovation in care, including how it
can look in practice, the outcomes it can deliver and how it corresponds to CQC
guidance; a number of creative approaches to care challenges, as explored by the
attendees together in the session, guided by an expert in creative thinking techniques;
information and guidance on how to use free digital resources to continue sharing
stories of good practice (carenshare.city.ac.uk) and applying creativity techniques
(becreativeincare.city.ac.uk).
Mary Marshall, University of Stirling [1.1]
CAN WE DESIGN TO REDUCE DISTRESSED BEHAVIOUR?
10
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Steve Milton, Innovations in Dementia and Neil Mapes, Dementia Adventure [5.7]
AGE UK – MAKING MAINSTREAM SERVICES ACCESSIBLE TO
PEOPLE WITH DEMENTIA
AGE UK has been a provider of services for people with dementia for many years.
However, earlier diagnosis and changing aspirations of people with a diagnosis meant
that people were increasingly turning to mainstream services for support. Steve and
Neil worked with more than 60 local Age UKs to help them open up their services to
people with dementia, and to make better use of outdoor space. By attending this
session people will gain greater insight into the role of mainstream services in
supporting people with dementia, gain greater insight into steps that can be taken to
improve the accessibility of mainstream services, gain greater insight into why opening
up mainstream services is the right thing to do and gain greater insight into the opportunities afforded by making better use of the great outdoors.
Dementia friendly design is crucial for dementia care. Poor design ought always to be
considered as a potential source of distress. This paper looks at some recent evidence
from mental health units and quotes some major research studies which support this
view. The aim is to convince the mental health service of the therapeutic importance of
dementia friendly design.
Gary Mitchell and Joanne Agnelli, Four Season Health Care [6.3]
Tim McLachlan & Karen McCrudden, Alzheimer’s Society [1.3]
THE BENEFITS OF A DEMENTIA HUB
DOLL THERAPY IN DEMENTIA CARE
In light of the increasing population experiencing dementia it is not surprising that
researchers and practitioners are increasingly interested in therapeutic ways to
improve the quality of lives of people with dementia. The therapeutic use of dolls for
people with dementia is one method that has been growing in recent years. Providing
a doll to someone with dementia has been associated with a number of benefits which
include: reduction in episodes of distress, increase in general well-being, improved
dietary intake and higher levels of engagement with others. Despite some positive
findings from empirical studies, there are some limitations to the practice of doll
therapy. The therapeutic use of dolls for people with dementia is a contentious issue.
It can be argued that it fulfils the concepts of beneficence (promotes well-being) and
respect for autonomy (as the person can freely decide to engage with dolls if they
wish). However it can also be argued that doll therapy is unethical when consideration
is given to dignity (in that people with dementia are encouraged to interact with dolls),
veracity (as the health professional is usually encouraged to treat the doll like a reallife baby) and non-maleficence (considering the potential distress this therapy could
cause for family members). There is evidence to suggest that doll therapy in dementia
care can be of benefit to some people with dementia. However in the absence of
rigorous empirical evidence or legislative guidelines, it is a therapy that must be
approached with a degree of caution.
The Hub model is often spoken about, but much less frequently commissioned.
Although we know that there are benefits to commissioning a wide range of holistic
services, they tend to grow piecemeal depending upon the success of each component.
This has led to service commissioned outcomes rather than outcome-based services.
We have identified that a holistic based approach to outcome based services offers real
value for money and flexible, responsive services. The aim of a hub model is to respond
quickly and collaboratively to the changing needs of people with dementia.
This approach requires input and good working relationships with or partners in health
and social care. A designated space is necessary to ensure everyone knows where to
refer to as does evidence relevant to service user need and the change in service user
need. The hub at Merton has been widely promoted and we have ensured that service
user involvement has directed and informed the provision of services and extended to
have an impact upon the environment. This is a pilot project, and although we have
increased he reach of the service from 10 per annum to over 560 per
Annum, the range and reach of the condition we support means we continually consult
and re-evaluate our services. Each person wishes to live well with dementia and the
trick is to ensure that everyone feels their view is valid and to offer a range of services
that both responds to, and is appropriate to, the needs of the person with dementia
despite their age, culture, gender etc. Commissioners should be confident in their
Caroline Mockford, University of Warwick [4.2]
commissioning of outcomes, rather than services, and willing to both educate and
SERVICES
AFTER HOSPITAL: ACTION TO DEVELOP
inform service providers to ensure residents obtain relevant and valuable services.
Service users and patients should feel they have been listened to and that services are RECOMMENDATIONS – THE SHARED STUDY
being developed to reflect their needs.
The aim of the NIHR funded SHARED study is to develop carer and patient-led recommendations for service provision up to 12 weeks after hospital discharge for people
Tim McLachlan and Alli Anthony, Alzheimer’s Society [5.4]
living with memory loss and their carers. Methods include having a large lay
HOW TO HEAR FROM THE LESS-OFTEN HEARD: ALZHEIMER’S involvement from development to dissemination. Lay co-researchers were involved in
interviewing 15 patients living with memory loss and their carers, where the patient
SOCIETY CONNECTING COMMUNITIES PROJECT WITH BAME had just left hospital. Patients were aged 65 and over and had been in hospital for at
least one week. Study participants were interviewed three times: soon after
GROUPS IN THE UK
There are 25,000 people with dementia from black, Asian and minority ethnic (BAME) discharge, and at 6 and 12 weeks post discharge. Staff interviews were also conducted.
A framework for analysis was developed in conjunction with the co-researchers.
groups in the UK and this number is set to double over the next decade. Despite this,
people from BAME backgrounds are underrepresented in dementia services, often only Findings revealed three key areas in which services could be improved: 1. The discharge
engaging with services once a crisis point is reached. There are many challenges that plan, which could be jointly agreed, a written copy shared, and regularly reviewed. 2.
prevent people with dementia from BAME backgrounds accessing appropriate services. The need for a single co-ordinator of services offering essential information, advice
and guidance on returning home after an extended time in hospital. 3. Daily care
The Connecting Communities Project is funded by the Department of Health with a
delivered by care agencies, where an overstretched care system led to visits to some
focus on celebrating volunteers and volunteering. This Alzheimer s Society pilot
patients with memory loss being rushed, delayed or omitted. The findings were
project aimed to test new ways to improve the accessibility and suitability of
information for people from BAME communities in eight London boroughs. It aimed to presented to a lay focus group. Draft recommendations were developed and
commented on by health and social care professionals and the focus group finalised
empower diverse communities to influence the development of services appropriate
the recommendations. Discussion: This study has been guided by lay involvement and
for their specific needs. The vision included recruiting Community Engagement
the experiences of people with memory loss and their carers. There have been some
Volunteers to raise awareness of dementia amongst BAME communities and link
communities and commissioners to ensure future services reflect their needs. One key positive reports of exceptional individual staff but it has also revealed gaps in the
health and social care system which hinder a smooth discharge process for this
achievement for Connecting Communities has been that we have reached over 5,000
new people in the target groups. There has been a real appetite for groups from BAME vulnerable group. Service-user led recommendations could help to address these gaps.
communities to build lasting relationships with Alzheimer s Society. Working with
diverse communities to raise awareness of dementia and empower people to seek a
diagnosis takes time, resources and the ability to maintain strong links with small
organisations working for the benefit of BAME groups. There is a need for true shared
dialogue on what can be achieved within limited resources, for compromise and
acknowledgement that there can never be a one size fits all approach. There is a
growing need for services for people from BAME backgrounds affected by dementia
and the planning for that needs to take place now.
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10
th
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Henry Mooney, Everton Football Club and Tommy Dunne [3.2]
CREATING ALLIANCES TO SUPPORT THE DEVELOPMENT OF
PEER SUPPORT
The presentation will describe how a non-traditional health provider can be successful
in promoting health and wellbeing to the local and regional communities in the country.
By using the power of football and the Everton Football Club badge, we have been able
to engage in the last three years over 200 people both diagnosed and caring for
people who are living with memory loss. In partnership with Mersey Care, the
Alzheimer's Society, Age Concern, the Dementia Action Alliance and Everton Football
Club we have been able to use the club as a tool to promote Dementia awareness. The
club has facilitated a number of conferences on Dementia, which have included young
people and students, provided Dementia Friends Training, and is currently working
towards becoming both a Dementia Friendly workplace and football club stadium. The
presentation will describe how the partnership of Mersey Care and Everton Football
Club came about and will include a participant's own experience with this nontraditional method.
Catherine Murray-Howard, Community Integrated Care & Dave Sweeney, Halton CCG
[1.5]
ACHIEVING THE CARE ACT: A NEW
COMMISSIONER/PROVIDER RELATIONSHIP
Community Integrated Care, Halton Borough Council and Halton CCG have come
together to achieve the ambitions of the Care Act by turning St Luke’s -a traditional
care home that was at risk of closure - into a genuine centre of excellence. This is a
stunning example of true integration, with CCG clinical specialists working closely with
the home’s colleagues to keep people healthier, happier and independent for longer. It
has reduced demand on local health services, saved taxpayer money and measurably
improved lives. As well as delivering an integrated approach to care and support, the
home has recently been transformed with a more dementia-friendly and stimulating
living environment, following a jointly funded £250,000 investment. As well as
enhancing residents’ rooms, the home now includes stunning spaces such as its own
pub, cinema, indoor gardens, and reminiscence areas – all inspired by dedicated lifestory work with residents. It has achieved significant outcomes – with St Luke’s now
supporting people with the most advanced needs in Halton, preventing hospital
Jo Moriarty, King’s College London [6.5]
admissions, and measurably improving wellbeing. This partnership proves that the
of the Care Act – integration; upfront investment to reduce long-term demand;
SOCIAL CARE RESPONSES TO CARING FOR SOMEONE WITH aims
preventing the escalation of needs; concentrating on the outcomes people want to
DEMENTIA
achieve – can be achieved to the benefit of the person supported, tax payer and wider
Two thirds of the cost of dementia is thought to be paid by people with dementia and
community. The leaders of this project, Cath Murray-Howard, Deputy CEO of the
their families, either in unpaid care or in paying for private social care. While The Care national social care charity Community Integrated Care, and Dave Sweeney, Director of
Act 2014 has given new rights to carers, it is not always clear how much social care
Transformation at Halton CCG and Borough Council, will describe how they achieved
expenditure on dementia beyond this is focused on supporting carers. This presenta- these results, in a creative and thought-provoking presentation. They will share real
tion uses data from a study of social care practice with carers to elicit some of the key life cases studies from St Luke's, showing the impact of this innovative approach and
issues faced by those caring for someone living with dementia. It questions the extent describing how a new provider / commissioner relationship is needed nationally.
to which social care support for carers is evidence based and highlights the need for
better long term and tailored support for carers and people with dementia.
Paul Myles, On Our Radar and Nada Savitch, Innovations in Dementia [5.1]
YOGA AND WELL-BEING
DEMENTIA DIARIES: HOW TECHNOLOGY IS BEING USED TO
AMPLIFY THE VOICES OF PEOPLE WITH DEMENTIA
This practical workshop will use yoga and mindfulness to raise our awareness of
sensations in the body and their relationship to our own construing and how this is
relevant to the well
being and care of people with dementia. The role of yoga with people with dementia is
still being
developed, with very encouraging outcomes to date. Research shows efficacy of yoga
in treating many common diseases and suffering that may coexist with a dementia
(Chronic Obstructive Pulmonary Disease and asthma, Cardiovascular Disease and heart
failure, depression and
schizophrenia, diabetes, chronic back pain and disordered sleep) as well as evidence
for an improvement in brain function. Engaging people with dementia in talking about
yoga is in
itself constructive, revealing much about an individual’s construing of their physical
limitations and what they believe about managing it. Is increasing immobility and pain
an inevitable consequence of age and dementia? An elderly person's belief that they
cannot possibly do yoga is frequently
invalidated, and the opportunity to attempt movements that are achievable is both
validating and motivating. Stretching muscles and mobilising joints, and employing an
understanding of the relationship between yoga postures and their specific effects on
the mind to guide intervention brings a sense of wellbeing to people assessed as
unsuitable for rehabilitation, commonplace for people with a diagnosis of dementia.
Working on this non verbal level brings the opportunity for therapeutic intervention at
all stages of the illness. Yoga is not merely an activity, nor entertainment.
Although it keeps people actively engaged and often entertains, it is much more. It is a
therapeutic intervention that, with modifications, is accessible for everyone. An
opportunity to bring about peace and well-being in the moment, with implications over
time, yoga can address even the most distressing symptoms.
OUR HOUSE: INVOLVING THE LOCAL COMMUNITY
Clare Morris, Yoga Teacher [EB 1.1]
Damian Murphy, Innovations in Dementia [6.5]
GETTING ALONG – FILLING THE PERI-DIAGNOSTIC GAP
The call for higher rates of diagnosis in dementia has not yet been matched by any
meaningful post or peri-diagnostic support. Having encountered many couples often
questioning the validity of decades of marriage, Getting Along seeks to fill that gap by
recognising and responding to the change in relationship dynamics that so frequently
beset couples and families. With the aims of equipping couples to live better with the
presence of dementia in their midst; and of enabling professionals to recognise and
response to both sides of the caregiving relationship, four couples were interviewed
over a period of 4-6 weeks using a semi structured approach. This presentation will
feature a short film of the Getting Along pilot featuring 3 of the couples involved;
present the key findings and give you the opportunity to reflect upon the extent to
which services can use this method to provide a meaningful, practical and cost
effective response to that all too frequent ‘peri-diagnostic’ gap in support.
40
As this was a new concept, groups were approached who had some experience of
supporting their members with dementia to use technology and/or tell their stories
and express their opinions in public arenas. DEEP members and their supporters were
invited to take part in a training session where the mobile phones were introduced and
the idea behind the project explained. After the training staff from Radar kept in touch
with participants to monitor how they were feeling about the project. In the second
phase we will be opening up the opportunity for training to more groups.
The training sessions have on the whole gone well, we have been learning as we go
along making adjustments and improvements. More than 450 audio diary entries have
been recorded by people living with dementia, and more than 100 have been published
on www.dementiadiaries.org.
On 26th February 2015 Comic Relief dedicated their Red Nose Day Twitter account to
four participants - Jo, Tommy, Anne and Phil - from the project, each living with
dementia, enabling them to share their diary entries and experiences in their own
words. More than 5000 people around the world join in, sharing their own experiences
of dementia, and the tweets were seen by more than 3 million people. Although the
technology and the concept are not suitable for everyone, the majority of people with
dementia who have been involved in the pilot project have seized the opportunity to
tell their stories. We hope to gain funding to train and support many more DEEP group
members to become community reporters. But with increased numbers we will need to
ensure that people are supported well and that their voices are heard. We are investigating ways in which we can respond to the needs of journalists and the media in terms
of collating and creating content on different themes and in response to news stories
or events.
Ruth O’Dea and Carol Wootton, The Orders of St John Care Trust [6.4]
Our presentation will be discussing the importance of working collaboratively with
residents, relatives and the local community. We will evidence how such working can
enable residents to feel involved in the local community and the wider community.
Such collaborative work utilising the employees can also be shown as assisting to
increase morale, ownership of job roles which has a direct impact of a more productive
and open work environment. Such an approach will also be shown could increase
reputation of care homes in a more positive light and can increase marketing of the
services we provide. We will be discussing two of our many projects, the first of which
is how improving communal and individual environments with collaborative working can
decrease perceived challenging behaviour and increase feelings of empowerment and
involvement. The second will be discussing how we have made efforts to involve a
much wider community.
We shall discuss how small changes can make big improvements as opposed to big
changes that make no improvement.
10
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DEM ENT I A
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Josie O’Sullivan, Scottish Dementia Working Group [5.1]
This project has highlighted the absolute value of having people with dementia and
carers at the heart of the innovation process. It has led to innovations which have real
fit with the expressed needs of people living with dementia and therefore makes more
The Scottish Dementia Working Group (SDWG) is a national campaigning group, run by
economical sense and avoids the traditional perspective of professionals and
people with dementia and is the independent voice of people with dementia within
Alzheimer Scotland. The Working Group campaigns to improve services for people with businesses assuming they know what people need without involving them in codementia and to improve attitudes towards people with dementia. The group identified creation from the outset and therefore missing the mark.
travel, particularly when using public transport, as an issue that people with dementia
Sarah Penney, Ulster University and Danuta Lipinska, City University [6.4]
can find challenging. They wanted to find safe ways to travel and be able to share
these with others across Scotland and to raise awareness of their issues amongst
LIGHT BULB MOMENTS FOR CARE HOMES
transport staff. This presentation describes the process of how the group members set The aim was to improve the quality of life in care homes by implementing an evidenceout to resolve these issues. In 2013, six members of the group came together to form a based programme of best practice and person-centred and relationship centred care.
“Transport Sub-group.” The group meets 6 times a year, and these meetings have been The Project Manager worked with the care home managers with the four sub groups
held at different venues and involved members trying out various modes of travel to
listed below to look at best practice, identify support needs and develop resources to
help fully understand the challenges faced.
improve quality of life in care homes. 1. Facilitating a positive transition for residents
They decided that the best way of tackling these issues was by producing a booklet and relatives: Supporting residents, relatives and staff to manage the loss and
entitled ‘Travelling with Dementia’. The group has worked with major transport
upheaval associated with moving into a care home and to view the move in a more
agencies and has provided training and advice for agency staff to raise awareness
positive light. 2. Maintaining dignity and identity: Using person-centred care to meet
about the issues surrounding travelling well with dementia. The ‘Travelling Well with
the needs of residents and relatives by respecting values, beliefs, preferences, rituals
Dementia’ (2014) publication includes useful hints and tips for travelling. It includes
and routines. 3. Sharing decision making: Involving residents, relatives and staff as
practical measures to make the journey safer and minimise stress, and sign-posts
partners in decision-making on all aspects of life in the care home and working in
readers to services and organisations that can provide further assistance and/or
partnership to improve communication and clarify roles.
resources. Providing support and advice for people with dementia, and increasing
4. Creating and maintaining community links: Optimising relationships between and
awareness within the transport sector, and within the general public, has empowered
across residents, relatives and staff and integrating the home within the local
many people with dementia to get out and about as independently as possible thus
community. Early results show managers have developed a relationship centred
increasing self-esteem and confidence and strengthening their own personal capacity approach within their care homes which has increased person centred care. Staff,
and resilience.
residents and relatives have reported improvements in communication and inclusivity
in various decision making activities within the care homes. Managers are reporting
Professor Jan Oyebode and Sahdia Parveen, University of Bradford, Gill Read and
reduced anxiety, increased quality in care standards and increased recognition in
Alice Clark, Alzheimer’s Society, Neena Bilku and Disho Sandhu, BME United and
quality report from regulators. This programme helped develop a more person centred
Professor Martin Prince, King’s College London.
approach.
Some Initiatives developed include; ‘This is me Now’ tool which improves communiWORKSHOP TO CONSIDER EFFECTIVE APPROACHES TO
cation with residents with limited communication; A new approach to admission
DEVELOPING SERVICES WHICH MEET THE NEEDS OF
assessment removing the clinical and sometime sterile approach to collecting essential
information.
DIVERSE ETHNIC POPULATIONS
A recent change of gear in relation to dementia awareness and diagnosis, resulting
Amy Pepper and Sandra Roche, London Borough of Sutton [6.5]
from initiatives such as Dementia Friendly Communities and the Prime Minister’s
Challenge, has led to better awareness and higher diagnosis rates. However, there is
DEVELOPING A SPECIALIST ADMIRAL NURSING SERVICE
still evidence that those from minority ethnic groups are less likely to approach
WITHIN
A LOCAL AUTHORITY SETTING
services at an early stage and are more likely to drop out of services, so may be
The
London
Borough of Sutton Admiral Nursing service was launched in January 2014 in
missing the benefits that can follow from receiving a diagnosis. This may be due to
response to a need locally for specialist clinical intervention for families living with
lack of awareness, stigma, lack of competence by providers, and inadequate service
dementia. It was unique in being the only current Admiral Nursing Service based within
provision. We therefore need to work with minority ethnic populations to understand
better how effective services can be provided. The aim of this interactive session will a Local Authority. This presentation will give an overview of the challenges in setting
up and running a specialist nursing service within a Local Authority setting, how these
be to provide a forum to consider effective approaches to developing services which
were overcome and the benefits to commissioning in this innovative way. Looking at
meet the needs of diverse ethnic populations. The catalyst for discussion will focus
figures from the first year’s evaluation as well as case studies it will demonstrate the
around our recent evaluation of the Alzheimer’s Society Information Programme for
positive impact the service has had for families living with dementia and other profesSouth Asian Families. This session will explore two themes: ways to reach those who
sionals. We will conclude by looking at opportunities for the service going into the
are not coming forward to use services, and how we can best adapt existing
future and how the service hopes to develop both its service delivery and also ongoing
approaches for different ethnic communities.
evaluation.
TRAVELLING WITH DEMENTIA
Jill Pendleton, Mersey Care NHS Trust and Gina Shaw/Tommy Dunne, Service User
Reference Forum Liverpool [5.5]
Lynne Phair, Independent Nurse Adviser & Hazel Health, Independent Nurse
Consultant [2.1]
MATCH.COM : PEOPLE LIVING WITH DEMENTIA LEADING
INNOVATION TO PRODUCE SOLUTIONS THAT FIT THE REAL
CHALLENGES THAT DEMENTIA BRINGS
CAPTURING CARE AND COMPASSION IN ALL SETTINGS
Sit&See is a simple observation tool which captures care and compassion. Developed
by Lynne Phair in partnership with Brighton and Sussex University Hospital Trust and
NHS England (Surrey and Sussex), the tool provides a simple system through which
staff interaction with patients, visitors and colleagues, can be recorded. Through
Innovate Dementia was a 3 year European funded project which placed people living
capturing the smallest things (such as a smile, a little conversation, a reassuring
with dementia at the heart of the innovation process, co-creating products, working
touch), and through a simple recording system identifying positive, passive or poor
with businesses and sharing their expertise of the challenges faced when living with
care, Sit&See enables staff to see through the eyes of the person receiving their
dementia to develop products that have much better fit with the real needs .This
service (patient, resident, carer, family member) which helps them to understand the
session will be co-facilitated by people living with dementia and will focus on sharing
difference that their interactions can really make to dignity, care and compassion.
learning about the benefits of user led innovation and co-creation from the perspecWorking with a range of services, the Sit&See tool has been developed for use in any
tives of all involved, aiming to: describe the innovation process developed by the
care setting by staff (of any discipline and in any role), service users, family members
project from the perspectives of people living with dementia ,health and social care,
businesses and academia; share the products/innovations which have been co created and others (such as volunteers or the clergy). To date, five versions of the tool have
by people living with dementia and carers; present the benefits people with dementia been developed for hospitals, community (including primary care), care homes, mental
have gained from being involved in the innovation process and some of the challenges. health and high secure services. This presentation will describe how the tool is being
used to capture and measure positive care and compassion in all care settings and will
The highlights have been the innovations produced resulting from the input of people
describe the findings of an evaluation into the benefits of the tool both for people with
with dementia and carers. The project has co-produced films, advice pages to sit on
dementia, care staff and leaders and managers.
Liverpool's directory of services. It has co-created apps – My House of Memories and
Remind Me, a memory enabling platform. The project also highlighted some challenges
included working with businesses and governance, people being approached to
collaborate outside the project and how to involve people as their abilities change. This
has proved invaluable learning and has led to the development of a best practice guide.
41
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DEM ENT I A
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Kerry Phelps & Joanne Lane, Alzheimer’s Society, Wales [1.3]
for both professionals and the public. The Dementia Roadmap platform (www.dementiaroadmap.info) was developed to address this issue. The concept behind the
Dementia Roadmap platform is not to duplicate existing information but to take
Try Something New is an innovative service which operates throughout North and
existing information and enable it to be accessed more efficiently and effectively. The
South West Wales. The project supports people living with dementia to live in a
supportive environment by delivering a programme of meaningful learning opportuni- first three Dementia Roadmaps were launched in May 2014; this was followed by a
ties. The project is funded by the Big Lottery for three years. The Society is working in publicity campaign and wider rollout in England. Currently we have fourteen “visible”
Dementia Roadmaps that represent eighteen Clinical Commissioning Groups (CCGs) and
Partnership with the Community Education Service and will establish three Dementia
six more in development that represent a further twelve CCGs. The key attributes of a
Supportive Communities. The service aims are for people affected by dementia to:
Dementia Roadmap – access to both national and local information, adaptability to
develop an interest and engage with an activity, strengthen psychological wellbeing,
provide respite and support to carers and normalise dementia. This service is being run tablets and handheld devices will be demonstrated. Behind each Dementia Roadmap
alongside the portfolio of Alzheimer’s Society services. Over 130 groups have run since usage is analysed using the Google analytics tool. Data will be presented given
March 2014 with 1718 beneficiaries to date; 1128 direct participants to groups and 235 examples from individual as well as collectively across all the visible Dementia
secondary beneficiaries. We have worked with over 35 different Adult and Community Roadmaps on: Number of sessions of use, which pages are viewed for how long, new
users, returning users, most popular pages and topics. Individual comments from
Education providers and created over 300 Dementia Friends since March 2014. The
health and social care professionals as well as people with dementia their family and
service was externally evaluated by Bangor University in March 2015. Some of the
carers will also be presented.
groups that have run have included iPad, Woodwork, Tea Dance, Walking, Bowls, Yoga,
Discussions are ongoing with a number of organisations about extending the availLocal History, Cookery, Gardening, Zumba, Cake Decorating, Photography, Personal
ability of the Dementia Roadmap concept more widely in England and in other areas of
History, Arts and Mosaics. Evaluation has evidenced that people living with dementia
reported increased confidence, reduced isolation and feel supported - they have made the UK; these will be outlined.
new friends and had lots of fun. This session will explore the value of supporting
Colin Richings and Sian Gardner, Monmouthshire County Council, Peter Priednieks
people living with dementia to live in a supportive environment by delivering a
and Gilly Brooks, Dementia Care Matters [4.1]
programme of meaningful learning opportunities; the value of involving people with
dementia in developing services and the impact of enabling people with dementia to be HOMECARE THAT GIVES YOU WINGS: THE JOURNEY FROM
introduced to a topic, develop an interest or learn new skills.
TASK & TIME TO TIME THAT MATTERS
TRY SOMETHING NEW
Following significant development with Monmouthshire Council - Dementia Care
Professor Martin Prince, King’s College London and Centre for Global Mental Health Matters is now able to share its new model of home care services - ' Mattering at Home
[PLEN 2]
' and the tools, skills and approaches developed. This is as ground-breaking work for
home care as Merevale House was for care homes 20 years ago. Responding to ' Close
FISCAL AND POLICY CHALLENGES FOR LONG-TERM CARE
to Home ' from the Equality and Human Rights Commission – Peter, Colin and the
FOR PEOPLE LIVING WITH DEMENTIA
In the 2015 World Alzheimer Report, Alzheimer’s Disease International (ADI) estimated Raglan team can demonstrate how dementia specific homecare services can be revoluthat the annual societal costs of dementia worldwide were over US$800 billion, or 1% tionised - sweeping away task and time based old culture homecare and providing,
within peoples own homes, daily person centred quality of life whilst still meeting
of the aggregated worldwide Gross Domestic Product (GDP). If dementia care were a
contractual and quality of service indicators. Colin will open this presentation outlining
country, it would be the world’s 18th largest economy. In all world regions the direct
cost of medical care is modest, reflecting limited help-seeking, delayed diagnosis, and the strategic shift which Monmouthshire has been working to achieve in transforming
Homecare Services from task-orientation to instead person-centred responses. Peter
the paucity of effective interventions to change the disease course. 80% of total
will outline the Dementia Care Matters philosophy, model and training approach to
worldwide costs are incurred in high income countries, reflecting the dominance of
informal care in less developed countries, and their much low average wages (used to enable leaders, trainers and homecare teams to achieve the skill-base and sustainability to provide real person-centred support in communities as the future of dementia
estimate informal care costs). Costs will increase at least in line with increases in
care for people living with a dementia wishing to remain at home with community and
numbers of people with dementia. It is likely that there will be a shift from informal
family support. Members of the Raglan team are truly inspiring in showing the visual
(family) care to formal (paid) care services, particularly in low and middle income
transformation of people 'coming alive' again in their own homes and Gilly who has
countries. This will have a fiscal impact, but little influence on the overall cost to
society. Demand for better quality, more comprehensive long-term care services may moved from leading on Mattering at Home in DCM to being a full-time carer at home
and experiencing the realities of this will show what the future of home support looks
drive-up unit costs. However, these factors are likely to have little impact on the
sounds and feels like.
projected increases in the costs of long-term care, which are driven mainly by
population ageing.
Since those who will be old in 2060 are already born, the impact of population
ageing on future long-term care needs and costs is predictable and inevitable.
Governments and societies have no excuse if they find themselves inadequately
prepared. The financial sustainability of the long-term care system in high income
countries has been called into question. Standard and Poor’s have advised sweeping
changes to age-related public spending on health and social care, and consider that,
despite the cushion of economic growth, the need to tackle demographically-driven
budgetary challenges is hardly less pressing in rapidly developing countries. The future
cost of long-term care will be affordable, but only if governments act now to
implement required policies and reforms to be discussed in this presentation
bolstering social protection for all older people in low and middle income countries
generating a ‘second demographic dividend’ pooling risk ensuring that long-term care
schemes are ‘fully-funded’ and do not rely on ‘pay as you go’ (PAYGO) financing
rationing (targeting) of public spending on care supporting and incentivising informal
care by family carers
These changes need to be considered as part of a wide-ranging national discussion on
current and future long-term care, led by government, involving all stakeholders, most
particularly an informed general public. Each country will have its own culturally
determined set of values and preferences, but the key questions are universal and
timeless. Who needs care? Whose needs should be prioritised? How should care should
be delivered, and by whom? What cost would be reasonable and affordable? How this
should be financed?
Dr Jill Rasmussen, SE Coast Clinical Network and Barbara Stephens, Dementia
Pathfinders [3.5]
DEMENTIA ROADMAP ONE YEAR ON
Although there is a wealth of information, guidance, tools and resources that can
optimise assessment treatment and care of people with dementia their family and
carers accessing such information efficiently is often problematic and time-consuming
42
Jan Robins, University of Bradford and Fiona Macmillan, Skills for Care [3.6]
EVALUATION OF A PERSON-CENTRED CASCADE TRAINING
PROJECT TO SUPPORT SMALL CARE HOMES IN THE EAST
RIDING
In the spring of 2014 the School of Dementia Studies (SDS) was commissioned by
Health Education Yorkshire and Humber to support six small care homes in the East
Riding to deliver person-centred care training. Through developing bespoke cascade
training materials grounded in adult learning theory we aimed to deliver a sustainable
and effective method of training, which would improve the quality of care offered to
residents in care homes in the East Riding. We will discuss the evaluation of the effectiveness of this approach using both qualitative and quantitative methods. Initial
results indicate an increase in the sense of competency of staff. Peer facilitators have
reported positive changes in both their own and staff practice following the training,
these include greater understanding of expressions of unmet need, increase in
activities offered in the home and closer relationships with families and friends.
Limitations of the evaluation will be discussed and the challenge of delivering a
consistent approach across different care providers. During the presentation participants will have the opportunity to engage with the training materials.
Sharon Robinson, Fisher Medical Centre [5.3]
CRAVEN CARE HOMES QUALITY IMPROVEMENT SUPPORT
PROJECT
This will allow delegates to further understand the background to the project and the
aims and objectives of the service. The Service ensures the provision of a quality
improvement support and liaison service which enhances skill development of the care
home teams and demonstrably improves quality of care. The overall aims of the project
are to ensure that care home residents receive care in the most appropriate location,
in line with comprehensive Advanced Care Plans which are developed with the resident,
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their families, carers and General Practitioner involvement.
The service commenced in September 2014, 16 Care Homes were approached and all
have engaged with the project .Individual Strategy and action plans were developed for
each care home. Training and education needs were identified and the specialist nurses
facilitated education sessions on person centred care.
drawing, improvising, singing, dance, handling objects and making art works and
memory boxes. Carers support their person with dementia by bringing items from
home and helping them to communicate with others, finding shared experience and
participating in arts activities aimed at increasing communication. Carers receive some
support and training separately and form small friendship groups on the course to
support one another. The project has been evaluated on several occasions and in
Barbara Schofield, Calderdale & Huddersfield NHS Foundation Trust [EB 1.5]
several countries with differing results, but mainly positive for carers and people with
STUDENT VOLUNTEERS MAKE A DIFFERENCE IN THE WELL- dementia alike. It has been found to be of value in supporting the central relationship
between carers and cared-for and in enabling family carers to learn new flexible
BEING OF PEOPLE WITH DEMENTIA IN HOSPITAL
approaches to supporting their relative at home. It has given apprentices from a wide
The Prevention of Delirium Project (POD) emerged following the Trust’s involvement in variety of backgrounds the confidence to lead new groups and share what they have
a research study to test the feasibility of a multi-component programme of delirium
learned during their training and apprenticeship period. The increasing number of
prevention. POD builds on best evidence and NICE Guidelines (CG 103), and was adapted artists recruited to the scheme is in line with the sharp increase of interest in the arts
from a successful intervention programme, the Hospital Elder Life Program (HELP)
in the field of dementia care. In this presentation, I wish to share the latest results of
which was developed in the United States.
this project, as gleaned at our recent international Symposium and now the subject of
POD comprises of clinical care delivered by staff, supported and enhanced through
a further application to the European Commission to extend and deepen the work.
the involvement of volunteers in a planned, co-ordinated way. The Trust delivers care
for people with dementia and delirium within the principles of the Butterfly Scheme.
Amy Semple, Health Innovation Network & Nada Savitch, Innovations in Dementia
The students follow the principles of the Scheme, engaging with carers to gather
[2.3]
essential information to support person centred care. Some students have supported
DEVELOPMENT
OF A DEMENTIA PEER SUPPORT RESOURCE
life story work which has helped staff to care for the patient in a dignified and
respectful manner. Engaging volunteers in interactions and intervention that staff do
PACK
not have time to carry out, such as social engagement, and assisting with fundamental Peer support is recommended in Government strategy and policy as an important part
care such as mobilising, nutrition and hydration, can have a significant impact on the
of post diagnostic support. Yet research shows variation in access to peer support and
well-being of patients, reduce staff work load and generate cost savings. The student difficulties in securing funding due to challenges in measuring the value groups offer.
volunteers bring companionship and normality into the lives of older people at a time Engagement with people with dementia showed that not all people want or need a
when they are frightened, isolated and anxious. They support people at mealtimes,
structured approach to peer support, with people still wanting to continue attending
encouraging patients to eat and drink. The students offer a breath of fresh air for
the social groups and activity clubs they did before diagnosis, or a less structured
patients and enable nursing staff to address immediate nursing priorities. The
support intervention such as dementia cafes. In response, we worked in partnership
placement also offers a unique experience for young people who are wishing to pursue with leading dementia and older people organisations and dementia groups in South
a career in health care. Many of the students are applying for competitive places on
London to encourage the development of a sustainable system of peer support for
medical or nursing courses and this placement provides excellent evidence of previous people with dementia. We co-designed and co-developed a practical resource bringing
insight into their chosen career and the dedication required for success. In the longer together evidence-based guidance, case studies, films and related policy research in
term this initiative should promote compassionate caring attitudes and behaviours.
one attractive and easy to use interactive PDF. It is aimed at the voluntary, community
and statutory sectors to help the set-up, running and evaluation of groups for, or that
Helen Sanderson, Helen Sanderson Associates & Ian McCreath, Alzheimer’s Society include people with dementia. Part of this work was a Social Return on Investment
[1.3]
(SROI) study to provide commissioners and funders with evidence as to the wider value
peer support for people with dementia. This session will introduce delegates to our
“KATHY’S STORY” MOVING FROM PERSONAL OUTCOMES TO of
concept of a ‘coherent and sustainable system of peer support' and find out how it was
ORGANISATIONAL SETTINGS
developed. Delegates will also have an opportunity to see the resource and find out
The Alzheimer’s Society have been developing an outcomes approach to establish what about how it can be used by different people in different sectors and to see how
people living with dementia want to change about their life, and how to measure
expertise from different organisations can be brought together and disseminated for
progress. Through the ‘I AM’ process, the person, with support reflects on their life
the benefit of people with dementia. To view the pack visit: www.hinacross a number of domains and identifies how they see their life now. From this,
southlondon.org/resources/peersupportpack
person-centred practice are used to understand what is working and not working in
that area of the person’s life and how they may want to move forward. This information Hannah Seymour and Dianne Smith, University Hospitals of Morecambe Bay FT [EB
can be anonymously aggregated to inform strategic planning. The I AM process
1.5]
therefore goes from assessment to individual outcomes, and this is shared through an
example - Kathy’s - to enable colleagues to understand the process and the potential. INPATIENT DEMENTIA FRIENDLY MENU LINKED WITH THE
The project built on the I AM process, to show how person-centred practices can enable BUTTERFLY SCHEME
colleagues to use the process effectively and create better supports for people living To develop a menu option for people with dementia or cognitive impairment who may
with dementia. To illustrate how the person-centred practices could be used, detailed have difficulty eating or who simply find it hard to fit into a changed eating routine.
examples of the relevant tools were created for Kathy across different stages in her
With the use of butterfly scheme identifying the appropriate people, the supplemenlife. From Kathy’s life and experience, the Alzheimer’s Society also demonstrated how tary menu provides: finger food options both hot and cold, is in a pictorial format and
Working Together for Change could be used to use information directly from individuals offers advice to family and carers to support the person in helping with the choice, and
nutritional support. It ensures there is an option for extra snacks to supplement
to contribute to strategic change at a local service, locality, regional and national
dietary intake enabling to eat little and often as needed. During May 2014, one of the
level. This is aggregated and analysed by a group of people, that can include people
living with dementia, carers, volunteers, staff and managers. Sometimes, when you are elderly medical wards trialled the use of the menus using two questionnaires to
accompany it. Patients and carers found the menus easy to understand and used them
doing this at a locality, you can involve other people committed to developing
to order both meals and snacks. They also liked the option of ordering extra snacks to
dementia friendly communities, for example, leisure centre managers, community
supplement the main menu as desired. These snacks were often eaten between meal
transport, head teachers, commissioners etc. Using this process you can see a direct
link from what people, like Kathy (aged 65 years), say is not working in their lives and times and patients enjoyed the options and the flexibility. Patients and carers
the outcomes and actions taken at a local, regional and national level – a golden thread commented on the choice and quality of foods, liking simple, plain options which are
familiar to the older person. Staff feedback showed an increase in the uptake of the
from the individual to national policy is possible.
butterfly scheme for patients, and increase in the offering of snacks. They liked the
way the menu promoted independence for patients, developing closer relationships
Pam Schweitzer, European Reminiscence Network [4.4]
relatives and carers for joint decision making and sharing of care delivery.
TRAINING FOR EXPRESSIVE AND VISUAL ARTISTS IN REMI- with
Ultimately the patients on the scheme were eating more and enjoying their food.
NISCENCE IN DEMENTIA CARE
Patients, relatives and carers were also very pleased with the efforts of the staff in
The aim of the project is to support families caring for a relative with dementia at
striving to meet the needs of our patients.
home by revisiting in reminiscence groups their joint and separate lives over a 4-6
month period, during which they attend weekly reminiscence group sessions with a
David Sheard, Dementia Care Matters [EB 1.1]
view to bolstering identity, confidence and competence and generating new friendships
BEING TOGETHER REALLY MATTERS
and support systems. The other aim is to train groups of apprentices in each country
who can take the work forwards in the future. Families attend a specially formed group Over the last 12 months a new 3 part TV series “Dementiaville” was commissioned by
Channel 4 and the Open University looking at DCMs work in care homes and in the
meeting weekly for 4-6 months, during which time they relate and share their life
community with families - this aired in June 2015. This workshop will examine the
stories together through a range of structured reminiscence arts activities, such as
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content of the second programme “Families” which powerfully demonstrated the
importance of bringing family relationships into the heart of dementia care. David will
outline the key concepts used in working with the families in the programme in
achieving a new way of ' Being Together ' and in helping families to 'cross the bridge
into peoples’ realities.' In particular David will explore what was billed as a controversial idea in helping families to also recreate peoples past memories bringing these into
the present as a way to reach people living with a dementia and as a way to restore
previous more positive family relationships. David will argue that those who saw this
as controversial are failing to grasp that the person is already living in these past
moments, is unable to engage as easily in present moments and therefore the
recreation of past memories together as a family is a powerfully positive route to
restore well-being together and prevent negative feelings increasing isolation within
family relationships. David will share his own feelings in generally working with
families on this TV series, the training materials designed for the series and ways in
which other facilitators could use these ideas in individual family support and support
group sessions.
Sarah Smith, University of Bradford [2.3]
EVALUATING THE IMPACT OF DEMENTIA SPECIFIC
EDUCATION ON THE KNOWLEDGE, SKILLS AND ATTITUDES
OF PRACTITIONERS IN PRIMARY CARE
In 2013 the school of dementia studies developed a Postgraduate Certificate aimed to
enhance the skills and knowledge of practitioners concerning the assessment,
diagnosis and post diagnostic support of people with dementia and their families. The
postgraduate certificate includes two modules: Assessment and diagnosis of dementia
and Post diagnostic support for people with dementia. We sought to evaluate the
impact of the programme on Practitioner knowledge, skills and confidence in
assessment and diagnosis of dementia, and principles of a person-centred approach.
Methods: We investigated the impact of the programme on practitioner knowledge,
skills and confidence by: practitioners’ self-rating of self-efficacy in assessment and
diagnosis AND post diagnostic support - this was related to the specific competencies
developed for this programme which broadly align to the competencies developed by
the Royal College of General Practitioners; interviews with practitioners who had
David Sheard, Dementia Care Matters [2.1]
undertaken the programme; interviews with patients and relatives. The findings
THE FEELING OF BEING: THE ‘S’ FACTOR IN DEMENTIA CARE suggest that the programme has some impact of the knowledge of the practitioners in
line with the competencies targeted. As part of the programme students have started
For 20 years DCM has developed its Feelings Matter Most philosophy, culture change
programme and practice development tools. In this keynote presentation David Sheard to develop dementia specific service level initiatives, such as staff training, in line with
develops this philosophy further in DCM’s 20th anniversary year. Drawing on work from the expectations of practitioners working with a special interest in dementia. The
findings suggest that structured education programmes can have a positive influence
a number of writers and philosophers including: Heidegger, Sartre and Wilber on ‘The
on practice of primary care practitioners, impacting on knowledge, attitudes and skills.
Feeling of Being’ - David will argue that this is the missing concept and elusive
Enabling practitioners to develop interests as a practitioner with a specialist interest
ingredient in 'being ' person centred. Identifying the ‘S' Special Factor in Dementia
Care is very clear when this is demonstrated by inspiring individuals and amazing care in dementia can encourage practitioners to become advocates for people with
dementia in their communities of practice.
services. Yet there seems a reluctance in the care sector to accept that all these
individuals and services have the same core ingredient of 'being' it. David will argue
that the future of quality dementia care will depend not on environments, new method- Maggie Stobbart-Rowlands and Barbara Walker, Gold Standards Framework Centre
ologies, audits or constantly grasping at approaches which focus care on doing things [3.6]
to people but will ultimately depend on our ability to “BE” this in ourselves and to
IMPROVING END OF LIFE CARE FOR PEOPLE WITH DEMENTIA
know how to identify, recruit, replicate and sustain the “S” Factor in special people.
End of life care for people with dementia is often suboptimal. Pain is poorly recognised
The presentation will focus on the belief that people who “get” what BEING person
& managed, inappropriate hospitalisation and aggressive, invasive treatments are more
centred IS may not be able to articulate or have cognitively processed it but they just likely. Professionals do not feel comfortable in addressing end of life discussions with
ARE and demonstrate this in line with philosophers thinking on “The Simple Feeling of people with dementia . Raising awareness of these inequities and improving end of life
Being” i.e. being able to join your identity with being authentic, being able to have the care is an important issue. The GSF Dementia at the End of Life Programme was
courage to be outwardly vulnerable, being able to project the essence of your spirit,
developed to help front line staff develop a greater awareness of these issues. The
being committed to the search for well-being in others and being oneself at peace with programme has been developed as an online distance learning programme in collaboratime. DCM will launch its new practice development tool to help care services focus
tion with experts in dementia and end of life care, people with dementia and their
more on achieving the 'S' Factor in Dementia Care.
carers. Evaluation is integral to the programme. The online sessions include teaching,
interviews with experts and best practice examples. The programme encourages
Lyn Sheldrake, Sunrise Senior Living [3.6]
learners to develop their skills, understanding and confidence. It is practical, action
based learning. This programme has enable significant culture change within organisaCHALLENGING THE TICK BOX CULTURE OF TRAINING:
tions, improving systems and communication
EVALUATING THE PERCEPTIONS OF CARE HOME STAFF ON
to ensure that the right care is provided for the right person, at the right time, every
time and involves everyone. Evaluation of the pilot programme of 60 candidates
THE BARRIERS AND FACILITATORS IN TRANSLATING
showed that they were able to evidence improvements in their knowledge and underDEMENTIA TRAINING INTO PRACTICE
standing of the person with dementia, and improved care at the end of life. Feedback
It is estimated about a third of people living with dementia are living in care homes.
received so far shows that learners have been enabled to develop new ideas and
Recent events have brought sharply into focus the quality of care and outcomes for
older people and the training and support given to individual groups who work in care gained confidence in their ability to provide a high standard of care to people with
homes. The development of the care certificate is a step forward but there is growing dementia at the end of their lives. This programme can help to enable people living
understanding that just delivering training is not the panacea to improving the practice with dementia to live well and die well in their usual place of residence, improving
knowledge and awareness of staff and thereby reducing crises and avoidable hospitaliof care staff. The project aimed to investigate care staff views of new dementia
sation.
training workshops in understanding and managing distressed behaviour. The
workshops introduced for the first time a competency based framework linked directly
to staff performance and follow up opportunities to discuss individual residents and
new approaches tried.
The training workshop was part of a wider programme in dementia training seeking
to broaden staff skill and confidence in care. Overall participants felt that their
knowledge across all competencies had increased. There was a positive response to
the course structure, the competencies and reported increase in confidence in trying
different approaches. Managers observed improvement in communication with
residents. The positive results were stronger immediately post course than at 3
months. Time for training and organisational cultures are often cited as factors in
translating training to practice but we have found that care staff themselves can
influence practice and can be resistant to new ways of working. The project presents a
small window into the issues with improving practice and the use of competency based
training. Ensuring that all care staff attend the training and follow up session is
essential. Further follow up at 12 months would add value in understanding the longer
term impact of the training.
44
Caroline Sutcliffe & David Jolley, University of Manchester [1.6]
BEST PRACTICE STRATEGIES FOR TRANSITION FROM HOME
CARE TO LONG-TERM RESIDENTIAL AND NURSING CARE
(RIGHTTIMEPLACECARE)
Findings are reported from the RightTimePlaceCare project which examined care of
people with dementia in eight European countries. This presentation will: explore
experiences of care providers, service users and carers; identify factors influencing
admission to long term care (LTC); assess the relative costs of home care (HC) versus
LTC; and examine how the mix of institutional and community services might be
modified for those at risk of care home entry. A mixed-methods approach using: focus
groups with service users, carers and care providers; and interviews with people with
dementia and informal/professional carers. One group received home care services
(HC) but was at risk of LTC admission; the other group had recently entered LTC. A
Balance of Care exercise allowed expert practitioners to consider typical RTPC case
studies and propose care packages for the most appropriate support- HC or LTC. Focus
groups highlighted the importance of: early diagnosis, better hospital and respite
care; dementia training, multidisciplinary care, single point of contact, and psychological therapies. The study found that admission to LTC was predicted by: living alone;
cognitive impairment; worse neuropsychiatric and depressive symptoms; and carer
burden which was the factor most associated with admission in all countries. Costs
were significantly higher for LTC than HC: informal caregiving was the biggest cost
element in HC. The Balance of Care exercise showed that 25% currently admitted to
LTC might be supported at home if community services were enhanced, though
achievable only in the short term for some. The project identified examples of parallels
and differences across the eight countries possibly attributable to differing cultures,
health and welfare systems and care provision. Care at home may be cheaper and
achievable for some people with dementia currently in LTC but has cost implications of
a different nature particularly in relation to informal caregiving.
Luke Tanner, Dementia Care Matters [EB 1.4]
PERSON-CENTRED APPROACHES IN
‘LATE STAGE’ DEMENTIA CARE
Putting a person centred philosophy into practise when caring for people experiencing
the late stages of a dementia can be challenging. How can we meet someone's need
for occupation, inclusion, attachment, identity and comfort? Do all of these emotional
needs still matter? This presentation focuses on these important questions. Drawing
upon contemporary attachment theory and the neuroscience of feelings, Luke outlines
what a specialist person centred approach to late stage dementia care looks, sounds
and feels like.
Nicky Taylor, West Yorkshire Playhouse [4.4]
A NEW STAGE: DEMENTIA-FRIENDLY PERFORMANCES AT
WEST YORKSHIRE PLAYHOUSE
Arts and cultural venues are at the heart of communities, finding meaningful and
creative ways to engage with people of all ages. There is an established model of
engagement in museums and galleries for people living with dementia, many inspired
by the Museum of Modern Art's 'Meet Me at MoMA' programme. Theatres are less well
represented in the field of dementia care, although the potential for creative
engagement is rich with possibility. West Yorkshire Playhouse has a 25 year history of
creative engagement with older people through its flagship Heydays programme, with
300 people attending each week. In response to the changing needs of some members
in recent years, additional creative programmes have been developed for people living
with dementia and their partners. In 2014, West Yorkshire Playhouse set out to imagine
what a dementia-friendly performance of a mainstream theatre show might look like,
and to design a suitable model, in consultation with people living with dementia and
their supporters. Which barriers were preventing people attending shows? Did people
who had previously enjoyed visiting the theatre feel less confident in doing so? Were
family/professional carers less likely to attempt a theatre trip due to potentially
stressful situations? Could West Yorkshire Playhouse find new ways to meet these
individual needs? How would staff respond to technical changes to the show, and front
of house adaptations? And how could this model enrich our organisation? Dementiafriendly performances are now part of West Yorkshire Playhouse's regular
programming and we are supporting other theatres who wish to test this model.
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Dr Amanda Thompsell, South London & Maudsley NHS Foundation Trust and Ruth
Evans, NHS England [3.5]
DEVELOPMENT OF TOOLS TO IMPROVE QUALITY OF
DEMENTIA CARE ACROSS ALL SETTINGS
This session will present the output from the London Dementia Strategic Clinical
Leadership Group’s work stream to improve the quality of care for people with
dementia and their carers.
The work stream is made up of clinicians and other professionals from many
disciplines. The group developed a set of guides for commissioners and providers which
can be applied across all health and social care settings including hospitals, care
homes and home care. The guides distil published evidence-based best practice into a
simple format and help to share tools that have already been developed. Each guide
was reviewed and revised based on feedback from key stakeholders. They were tested
and further revised following a multidisciplinary conference. Feedback was also
requested from people who used the guides to ensure that it was a benefit and that
any changes suggested as a result of using them could be implemented. The guide
specifically designed for people with dementia and their carers was revised and
redesigned following feedback and advice from service user groups. The guides
produced are: “Commissioners’ Checklist for Dementia”, Leaflet for people with
dementia and carers “What can I expect from good quality dementia services”,
“Guidance on the content of delirium policies”, “Managing pain in people with
dementia”, “Guidance on using a recognition scheme”, “Guide to dementia training for
health and social care staff in London” and “Immediate post diagnosis support guide”
(produced by the Living well work stream). This presentation will mainly cover the
content of the commissioning checklist and the guide on what carers and people with
dementia can expect from good quality dementia services highlighting some key areas
of interest. It will briefly mention the other guides and conclude by signposting where
you can get links to these and the other guides produced.
Edward Tolhurst, Staffordshire University [EB 1.3]
THE EXPERIENTIAL IMPACTS OF COGNITIVE FUNCTION
TESTS UPON MEN WITH DEMENTIA AND THEIR CARERS
A contributory resource available to the clinician when diagnosing and monitoring
dementia is the cognitive function test, using an instrument such as Mini-Mental State
Examination (MMSE), Addenbrooke’s Cognitive Examination (ACE III), or the Montreal
Cognitive Assessment (MOCA). This enables the assessment of factors such as shortterm and long-term memory, concentration, language and executive function. There
has been a strong biomedical focus on cognitive function tests in academic literature,
which is oriented to the efficacy and empirical utility of testing instruments. This focus
has been inadequately supplemented by research that considers the wider influences
of these assessments on their recipients’ well-being. The impacts of assessments upon
the experience of people with dementia and their carers therefore require closer
social scientific scrutiny. This presentation sets out to offer counterbalance to this
research shortfall. Primary data from a qualitative study, that included men with
dementia and their spousal carers, offer a framework under which the experiential
Gavin Terry, Alzheimer’s Society [4.2]
effects of cognitive function tests can be evaluated. When faced with a disruptive and
disorientating situation, a process which applies a discrete quantitative score to
PAVING THE WAY: REAL SOLUTIONS FOR IMPROVING
personal circumstances offers a certain clarity. This elevates the perceived signifiHOSPITAL CARE
cance of the assessment and, accordingly, has the potential to shape the experience of
Building on the reports from previous years, Dementia 2015 looks at how well people
people with dementia and their carers in a number of ways. These are organised for
with dementia are living. Getting care right for dementia is a key issue, not only for
discussion in this presentation under four themes: Perceptions of the validity of tests,
people with dementia, but for the system as a whole which faces unprecedented strain. Impacts upon self-worth, labelling the person with dementia and Tests representing an
Dementia 2015 will provide a snapshot of current experiences and attitudes towards
absence of more person-centred support. Exploration of these dimensions enables
dementia in England, including whether they are lonely and anxious, and whether they consideration of how any negative impacts of assessments upon people with dementia,
and their carers are getting enough support. It makes calls on the new government to and their carers, could be mitigated.
improve dementia care and research and to drive forward dementia friendly
communities. It also provides a detailed examination of hospital care for people with
David Truswell, Central and North West London NHS Foundation Trust [3.4]
dementia, particularly transitions into and out of hospital, and provides practical
THE
REMINISCENCE TEA HOUSE STORY – DEVELOPING
solutions for how this can be improved. The report also built on the findings of the
DEMENTIA PEER SUPPORT AND INFORMATION FOR THE UK
2014 CQC report Cracks in the Pathway , by conducting a round table of experts in
the field of dementia and hospital care specifically to examine solutions to some of the CHINESE COMMUNITY
difficulties identified by the CQC. Dementia 2015 also looks at data from the Health and From the 2011 census there are 124,250 Chinese people in London; 7,713 are over 65
Social Care information centre on the number of days spent in hospital by people with years old. The Chinese community in the UK is one of the most dispersed of the
dementia, and examined individual experiences in depth through telephone interviews. minority ethnic communities in the UK, with support networks strongly focused on
The report found that many people with dementia still report being depressed or
family ties. Apart from the obstacles created by language difficulties and cultural
anxious and many carers do not receive support. It found some had poor experiences differences, there is a lot stigma about dementia in the Chinese community. This
of hospital care. Solution focused, the report found many areas where government and stigma can be a barrier to people receiving diagnosis and treatment for dementia.
other agencies can take key actions to improve, for example by investing in public
The Chinese National Healthy Living Centre has secured three years funding to develop
health campaigns, supporting greater post diagnosis support, and creating a better
a Dementia and Alzheimer’s Awareness and Support Project for London Chinese
deal on social care funding.
communities. Over the three years of the project aims to improve the quality of life for
London Chinese living with dementia by: reducing the stigma attached to the illness in
London UK Chinese communities, making sure more London UK Chinese people benefit
from early diagnosis by enhancing awareness and understanding about dementia
within this group, providing structured peer support to family carers and involving
45
10
th
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DEM ENT I A
CONGRESS
carers in a learning network, promoting the use of a new Chinese translation of the
identified improvements in their view of friendships within the Homes. Interestingly
term dementia: ??? and networking with other organisations working on dementia some felt their memory had improved, and several did not feel they had any memory
in other minority groups in order to learn and share.
difficulties. The use of CST programmes in care homes can be beneficial to residents,
however matching cognitive abilities within groups is essential to achieving
Sarah Voss, University of the West of England [5.3]
therapeutic outcomes for participants. Reflective support provided opportunities to
explore facilitator’s expectations and learning from the programme. Maintenance CST
RECOGNISING AND RESPONDING TO DEMENTIA IN THE
will be used in Homes to continue to support the improvements identified from the qol
AMBULANCE SERVICE: TRAINING AND TRAINING NEEDS
assessments and other unexpected outcomes.
The aim of this project was to develop training for ambulance staff on a person-centred
approach to the recognition and management of PWD in order to improve emergency
Gemma Williams, HMP Norwich and Judith Farmer, Forget-me-Nots [5.7]
care and dementia diagnosis. Phase 1 – examine current evidence regarding training
OLD, GREY AND LOCKED AWAY – RUNNING A COGNITIVE
and interventions for patients with cognitive impairment accessing emergency
ambulance services; Phase 2 – modify the training package, previously applied in
STIMULATION THERAPY GROUP IN A PRISON ENVIRONMENT
primary care, for use within ambulance services; and Phase 3 – explore ethical issues, The number of older people in prison is rising fast. According to the Prison Reform
and the preferences of patients and carers, relating to pre-hospital identification of
Trust, in March 2014 there were 10,749 people over 50 in UK prisons. Older people in
cognitive impairment, transfer of information to primary and secondary care and a
prison suffer from high rates of mental health problems and the Mental Health
timely diagnosis of dementia. This was a qualitative, three phase study with members Foundation (2013) suggests that 5% of prisoners over 55 may have dementia. This
of staff, PWD and their carers. Phase 1 was a literature review of training for ambulance presentation discusses a weekly Cognitive Stimulation Therapy (CST) group for elderly
and emergency medical services staff, complemented by a national internet-based
life sentenced prisoners which has been running for over two years.
survey of ambulance services. Phase 2 used workshops and interviews with staff and This practice development initiative aims to bring the benefits of CST to a group of
carers of PWD to hold structured discussions and explore experiences that can be built highly socially excluded people. This is a hard to reach population who experience
into scenarios to use in the training package. Phase 3 was a co-design consultation
memory difficulty/dementia in the context of multiple mental and physical health
process with patient, carer and public partners. Findings indicated that there is a
challenges. In addition to this, elderly prisoners are isolated from the community and
marked absence of published research regarding training and interventions for
from the range of specialist treatments and services available to the general public.
ambulance staff on PWD accessing emergency ambulance services. Although the
The programme aims to provide evidence based intervention and support for people
priority for paramedics is the identification and treatment of urgent care needs, they with memory difficulties who would otherwise be unable to access these, and to
regularly find themselves assessing patients for dementia; often informally. The main demonstrate person centred practice and values in a context which is frequently invaliconcern of carers was that they needed to call an ambulance as a last resort in order
dating of personhood. The Cognitive Stimulation Therapy (CST) programme is delivered
to access health services, even when they felt that this was inappropriate, due to a
by the small Forget Me Nots charity in association with the prison library. The
lack of alternatives. Paramedics often convey a PWD to A&E due to a lack of more
programme has been running weekly for over two years on a wing for elderly life
appropriate options for care, rather than a lack of knowledge or training.
sentenced prisoners and supports 8 -10 older people experiencing memory loss. Over
the course of the programme, Dementia Care Mapping has revealed improvements in
Lucy Whitman, Writer [4.6]
mood, engagement and wellbeing for participants both within the individual group and
over the longer term. Prison staff have also noted an increase in socialising and selfWHAT CAN PROFESSIONALS LEARN
care, greater confidence and verbal ability and in one case a significant decrease in
FROM PEOPLE WITH DEMENTIA?
self harm and agitation. We believe that the success of this programme highlights the
In this symposium, people with dementia who have contributed to a new book, People often hidden level of need of older people with dementia/memory problems in prison,
with dementia speak out, will describe their experiences of symptoms, diagnosis and
and demonstrates a positive strategy to support this vulnerable population.
post-diagnostic support, and discuss with professionals how clinical and social support
for people with dementia can be improved. One of the key themes to emerge from the Toby Williamson, Mental Health Foundation [1.6]
book is the feeling that dementia practitioners need to listen more carefully to what
DEMENTIA FRIENDLY COMMUNITIES –
people with dementia have to say for themselves, and to involve them as partners in
their own care and treatment. People with dementia will take the lead in this
A EUROPEAN OVERVIEW
discussion, and practitioners will be invited to respond to the challenges they present. This session will report the findings of a mapping survey of dementia friendly
community activity across Europe. The Mental Health Foundation has been commisSara Wilcox, Pathways Through Dementia [EB 1.2]
sioned by the European Foundations’ Initiative on Dementia to do a literature review,
questionnaire and telephone interviews of activity across Europe. There were
USING THE MENTAL CAPACITY ACT (MCA) TO EMPOWER OUR online
194 respondents to the questionnaire from 19 different European countries. Overall, the
CLIENT GROUP
survey has identified important commonalities in the development of dementia friendly
A recent Lords Select Committee reporting on the Mental Capacity Act (MCA) found that communities but also differences in approaches and conceptualisations. This session
the legislation was being underutilised. This Act was hard fought for, by charities like the will present some of the key findings from the report, which will be available shortly.
Alzheimer’s Society, and is directly relevant to people with dementia – so how can we
best use it to support our client group? This breakfast seminar focuses on where the Act Toby Williamson, Mental Health Foundation [2.1]
came from, and where we can take it. Using examples from her 15 years of working with
this client group, Sara will highlight the most important parts of the Act and will suggest SOME TRUTH ABOUT TRUTH TELLING, ‘DELUSIONS’
ways in which the audience can make better use of the principles and guidance the MCA AND DIFFERENT REALITIES IN DEMENTIA
provides us with. The presentation will offer case studies and opportunity for questions. Over the last 18 months the Mental Health Foundation has been conducting a national
‘inquiry’ into issues associated with experiences people with usually more severe
dementia have, involving different realities or beliefs. These include experiences such
Angie Williams and Donna Hathaway, The Orders of St John Care Trust [6.3]
as believing a deceased parent is still alive, that the person is living in a different time
OUTCOMES OF COGNITIVE STIMULATION THERAPY
or place, or believing that a close family member is someone else. The inquiry has been
PROGRAMME IN CARE HOMES
asking the question about how meaningful these experiences are to the person, as well
In 2014 The Orders of St John Care Trust’s Oxfordshire based activity coordinators were as carers and practitioners, and how best to respond to them. Funded by the Joseph
trained to facilitate Cognitive Stimulation Therapy (CST) programmes in the Homes. Our Rowntree Foundation, the inquiry has involved people with dementia, carers, practiaim was to provide CST programmes for residents with dementia living in our care
tioners, researchers, even philosophers! The final report is still being completed but
homes and to measure changes in quality of life and cognition for residents engaged in the session will report on some of the key themes emerging about constructing
the programme. 14 sessions of themed activities were facilitated over a 7 week period. realities, well being, emotional meaning, coping strategies, and ‘going along’ with the
Sessions were facilitated by the activity coordinator and one other person. Groups of 8 person in ways that are still ethical. Members of the inquiry who live with dementia
residents who appeared to be at similar stages of dementia were selected and were
have also been invited to give a personal perspective at the session.
able to consent to participate in the sessions. Quality of life (qol) assessments were
carried out pre and post the programmes using the QOLAD assessment tool, cognitive Hilary Woodhead and Emma Hewat, Support in Dementia [4.2]
assessment were also carried out using the 6CIT assessment tool. Reflective meetings
FACILITATING CHANGE AND PRACTICE DEVELOPMENT IN
took place after the first and last sessions facilitated by the Admiral Nurse. The
“Making a difference” CST manual was used to structure and monitor the programme. ACUTE HOSPITAL DEMENTIA CARE
This presentation will report on outcomes achieved following a programme of dementia
Cognitive assessments proved to be a challenge as participants were more impaired
specific service development within an acute hospital. The presentation will include
than first thought; most were unable to complete the 6CIT assessment. Qol
the key elements of the programme: education and training delivery and service
assessments revealed significant improvements in most of the participants, most
46
evaluation. Particular emphasis will be given to the impact on patient experience
before and after the delivery of Tier 1 and 2 dementia training; as mandated by Health
Education England and the implementation of an identifier scheme, through the use of
dementia care mapping and environmental audit.
Rosemary Woolley, Bradford Institute for Health Research [EB 1.5]
THE IMPLEMENTATION OF THE PERSON, INTERACTIONS &
ENVIRONMENT (PIE) PROGRAMME TO IMPROVE PERSONCENTRED CARE FOR PEOPLE WITH DEMENTIA ADMITTED TO
ACUTE HOSPITAL WARDS.
Improving hospital care for people with dementia is a major policy priority in the UK. The
PIE programme provides a method for wards to develop person-centred practices. It
comprises a qualitative observational tool (looking at the ‘Person’, their ‘Interactions’
with staff, and the immediate ‘Environment’) and a linked process for making change on a
cyclical basis. Specifically, ward observations by 5-10 staff, feedback to the team, action
planning, action, and review cycles. A mixed-method case study of a diverse selection of
hospitals and ward type to evaluate the process of implementation and the effect on
patient experiences and outcomes in five NHS Trusts (10 wards) over 18 months.
Readiness and commitment to engage in the process of change being obtained from
managerial and clinical leads. Data collection includes observation of routine care, staff
interviews, patient case studies and aggregate ward/patient profile data at baseline, 9
and 18 months and continuous data gathering on implementation. There has been various
engagement with and uneven implementation of PIE. The four patterns comprise “nonimplementation”, “partial”, “unlikely” and “timely, complete” implementation”. A high
degree of structural uncertainty and instability has inhibited full uptake in all bar two
wards in one Trust. Contextual factors include ward closures/threats of closure, ward
reconfigurations, staffing pressures/workloads, low morale, change in practice
development support and lack of active support above ward level. Although the “timely,
complete implementer” has undergone organisational change, the confluence of active
Trust support for the PIE programme, seen as a vehicle for, and aligned with the trustwide dementia strategy; and the engagement of the ward team, has resulted in observed
improvements to care. Conclusion: Facilitating change in the current context of organisational turbulence, staffing crises and changes and multiple priorities in the NHS, has
proven difficult. Factors critical to successful implementation are being drawn out.
10
th
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DEM ENT I A
CONGRESS
Lucy Young and Dr Sabarigirivasan Muthukrishnan, REACT Cardiff & Vale UHB [5.3]
SETTING UP A CRISIS AND HOME TREATMENT SERVICE
(COMMUNITY RESPONSE ENHANCED ASSESSMENT CRISIS
AND TREATMENT SERVICE -REACT) FOR OLDER ADULTS
(DEMENTIA AND FUNCTIONAL) AND ECONOMIC EVALUATION.
ENRICHING DEMENTIA CARE - THE ROLE OF THE DEMENTIA
CARE ADVISOR
Setting up of the REACT service was done with patient and carers involvement through
needs assessments and focus groups. One year into starting of the service it was
evaluated quantitatively and qualitatively. The service was also evaluated economically
and showed that £1 invested in it saved £5.57. This work resulted in Consultant Psychiatrist for the service winning jointly the Best Consultant Service Development Award for
2014. Qualitative feedback about the service was obtained from patients and carers
from different questionnaires by a face to face interview with patient and carer. Likert
scale methodology was used in these questionnaires. Economic evaluation was done
with the help of Health Board’s accountant. Admission avoidance and discharge facilitation cost saving were studied. Length of stay reduction by immediate assessment by
Consultant and having a continuity of care was studied and studied economically
Quantitative Results summary: Admission Avoidance Referrals: 202 (40%), Admission
Avoided: 152 (75%), Discharge Facilitation Referrals: 117 (23%), Discharge Facilitation:
117 (100%), Length of stay (LOS): 22 days. Qualitative feedback Results summary: In
95 % of the feedback forms the service scored highly with positive feedback.
Economic Evaluation Summary: Admission Avoidance cost savings- £2,362,688,
Discharge Facilitation cost savings £178,398, Combined cost savings for the Admission
Avoidance and Discharge Facilitation work- £2,541,086. Every £1 invested in REACT
saves £5.57 for admission avoidance and discharge facilitation works alone.
Conclusions: REACT is the first crisis and home treatment service for older adults with
mental illnesses and still the only such service in Wales. The service has patients and
carers at the centre of what they do and have shown that they are a quality service
which is also cost effective. This service is unique in providing education and training
for carers and patients with dementia during crisis by the Welsh Government funded
Dementia Care Advisor (DCA). This presentation will also give further information on
the role of the DCA and the importance of enriching dementia care and support.
47

UKDEMENTIA - Careinfo.org

Transcription

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