post-diagnostic dementia support in city and hackney

POST-DIAGNOSTIC
DEMENTIA SUPPORT
IN
CITY AND HACKNEY
A bit about us?
•
Dr Nick Mooney
Clinical Psychologist
Diagnostic Memory Clinic
•
Richard Reynolds, RMN
Dementia Nurse Specialist.
Diagnostic Memory Clinic
•
Steven Reading
Dementia Support Manager.
Alzheimer’s Society
CITY AND HACKNEY
DIAGNOSTIC MEMORY CLINIC
DIAGNOSTIC MEMORY CLINIC:
• Approximately 500 referrals 2014-2015
• Primary source of referrals are GP’s however referrals from other health providers will
be accepted
• Approximately 15% of referrals for patients under 65 years. A predominant proportion of
these patients are of BME and non-English speakers. Rates of mental health difficulties
are also significantly higher in the under 65 years group
• All new referrals are offered a diagnostic interview, screening tool (e.g., ACE-III) within
28 days. Scans and further neuropsychological assessment are available if required.
• Patients are then offered a feedback session once all assessment procedures have been
completed
• Depending on the outcome of the assessment patients will either be discharged,
allocated to a follow-up clinic, or referred to the Dementia Care Team
• Currently we are unable to offer support for patients and carers diagnosed with MCI,
VCI, or other non-clinically significant cognitive impairment
CITY AND HACKNEY
DEMENTIA CARE TEAM
DEMENTIA CARE TEAM:
• Occupational Therapy
• Consultant Psychiatrist
• Individual Psychological Support for clients and carers
• Specialist Mental Health Nursing
• Social Care Packaging/Case Management (Integrated working with LBH)
• Support Workers – Social Inclusion, Reminiscence Therapy, Life Story Work
• Carers Drop In Support Group
• Cognitive Stimulation Therapy Group (CST) – 7 week programme
• Carer support and assessment
• Signposting and Education for carers and clients
• Dementia awareness and behaviour management consultation work with community
resources and care providers
• Client Centred Care Plan Approach (CPA) for clients with complex support needs
• Further therapeutic groups for patients with varying stages of dementia are currently in
development
CITY AND HACKNEY
DEMENTIA CARE TEAM
DEMENTIA CARE TEAM:
• Secondary Care service providing an integrated and multi-disciplinary team approach
(community psychiatric nurses, social workers, occupational therapists, psychiatrists,
support workers, and psychologists)
• Primary source of referrals are from Diagnostic Memory Clinic and the GP
• Referrals encouraged via GP to ensure physical health screens have been carried out and
to ensure GP coordination and transparency.
• The primary purpose of the DCT is to work with people who have a diagnosis of
dementia and their families within the context of complex presentations - e.g.,
behavioural and psychological symptoms of dementia (BPSD).
• The majority of people with a diagnosis of dementia likely to experience BPSD (at some
point during the illness). Behaviours include: hitting, spitting, screaming, swearing, acts
of self harm, verbal sexual advances, confusion, repetitive questioning,
misidentifications, and hiding items.
• 25% of people with dementia in the UK are prescribed anti-psychotics, mainly for
treatment of behavioural difficulties. Anti-psychotics are effective in 1 in 5 presentations
and can have significant side effects.
Understanding Distress:
Stepped Care Model
Step 4: Specialist Intervention (Individualised formulation-led interventions)
Specialist Practitioners/ Carers/Care Staff. Therapists will be required to work with carers and systems around the person so
specialist training in family therapy, group therapy, psychodynamic approaches, and cognitive behavioural therapy are required.
Implementation of interventions occur within a multidisciplinary setting. Assessing needs: biopsychosocial formulations, full
functional analysis. Interventions: psychological, social and occupational, medication, specialist reviews.
Step 3: High Intensity Interventions (Protocol-led interventions)
Experienced Practitioners/Carers/Care Staff. Structured protocols to assess needs and determine interventions: Dementia Care
Mapping (Bradford Dementia Group), TREA model (Cohen-Mansfield, 2000), ABC/Behaviour charts; Systemic review of
information from previous steps. Interventions: Cognitive Stimulation Therapy (CST), Reminiscence therapy, music, staff training,
psychomotor & exercises.
Step 2: Low Intensity Interventions (Management of contextual issues)
GP/ Carers/Care Staff. Context: behavioural records (what/when/where/with whom?); physical environment (under/overstimulated?);occupation (boredom/isolation?; self-worth); emotions (communication of concern, worry?)
Step 1: Recognition
GP/ Carers/Care Staff. Screen for treatable conditions that may be causing or contributing to distress and confusion (delirium,
vascular events, infection, pain, sensory loss), and for mental health problems (psychosis, anxiety, depression)
Bradford Dementia Group: https://www.youtube.com/watch?v=qaIKm9MR-kI
Cohen-Mansfield, J (2000). Nonpharmacological management of behavioural problems in persons with dementia: The TREA
model. Alzheimer's Care Quarterly 1, 22-34
Thinking about the future
Advance Care Planning
LPA.
Advance Decisions (Directives) &
Statements.
End of life care planning.
ACP – continuing to live well with dementia
Capacity to engage in ACP
Offer of discussion and information
Telephone contact
Face to face meeting
Examples of what an ACP discussion might include are:
understanding about their illness and prognosis, concerns and worries
about the future, important values or personal goals for quality of life and
care, current concerns about unmet need, who else should be involved.
Alzheimer’s Society – National Services
•
Information
•
Fundraising
•
Dementia Awareness
•
Dementia Friendly Communities /
Environments
•
Campaigning and Policy
•
Education
•
Research
•
Services inc. Helpline , Talking Point
•
Publications.
•
www.alzheimers.org.uk
Dementia Community Road Show
National Dementia Helpline
Aims
Confidential Information and advice regarding dementia care, health and social care and legal and welfare rights
Information on all forms of dementia care, health and social care and legal and welfare rights.
Phone support
Information (eg factsheets and other helpful information to service users.
Staff Trained in providing information on all aspects of dementia.
The National Dementia Helpline is for:
people with a diagnosis of dementia - or people worried about their memory
carers, relatives and others close to them
anyone concerned about dementia …including professionals working in the field of dementia care
Getting in touch - 0300 222 1122
Helpline is open 9am-8pm Monday to Wednesday, 9am-5pm Thursday and Friday and 10am-4pm Saturday and Sunday
Talking Point…
… is an online support and discussion forum
available 24 hours a day, every day of the year.
Volunteers greet new members, and provide guidance and support to all members, as appropriate.
The Talking Point forum is not manned by professional advisers, and cannot provide medical or
legal advice. Help is provided through shared experience and peer support.
We provide the Talking Point forum for:
• people with dementia
• their carers, families and friends
• anyone concerned about dementia (inc. researchers and professionals working in the field of
dementia care.
Anyone with a computer and internet access can browse the content of Talking Point, simply by
logging on to forum.alzheimers.org.uk/index.php
Alzheimer’s Society
City and Hackney Team
Managers
• Bill Gibbons - SM (C & H + TH offices)
Peer Support Groups Facilitator (pt)
• Amina Mohammed
• Steve Reading (DSM – C & H)
Dementia Advisers
•
•
•
•
•
Claire Wheeler
Carol Feldon
Mel Telford
Phil Cowley
Tamar Nissim
Administrator (pt)
• Rumena Rahman
Singing for the Brain Leader (sessional)
• Glenn Bassett
Carers Assessment Worker (pt)
• Keely Chalker
Dementia Adviser Volunteers
• Amelia and Yas’ina
Group volunteers
Alzheimer's Society
Dementia Advisers
An information, advice,
signposting, and support service
for people who have received a
diagnosis, … or are worried about
their memory and in the process
of receiving a diagnosis.
Dementia Advisers work
according to allocated GP
Clusters
The Dementia Advisers are also
available at the Dementia Adviser
Quarterly Drop In session at
Homerton Hospital.
1.
2.
3.
4.
5.
6.
South West Consortia
North West Consortia
North East Consortia
Well Consortia
Rainbow & Sunshine Consortia
KLEAR Consortia
Peer Support Groups
Hackney Coffee Club (Dementia café) (monthly)
St Josephs Hospice, Mare St, Hackney
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–
–
Social Activities
Reminiscence Activities
Entertainment
Singing for the Brain™ (weekly)
Sutton House Homerton High Street, Hackney
“Singing for the Brain is based around the principles of music
therapy and singing. The structured group sessions use music to
encourage communication and participation and include
opportunities to talk to other people. Each session includes a range
of activities including vocal warm-up and singing a variety of
familiar and new songs”.
Carer Support
1- Carers Assessment, Review and Support Service
• Assessments
• Reviews
• Support
2 - Carer Support Group
•
•
•
•
emotional support,
preventing isolation,
practical information about living with dementia
shared experiences and learning.
Third Wednesday of the month,
11.30pm-1.30pm (Outward Office)
3 - Carers Information and Support Programme (CrISP)
A series of workshops for people caring for a friend or family member with dementia.
• Topics include:
• What is dementia?
• How you can support and care for somebody with dementia
• The support services that are available
• Planning for the future
3 x a year – run by Alzheimer’s Society staff … for up to 12 people.
Service Evaluation 2014:
Qualitative / Quantative Examples
99% of people living with dementia felt that the
support from their Dementia Adviser had
increased their sense of wellbeing.
•
50
Service Evaluation (qualitative examples)
45
45
43
42
Positive comments which support this include:
40
39
38
•
•
“Cannot take away the awfulness of
dementia but made me realistic: a bit more
reconciled to the diagnosis and future.”
“I am now aware that all is not lost there is
lots of help and support available if needed.”
32
27
“Yes, her help and support has been
invaluable. She was my main support over
the past years. I could say things to her that I
couldn't share with my family even.”
City and Hackney Alzheimer’s Society
Dementia Adviser Service Evaluation 2014
32
31
30
30
Total
refer
27
rals
since
April
22 13
29
28
26 26
25
26
24
21
20
•
37
35
19
17
GP
Pract
ice
refer
rals
since
April
13
15
10
5
10
5
4
0
9
7
6
2
0
10
9
0
0
1
1
1
4
5
5
6
5
4
5
6
4
Any Questions
.
Dementia Awareness Week 2015
Alzheimer’s Society in City and Hackney
supports people living with all forms of
dementia and their carers.
We do everything we can to keep
people connected to their lives
and the people who matter most.
Because life doesn't end
when dementia begins.
If you are living with dementia, or are worried
about your memory, call us for help and
support.
We are only a phone call away:
020 8533 0091