DRAFT Dementia Newsletter - Issue 3 - Spring v4

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DRAFT Dementia Newsletter - Issue 3 - Spring v4
This newsleer is a product of the partnership
work in Doncaster represented by the
Doncaster Demena Strategic Partnership
Forget Me Not
Doncaster’s Demena Quarterly Newsleer
Issue 3
Spring 2015
Each quarter we will feature a different service in Doncaster that is working to become demena friendly
and improving the lives of those living with, or caring for someone, with demena. If you would like to
feature your service in a future issue of the Demena Newsleer, please let us know by emailing:
[email protected]
The Avalon Group: Carer’s Toolbox
Doncaster charity, The Avalon Group, is offering a unique Carer’s Toolbox to provide
assistance for unpaid carers in the community.
The service, which is offered to any family carers supporng a relave with a demena diagnosis in the
Doncaster Central area, aims to navigate and make beer use of resources available to carers.
This includes facilitang bespoke short breaks, exploring flexible opons which will ensure that the needs of
both the carers, and those they care for, are met in a personalised and safe way.
Avalon is also forging links with external organisaons to bring together a network of services that carers can
access. The aim will be to increase awareness and engagement in projects that can offer healthcare, leisure
acvies, employment opportunies and social events.
The other major part of the toolbox will be to provide carers with access to free social care training, and
offer links to further external training. It is so important that family carers, who are o-en thrown into a
support role with very lile care experience, can take advantage of further learning that is available.
Avalon will ensure anyone who contacts them are offered these great opportunies.
When it comes to family demena care, the most important thing is that all pares are able to connue to
live their lives to the fullest. With the Avalon Carer’s Toolbox, families will find the guidance, support and
respite they need to do just that.
For more informaon, or to talk about what is available to you, please contact
Avalon on:
01302 910191 or email [email protected]
For more informaon about the newsleer, please contact Heather Akroyd, Corporate Support Officer on
01302 566141 or at [email protected]
For more informaon about becoming a Demena Friend, or Demena Friends in general, please contact
Michele Clarke on 01302 566363 or at [email protected]
Tunstall Healthcare build on their demena
awareness
Tunstall Healthcare delivers pioneering technology enabled care services that transform the experience of individuals and professionals. Their innovaons adopt new models
of care to support older people and those with long-term needs which improve outcomes, support
prevenon and achieve beer use of resources.
Tunstall is raising awareness of demena amongst their staff, and as such, contacted DARTS (Doncaster
Community Arts), and arranged for the ‘Unlocking Demena’ performance to be delivered.
Trevor and Layne from DARTS visited Tunstall Headquarters
on 23 February to deliver the performance. Penny Ellis of
Tunstall said: “Here at Tunstall we pride ourselves in
delivering soluons to help carers and people with demena.
We are a strategic partner with the Alzheimer’s Society and
we help in raising awareness of the condion. We are
striving to become a demena-friendly organisaon and our
overall aim is to deliver the demena friends sessions to all
of our staff at our head offices in Whitley.
“Unlocking Demena is a powerful thought provoking play which enables you to have open discussions
about demena. It is interacve which really does help engage the audience and get they key messages
across. It is very accessible and can reach people who would never dream of going to the theatre. This play
is eye opening and is a must-see for all businesses striving to become demena-friendly.”
Here Lucy Robertshaw, Arts Development Manager at DARTS,
talks about how they developed the performance, and how
DARTS helps local communies with various issues:
“As a parcipatory arts company working in Doncaster for 25
years we are o-en approached by companies who want us to
‘translate’ complex issues to a local audience through the use of
art forms such as film, drama, music or visual arts.
“We were approached to create a brand new performance that
would raise awareness of demena so that Doncaster could become demena-friendly. In order to make
the piece as real as possible and relevant to Doncaster audiences, our arsts spoke to adults with demena
and their family and friends at local support groups and Memory Cafes, and held creave consultaon
sessions with local professionals. From this we used improvisaon to create new characters that
represented the key challenges that people with demena in Doncaster had told us about and designed
ways of geAng the audience to think about how they could support those with demena to be a part of the
community.”
Connued on page 3...
2
Tunstall Healthcare connued...
Lucy connues:
“A-er our Unlocking Demena tour finishes at the end of
March, we’re hoping that the evidence we’ve gathered from
audiences and businesses will convince funders that the play
needs to be seen by a wider audience and we can create
another tour.
“We’re currently touring schools, businesses, residenal care
homes and community seAngs across Doncaster with the performance. Our performance is based on real
people’s experiences of living in Doncaster with demena, as well as the impact it can have on their family
members, friends, work colleagues and community. It lasts one hour and has been described as ‘very
powerful and moving’ with a ‘good balance of humour and strong messages.’ “
For more informaon about the play, please visit: www.thepoint.org.uk or
contact via Twier at: @darts_ThePoint
Latest News from DEEP
(Demena Engagement and Empowerment Project)
‘Make a Point about Demena’
A film by people with demena and carers was launched at Demena Congress in Brighton in
November 2014. The six minute film is a collecon of views about demena. The queson was
asked: “If you had to make your main point about demena—what would it be?”
Hundreds of people watched the video at the Demena Congress, including the government
minister, Norman Lamb.
You can watch the video via the following link:
hps://www.youtube.com/watch?v=mf8Z4Qsjxk&feature=youtu.be
Forget Me Nots (Kent)
Eight people with demena from East Kent are causing posive waves by wring and publishing
a book that challenges the stereotypical views about living with the condion.
It’s thought to be the first me that a group, whose members are all experiencing symptoms of
demena, has come together to tell their stories, record their memories and publish them in a
book.
The stories were developed during a six session life-wring course.
Sharing your achievements with DEEP
A few groups have been sending us informaon about the work they are doing. We have a
simple form to fill in, if you would like to start to share your work with us more regularly.
Please contact Katrina to get the monitoring form at: [email protected]
3
Solicitor in drive to help make Doncaster demena friendly
Local law firm, Atherton Godfrey has taken the demena friendly pledge and is playing its part
in helping Doncaster to become a demena friendly community.
Vicky Sladdin, a specialist Wills and Probate solicitor with the firm, has trained as a volunteer
Demena Friend’s Champion. In her role, Vicky runs informaon sessions to help others understand the part
they can play in supporng those living with demena.
In their commitment to have a beer understanding of helping people living with demena, almost 90 of
Vicky’s colleagues have taken part in the informaon sessions she runs, including partners, receponists,
lawyers and support staff, who have all become Demena Friends.
One of them was Jan Carter, a secretary at the firm, whose father-in-law has demena. She said: “It was
fascinang, I’ve learned so much. Understanding about my father-in-law’s illness makes it much easier to
cope with the difficult days we have.”
Vicky is now planning to hold a series of one hour informaon sessions for anyone who would like to
understand more about demena, and in doing so to help create a demena friendly community.
Vicky said: “Being demena friendly is not about being an expert in demena, it’s about having the basic
understanding to be able to support someone living with demena. It’s about understanding what demena
is and how the small things we do can make a difference to those in our community who are living with
demena, and those who care for them.
“Much of my work involves advising elderly clients and their families and becoming a Demena Friends
Champion has helped me have a much beer understanding of how having demena affects a persons’ life,
and in turn, assists me in the way I interact with my clients who are living with demena. Having the
capacity to give instrucons is important and being able to recognise that a client has demena helps when
taking instrucons from them.
“On a personal level, my mum has demena so I have first-hand experience. This is something I am
passionate about and I’m enthusiasc about geAng more people on board. Becoming a Demena Friends
Champion has certainly helped me to beer understand my mum’s needs.”
Latest figures esmate that there are over 4,000 people in Doncaster living with demena, but only 2,411
have received a formal diagnosis. This figure is expected to rise, as the naonal figure also rises, to reach the
esmated one million by 2025 and over 1.7 million by 2051.
Pictured are staff members of
Atherton Godfrey (l-r):
Sarah Sutherland, Solicitor;
Jan Carter, Secretary;
Vicky Sladdin, Solicitor and
Marisa Roberts, Office Manager.
4
Demena Friends & Demena Champions update
Here is a quick snapshot of the progress we have made with friends, champions and members:
Demena Friends
4,431
Demena Champions
56
Acon Alliance members
59
Thank you to all Demena Champions for their connued hard work.
For more details around the Demena Friends iniave please visit: www.demenafriends.org.uk
Giving demena paents a voice
Doncaster Central MP Rosie Winterton was guest speaker at the Demena Forum recently.
Rosie aended the event, organised by the Doncaster Demena Forum, at Forest Gate, part of the RDaSH
Trust. The Forum, which meets on the second Wednesday of every month, is open to people with demena,
their carers and anyone with an interest in demena.
Organiser and Chairman of the Forum is Eileen Harrington, also founder of the demena charity DonMena
and an RDaSH Governor.
If you would like more informaon about the forum, please contact RDaSH Communicaons Office on
01302 796204.
Doncaster Demena Forum
The next Forum is on
Wednesday 8 April 2015 at
1.00pm, Forest Gate Day Hospital
Pictured at the Demena Forum is Eileen Harrington (third from right)
and Rosie Winterton (second from right) with RDaSH staff,
service users and carers.
First South Yorkshire goes demena friendly
First Buses in South Yorkshire has joined the Doncaster Demena Acon Alliance (DDAA) and agreed to
provide all of their drivers with demena friends sessions. This is great news for Doncaster communies, as
all drivers will be equipped with the informaon and understanding to help any passengers that are living
with demena, to safely access public transport.
Jo McQuade from Relate in Doncaster is a Demena Friends Champion, and provided the demena friends
informaon session to the leadership team at First. They have nominated a volunteer from their leadership
team to also become a Demena Friends Champion, who will roll-out the demena friends sessions to the
rest of their staff.
Relate are also a member of the Acon Alliance and
are providing free face to face or telephone
Jo is pictured with
counselling to people who are affected by
members of
demena in Doncaster.
First Buses
For more informaon, please phone 01302 347474.
leadership team
5
SPOTLIGHT ON…
EILEEN HARRINGTON
Eileen Harrington has lived and worked in Doncaster as a teacher all her married life
and became involved with Demena and Alzheimer’s when her husband, Don, began
to display symptoms during the late 90s. He was officially diagnosed in 1999, and
displayed all the typical symptoms of Alzheimer’s, but presented some very challenging
behavior to both Eileen and the staff involved in his care, as the disease progressed.
Don passed away in 2008 in a local EMI (elderly, mentally infirm) care home.
Eileen founded the Doncaster-based charity DonMena, just over two years ago for Doncaster people
affected by demena, and it became a registered charity one year ago. The aim of the charity is a means of
keeping the funds raised to support local organisaons and people, which has proven worthwhile as already
within this short me the funds raised have been able to supply a number of essenal items to support
people to live independently, and to feel that their dignity is upheld whilst in situaons with which they may
be unfamiliar, ie hospital admissions.
The key aims of the charity are to:
•
Raise awareness around living well with demena
•
For people to offer support and advice, which is peer-led, from people who have
experience
•
Reducing the sgma of demena
We spoke to Eileen about her work and she told us: “My husband developed demena and
as I cared for him for several years at home, in the psychiatric unit and in a care home, I
feel I have a lot of experience and experse to offer to others. During that me I
campaigned to effect improvements and changes to three medical establishments for the
benefit of others.
“I am currently the chair of the Doncaster Demena Forum: a service user and carer led
and run forum that supports Doncaster’s development and evaluaon of demena
services, whilst providing informaon and peer support. I liaise with the Doncaster Demena Steering and
Acon Alliance groups, which offer answers and soluons to quesons and problems raised at the Forum. I
give talks to church and women’s groups, and other organisaons such as, Rotary and Round Table.
“I do a lot of fundraising, and have even collected handbags from celebries. I organise various events,
including aucons, fashion shows, quizzes, therapy taster days and cra- events, amongst many others. I sell
handmade cards and homemade produces as well.
“So far the money has been spent on garden furniture for the Memory Clinic, a specialist chair on the
Mallard Ward at DRI, an interacve computer system, a bladder scanner for the Gresley Unit at DRI,
refreshments for demena events, fully-funded a-ernoon tea at Wentworth Garden Centre and a Christmas
lunch at Brigg Garden Centre.”
Eileen is also a Governor for RDaSH (Rotherham, Doncaster and South Humber NHS Foundaon Trust),
which involves organising how the Trust is managed. She is an acve member on several demena related
commiees and aends numerous meengs and conferences to discuss how to improve the lives of those
with demena and what will help people with mental health issues.
Eileen’s commitment of effort and me are a valuable contribuon to the Doncaster community.
6
Farewell to Doncaster’s early onset demena
support group
The groundbreaking People Relying on People (PROP) Group for
Doncaster carers and service users affected by early onset
demena (up to age 65) has sadly dissolved a-er more than 14
years.
Pictured are members of the PROP group
The group ran in partnership with Rotherham Doncaster and
South Humber NHS Foundaon Trust (RDaSH) Young Onset
Demena Service, which provides day care to service users and an opportunity to engage in posive
acvies, while providing carers with a respite break.
The PROP group was an opportunity for carers to share experiences, praccal advice and support, and a
chance to go on day trips and holidays with people who understood their situaon.
When the group first started, there were no services for paents with demena under the age of 65. PROP
gained recognion through giving talks at conferences all around the country, and have successfully helped
others set up similar groups. Now, the development of smaller community-based groups mean that there is
less need for a more central group like PROP.
PROP produced a training film and requests for copies have come from all around the country. They also
backed a campaign aimed at increasing early diagnosis, and one of its members, Dennis Jubb, received an
MBE for his services to people with young onset demena.
PROP founder, Carol Jubb, said: “We would sincerely like to thank all the members at RDaSH and Doncaster
Council for their tremendous support over the years.”
MP for Doncaster Central, Rosie Winterton, said: “I have been proud to support the wonderful work of
PROP. The group has helped so many people and allowed them to get together in an informal and
welcoming seAng.
“Hopefully PROP’s work will connue through the work of other groups it has inspired.”
Anyone who would like a copy of the PROP film should contact Carol Jubb at [email protected]
Community demena friends support in CarcroT
Do you have, or do you care for someone with demena?
Come and meet us and others in a similar circumstance for a chat and coffee in a
supporve and informal environment.
We meet monthly: sharing experiences, knowledge on services and making new friends to
support each other in living well with demena.
First Thursday of each month between 1.00 and 3.00pm at
Redmond Centre, High Street, CarcroT, Doncaster
Call: 01302 380077
Email: [email protected]
Visit: www.sueryder.org
See page 6 for informaon
about their new video!
7
Healthwatch was established on 1 April 2013. An
independent consumer champion who will ensure
that everyone in Doncaster has the opportunity to
have their voice heard with the objecve of making
adults and children’s health and social care services
beer in Doncaster.
Healthwatch Doncaster (HWD) will:
•
Collect YOUR experiences/stories of health and social care services to help improve them and shape
future service provision
•
Signpost / help point you to the service that is right for you
•
Support you in making a complaint about your NHS service experience
Your Healthwatch is acve throughout the Borough through Community Hubs that are held regularly.
Currently, these are held at Edlington Hilltop Community Centre, Holmescarr Centre and the Moorends
Miners Welfare in Moorends. You can keep up to date where your Healthwatch will be next, on the website:
hp://www.healthwatchdoncaster.org.uk/content/events
If you’re in the area, come and say hello to your Healthwatch!
Membership of your Healthwatch is FREE and open to everyone in the Doncaster Borough. If you would like
to become a HWD Ambassador and volunteer your me in a number of roles, speak to the support team
through the contact details below.
Healthwatch Doncaster has copies of a handbook produced by the Alzheimer’s Society entled ‘My Visitor
Book’. This is a resource to help people with demena and their carers, to complete regarding the health
and social care professionals who visit them at home.
If you would like a copy, or if you want to know more about your local
Healthwatch, then get in touch:
36 Duke Street
Doncaster
DN1 3EA
Freephone: 0808 801 0391
Support Team: 01302 378935
www.healthwatchdoncaster.org.uk
facebook.com/hwdoncaster
Twier: @hwdoncaster
Tips, ideas and help for carers: by carers of people who have demena
8
Safeguarding Adults Keeping Safe campaign
Background
The Doncaster Safeguarding Adults Board has been working for some me to produce
awareness raising materials to highlight the many ways in which adults can be at risk of abuse. To offer
some background, back in November 2011, wide-ranging consultaon was undertaken which captured
exisng and potenal service users, their families, carers and voluntary/community groups, to help inform
the development of the Board’s Communicaon and Engagement Strategy. Further engagement was
carried out in December 2013 with the wider public to establish what is known about adult safeguarding,
including whether people had seen any informaon about it and if not, whether they would know where to
find it. These two consultaons told us that the term ‘adult safeguarding’ is not commonly understood by
the majority of people, but the concept of ‘keep safe’ was much more familiar.
What we did
In light of the consultaon findings, we made a number of recommendaons – one of which was to deliver
a ‘Keeping Safe’ campaign. The purpose of the campaign is to empower adults at risk to protect
themselves from abuse, by raising awareness of the safeguarding adults process.
The principle objecves of the campaign are:
• To raise awareness of the different types of adult abuse, so people are able to recognise it when they
see it and/or experience it;
• To raise awareness of how to report adult abuse concerns and to encourage people to report any
concerns they have.
The key messages we want to achieve through the campaign are:
• Everyone has the right to be safe, to be respected, to be heard;
• If you see something, say something.
The campaign materials have recently been finalised. The intended audience to receive these materials is
wide-ranging, with a primary focus on those adults within the Doncaster Borough who are at the greatest
risk of abuse. Alongside this, we hope to publicise these messages to other people who live and/or work in
Doncaster, as any one of us could see or hear something that may be of concern.
In addion to the campaign materials, we also produced a Safeguarding Film entled ‘If you See
Something, Say Something’. This is a very short film designed to help people recognise the different types
of abuse, to encourage people to report abuse when they see it and to let people know how they can
report abuse. This film can be accessed on our website via the following link:
www.doncaster.gov.uk/safeguardingfilm
How can you help?
We would like to ask for your help in distribung these key messages to your staff and/or key contacts
within your organisaon/group. We would be very grateful if you could disseminate this informaon to
your key contacts in order to assist us in reaching as wide an audience as possible.
We will be reviewing the impact of the campaign at regular intervals to measure the effecveness of the
publicity and would very much appreciate your assistance in reaching key members of the community via
your contacts.
If you would like any printed copies of the leaflets or posters, or if you have any quesons regarding the
campaign, please do not hesitate to contact Lisa Swainston on 01302 734169 or at:
[email protected]
Thank you in advance for your help and support.
9
Support services for people
with demena, their families
and carers in Doncaster
Our services
Alzheimer’s Society provides a range of support
services for people with demena, their families and
their carers in your area.
Someone to talk to - You can phone at any me during
our opening hours (Monday to Friday 9am – 5pm) to
talk in confidence with a member of our Demena
Support Team. Our Demena Support Workers are
here to listen when you feel the need to talk, or to offer guidance on specific issues. Our
team give personalised praccal and emoonal support to people with demena and their
carers.
Memory Cafés - A place for people with demena and their carers to share informaon and
experiences, take part in smulang acvies, listen to music or to simply have a cup of tea
and a chat.
Singing for the Brain® - A smulang group acvity, for people in the early to moderate
stages of demena and their carers, which can help with general well being and confidence.
Carer Informaon and Support Programme - A series of workshops for people caring for a
family member or friend with demena.
Carer’s Support Group (run in partnership with the NHS) - The aim of the group is to increase
the carer’s understanding of demena and offer support by trained staff and peer group
members.
If you would like more informaon about any of our services, please get in touch.
We’re here to help.
Telephone: 01709 580543
Email: [email protected]
All our services are provided for people living with demena at home.
10
‘Voices from CarcroT Demena Peer Support Group’
NHS Doncaster CCG has worked with Carcro- Demena Peer Support Group to produce a short video tled
‘Voices from Carcro- Demena Support Group’.
The group is managed by Sue Ryder Care and operates in the village of Carcro-, Doncaster.
The video interviews Janice CuAng and Marilyn Cocke of Sue Ryder Care, and members of the support
group, to gain each individual’s views on how the group can help people with demena or those caring for
someone with demena.
You can view the video via the following link (please copy and paste it in to your internet browser):
hps://www.youtube.com/watch?v=hJmHEprZEw4
FREE NHS HEALTH CHECKS
Test Your Health are waing to bring Cardiovascular Health Checks to
your workplace!
The health check is a quick and simple review of core risk factors associated with type 2 diabetes,
renal disease, stroke and heart disease and includes:
•
Instant Cholesterol & Blood Sugar tesng
•
Blood Pressure & Heart rate
•
A few quesons about health and family history
•
Measurement of height and weight
•
Opportunity for the aendee to ask any related health
quesons
•
Praccal advice for the future
•
Signposng to other services i.e. smoking cessaon
Aendees should....
•
BE aged between 40–74
•
LIVE in Doncaster (with a DN 1-12 or S64 postcode)
•
Be registered with a Doncaster GP
•
NOT already be under the care of their GP for any cardiovascular disease i.e. Diabetes,
Hypertension or Cholesterol
Each aendee will take a copy of their results. An electronic copy will be sent to their GP. (Anyone
outside this criteria is welcome to have a mini check i.e. BP/BMI/Signposng)
The session is run quietly and smoothly with the minimum of disrupon and all the Test Your Health
nurse will need is a room with a table, 2 chairs and plug socket.
ALL waste is taken away by the nurse and the area leT clean and dy.
If yours is a larger business, we can set up on your car park and deliver the health checks on board
our health bus:
Why not kick off 2015 with NEW YEAR health checks for your staff ?
Call Ann Clarke today on 07884 235505 for more details or email [email protected]
11
Doncaster Demena
Acon Alliance
Doncaster Demena Acon Alliance (DDAA)
We want Doncaster to become a Demena Friendly community in which people living with
demena, and their carers, feel confident knowing they can access the support they need
and parcipate in acvies which are meaningful to them.
The DDAA aims to reduce the sgma and raise understanding of demena through
awareness raising acvies, training and educaon, to improve the services delivered
locally so that people living with demena are able to connue doing the things they enjoy
within their own community for longer.
To do this, we need to bring together the whole borough in making a difference to those
living with demena, including families and carers.
The Doncaster Demena Acon Alliance is now fully established and encourages others to
join. Membership is open to any organisaon, business or group seeking to make a
difference to the quality of life for people with demena and their carers.
For more informaon on the DDAA and how to join please contact:
Michele Clarke on 01302 566363 or email at [email protected]
Alternavely visit the Doncaster Demena Acon Alliance Website on:
www.demenaacon.org.uk/local_alliances
Making Space event
Making Space is holding a Clinical Support Group on Friday 1 May 2015
for carers. This will be held at Sandalwood Day Centre, Sandalwood
Close, DN2 5DW. Admiral Nurse, Kathryn Williams, will be in aendance.
Demena Coordinator, Rachel Yates, will also be holding a Life Story Work
Session with service users on this day.
For more informaon, please contact Janet Griffiths at Sandalwood Day Centre
on 01302 327318.
12
The following poem was wrien by Hazel Brown, (who lives in County Durham), for her
best friend’s husband, who lives in Askern, Doncaster.
This is based on her own experiences of demena.
A Living Nightmare
It’s a lonely life without you,
You’re here and yet you’re not,
The happy mes that we did share,
Memories that you’ve forgot.
I tried to keep you with me,
In the end we had to part,
Eventually you went away,
And took with you my heart.
They took you to a place called home,
It’s just somewhere to stay,
Your clothes to keep, a bed to sleep,
Somewhere your head to lay.
Your quality of life has gone,
Although they try to care,
They leave you siZng on your own,
To stare, and stare, and stare.
I visit you quite oTen,
And see you in your chair,
I smile at you, talk to you,
Knowing you’re not there.
You didn’t know me yesterday,
Today I think you might,
I kissed your cheek, held your hand,
And you held mine real ght.
My love has never gone away,
My feelings sll the same,
Why did it happen to you my love,
There’s no-one I can blame.
13

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