Dementia supportive
communities: a vision for the
future?
Professor Bob Woods
Dementia Services Development Centre
Wales
Bangor University
b.woods@bangor.ac.uk
What is dementia?
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An acquired impairment
Global cognitive functions (memory plus)
Self-care and day-to-day function
Clear consciousness
Usually progressive
Behavioural and psychological symptoms
may include wandering, aggression,
apathy, hallucinations, loss of inhibitions,
repetition etc.
Types of dementia
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Alzheimer’s disease - 40%
Vascular (multi-infarct) - 20%
Lewy Body dementia - 15%
Mixed Alzheimer’s & Vascular - 15%
Other (including alcohol-related, CJD,
Pick’s etc) - 10%
Each type associated with distinct brain
changes, evident at post-mortem
Prevalence of dementia in older people
(UK Dementia Report, 2007)
35
30
25
20
Prevalence of
dementia (%)
15
10
5
0
6569
7074
7579
8084
8589
90- 95+
94
An older population
14
12
10
Millions
1985
1995
2005
2015
2025
8
6
4
2
0
65+
An older older population
4
3.5
3
2.5
Millions 2
1.5
1
0.5
0
1985
1995
2005
2015
2025
80+
Ageing population predicted to
increase number of people with agerelated conditions such as dementia
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37,000 people in Wales with dementia in
2007
50,000 people in Wales with dementia in
2021
Number of people with dementia predicted to
increase by 33% by the year 2021
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Gwynedd from 1,719 to 2325
Anglesey from 905 to 1,223
Conwy from 2,062 to 2,793
Prevalence of dementia in Conwy
(Dementia UK report, 2007)
30-64
65-74
75+
Total
% of
% of
over 65s total
pop.
Men
18
147
505
670
5.9
1.3
Women
13
133
1,246
1,392
9.2
2.4
Total
31
280
1,751
2,062
7.8
1.85
Projected 31
by 2021
380
2,382
2,793
7.81
2.45
How old are people with dementia?
(Prevalence figures for Gwynedd 2011 – UK
Dementia Report)
30-64
65-74
75-84
85+
National Dementia Vision for
Wales 2011 – 6 commitments
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To improve services
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Younger people with dementia
Dementia Coordinators
Dementia targets
To improve information
To raise awareness
To improve training
To support research
High level dementia group
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General hospital wards
Bilingual provision
Dementia Supportive
Communities
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‘Communities which have the capacity to
support people affected by dementia so
they can enjoy the best possible quality of
life’
Dementia Supportive
Communities – key outcomes
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The community articulates the voice of
people affected by dementia
The community is consulted and listened to
Where services are available, they are
accessible and responsive to the needs of the
community they seek to serve
People with dementia are included in
community activities and they and their
carers are supported by that community
Creating dementia friendly
communities that understand how to
help (England)
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By 2015, up to 20
cities, towns and
villages will have
signed up to
become more
dementia friendly
Support from
leading businesses
Awareness raising
Dementia Action Alliance –
National Dementia Declaration
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I have a sense of belonging and of being a valued part of family,
community and civic life
•
I feel safe and supported in my home and in my community, which includes
shops and pubs, sporting and cultural opportunities.
•
Neither I nor my family feel ashamed or discriminated against because I
have dementia. People with whom we come into contact are helpful and
supportive.
•
My carer and I continue to have the opportunity to develop new interests
and new social networks.
•
It is easy for me to continue to live in my own home and I and my carer will
both have the support needed for me to do this.
Dementia Action Alliance
‘Yougov’ poll (Kitchen, 2011)
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Representative sample of 2003 people
surveyed
‘People with dementia and carers of those
with dementia need more help and support’
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83% agreed / strongly agreed
‘Funding for dementia services is likely to be
threatened by the current financial climate’
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73% agreed / strongly agreed
Dementia Action Alliance
‘Yougov’ poll (Kitchen, 2011)
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In which ONE of the following areas would you be
LEAST willing to see local authorities make cuts?
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Social care for older people – 36% (50% of over 55s)
Children’s services – 18%
Bin collections – 15%
Road improvements – 8%
Transport – 6%
Libraries – 5%
None of the above – 8%
Don’t know – 5%
What is a dementia supportive
community?
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Un o bob tri…….
What is a dementia supportive
community?
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Able to take part in more ‘normal’ mainstream
activities
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Access to more places
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Able to be confident won’t be patronised or
humiliated
Not confusing
Well signposted
Transport
Attitudes of others
Social networks
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Friends stay in touch
New friends and networks
What is a dementia supportive
community?
Galleries
Shops
Post
Office
Buses
Cinemas
Person
with
dementia
Sports
clubs
Churches
Neighbours
A&E
Leisure
centres
Libraries
Banks
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Social inclusion means giving and
receiving
Recognising the contribution people with
dementia can make
What gets in the way?
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Misunderstanding
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Inevitable part of ageing
Nothing can be done
Helplessness
Protecting our memories
Our fear
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Worse than death?
‘Zombie’ characteristics
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Exceptional physical characteristics
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Lack of self-recognition
Failure to recognise others
Cannibalisation of living human beings
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shuffling, wandering, moaning
‘The unique curse of Alzheimer’s is that it ravages
several victims for every brain it infects ’
The exponential spreading of this plague,
The resulting horror of those still unafflicted
The zombie’s overwhelming hopelessness that
makes death a preferred alternative than
continued existence.
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People with dementia are NOT zombies
We can, and too often do, strip humanity
and personhood from people with
dementia
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Tranquillisers
Negative interactions
Prime Minister’s challenge on
dementia (March 2012)
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‘As a society, we must make sure that
people with dementia, their carers and
families can be active citizens with the
potential to live well with dementia at
every stage of the condition.’
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‘We’re LIVING with
dementia, not
dying from it!’
The ACE Club (for
younger people with
dementia and their
carers), Rhyl
Alzheimer’s Society Living with
Dementia programme
Meet Me at MoMA
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Individuals with
dementia
Look at art in the galleries
with your family and friends.
Discuss art with specially
trained MoMA educators who
discuss themes, artists, and
exhibitions. Look at art in the
galleries and then make
artwork of your own.
ARTZ – Artists for Alzheimer’s
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“There is humanity in the making of art.
Artists for Alzheimer’s enriches the cultural life of people living
with Alzheimer’s disease, to express their inner-selves, and
lessen the stigma that accompanies a diagnosis.
Art is a treatment for Alzheimer's.
We have established that art experience significantly reduces
psycho-behavioral symptoms —anxiety, aggression,
agitation and apathy.
Art contributes to functioning optimizing remaining capacities
and utilizing areas of the brain that often go unused for
years.”
Are these claims supportable? Does it matter?
‘Exhibition of Engage Cymru
Project at Plas Maesincla’
“Plas Maesincla residents in
Caernarfon visited an exhibition
before creating their own artwork
ranging from paintings to pottery.
The artwork is seen as a way to
develop an interest and improve
quality of life.
Work created by the residents will
be on show at the Gwynedd
Museum and Art Gallery in Bangor
later in the year. “
http://news.bbc.co.uk/1/hi/wales/north_west/8531176.st
m
What are the effects
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Kat Algar commencing an evaluation
focusing on involvement, engagement,
affect ‘in the moment’ in a group
programme with care home residents led
by a creative artist
Does it also change attitudes of others?
Severe dementia? The ultimate
challenge?
Awareness in severe dementia
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Sensory appreciation still possible
Social stimuli most often elicit a response
We need to be more sensitive to the
indications the person gives us of their
response and interest
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Eye movements
Facial expression
Sounds
Subtle movements
Opportunities to take part in
high quality research
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NEURODEM participant register
Current projects include:
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Effects of being bilingual on dementia
Individual cognitive stimulation (delivered by
carer)
Maintaining function and well-being in later life
(Anglesey and Gwynedd)
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CFAS Wales
Lifestyle Matters
Agewell centres
Conwy
A supportive community
for people with dementia
Thank you!
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Thanks to colleagues and collaborators:
The DSDC Wales team
Joan Woods, Training Officer, DSDC
The Alzheimer’s Society