Dementia supportive Dementia supportive communities: a vision for communities: a vision for

the future?the future?Professor Bob WoodsProfessor Bob Woods

Dementia Services Development Dementia Services Development Centre WalesCentre Wales

Bangor UniversityBangor Universityb.woods@bangor.ac.uk

What is dementia?What is dementia?

An acquired impairment An acquired impairment Global cognitive functions (memory Global cognitive functions (memory

plus)plus) Self-care and day-to-day functionSelf-care and day-to-day function Clear consciousnessClear consciousness Usually progressiveUsually progressive Behavioural and psychological Behavioural and psychological

symptoms symptoms maymay include wandering, include wandering, aggression, apathy, hallucinations, loss aggression, apathy, hallucinations, loss of inhibitions, repetition etc.of inhibitions, repetition etc.

Types of dementiaTypes of dementia

Alzheimer’s disease - 40%Alzheimer’s disease - 40% Vascular (multi-infarct) - 20%Vascular (multi-infarct) - 20% Lewy Body dementia - 15%Lewy Body dementia - 15% Mixed Alzheimer’s & Vascular - 15%Mixed Alzheimer’s & Vascular - 15% Other (including alcohol-related, CJD, Other (including alcohol-related, CJD,

Pick’s etc) - 10%Pick’s etc) - 10% Each type associated with distinct Each type associated with distinct

brain changes, evident at post-mortembrain changes, evident at post-mortem

Prevalence of dementia in older Prevalence of dementia in older people people (UK Dementia Report, 2007)(UK Dementia Report, 2007)

0

5

10

15

20

25

30

35

65-69

70-74

75-79

80-84

85-89

90-94

95+

Prevalence ofdementia (% )

An older populationAn older population

0

2

4

6

8

10

12

14

Millions

65+

19851995200520152025

An older older populationAn older older population

00.5

11.5

22.5

33.5

4

Millions

80+

19851995200520152025

Ageing population predicted to Ageing population predicted to increase number of people with age-increase number of people with age-related conditions such as dementia related conditions such as dementia

37,000 people in Wales with dementia in 37,000 people in Wales with dementia in 20072007

50,000 people in Wales with dementia in 50,000 people in Wales with dementia in 20212021

Number of people with dementia predicted to Number of people with dementia predicted to increase by 33% by the year 2021increase by 33% by the year 2021 Gwynedd from 1,719 to 2325Gwynedd from 1,719 to 2325 Anglesey from 905 to 1,223Anglesey from 905 to 1,223 Conwy from 2,062 to 2,793Conwy from 2,062 to 2,793

Prevalence of dementia in Prevalence of dementia in Conwy Conwy (Dementia UK report, 2007)(Dementia UK report, 2007)

30-6430-64 65-7465-74 75+75+ TotalTotal % of % of over over 65s65s

% of % of total total pop.pop.

MenMen 1818 147147 505505 670670 5.95.9 1.31.3

WomenWomen 1313 133133 1,2461,246 1,3921,392 9.29.2 2.42.4

TotalTotal 3131 280280 1,7511,751 2,0622,062 7.87.8 1.851.85

ProjecteProjected by d by 20212021

3131 380380 2,3822,382 2,7932,793 7.817.81 2.452.45

How old are people with How old are people with dementia?dementia?

(Prevalence figures for Gwynedd 2011 – UK (Prevalence figures for Gwynedd 2011 – UK Dementia Report)Dementia Report)

30-6465-7475-8485+

National Dementia Vision National Dementia Vision for Wales 2011 – 6 for Wales 2011 – 6

commitmentscommitments To improve servicesTo improve services Younger people with dementiaYounger people with dementia Dementia CoordinatorsDementia Coordinators Dementia targetsDementia targets

To improve informationTo improve information To raise awarenessTo raise awareness To improve trainingTo improve training To support researchTo support research High level dementia groupHigh level dementia group

General hospital wardsGeneral hospital wards Bilingual provisionBilingual provision

Dementia Supportive Dementia Supportive CommunitiesCommunities

‘‘Communities which have the Communities which have the capacity to support people affected capacity to support people affected by dementia so they can enjoy the by dementia so they can enjoy the best possible quality of life’best possible quality of life’

Dementia Supportive Dementia Supportive Communities – key Communities – key

outcomesoutcomes The community articulates the voice of The community articulates the voice of

people affected by dementiapeople affected by dementia The community is consulted and listened The community is consulted and listened

toto Where services are available, they are Where services are available, they are

accessible and responsive to the needs of accessible and responsive to the needs of the community they seek to servethe community they seek to serve

People with dementia are included in People with dementia are included in community activities and they and their community activities and they and their carers are supported by that communitycarers are supported by that community

Creating dementia friendly Creating dementia friendly communities that understand communities that understand

how to help (England)how to help (England) By 2015, up to 20 By 2015, up to 20

cities, towns and cities, towns and villages will have villages will have signed up to signed up to become more become more dementia friendlydementia friendly

Support from Support from leading businessesleading businesses

Awareness raisingAwareness raising

Dementia Action Alliance – Dementia Action Alliance – National Dementia National Dementia

DeclarationDeclaration I have a sense of belonging and of being a valued part of I have a sense of belonging and of being a valued part of

family, community and civic life family, community and civic life

• I feel safe and supported in my home and in my community, which I feel safe and supported in my home and in my community, which

includes shops and pubs, sporting and cultural opportunities. includes shops and pubs, sporting and cultural opportunities.

• Neither I nor my family feel ashamed or discriminated against Neither I nor my family feel ashamed or discriminated against

because I have dementia. People with whom we come into contact because I have dementia. People with whom we come into contact

are helpful and supportive. are helpful and supportive.

• My carer and I continue to have the opportunity to develop new My carer and I continue to have the opportunity to develop new

interests and new social networks. interests and new social networks.

• It is easy for me to continue to live in my own home and I and my 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. carer will both have the support needed for me to do this.

Dementia Action Alliance Dementia Action Alliance ‘Yougov’ poll ‘Yougov’ poll (Kitchen, 2011)(Kitchen, 2011)

Representative sample of 2003 people Representative sample of 2003 people surveyedsurveyed

‘‘People with dementia and carers of those People with dementia and carers of those with dementia need more help and support’with dementia need more help and support’ 83% agreed / strongly agreed 83% agreed / strongly agreed

‘‘Funding for dementia services is likely to Funding for dementia services is likely to be threatened by the current financial be threatened by the current financial climate’climate’ 73% agreed / strongly agreed73% agreed / strongly agreed

Dementia Action Alliance Dementia Action Alliance ‘Yougov’ poll ‘Yougov’ poll (Kitchen, 2011)(Kitchen, 2011)

In which ONE of the following areas would you be In which ONE of the following areas would you be LEAST willing to see local authorities make cuts?LEAST willing to see local authorities make cuts? Social care for older people – 36% (50% of over 55s)Social care for older people – 36% (50% of over 55s) Children’s services – 18%Children’s services – 18% Bin collections – 15%Bin collections – 15% Road improvements – 8%Road improvements – 8% Transport – 6%Transport – 6% Libraries – 5%Libraries – 5% None of the above – 8%None of the above – 8% Don’t know – 5%Don’t know – 5%

What is a dementia What is a dementia supportive community?supportive community?

Un o bob tri…….Un o bob tri…….

What is a dementia What is a dementia supportive community?supportive community?

Able to take part in more ‘normal’ Able to take part in more ‘normal’ mainstream activitiesmainstream activities Able to be confident won’t be patronised or Able to be confident won’t be patronised or

humiliatedhumiliated Access to more places Access to more places

Not confusingNot confusing Well signpostedWell signposted TransportTransport Attitudes of othersAttitudes of others

Social networksSocial networks Friends stay in touchFriends stay in touch New friends and networksNew friends and networks

What is a dementia What is a dementia supportive community?supportive community?

Social inclusion means giving and Social inclusion means giving and receivingreceiving

Recognising the contribution people Recognising the contribution people with dementia can makewith dementia can make

What gets in the way?What gets in the way?

MisunderstandingMisunderstanding Inevitable part of ageingInevitable part of ageing Nothing can be doneNothing can be done

HelplessnessHelplessness Protecting our memoriesProtecting our memories Our fearOur fear

Worse than death?Worse than death?

‘‘Zombie’ characteristicsZombie’ characteristics Exceptional physical characteristicsExceptional physical characteristics

shuffling, wandering, moaningshuffling, wandering, moaning Lack of self-recognitionLack of self-recognition Failure to recognise othersFailure to recognise others Cannibalisation of living human beingsCannibalisation of living human beings

‘‘The unique curse of Alzheimer’s is that it The unique curse of Alzheimer’s is that it ravages several victims for every brain it ravages several victims for every brain it infects ’infects ’

The exponential spreading of this plague,The exponential spreading of this plague, The resulting horror of those still unafflictedThe resulting horror of those still unafflicted The zombie’s overwhelming hopelessness The zombie’s overwhelming hopelessness

that makes death a preferred alternative that makes death a preferred alternative than continued existence.than continued existence.

People with dementia are NOT People with dementia are NOT zombies zombies

We can, and too often do, strip We can, and too often do, strip humanity and personhood from humanity and personhood from people with dementiapeople with dementia Tranquillisers Tranquillisers Negative interactionsNegative interactions

Prime Minister’s challenge Prime Minister’s challenge on dementia (March 2012)on dementia (March 2012)

‘‘As a society, we must make sure As a society, we must make sure that people with dementia, their that people with dementia, their carers and families can be active carers and families can be active citizens with the potential to live well citizens with the potential to live well with dementia at every stage of the with dementia at every stage of the condition.’condition.’

‘‘We’re LIVING We’re LIVING with dementia, with dementia, not dying from not dying from it!’it!’

The ACE Club (for The ACE Club (for younger people younger people with dementia and with dementia and their carers), Rhyltheir carers), Rhyl Alzheimer’s Society Living with

Dementia programme

Meet Me at MoMAMeet Me at MoMA

Individuals with Individuals with dementiadementiaLook at art in the galleries Look at art in the galleries with your family and friends.with your family and friends.

Discuss art with specially Discuss art with specially trained MoMA educators trained MoMA educators who discuss themes, artists, who discuss themes, artists, and exhibitions. Look at art and exhibitions. Look at art in the galleries and then in the galleries and then make artwork of your own.make artwork of your own.

ARTZ – Artists for ARTZ – Artists for Alzheimer’sAlzheimer’s

“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?

“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.stm

‘Exhibition of Engage Cymru Project at Plas Maesincla’

What are the effectsWhat are the effects

Kat Algar commencing an evaluation Kat Algar commencing an evaluation focusing on involvement, focusing on involvement, engagement, affect ‘in the moment’ engagement, affect ‘in the moment’ in a group programme with care in a group programme with care home residents led by a creative home residents led by a creative artistartist

Does it also change attitudes of Does it also change attitudes of others?others?

Severe dementia? The Severe dementia? The ultimate challenge?ultimate challenge?

Awareness in severe Awareness in severe dementiadementia

Sensory appreciation still possibleSensory appreciation still possible Social stimuli most often elicit a responseSocial stimuli most often elicit a response We need to be more sensitive to the We need to be more sensitive to the

indications the person gives us of their indications the person gives us of their response and interestresponse and interest Eye movementsEye movements Facial expressionFacial expression SoundsSounds Subtle movementsSubtle movements

Opportunities to take part in Opportunities to take part in high quality researchhigh quality research

NEURODEM participant registerNEURODEM participant register Current projects include:Current projects include:

Effects of being bilingual on dementiaEffects of being bilingual on dementia Individual cognitive stimulation (delivered Individual cognitive stimulation (delivered

by carer)by carer) Maintaining function and well-being in later Maintaining function and well-being in later

life (Anglesey and Gwynedd) life (Anglesey and Gwynedd) CFAS WalesCFAS Wales Lifestyle MattersLifestyle Matters Agewell centresAgewell centres

Thank you!Thank you!

Thanks to colleagues and Thanks to colleagues and collaborators:collaborators:

The DSDC Wales teamThe DSDC Wales team Joan Woods, Training Officer, DSDCJoan Woods, Training Officer, DSDC The Alzheimer’s SocietyThe Alzheimer’s Society