Dementia supportive communities: a vision for the future? Professor Bob Woods Dementia Services Development Centre Wales Bangor University

What is dementia? An acquired impairment An acquired impairment Global cognitive functions (memory plus) Global cognitive functions (memory plus) Self-care and day-to-day function Self-care and day-to-day function Clear consciousness Clear consciousness Usually progressive Usually progressive Behavioural and psychological symptoms may include wandering, aggression, apathy, hallucinations, loss of inhibitions, repetition etc. Behavioural and psychological symptoms may include wandering, aggression, apathy, hallucinations, loss of inhibitions, repetition etc.

Types 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, Pick’s etc) - 10% Other (including alcohol-related, CJD, Pick’s etc) - 10% Each type associated with distinct brain changes, evident at post-mortem Each type associated with distinct brain changes, evident at post-mortem

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

An older population

An older older population

Ageing population predicted to increase number of people with age- related conditions such as dementia 37,000 people in Wales with dementia in ,000 people in Wales with dementia in ,000 people in Wales with dementia in ,000 people in Wales with dementia in 2021 Number of people with dementia predicted to increase by 33% by the year 2021 Number of people with dementia predicted to increase by 33% by the year 2021 Gwynedd from 1,719 to 2325 Gwynedd from 1,719 to 2325 Anglesey from 905 to 1,223 Anglesey from 905 to 1,223 Conwy from 2,062 to 2,793 Conwy from 2,062 to 2,793

Prevalence of dementia in Conwy (Dementia UK report, 2007) Total % of over 65s % of total pop. Men Women131331,2461, Total312801,7512, Projected by ,3822,

How old are people with dementia? (Prevalence figures for Gwynedd 2011 – UK Dementia Report)

National Dementia Vision for Wales 2011 – 6 commitments To improve services To improve services Younger people with dementia Dementia Coordinators Dementia targets To improve information To improve information To raise awareness To raise awareness To improve training To improve training To support research To support research High level dementia group High level dementia group General hospital wards Bilingual provision

Dementia Supportive Communities ‘Communities which have the capacity to support people affected by dementia so they can enjoy the best possible quality of life’ ‘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 The community articulates the voice of people affected by dementia The community articulates the voice of people affected by dementia The community is consulted and listened to 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 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 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) By 2015, up to 20 cities, towns and villages will have signed up to become more dementia friendly By 2015, up to 20 cities, towns and villages will have signed up to become more dementia friendly Support from leading businesses Support from leading businesses Awareness raising Awareness raising

Dementia Action Alliance – National Dementia Declaration I have a sense of belonging and of being a valued part of family, community and civic life 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. 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. 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. 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. 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) Representative sample of 2003 people surveyed Representative sample of 2003 people surveyed ‘People with dementia and carers of those with dementia need more help and support’ ‘People with dementia and carers of those with dementia need more help and support’ 83% agreed / strongly agreed 83% agreed / strongly agreed ‘Funding for dementia services is likely to be threatened by the current financial climate’ ‘Funding for dementia services is likely to be threatened by the current financial climate’ 73% agreed / strongly agreed 73% agreed / strongly agreed

Dementia Action Alliance ‘Yougov’ poll (Kitchen, 2011) In which ONE of the following areas would you be LEAST willing to see local authorities make cuts? In which ONE of the following areas would you be 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 supportive community? Un o bob tri……. Un o bob tri…….

What is a dementia supportive community? Able to take part in more ‘normal’ mainstream activities Able to take part in more ‘normal’ mainstream activities Able to be confident won’t be patronised or humiliated Able to be confident won’t be patronised or humiliated Access to more places Access to more places Not confusing Not confusing Well signposted Well signposted Transport Transport Attitudes of others Attitudes of others Social networks Social networks Friends stay in touch Friends stay in touch New friends and networks New friends and networks

What is a dementia supportive community? Person with dementia Shops Post Office Buses ChurchesNeighboursLibraries Banks Leisure centres A & E Sports clubs CinemasGalleries

Social inclusion means giving and receiving Social inclusion means giving and receiving Recognising the contribution people with dementia can make Recognising the contribution people with dementia can make

What gets in the way? Misunderstanding Misunderstanding Inevitable part of ageing Inevitable part of ageing Nothing can be done Nothing can be done Helplessness Helplessness Protecting our memories Protecting our memories Our fear Our fear Worse than death? Worse than death?

‘Zombie’ characteristics Exceptional physical characteristics Exceptional physical characteristics shuffling, wandering, moaning shuffling, wandering, moaning Lack of self-recognition Lack of self-recognition Failure to recognise others Failure to recognise others Cannibalisation of living human beings Cannibalisation of living human beings ‘The unique curse of Alzheimer’s is that it ravages several victims for every brain it infects ’ ‘The unique curse of Alzheimer’s is that it ravages several victims for every brain it infects ’ The exponential spreading of this plague, The exponential spreading of this plague, The resulting horror of those still unafflicted The resulting horror of those still unafflicted The zombie’s overwhelming hopelessness that makes death a preferred alternative than continued existence. The zombie’s overwhelming hopelessness that makes death a preferred alternative than continued existence.

People with dementia are NOT zombies People with dementia are NOT zombies We can, and too often do, strip humanity and personhood from people with dementia We can, and too often do, strip humanity and personhood from people with dementia Tranquillisers Tranquillisers Negative interactions Negative interactions

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

‘We’re LIVING with dementia, not dying from it!’ ‘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 Individuals with dementia Individuals with dementia Look at art in the galleries with your family and friends. 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. 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 “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. “ m ‘Exhibition of Engage Cymru Project at Plas Maesincla’

What are the effects 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 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? Does it also change attitudes of others?

Severe dementia? The ultimate challenge?

Awareness in severe dementia Sensory appreciation still possible Sensory appreciation still possible Social stimuli most often elicit a response 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 We need to be more sensitive to the indications the person gives us of their response and interest Eye movements Eye movements Facial expression Facial expression Sounds Sounds Subtle movements Subtle movements

Opportunities to take part in high quality research NEURODEM participant register NEURODEM participant register Current projects include: Current projects include: Effects of being bilingual on dementia Effects of being bilingual on dementia Individual cognitive stimulation (delivered by carer) Individual cognitive stimulation (delivered by carer) Maintaining function and well-being in later life (Anglesey and Gwynedd) Maintaining function and well-being in later life (Anglesey and Gwynedd) CFAS Wales CFAS Wales Lifestyle Matters Lifestyle Matters Agewell centres Agewell centres

Conwy A supportive community for people with dementia

Thank you! Thanks to colleagues and collaborators: Thanks to colleagues and collaborators: The DSDC Wales team The DSDC Wales team Joan Woods, Training Officer, DSDC Joan Woods, Training Officer, DSDC The Alzheimer’s Society The Alzheimer’s Society