Why Creative Dementia?
We are responding to social, economic and political challenges that require government and society to think and act more creatively in respect of the kind of support that can be mobilised for increasing numbers of people affected by dementia. The major drivers are
Dementia is one of the most significant health challenges for government and society in the UK and indeed worldwide. Age is a major risk factor for dementia. Currently the prevalence of dementia is 1:100 people aged 65-69 rising to 1:6 people aged 80+. Some 68% of those affected are aged over 80 whilst 17% are under 65.
About two thirds of people with dementia live in the community and a third in care homes. Family carers remain the cornerstone of care for people with dementia living at home but the older people are the more likely they are to live alone. Given the terminal nature of dementia and the impact on capacity for independent living both individuals and families will need support from health, social care housing and benefits agencies at some stage.
- There are over 820,000 people living with dementia in the UK today, a number forecast to rise to 1.5 million by 2050.
- One in three people aged over 65 will die with a form of dementia
- Only 42% of people with dementia are diagnosed
- The psychological, social and financial impact of dementia is considerable on those affected as well as society at large. Dementia costs the UK economy £23 billion per year of which 55% is borne by individuals and families.
- Services remain uneven, some are excellent but others, especially in hospital, are much more variable.
- Just 2.5% of the government’s medical research budget is spent on dementia research compared to 25% on cancer research. A large proportion of research into dementia is the search for a cure.
What we think
Increased demands for support of people with dementia and their carers call for different, innovative and more cost effective ways of responding to their needs which must involve those most affected. Whilst statutory, voluntary and commercial agencies are largely focused on meeting instrumental activities of daily living, they do not give meaning and purpose to life. Creative arts are a medium for self expression and social engagement enabling individuals and carers to remain active members of their families and communities. Whilst we can see the impact of creative arts, more robust research studies are required to improve the evidence base for policy and practice.
The major thrust of government policy in dementia is set out in Living well with dementia, the National Dementia Strategy for England (2009)The document provides a detailed improvement framework to guide health, social care and housing services in a programme of work aimed at raising awareness of dementia, facilitating early diagnosis, and improving standards of care.
Whilst there is evidence of better public and professional understanding of dementia, of increased rates of diagnosis and improved provision for individuals and families, dementia remains, in the words of David Cameron, a ‘national crisis’. In March 2012, the government launched The Prime Minister’s Challenge: a programme of government commitments to improve health and care; create dementia-friendly communities that understand how to help and better research.
Alongside these policies, the government is pressing for a reduction in the use of anti psychotics having commissioned Professor Sube Banerjee to carry out a study of their use amongst people with dementia. His report Time for Action (2011) concluded that whilst up to 36,000 people may derive some benefit from anti psychoticst there are many negative effects directly attributable to the use of antipsychotic medication including1,800 deaths, and an additional 1,620 cerebrovascular adverse events such as strokes, and transient ischaemic attacks (TIAs or smaller strokes). Crucially the report suggests the use of anti psychotics would be unnecessary if appropriate support were available and non pharmacological approaches are recommended as ‘first order’ interventions.
What we think
Creative arts are already contributing to raising awareness of dementia and the development of dementia friendly communities. The role of artists, arts organisations and cultural institutions in helping to generate positive images of people enjoying themselves in many ways is hugely important. Whether local small scale Alzheimer’s Societies Singing for the Brain groups or the InMind coffee and conversations at the prestigious Royal Academy of Arts, these activities along with gallery visits, productions, performances and workshops challenge the social exclusion of people with dementia, and show that cognitive disability is no barrier to social and civic engagement. If we are to use creative arts as one of the ‘first order’ interventions in place of anti psychotics, resources need to be made available to skill up staff and artists using models developed for example by Suffolk Artlink teaching Creative Caring in care homes.
Much what we hear and read in everyday life about dementia remains negative and those identified as having dementia stigmatised through a disqualification process whereby a ‘normal’ person is reduced to a person with whom something is wrong. Anne Basting Davis, in her excellent book, Forget Memory (2009) refers to Tightly Told Tragedies of Dementia and points out how the media reinforce and reproduce stigma by labelling people with dementia as ‘sufferers’ and referring to dementia as ‘a death sentence’ . Such perceptions are shaped by the biomedical construction of dementia as a disease state that ‘we can do nothing about’ reflecting pessimism about prognosis and restricting access to therapeutic interventions and rehabilitation
Yet over the past decade changes in the way dementia is understood and people with dementia treated have taken place. A growing number of policy makers, professionals and practitioners now view dementia as a disability, whereby ‘there are things that can be done’ to compensate for difficulties, maintain skills, remove barriers and improve quality of life.
The seminal ideas of Tom Kitwood, who emphasised the importance of ‘seeing the PERSON with dementia’ in terms of the person ‘comes first’, ushered person centred care into practice. Kitwood challenged the ‘standard paradigm’ of dementia being defined in terms of the degree of loss of brain cortex. According to his Enriched Model, dementia is only one part of a person; other factors including neurological impairment, physical health, individual biography, personality and social and physical environments influence how an individual mediates their experience.
For Kitwood then it is important that we recognise and respect the essential humanity of the PERSON with dementia or their personhood, despite their mental decline and maximise well being by attending to other dimensions that affect a person’s quality of life and reducing the impact of ill being when personhood is undermined and individual needs ignored.
More recently researchers and others recognising the limitations of personhood have turned their attention to its political context, fixing on citizenship and the promotion of the human rights of people with dementia
What we think
Communicating and building relationships with people with dementia through the medium of music, visual art, poetry etc is a powerful way of acknowledging personhood. Seeing dementia as a disability means we can organise what we do to take account of memory impairment sensory and spatial difficulties, the social milieu and the built environment. Yet despite the improvements in attitudes and practice ushered in by person centred care practice and the citizenship movement stigma remains a major barrier. If there is one thing we must continue to address it is the prejudices that pile up one on top of another: old age, mental illness, and for some people, race and cultural difference so we have to help people with dementia and their carers speak out about the fact that they are still there as vibrant creative human beings.
The effects of current medications used to treat dementia are modest, at best, resulting in continuing anguish for the person with dementia. Some 80% of individuals affected have non cognitive or behavioural and psychological symptoms of dementia. Agitation, anxiety, aggression and mood disorders are common responses to problems of communication, to boredom and loneliness as well as depression and fear. Family members and carers report finding these symptoms very hard to manage with positive outcomes for the person cared for.
Hence the development of the notion of ‘treating’ people with dementia ‘non pharmacologically’. Under this conceptual umbrella are gathered approaches and therapies including
- Compensating for disabilities associated with declining cognitive function through building design and technology
- Offering psychosocial interventions geared to maintenance of cognitive abilities, skills and interests
- Using sensory therapeutic activities to stimulate or reduce stress
- Improving health and well being through the (creative) arts.
Creative arts are now being driven forward not only because of demand and government policy but because they seem ‘to work’ where drugs fail. Neuroscience is advancing our knowledge about the way continues to function when stimulated so that many memories, skills and sensory abilities can be accessed. Participation in music, singing, craft, dance and other arts; for a large number of people with dementia is clearly beneficial and the opportunities to get involved as CDAN projects and many others show is increasing all the time.