When Daniel, a 64-year-old with Down's syndrome, began getting irritable and depressed several years ago, his GP and family associated his behavioural changes with his learning disability.
The GP referred Daniel, who lives at home with his parents in their late eighties, to the community learning disabilities team for assessment and support, but he did not meet their support criteria. A referral to a psychogeriatrician was also unsuccessful because Daniel was not old enough.
In fact, it was only when the GP mentioned the case to a colleague who had experience of Down's and dementia that the doctor considered the latter might be an issue. He referred Daniel to a memory clinic, which led to a diagnosis of a dementia. Despite the early diagnostic overshadowing - when Daniels' symptoms were attributed to his learning disability - the right support is now in place, enabling Daniel to continue living at home, as he wishes.
Daniel is just one of around 850,000 people estimated to be living with dementia in the UK. This figure could increase to over one million by 2025. While the public perception of dementia is that it is associated with the ageing population, Daniel's story reflects the fact that a growing group of younger people are living with dementia.
Welcome advances in medicine enable people with Down's syndrome and other disabilities to live longer, hence more people with existing support needs are also starting to experience the issues associated with old age. A diagnosis of dementia alongside an existing disability also brings new challenges for commissioners and providers; they are grappling to support people with increasingly complex needs against diminishing financial resources. Estimates suggest there are around 40,000 people living with dementia aged under 65, many of whom will share a disability alongside a diagnosis of dementia .
In response to such concerns, a strategic partnership of voluntary sector organisations is collaborating on how to promote individual's rights, greater inclusion and participation among different groups affected by dementia. Our new publication, Dementia, equity and rights, examines the individuality of people with dementia, their unique personality and life experiences and how these should shape responses. Equity and rights are issues that have rarely been applied in approaches to dementia support. Society's response has, arguably, been dominated by medicalised approaches that focus on degeneration and decline at the expense of what people can achieve.
There is growing recognition of the need to apply the social model of disability to dementia. Aligning dementia and disability seeks to harness the social model as a lever for challenging society with the aim of maximising rights and enabling full participation on an equal basis to other citizens. The approach places the emphasis on society removing barriers to inclusion, rather than people with dementia needing to adapt to the care that is already on offer.
To see these principles in practice, you need only look at moves to create dementia friendly communities. These local communities bring together businesses, public services and citizens to ensure people with dementia feel understood and are able to contribute to their community.
Such developments echo work by the Mental Health Foundation which has called for a broader view to be opened up:
Dementia, as a disability, also provides an alternative framework to rethink and reimagine dementia as a rights, social justice and equality issue. This, in turn, opens up the policy focus beyond the narrow health and social care framework.
A strong focus on equity and rights challenges everyone to think about communities living well with dementia. This focus recognises different needs, individuals' rights and, above all, choices.
For Daniel, a rights based approach should bring an end to being excluded from dementia services on the basis of age. Residential care will no longer be an immediate default option for many disabled people with dementia. Instead as Daniel grows older, he is in control, shaping his own life and perhaps challenging preconceptions about what living well with Downs syndrome and dementia really means.
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