'Getting dementia' is something most people fear, but new JRF research aims to offer a more positive portrayal of what life could be like for people with dementia.
"Having a senior moment"
"Not quite all there"
"Non compos mentis..."
These phrases will undoubtedly be offensive to people who have a diagnosis of dementia – but which of us hasn't used them unthinkingly and in a jokey kind of way? Perhaps this is because, for most of us, 'getting dementia' is our very worst fear. In our newspapers and on our televisions we see images of frail, elderly people, seemingly powerless and unengaged. We use or hear the language of burdens and 'demographic time-bombs', and we describe those who live with conditions such as dementia as 'sufferers'.
Our fears, both as individuals and as a society, are made worse by our knowledge that people with dementia often have a poor quality of life, that their numbers are rising significantly, and that more will live in their own homes for longer. This raises questions about how all of us – families, local communities, policy-makers, practitioners and society as a whole – need to adjust. The challenge for those committed to human rights for all is also, crucially, about finding ways to help individuals with dementia to live well, and to retain the fullest possible role as citizens in our society. What's so positive is that there are already many examples of people emphasising how they are living with (rather than dying of) dementia – people like author Terry Pratchett, and like Agnes Houston and her fellow members at the Scottish Dementia Working Group.
For the next year JRF will be supporting two very specific and practical projects through our new programme Dementia and Society. Both projects aim to offer a more positive portrayal of what life could be like for people living with dementia, and how they themselves can play a central role in shaping that, either individually or collectively.
Our national project, DEEP (Dementia Engagement and Empowerment Project), will investigate how people with dementia across the UK are currently engaged collectively, and what they would like to do in the future. This work will be carried out by the Mental Health Foundation, in partnership with Innovations in Dementia and Alzheimer's Society. The project is currently looking for any examples of collective engagement and/or individual activism by people living with dementia – if you have any, please do help with the survey. This runs until 31 October and can be completed online or downloaded from www.mentalhealth.org.uk/deep.
Our local York project, 'Dementia without walls', aims to identify the factors that determine whether York is, or can become, a dementia-friendly city. Drawing on the engagement of local people who are living with dementia, it will make recommendations on how to overcome barriers to achieving this. The project seeks to raise the aspirations of people with dementia and their carers, as well as those of providers and commissioners, about what services in York could become, by identifying practical exemplars locally, nationally and internationally. This work is being led by the AESOP Consortium (Janet Crampton, Janet Dean and Ruth Eley), who can be contacted on 07540 503030 or by email firstname.lastname@example.org.