Dementia has been identified as the biggest health and social care challenge facing UK society, due to an ageing population. At the 2011 census, 16 per cent of the UK population were aged 65 and over and 14 per cent of which were aged 85 and over (the population group that is growing fastest).
As our understanding of the condition increases, so should our awareness of the different struggles faced by Black and Minority Ethnic (BME) people living with dementia, as well as issues surrounding visibility and social inclusion of people diagnosed with the condition.
BME people with dementia
Migration patterns from the 1950 and 1960s mean that the UK is now home to an ageing BME population and there are currently 25,000 people with dementia from BME communities in England and Wales. This figure is predicted to rise to 50,000 by 2026 and 172,000 by 2051.
However, there is little knowledge of the experiences of BME people with dementia, which in the UK includes people from a range of ethnic backgrounds. The National Dementia Strategy states that health and social care services should take account of BME dementia needs. However, service providers report challenges in including BME people, and there is evidence that people from BME backgrounds are currently being ‘failed’ by the system.
Additionally, among the UK’s BME population there are lower levels of awareness of dementia and high levels of stigma associated with the condition. And people from BME backgrounds are underrepresented in dementia services and access services later.
The knowledge gap
There remains very little knowledge and research on BME communities and dementia. It has been suggested that there is a need to gather more information and engage further with BME communities in, to fill gaps in knowledge about their service needs and successfully implement the National Dementia Strategy. However, our view is that if we listen to the least heard members of society and ensure that services are accessible and appropriate for them, then this improves the experience for everyone.
The Salford Institute for Dementia
The Salford Institute for Dementia (SID) was established in 2014. SIDs research focuses on the challenges faced by people living with dementia and their supporters and seeks to improve their lives in positive and meaningful ways.
A core theme of the institute is user involvement, which aims to facilitate the meaningful inclusion of people living with dementia in the various activities undertaken at SID. To ensure this, the Institute has a panel of ‘Dementia Associates’ that meet monthly at our purpose built, community driven Dementia Hub. Dementia associates work as ‘co-researchers’ on studies conducted by SID academics. This peer support group has the dual function of facilitating meaningful inclusion in research for people living with dementia, and directing the SID research agenda. This type of social citizenship provides opportunities for engagement in research, aiming to influence policy and practice.
At SID we are currently critically evaluating our user involvement and community peer support service programme. This includes our Dementia Associates Initiative, Music Café, and Gardening Club. Such services are currently under-researched and their impact on well-being and local dementia communities is unknown, so this information will increase our understanding of how we provide dementia specific services and how we access hard to reach demographics, such as those from BME groups.
Putting identity at the centre of improvements to services
To improve services and increase user involvement for people from all backgrounds, we need to focus on better flexibility, outreach services, awareness raising and the profiling of positive stories from people living with dementia themselves. Post-diagnostic support needs better funding, so that all those diagnosed are given support to access to service pathways, and are prevented from feeling isolated once the diagnosis has been given.
One method of implementing these objectives proposed was to incorporate ‘positive-person identity work’ into services, to challenge the loss of identity people have been found to feel as a result of their diagnosis. This would involve developing services that encourage new and positive forms of identity to be formed.
Well established examples include the work of the Scottish Dementia Working Group and the European Working Group of People with Dementia. These groups give people with dementia a public space to debate, discuss and critique the current discourse surrounding dementia in a wide range of forums, offering a level of control over the condition and a new identity as a ‘dementia rights campaigner’.
Through the public awareness work of groups such as the Scottish Dementia Working Group that are led by people with dementia themselves, the visibility and social inclusion of people living with dementia is increasing. This increase can only be a positive force in reducing the stigma around a diagnosis of dementia and encourage people with this diagnosis to become more involvement in their local communities.
The funding of more such services and groups, and the signposting of these groups at some point along the post-diagnosis pathway could have a wide influence on how people with dementia feel and are perceived, and therefore could lead to a plethora of positive well-being outcomes for people living with dementia.