Juniper West, NSFT’s Research Lead for Older People’s Services and Professor Chris Fox from the University of Exeter, are co-leading the project.
Juniper West said: “Receiving a diagnosis of dementia is life-changing for the person and their family and friends. Stigma can make adjusting to the diagnosis frightening and isolating. Where people live, the type of dementia they have, or lack of opportunities to meet peers, can all affect the quality of support post-diagnosis.”
Professor Chris Fox said: “It may seem puzzling to talk about ‘recovery’ in dementia, when dementia is a progressive illness. However, recovery in mental health refers to ‘recovering a life after diagnosis’. This 'personal recovery' is about managing difficult symptoms whilst living a meaningful, enjoyable life.
“It is very important we prepare for the future – data from just before the pandemic showed there is wide variation in what post-diagnostic support was available for people with dementia across the UK. If there are no engagement opportunities, people with dementia tend to retreat.
“Taking ownership, learning about the illness and how you can self-manage can help people to live with dementia. Initiatives such as social prescribing, carer support and perhaps Recovery Colleges, may help people to get the support they need.
“There is interesting evidence that being isolated and lonely makes your cognition worse. More social contact is shown to improve outcomes for people with dementia and carers.”
The People, Participation and Inclusion (PPI) group will be central to all the research activities in the study. Members will include both people with dementia who have experience of working with staff to produce a Recovery College dementia course, and people with dementia who have attended a course from across the UK.
The findings from the study will be used to produce guidance, learning and organise resources for UK Recovery Colleges. These can then be adapted to suit local dementia courses. We will involve people with dementia, their families and staff in creating these resources.