Abstract

This proposal aims to better understand the experiences, benefits, and constraints on provision, of physical activity for adults living with dementia in Dementia Friendly Communities (DFCs) in England. There are approximately 850,000 people living with dementia in the UK and dementia costs the UK 34.7bn p.a., with prevalence and costs predicted to rise. Dementia is understood as a syndrome in which there is deterioration in a person’s memory, thinking, behaviour and/or ability to perform everyday activities. People affected by dementia are identified as having a higher risk of being socially isolated, often do not feel connected with their communities, and feel more lonely than other social groups. This includes people living with dementia and their carers, and is attributed, in part, to the stigma associated with dementia.

There is considerable evidence that physical activity programmes can enable people living with dementia to stay connected with their local communities and achieve improved physical and mental health. However, adults living with dementia have been neglected in analyses of physical activity in later life, and the range of benefits of physical activity programmes are not well understood. In 2019, Sport England produced a Dementia Friendly Sport and Physical Activity Guide which indicates that, while there is evidence of the benefits of physical activity for adults living with dementia, they often do not feel able to participate in physical activity programmes. The reasons are increasingly well understood and include access to transport, facilities that are enabling (signage, availability of helpers, dementia friendly design, ability to accommodate specific physical and cognitive needs) and having confidence that they will not be stigmatised or excluded by staff and members of the public. Improved physical activity programmes have the potential to normalise living with dementia by challenging the stigma of the disease; enabling people affected by dementia to make choices about their lifestyles choice; promoting inclusion and a sense of connection with their communities; and improving the wellbeing of people living with dementia.

England is one of the few countries to have as policy that over half of the population will be living in a DFC by 2020 – a target that is being met. DFCs are collaborations of local people and organisations, often geographically defined, formally recognised as working to a common aim of promoting dementia awareness and inclusion of people affected by dementia. A national evaluation of DFCs identifies that while most DFCs include physical activity programmes, these are often ad hoc and constrained by location, transport infrastructure and people knowing what is available.

The research will focus on how DFCs promote engagement with physical activities. Building on earlier work of the researchers, the project will commence with a survey of up to 50 DFCs from across England to map the range of physical activities organised and facilitated within the DFC, what works, and what are the challenges and barriers. It will follow up with a detailed case study of three DFCs to understand how people affected by dementia are identified within local communities and enabled to access and join physical activity programmes. The research aims to better understand how the changing needs of people affected by dementia are addressed and how physical activities promote inclusion and participation, to inform DFCs of the best ways to incorporate physical activity in their provision. The research will be informed by, and inclusive of, people living with dementia in the design, data collection and dissemination. The research team will publish a report on their findings that will be made publicly available via multiple websites (locally and nationally), and will also test innovative ways to disseminate their findings via activities in local museums and libraries in one DFC and local dementia groups.

Plain English Summary

Around 850,000 people live with dementia in the United Kingdom, and this number is predicted to rise. Dementia is a term for the decline in a person’s memory, thinking, and behaviour. The loss of these abilities can have a severe impact on everyday life. Dementia often increases feelings of isolation and loneliness.

England is one of the first countries to encourage the creation of Dementia Friendly Communities (DFCs) as part of national policy. DFCs support local communities to engage with people affected by dementia. This helps people to live independently and can improve quality of life.

Physical activity programmes can be an important part of these communities. Benefits include improving wellbeing, reducing loneliness and building connections with the local community. Yet, the impact of physical activity programmes on the experience of people living with dementia, is often overlooked.