The Contribution of Physical Activity to Social Connectivity and Wellbeing in Older Adults Living with Dementia

Lead Research Organisation: University of Hertfordshire
Department Name: School of Life and Medical Sciences

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.

Publications

10 25 50
 
Description The objectives of the study were to provide:
• mapping of the existing provision of physical activity programmes in Dementia Friendly Communities (DFCs) across England
• an overview of how people affected by dementia can maintain and take up physical activity and if this is a platform for other community-oriented work
• evidence of what will enable the delivery of physical activity programmes for people living with dementia
• a report on the experiences and subjective wellbeing of adults living with dementia who participate in physical activity programmes and how effectiveness can be measured
• guidance on activities that benefit people affected by dementia from different cultural groups and at different points of the disease trajectory.
• best practice recommendations, particularly to ensure that programmes and services are equitable, addressing stigma, enabling choice, and promoting social connectivity for older adults living with dementia.

We undertook the mapping exercise and also an additional exercise to map access to green spaces which are appropriate for physical activity for people living with dementia.

We worked with the borough council and local organisations in one case study site to produce a booklet detailing the range of dementia-friendly physical activities offered in and around the borough. Dissemination of the resource across a range of service providers and organisations, such as social prescribers and health professionals, will raise awareness of the physical activities to which people affected by dementia can be referred.

Attempts to network with different cultural groups were less successful as recruitment strategies were made more difficult by the need to use online methods rather in-person during the pandemic. The key areas from the project that remain unresolved include understanding the ways in which providers have successfully engaged with underrepresented groups, particularly LGBTQ+. Few organisations taking part in the interviews were able to provide examples of engagement with underrepresented groups and the perceived stigma associated with dementia in some cultures was often cited as a barrier to engagement.
Exploitation Route It is expected that this resource produced will be of benefit to other district and borough councils beyond our own case studies as a template for their own mapping and dissemination of activities, and the team have been in contact with other Dementia Friendly Communities to share learning and best practice.

The findings highlight a relative lack of examples from mainstream organisations/settings of how they work to support people from underrepresented groups to be physically active, and also at different stages of the dementia journey. This project draws attention to this relative gap in understanding and so makes recommendations for this as a future area of research and attention by policy-makers and providers.
Sectors Communities and Social Services/Policy,Healthcare,Leisure Activities, including Sports, Recreation and Tourism

 
Description Development and sharing of a booklet outlining the provision of physical activity for people living with dementia.
First Year Of Impact 2022
Sector Communities and Social Services/Policy
Impact Types Societal,Policy & public services

 
Description AS 
Organisation Alzheimer's Society
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Feedback findings to inform strategy
Collaborator Contribution Advising on data collection, analysis, and dissemination of findings
Impact Membership of physical activity advisory group
Start Year 2021
 
Description Golden Memories 
Organisation Watford Football Club Community Sports and Education Trust
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The research team is collaborating with Watford Football Club Community Sports and Education Trust to lead on the research related to their new "Golden Memories" programme. This is a reminiscence programme for people living with dementia.
Collaborator Contribution Watford Football Club Community Sports and Education Trust hosts and leads on the delivery of the "Golden Memories" programme and provides access to the programme participants to the research team.
Impact The Golden Memories programme and preliminary research findings were presented at the International Conference on Sport and Physical Activity for Older Adults. The conference had to be re-scheduled as a 'virtual' conference due to escalating concerns about the Coronavirus, but the resources have been shared, and the conference will either be re-scheduled (depending on the situation with Coronavirus) and/or materials will be uploaded to a bespoke website.
Start Year 2019
 
Description Local Borough Council 
Organisation Stevenage Borough Council
Country United Kingdom 
Sector Public 
PI Contribution The research team were responsible for providing the content and giving guidance on the design of a booklet mapping local dementia friendly activities.
Collaborator Contribution The council were involved in the design and formatting of the booklet, organised an easy-read version of the booklet, provided and distributed hard copies of the booklet, coordinated a press-release and are currently hosting the online versions on the Healthy Stevenage website.
Impact The production of a booklet (hard copy and online) about dementia friendly activities available in Stevenage. https://www.stevenage.gov.uk/leisure-culture-and-wellbeing/making-stevenage-a-dementia-friendly-community
Start Year 2021
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact A six minute pre-recorded summary of the research project was presented at a hybrid format University of Hertfordshire Health and Social Work conference. This provided an opportunity for colleagues across the school of Health and Social Work to ask questions about the research, including where the physical activity booklet will be available in the community.
Year(s) Of Engagement Activity 2022
URL https://www.youtube.com/watch?v=5diKLSC5psA
 
Description Conference presentation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Pike, E. (2020). Invited Speaker. ResHERch: Research trends in female sport. Women and Girls in Sport: Imagine. Believe. Achieve. Sport and Recreation Alliance, UK.
Year(s) Of Engagement Activity 2020
 
Description Conference presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Participated in a panel talk with two organisations about inclusive physical activity. This provided an opportunity to talk to physical activity providers about ways in which activities can be inclusive for people living with dementia.
Year(s) Of Engagement Activity 2022
 
Description Conference presentation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Pike, E. (2020). Invited Speaker. Sport, Ageing and Adaptation. Yokohama Sport Conference, Japan
Year(s) Of Engagement Activity 2020
 
Description Conference presentation 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Mathie, E., Pike, E., Hadley, R., Marks, S., Phillips, R., Cowe, M., Goodman, C. (2021). Physical Activity and Dementia Friendly Communities. British Society of Gerontology.
Year(s) Of Engagement Activity 2021
 
Description Invited speaker - workship 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Pike, E. (2021). Invited Speaker. Physical Activity and Social Connectivity in Older Adults Living with Dementia. Live Longer Better in Hertfordshire. Hertfordshire Sports Partnership Launch Event.
Year(s) Of Engagement Activity 2021
 
Description Invited speaker - workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Project launched at Alzheimer's Society webinar.
Year(s) Of Engagement Activity 2021
 
Description Presentation 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact A 30 minute discussion with people affected by Parkinson's about the research. This prompted many questions about their local town as a dementia friendly community and the services available.
Year(s) Of Engagement Activity 2022