People with dementia are living longer in their homes due to changes in the way social care is delivered and a recognition that most people wish to remain at home. However, financial constraints on services mean that many people with dementia and their families struggle to get the care and support that they need. People with dementia and their carers often become increasingly isolated as the condition progresses and their social networks diminish.
Services that offer opportunities for social activity and to get out and about are, therefore, very important for families with dementia. Volunteers can and do play a vital role within services of this type but little is known about the particular roles and experiences of volunteers working with people with dementia.
The ASUME volunteering dementia project involved researchers from the Faculty of Social Sciences at the University of Stirling who reviewed published research, analysed secondary data collected within large-scale health surveys and undertook new data collection through interviews and focus groups. This range of data collection methods enabled us to create a rich understanding of volunteering with people with dementia.
The project engaged directly with volunteer managers, volunteers, people with dementia and their carers living in Stirlingshire and Cumbria to explore the experiences of these different groups. We wanted to learn more about what volunteers contribute to the lives of people with dementia and their carers and how organisations can better recruit and support volunteers.
We met many enthusiastic and committed volunteers, often drawn to volunteering through their own experiences of dementia among family and friends, who brought a wide range of skills and knowledge to projects supporting people with dementia.
My mother had recently died and she had dementia so I was quite used to what would be going on. I said, oh well I’ve had plenty practice at that; I’ll come and see what happens. (Female volunteer, Cumbria)
Volunteers often drew upon their past experiences and hobbies to enrich their role as volunteers; poets, singers, historians, librarians, nurses, social workers and engineers all brought different skills to the volunteering role. Volunteers wanted to help, to make a contribution to society.
I think it was just a natural progression of being in the environment and also because of my background as a nurse and perhaps as somebody who had been involved in catering and other things through my life I just sort of merged into becoming a volunteer. (Female volunteer, Cumbria)
We found volunteers working in community and care settings and supporting people within their own homes. Volunteers took on different roles within these different settings. Volunteers often provided an important link for people with dementia with the local community and facilitated their participation in social events.
Many reported good experiences of support and management in their roles, however, a need was identified for better training about dementia and more support for volunteers who can find themselves in emotionally demanding roles.
I think if somebody’s starting out as a volunteer it is important that you have a named person who you can go to and also that there is a sort of developing programme of information going on. It’s not really fair on somebody to just give them the basic training course and then they meet somebody who has particular needs and the person who’s befriending them, you know, hasn’t come across that before. (Female volunteer, Stirlingshire)
These are only some of the themes from the project, led by Dr Vikki McCall at the University of Stirling. This project has been driven by the objective of creating a useful, applicable set of insights for volunteering in dementia care. The ultimate aim has been to develop guidance for organisations involved with volunteers, people living with dementia, and carers. To view this visit: www.asume.co.uk
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