Thirteen participants had experience of dementia among family and close friends and this was described as a reason for getting involved with volunteering in dementia care. Our secondary data analysis in particular noted the importance of family in the lives of those living with dementia. Secondary data analysis showed that among people with care needs, about 12% of them received care or support from volunteers. In this sense, volunteer care plays a role as important as care from siblings or other relatives.
Knowledge of dementia and a wish to help this group of people often motivated people to take on a volunteering role and guided them towards roles involving people with dementia. However, only a few participants described themselves as former carers. Those who did, also saw this as a reason to take on a volunteering role. For those with direct experience of caring for a person with dementia there was recognition of the need to take some time following bereavement before taking on a volunteering role.
Volunteering in dementia care was very much about supporting both the carers and the person with dementia. The experience people had with dementia reinforced the perception that the carers’ role is extremely challenging and supporting this was a clear attraction into volunteering in this area.
Some volunteers experienced negative responses from wider family. There was the perception that volunteering activities could also instigate feelings of guilt in others. These examples were rare, however, and families were often appreciative of the efforts of volunteers and were indeed a factor that attracted volunteers into the area of dementia care. Volunteers were much more likely to perceive themselves being able to support families through their activities.
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)
My father died about four years ago now. I don’t think I would have wanted to work with people with dementia immediately and solely. I mean, obviously I did, it was in my job but I think after a little bit of time lapsing it was something that I really did want to do. So yes, it gave me an interest and an understanding and how hard it is for carers in particular. (Female volunteer, Cumbria)
So I’ve arrived a couple of times, and I can see the resentment in their faces. What are you doing? Why are you calling? Why are you bothering? It’s a guilt factor, that you’re going there more often than they are. They resent that. They don’t look at it that it’s beneficial for the person. So therefore you’ve got to be sensitive and step back and say oh, it’s all right, I’ll come another day, and walk away with your tail between your legs and think, oh, done it again (Male volunteer, Stirling).