School of Health in Social Science

The Smarties

The Smarties are a group of lived experience researchers. The group was set up as part of Rose Vincent's doctoral research. Over 8 months (in 2021-2022) The Smarties met to co-produce a piece of research into volunteering in young onset dementia for Rose’s PhD.

The group developed a great working relationship together, both those who are living with dementia and those who are not. The work was based on lived experience and evidence from the Dementia Diaries.

Why we worked in this way:
  • Fulfilling needs in ourselves and others.
  • Taking part in research helps keep our brains active and gives us a sense of purpose.
  • We do research for a better future for others.
  • We want to help other people with dementia to not face the same difficulties we have.
  • It is an enjoyable and insightful experience to learn from others.
  • Hopefully encourage other people with dementia to take part in research.
  • “Nothing about us, without us”
How did our involvement improve the research?
  • As people with dementia, we’ve got lived experience so that we had a unique intake into how it is to live with dementia.
  • We could look at the data from people living with dementia and associate with it easily and understand where people were coming from, probably better than academics in a way.
  • We brought our wide and varied life experiences to this research, which covered pretty much every aspect of social life and living and included experiences of volunteering as someone living with dementia.
  • We brought enthusiasm, optimism, realism and a determination to try to make a difference.
How did we do it?
  • We worked in partnership to decide the structure and timings for our sessions.
  • Through group discussion we decided the focus of the research would be on ‘volunteering with dementia’.
  • We developed a sampling strategy to help us identify which of the Dementia Diaries we should look at.
  • Excerpts from the Dementia Diaries were sent to the group by post each session.
  • During the sessions, we voted on the selection and narrowed them down to three or four that we really focused on. The voting was personal and subjective, but the decision was group and collective, so it covered everything.
  • We then read the diary excerpts and listened to the actual authors sharing their own diary.
  • Then we asked ourselves two questions to respond to ‘How would I feel if I was this person?’ and ‘What stands out in particular, or what is of particular interest or note?’
  • We shared our thoughts through individual comments and group discussion, and these were collated.
  • We then re-visited our initial analysis comments to decide which were the most important and why - through individual and group discussion we developed these into our themes.    
Our outputs
  • Our findings on volunteering with dementia are currently being finalised and will be shared in due course. We hope these findings will benefit people living with dementia who are interested in volunteering and volunteer organisations.
  • We have developed our 'The Smarties guide to co-production' which gives you our advice on how best to involve people living with dementia in research. You can access the guide here: 
  • We have also recorded a short accompanying video in which we raise some of our key points about co-producing research with people living with dementia. You can waitch the video below:

 

 

 

This is an Alzheimer’s Society funded project, based in the Edinburgh Centre for Research on the Experience of Dementia and the Alzheimer Scotland Dementia Research Centre.