The Smarties are a co-production research team who came together in 2021 as part of Rose Vincent’s PhD, which was funded by Alzheimer’s Society (additional funds provided by the SDRC ECR resource fund). We were motivated to conduct research which can improve experiences for people diagnosed with young onset dementia, and to tackle the stigma and discrimination that people can face.
Our Co-Produced Study
Drawing on our individual and collective experiences (from our professional careers, personal experiences and lived experience of dementia) we conducted a research study to explore volunteering for people living with young onset dementia. We wanted to do this research because we know that many people with young onset dementia leave paid employment after diagnosis, and that some people will then go onto volunteer (including in our team). However, most of the literature that discusses volunteering and dementia positions people living with dementia as being supported by volunteers, rather than volunteers themselves. So, we wanted to explore what the benefits to volunteering were, the barriers, and what could support people to volunteer if they choose to.
To conduct the research, we used a resource called the Dementia Diaries (see https://dementiadiaries.org/) which brings together a collection of audio and visual diaries recorded by people living with dementia. Diary content is decided upon by the diarists, so the diaries provide a window into the day-to-day lives of people living with dementia. Importantly, they demonstrate the diversity of experiences and interests of the diarists.
We analysed 13 of the diaries together, developing a novel method of data analysis which we have called Thematic Co-Analysis. We wrote more about this in a journal paper, that you can read here (Vincent et al. 2026).
What We Found Out
We generated three themes which can support the involvement of people living with young onset dementia in volunteering. The themes highlight the importance of valuing each stage of a volunteer’s life; including their past, their present and their future:
- Firstly, it is important to value the volunteer’s past. This means recognising that they bring a set of prior skills to their volunteering which can be drawn on and developed in the role.
- Volunteer coordinators should also value the volunteer’s present, which means recognising the benefits of volunteering alongside an awareness of any potential risks.
- Finally, valuing the volunteer’s future encourages a recognition of what volunteers can achieve when provided with opportunities to learn new skills and grow in a role. This theme encourages us to take a wider look at the social structures and practices which can create barriers to volunteering.
Why Our Findings Are Important
Our findings highlight that people living with young onset dementia can experience many benefits from volunteering, it can be a way for them to engage in personally meaningful activity and active citizenship. Yet, as we expected there are some significant barriers. Our findings can help us to navigate these barriers and address the gaps in our understanding about volunteering with dementia. As the findings were generated with people with lived experience of dementia, they are practically focussed, providing clear guidance and a framework to support the involvement of people living with dementia in volunteering roles.
For more information, please watch these animations which explain our research approach (click here) and provide a summary of our findings (click here).
We also generated a guide for conducting co-produced research with people living with dementia. The guide brings together our top tips for meaningful co-production, and we are excited to share and discuss the guide in more detail in part two of our blog…
With thanks to The Smarties team: Irene Donaldson, Julie Hayden, Gerry King, Chris Maddocks, Keith Oliver, Martin Robertson, Rosie Ashworth and Rose Vincent. For more information about this research, please contact Rose Vincent at rose.vincent@nhs.scot.
Reference
Vincent, R. E., Ashworth, R., Donaldson, I., Hayden, J., King, G., Maddocks, C., Oliver, K., Robertson, M., Russ, T. C., & Wilkinson, H. (2026). Volunteering as Meaningful Activity for People Living with Young Onset Dementia: a Thematic Co-Analysis. Dementia: The International Journal of Social Research and Practice, 0(0), 1-18. https://doi.org/10.1177/14713012261471610