The importance of including the experiences of people living with dementia has been historically slower than including professionals supporting older people, family members and older people themselves. Yet 1 in 3 people will experience dementia, either by receiving a diagnosis of the condition or knowing someone else with the diagnosis. Progress since the 1980s has been rapid in terms of volume of research, sources of funding and increasing inter-disciplinary interest in dementia studies. Social Science has been slower as a discipline (Innes 2009) to actively engage with dementia and to contribute to the more established clinical and biomedical understandings of dementia. Yet Social Science, and critical social gerontology, has much to offer to understandings of dementia, and what this means for both policy directives and care practices that shape the context of lived experiences of dementia. Including people living with dementia in research as participants with stories and experiences to share has become accepted for some time as good practice in the dementia field (Goldsmith 1997, Wilkinson (ed) 2002).
More recently the importance of involvement in research in a variety of ways, such as advisors to funded projects, co-presenters and co-producers of knowledge to partners in the research process from initial conceptualization of research problems and questions to explore through to the production of outcomes to influence policy and practice (e.g., Innes, Calvert and Bowker 2020). This thematic area of work within the Gilbrea Centre encompasses all aspect of social inclusion of people living with dementia, their care partners and supporters and actively engages with a process of how to best support improvements and achieve social change to promote both dementia inclusive practices which aligns to the World Health Organizations overarching call for age-friendly environments.
Our Dementia SHARE group exemplifies our approach to engaging older people, including those with dementia, in shaping the future direction of research hosted within the Gilbrea Centre. For example, members of the Dementia Share Group have co-designed a study focusing on nature-based activities that will commence in September 2023. Ongoing projects that colleagues in the Gilbrea Centre are working on include: an exploration of outdoor based support for people living with dementia, a project focusing on Black Canadians experiences of Dementia (https://mira.mcmaster.ca/research/research-projects/labarge-mobility-grants/catalyst-grants/the-experiences-of-black-canadians-living-with-dementia-in-the-greater-toronto-and-hamilton-area-and-their-care-partners-in-providing-care) led by Dr Ingrid Waldron; a CIHR study entitled, Multigenerational caregiving at home for a relative with dementia amidst COVID-19: A qualitative multiple case study of the new immigrant South Asian experience led by associate member Dr Pamela Baxter, and Innes, Dal-Bello-Haas and Dupuis Nature-based pilot project for older adults living with dementia and their care partners supported via Gilbrea Chair and MIRA post-doc funding . National work includes working within the RaDAR Team led from the University of Saskatchewan examining remote and rural dementia care, and International work with INTERDEM examining psychosocial aspects of dementia; the University of Malta examining hospital based support and in the UK examining the lived experiences of veterans living with dementia in the community (funded by Forces in Mind Trust) and radiographers views and experiences of delivering quality services to people living with dementia (funded by the Royal College of Radiographers).
References: Goldsmith, M. (1997) Hearing the voices of people with dementia. London: Jessica Kingsley; Innes, A. (2009) Dementia Studies: A social science perspective. London: Sage.; Innes, A., Calvert, L., and Bowker, G. (2020) Dementia the basics. London: Routledge; Wilkinson, H. (ed) (2001) Perspectives of People Living with Dementia. London: Jessica Kingsley; World Health Organisation (2002) Active Aging: A Policy Framework