Creating space for citizenship : the impact of group structure on validating the voices of people with dementia

Abstract

Recently, there has been increasing attention given to finding ways to help people diagnosed with dementia “live well” with their condition. Frequently however, the attention has been placed on the family care partner as the foundation for creating a context that supports the person with dementia to live well. A recent participatory action research (PAR) study highlighted the importance of beginning to challenge some of the assumptions around how best to include family, especially within a context of supporting citizenship. Three advisory groups consisting of 20 people with dementia, 16 care partners, and 3 service providers, were set up in three locations across Canada to help develop a self-management program for people with dementia. The hubs met monthly for up to two years. One of the topics that emerged as extremely important to consider in the structuring of the program revolved around whether or not these groups should be segregated to include only people with dementia. A thematic analysis of these ongoing discussions coalesced around five inter-related themes: creating safe spaces; maintaining voice and being heard; managing the balancing act; and the importance of solidarity. Underpinning these discussions was the fifth theme, recognition that ‘one size doesn’t fit all’. Overall an important finding was that the presence of family carepartners could have unintended consequences in relation to creating the space for active citizenship to occur in small groups of people with dementia although it could also offer some opportunities. The involvement of care partners in groups with people with dementia is clearly one that is complex without an obvious answer and dependent on a variety of factors to inform a solution, which can and should be questioned and revisited.