creating space for citizenship : the impact of group structure on validating the voices of people with dementia
date
2016-05author
wiersma, elaine c.
o'connor, deborah l.
loiselle, lisa
hickman, kathy
heibein, bill
hounam, brenda
mann, jim
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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.