Exploring Identity and Identification in Dementia Advocacy Groups: A Multi-phase Mixed Methods Investigation

Abstract

Background: In recent years, some people with dementia have joined advocacy groups, supporting each other and working collectively to seek change. There are few studies of the experiences of advocacy group members, and no standalone studies of advocacy group facilitators. Methods: A multi-phase mixed methods approach was used to investigate the experiences of people with dementia involved in advocacy groups. The foundation phase consisted of a systematic review of dementia advocacy research. This was followed by a convergent phase, consisting of a quantitative and a qualitative strand. The quantitative strand was a cross-sectional survey (N=44) of dementia advocacy group members, investigating associations of both involvement in advocacy and facilitation style with ratings of social identification, internalised shame, quality of life and depression. The first qualitative strand consisted of semi-structured interviews with a sub-sample of eight survey respondents and explored participants’ experiences of group membership, focusing on social identity, stigma, and mental health. A sequential phase followed; this was a further qualitative strand comprising semi-structured interviews with eight dementia advocacy group facilitators. Results: Systematic searches identified twelve studies of dementia advocacy, of which four focused on groups. Findings suggested that advocates were motivated to challenge injustice and that involvement affected identities and networks. In the convergent phase, the Survey established significant associations between involvement in advocacy-related activity and social identification, and between group facilitation style and social identification. The Group Member Interviews illustrated how depth of involvement in advocacy differed between individuals, with those most involved offering the clearest articulation of social identification with group. Finally, in the sequential phase, the Facilitator Interviews illustrated facilitators’ non-directive style, underpinned by an ethos of valuing the contribution of people with dementia, which encouraged social identification amongst group members. Conclusions: Members of dementia advocacy groups experienced high levels of social identification with their groups, which was strongest in members most involved in advocacy. Social identification is also associated with a member-led facilitation style. The full potential of dementia advocacy groups remains untapped. An expansion in group numbers would benefit new members through the impact of social identification and people with dementia more broadly through challenging societal stereotypes.