Collective strength

Abstract

Current theories of social power suggest that development of a shared social identity can create the possibility of bringing about political and attitudinal change as well as benefiting individual psychological well-being. This exploratory, qualitative, internet-based study extending over two years explored the impact of developing a shared social identity among a group of people with early-stage dementia. We investigated the experience of belonging to the self-help network Dementia Advocacy and Support International (DASNI), and its effect on self-concept and adjustment, from the perspective of DASNI members in order to understand more about the factors that promote self-help, and the effects of engaging in self-help, mutual support and advocacy in this context. Seven active members of DASNI with a dementia diagnosis volunteered to participate. Interviews were conducted via email, and Interpretative Phenomenological Analysis (IPA) was used to develop a thematic account. The challenges engendered by the onset of dementia were reflected in descriptions of loss, struggle and uncertainty. Participating in DASNI, in contrast, engendered a sense of collective strength and having something valuable to contribute, and made it possible to discover that there can be life after diagnosis. Belonging to DASNI helped to counteract the challenges to self and identity posed by developing dementia, thus significantly affecting the experience of living with dementia, and creating the possibility of effecting social change. Gradually, people in the mild to moderate stages of dementia are developing a `voice' and rejecting the passive patient role. One important element in this process is the way in which people with dementia band together to help themselves and one another, and influence social attitudes, through mutual support and collaborative advocacy. The development of DASNI, consistent with recent theoretical developments in conceptualizing processes of social power and influence, offers significant potential for change.

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

“…Söderhamn et al 2014Clare et al 2008Leung et al 2015;Toms et al 2015;Keyes et al 2016 Planning ahead for future impact of the condition with the aim of increased sense of control. Robinson et al 2015;Grand et al 2011;SCIE, 2015; Alzheimer's Association; Hellström & Torres, 2016 Adapting activity to capability Adapting capability to activity (and goals of activities), in order to feel that activities are manageable and successful.…”

Through the eyes of others – the social experiences of people with dementia: a systematic literature review and synthesis

“…In some studies, people described feeling that they were appreciated as 'A valuable contributing member of society' (Clare et al, 2008, pp.19) for the contributions they made through dementia-related activism (Bartlett, 2014a;Clare et al, 2008). Others highlighted that their dignity was preserved when they were 'Feeling appreciated and acknowledged…' for their contributions within their family network (Tranvåg et al, 2015, pp.582).…”

“…People described feeling that they had been "socially demoted" (Beard andFox, 2008, pp.1517) and were now treated like second-class citizens (Bartlett, 2014a). They felt that they no longer had equal power within their relationships (Harris and Sterrin, 1999), were looked down upon (Mok et al, 2007), and lacked dignity and respect from others (Barlett, 2014a; Clare et al, 2008). This change in social status was reported by two studies within a theme of loss (Langdon et al, 2007;Mok et al, 2007) Taken from the theme: Dialectical tension between agency and objectification (MacQuarrie, 2005, pp.432) In a study of activism, Bartlett (2014a) found that perceived social relegation motivated some to take action to improve the position of people with dementia in society.…”

“…In a contrasting set of findings, people with dementia experienced a trivialization of the difficulties associated with their condition, as if others did not even believe that they had dementia (Bartlett, 2014b;Clare et al, 2008;Harris, 2004;O'Connor et al, 2010;Orulv, 2012;Pipon-Young et al, 2012). Taken from the theme: Being taken seriously -"it's not sometimers, it's ALLTIMERS!"…”

Darkness into light? Identification with the crowd at a suicide prevention fundraiser promotes well‐being amongst participants

“…Haslam and colleagues (2009) articulate the psychological and physical health benefits of these memberships as being a form of 'social cure'. Research demonstrating the benefits of social identification extends from reducing depression (Cruwys, South, Greenaway, & Haslam, 2014), protecting against stress (Gallagher, Meaney, & Muldoon, 2014;Häusser, Kattenstroth, van Dick, & Mojzisch, 2012), improving health behaviours , and dealing with dementia, brain injury and strokes (Clare, Rowlands, & Quin, 2008;Haslam et al, 2008;Walsh, Muldoon, Gallagher, & Fortune, 2015). Notably, social identification has also been shown to aid recovery from a wide range of traumatic experiences including the Sivas Massacre in Turkey (Yildiz & Verkuyten, 2011), political violence in Northern Ireland (Muldoon & Downes, 2007) and homelessness (Thomas, Gray, McGinty, & Ebringer, 2011).…”