This study explores the experiences of people affected by dementia within naturalistic care networks, focussing on the moral experience of disability. Two models dominate dementia research: the medical – positioning dementia as cognitive decline resulting from neuropathology; and the social – conceptualising dementia as contextually significant behaviour. A disablement model may be preferable, integrating medical and social understandings within a holistic framework. In lieu of effective therapeutics, dementia is addressed through care, mostly provided by families in non-institutional settings. Such ‘informal’ care comprised this research’s main study site, though some formal actors were involved. Symbolic interactionism guided exploration of the experiences of people affected by dementia through a qualitative design. People with dementia were sampled via non-dementia-related community organisations to avoid over-representing service users. People with dementia ecomapped their care networks to generate ‘network member’ samples. Interviews were conducted with people with dementia and network members. Dementia emerged through interaction as audiences interpreted symbolic indications. Initially, people with dementia managed audience impressions, but as cognition declined, impression management became a collective endeavour. Collective experiences of dementia were most evident within dyads, manifest through dyadic careers marked by role transitions. Wider networks intensified dyadic experiences. Main carers became lynchpins, assuming most responsibilities and sustaining networks. Informal and formal network members positioned themselves as available to lynchpins, but interpersonal and procedural difficulties curtailed access. People with dementia were overshadowed by network complexities. A robust theoretical framework facilitated analysis of an interacted dementia, realised through the patterning of joint action and role negotiation. Based on this analysis, several possibilities for reconceptualising dementia. Stigma should be understood as both felt and enacted, the presentation of selves should be seen as a dyadic concern, in which the lynchpin plays a key role, and the disability movement’s claims regarding dementia and human rights should be questioned.
|Date of Award||2019|
|Supervisor||Nicholas Manning (Supervisor) & Karen Glaser (Supervisor)|