Maintaining identities and life styles : Personal assistance, biographical work and late(st) stage dementia

• Residential care is often considered as the appropriate way to meet the needs of older people with extensive care needs. However, relocation to residential care inevitably entails disruptions for the individual, not only in terms of housing, but also in terms of relationships and the content of everyday life. Is residential care then really the optimal way to care for older people with extensive care needs? The aim of this presentation is to discuss the possibilities of maintaining – and developing - identities and life styles in later life despite extensive care needs by learning from disabilty activism and ideology and the support system of personal assistance. Ideologically, this support, and the related system of direct payment, is based on the idea within disability activism that the right to live like others, included to be self-determinant and autonomous, for (younger) people with extensive disabilities can be realized through personal assistants that serve as the so called assistance users “arms and legs”. Drawing on two case studies the presentation will show how some people living with dementia in today’s Sweden may pursue active lives at – and out-side – their (ordinary) home, also in the late(st) stages of the disease, supported by family members and personal assistants. The case studies comprise a variety of empirical materials (participant observations, video recordings and audio-recorded interviews with spouses and assistants) and seem to be the first to explore the phenomenon of living with dementia supported by personal assistants. Building on a conceptual framework originally developed by Corbin and Strauss (1985) the presentation will illustrate a variety of work in which the assistants, the individuals with dementia and their spouses engage. Focus will be on the biographical work carried out by the assistant and on how models of thought in disability ideology are embedded in their efforts.

Ämnesord

SAMHÄLLSVETENSKAP  -- Annan samhällsvetenskap -- Tvärvetenskapliga studier inom samhällsvetenskap (hsv//swe)

SOCIAL SCIENCES  -- Other Social Sciences -- Social Sciences Interdisciplinary (hsv//eng)

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