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A typology of care-giving across neurodegenerative diseases presenting with dementia

Published online by Cambridge University Press:  18 July 2014

KAITLYN P. ROLAND  and
NEENA L. CHAPPELL
KAITLYN P. ROLAND*
Affiliation:
Centre on Aging, University of Victoria, British Columbia, Canada.
NEENA L. CHAPPELL
Affiliation:
Department of Sociology and Centre on Aging, University of Victoria, British Columbia, Canada.
*
Address for correspondence: Kaitlyn P. Roland, Centre on Aging, University of Victoria, PO Box 1700 STN CSC, Victoria, BC, V8W 2Y2, Canada. E-mail: kroland@uvic.ca
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Abstract

The purpose of this study is to develop and extend our understanding of dementia care-giving by introducing a typology of informal care-giving across four different diseases. Care-giving factors were examined with respect to specific dementia presentation in mild cognitive impairment, Alzheimer's disease, dementia with Lewy bodies and Parkinson's disease-associated dementia. Informal care-giving literature in the four diseases was systematically searched to identify specific disease symptoms and resultant care-giving strains and outcomes. Key concepts were extracted and grouped thematically. The first classification, ‘role-shift’, reflects care-giving where cognitive deterioration results in changing roles, uncertainty and relational deprivation among married partners. The second classification, ‘consumed by care-giving’, refers to those caring for persons with dementia-motor decline that greatly increases worry and isolation. Finally, in the ‘service use’ classification, formal support is needed to help care-givers cope with daily responsibilities and behaviour changes. In each case, the dementia presentation uniquely impacts care-giver strains. A major conclusion is that the same support to all care-givers under the umbrella term ‘dementia’ is unwarranted; the development of targeted support is required.

Keywords

mild cognitive impairmentAlzheimer's diseasedementia with Lewy bodiesParkinson's disease dementiacare-givercare-giving
Type
Articles
Information
Ageing & Society , Volume 35 , Issue 9 , October 2015 , pp. 1905 - 1927
Copyright
Copyright © Cambridge University Press 2014 

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