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

ROLAND Kaitlyn P., CHAPPELL Neena L.
Journal article citation:
Ageing and Society, 35(9), 2015, pp.1905-1927.
Cambridge University Press

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. (Publisher abstract)

Subject terms:
dementia, carers, informal care, needs, cognitive impairment, Alzheimers disease, Parkinsons disease;
Content type:
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