The family's experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study

Trine H Clemmensen, Laila M Busted, Jane Søborg, Poul Bruun

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Abstract

This paper examines how the relatives of a person with dementia experience challenges in everyday life. A model of phases is developed on the basis of interviews with 14 relatives from eight families. Data were subjected to a thematic content analysis, which found that the progression of dementia - from the perspective of the family - had three phases. These phases involved small changes in everyday life, adaptations to everyday life, and the loss of everyday life. The analysis further identified the following two archetypes of relatives that develop throughout the progression of dementia: the protective relative and the decisive relative. The study found that the two types of relatives experience different challenges during the three phases. It is important for health professionals to be familiar with these changes, when they evaluate whether the relatives of a person with dementia require help.

Original languageEnglish
JournalDementia
Volume18
Issue number2
Pages (from-to)490-513
ISSN1471-3012
DOIs
Publication statusPublished - 2019
Externally publishedYes

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dementia
everyday life
interview
experience
human being
health professionals
content analysis

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  • Journal Article

Cite this

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The family's experience and perception of phases and roles in the progression of dementia : An explorative, interview-based study. / Clemmensen, Trine H; Busted, Laila M; Søborg, Jane; Bruun, Poul.

In: Dementia, Vol. 18, No. 2, 2019, p. 490-513.

Research output: Contribution to journalJournal articleResearchpeer-review

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T2 - An explorative, interview-based study

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AU - Bruun, Poul

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