title: The family's experience and perception of phases and roles in the progression of dementia: An explorative, interview-based study.
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.
authors.affiliation: Department of Physiotherapy, University College Lillebaelt, Denmark; Health Sciences Research Centre, University College Lillebaelt, Odense, Denmark.
authors.forename: Trine H
authors.initials: TH
authors.lastname: Clemmensen
authors.affiliation: Department of Nursing, University College Lillebaelt, DK Health Sciences Research Centre, University College Lillebaelt, Vejle, Denmark.
authors.forename: Laila M
authors.initials: LM
authors.lastname: Busted
authors.affiliation: Department of Occupational Therapy, University College Lillebaelt, DK Health Sciences Research Centre, University College Lillebaelt, Odense, Denmark.
authors.forename: Jane
authors.initials: J
authors.lastname: Søborg
authors.affiliation: Health Sciences Research Centre, University College Lillebaelt, Vejle, Denmark.
authors.forename: Poul
authors.initials: P
authors.lastname: Bruun
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000523:psychology*; D018450:Disease Progression; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research
keywords: caregiver; dementia; experience; family; phases; qualitative; relatives; roles