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Dementia
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Engagement in activities

Experiences of persons with dementia and their caregiving spouses

Sofia Vikström

Karolinska Institute, Sweden, sofia.vikstrom{at}ki.se

Staffan Josephsson

Karolinska Institute, Sweden

Anna Stigsdotter-Neely

UmeÅ University, Sweden, anna.neely{at}psy.umu.se

Louise Nygård

Karolinska Institute, Sweden

This study identifies how persons with dementia and their caregiving spouses individually perceive their own, their spouse's and their mutual engagements in everyday activities. Fifty-two cohabiting spouses, half of whom were diagnosed with dementia, were interviewed. A qualitative constant comparative analysis was performed, identifying four major themes: perceived changes in activity engagements; consequences of experienced changes; dilemmas experienced by the caregivers; and management approaches to handle a changed everyday life. Each individual described their activities to include loss of social engagements and changes in the relationship. Dilemmas experienced by the caregivers included `interfering with the spouse's engagement or not' and `placing the spouse's or one's own needs first'. The caregiver management approaches identified included `taking over' or `encouraging initiative'; `lowering demands or avoiding problematic engagements'; and `managing through collaboration'. Findings provide insight into everyday engagements for persons with dementia and their caregivers, important to healthcare support providers.

Key Words: daily activities • dementia • caregivers • engagement • home intervention

Dementia, Vol. 7, No. 2, 251-270 (2008)
DOI: 10.1177/1471301208091164
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