How Dementia-Related Behavioral Changes and Characteristics of Family Relationship Determine the Growth and Decline of Supervision in Dementia Family Care

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Abstract
Supervision is a burdensome aspect of family care for persons with dementia. For supervision that is both safe and bearable, potential dangers resulting from behavioral changes must be identified and tackled within the context of an ongoing family relationship. In this study, the development of the extent of supervision in the course of care is described from the perspective of family caregivers’ everyday care decisions. The influence of dementia-related behavioral changes, mobility, and relationship characteristics is investigated using existing longitudinal data. Mixed quadratic growth curve models estimated the extent of supervision in the course of up to 27 months of caregiving rated by N = 435 family caregivers. A significant quadratic trend indicated that supervision tends to increase over time in the early years of care, while it tends to decrease in later years. In the final model, this trend was entirely accounted for by four time-varying covariates: disorientation, advanced dementia symptoms, mobility, and the experience of relationship loss. In addition, spouses supervised more extensively than other family members. Confirming the results from qualitative studies, both dementia-related impairments and characteristics of the family relationship determine the extent of supervision. In particular, disorientation and burden of relationship loss appear to encourage risk-averse caregiving behavior: From the point of view of a family caregiver, it may feel safer to overestimate rather than underestimate supervisory needs as long as the care recipient stays mobile.
Funding Information
  • Universität zu Köln

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