Decision Aid Interventions for Family Caregivers of Persons With Advanced Dementia in Decision-Making About Feeding Options: A Scoping Review

Abstract

Objectives: We provided an overview of the literature on decision aid interventions for family caregivers of older adults with advanced dementia regarding decision making about tube feeding. We synthesized (1) the use of theory during the development, implementation, and evaluation of decision aids; (2) the development, content, and delivery of decision aid interventions; (3) caregivers' experience with decision aid interventions; and (4) the effect of decision aid interventions on caregivers' quality of decision-making about feeding options.

Design: Scoping review.

Methods: We conducted a scoping review of peer-reviewed studies published January 1, 2000-June 30, 2022, in MEDLINE, EMBASE, The Cochrane Library, CINAHL, and Web of Science databases. The process was guided by Arksey and O'Malley's methodological framework, which includes identifying the research question, choosing related studies, charting the data, and summarizing results. Empirical articles concerning the decision aid interventions about feeding options were selected.

Results: Six publications reporting 4 unique decision aid interventions were included. All the interventions targeted caregivers of older adults with advanced dementia. Three decision aids were culturally adapted from existing decision aids. The Ottawa Decision Support Framework and the International Patient Decision Aid Standards Framework were used in these 6 publications. Interventions aimed to improve decision making regarding tube feeding for caregivers through static delivery methods. Caregivers rated these decision aids as helpful and acceptable. Decisional conflict and knowledge of feeding options were the most common outcomes evaluated. Reduction in decisional conflict and increase in knowledge were consistently found among dementia caregivers, but no intervention effects were found on preferences for the use of tube feeding.

Conclusions and implications: Decision aid interventions effectively improve decision-making regarding tube feeding among the target population. Cultural adaptation of an existing decision aid intervention is the main strategy. However, the lack of guidance of a cultural adaptation framework in this process may lead to difficulties explaining caregivers' behavioral changes. Moreover, merely providing information is not enough to change caregivers' preferences or behavior of use of tube feeding. A systematic approach to cultural adaptation and interactive intervention is needed in future studies.

Keywords: Advanced dementia; decision aid; dementia caregivers; interventions; tube feeding.