Supporting decision making for individuals living with dementia and their care partners with knowledge translation: An umbrella review

Abstract

Living with dementia requires decision making about numerous topics including daily activities and advance care planning (ACP). Both individuals living with dementia and care partners require informed support for decision making. We conducted an umbrella review to assess knowledge translation (KT) interventions supporting decision making for individuals living with dementia and their informal care partners. Four databases were searched using 50 different search terms, identifying 22 reviews presenting 32 KT interventions. The most common KT decision topic was ACP (N = 21) which includes advanced care directives, feeding options, and placement in long-term care. The majority of KT interventions targeted care partners only (N = 16), or both care partners and individuals living with dementia (N = 13), with fewer interventions (N = 3) targeting individuals living with dementia. Overall, our umbrella review offers insights into the beneficial impacts of KT interventions, such as increased knowledge and confidence, and decreased decisional conflicts. HIGHLIGHTS: Knowledge translation (KT) helps people with dementia and caregivers make decisions. Our umbrella review investigated whether KT interventions helped decision making. KT interventions were beneficial, with advance care planning being the main topic. Thirteen (41%) of the 32 KT interventions were found to be freely accessible online. We recommend the creation of a KT toolkit to guide topic-specific decision making.

Keywords: care partner; decision making; individual living with dementia; knowledge translation.

FIGURE 1

Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) flow diagram of the umbrella review selection process.

FIGURE 2

Critical appraisal for included reviews % of criteria met: < 50% high risk of bias; 50% to 75% medium risk of bias; > 75% low risk of bias. Q1. Is the review question clearly and explicitly stated? Q2. Were the inclusion criteria appropriate for the review question? Q3. Was the search strategy appropriate? Q4. Were the sources and resources used to search for studies adequate? Q5. Were the criteria for appraising studies appropriate? Q6. Was critical appraisal conducted by two or more reviewers independently? Q7. Were there methods to minimize errors in data extraction? Q8. Were the methods used to combine studies appropriate? Q9. Was the likelihood of publication bias assessed? Q10. Were recommendations for policy and/or practice supported by the reported data? Q11. Were the specific directives for new research appropriate? Y, yes; N, no; U, unclear; N/A, not applicable.

FIGURE 3

Description of included reviews and KT interventions: (A) publication years of included reviews, (B) targeted population of KT interventions, (C) categories of KT interventions, (D) geographical distribution of included reviews, (E) sub‐categories of everyday decision‐making interventions, and (F) sub‐categories of advance care planning interventions. Note: Numbers provided for categories of KT interventions per included reviews, while numbers for targeted population are per interventions. ACP, advance care planning; KT, knowledge translation.