A dyadic advance care planning intervention for older adults with early-stage dementia and their family caregivers in a community care setting: A feasibility trial

Abstract

Abstract Background People with dementia gradually lose mental capacity as the disease progresses and require advance care planning (ACP) to express care preferences. However, no culturally appropriate ACP intervention has been developed to engage individuals with early-stage dementia and their family caregivers in the ACP process. Methods A multi-centre, quasi-experimental study was conducted to test the feasibility and acceptability of a theory-guided, dyadic ACP intervention, namely the ‘Have a Say’ programme. This three-session intervention was designed to engage person with dementia–family caregiver dyads in ACP. The feasibility of the trial design, intervention procedures, subject recruitment and retention, and study instruments were assessed. Four instruments were administered at baseline (T0), immediately after the intervention (T1), and at 1 month (T2) and 3 months post-intervention (T3). Acceptability of the intervention was determined by the satisfaction score and completion rate. Qualitative interviews were conducted with a sub-sample of completers and ACP facilitators for process evaluation. Results Subject recruitment from five elderly community centres yielded a recruitment rate of 60% and resulted in 36 client–caregiver dyads. The intervention was acceptable to the dyads, as indicated by the mean satisfaction score of 4.4 out of 5 and completion rate of 94.4%. The attrition rates at T1, T2, and T3 were 5.6%, 11.1%, and 19.4%, respectively. Participants responded to all study instruments except the ACP engagement survey by individuals with dementia. Qualitative interviews revealed that the strengths of the intervention were triadic involvement of and trusting relationships among the individuals with dementia, their family caregivers and ACP facilitators, and documentation of clients’ views and care preferences. Two implementation challenges related to the structured format of the intervention and discussion about medical issues were also identified. Conclusions This ACP intervention and trial design were feasible and acceptable to the dyads in the community care setting. Several refinements for the intervention were identified, including an additional nurse-led group-based session, flexibility to arrange dyadic sessions, and measuring of ACP engagement for both individuals with dementia and family caregivers. A definitive randomised controlled trial to test the refined intervention is warranted. Trial registration Retrospectively registered on 14/08/2020 at clinicaltrials.gov (Identifier: NCT04513106).