Decision aids to support decision-making in dementia care: a systematic review

We aimed to critically evaluate decision aids developed for practitioners and caregivers when providing care for someone with dementia or for use by people with dementia themselves. Decision aids may be videos, booklets, or web-based tools that explicitly state the decision, provide information about the decision, and summarize options along with associated benefits and harms. This helps guide the decision maker through clarifying the values they place on the benefits or harms of the options.

We conducted a systematic review of peer-reviewed literature in electronic databases (CINAHL, The Cochrane Library, EMBASE, MEDLINE, and PsychINFO) in March 2018. Reference lists were searched for relevant papers and citations tracked. Data were synthesized with meta-analysis and narrative synthesis. Papers were included if they met the following criteria: 1) the focus of the paper was on the evaluation of a decision aid; 2) the decision aid was used in dementia care; and 3) the decision aid was aimed at professionals, people with dementia, or caregivers.

We identified 3618 studies, and 10 studies were included, covering three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. The mode of delivery and format of the decision aids varied and included paper-based, video-based, and audio-based decision aids. The decision aids were shown to be effective, increasing knowledge and the quality of communication. The meta-analysis demonstrated that decisions are effective in reducing decisional conflict among caregivers (standardized mean difference = -0.50, 95% confidence interval [ - 0.97, - 0.02]).

Decision aids offer a promising approach for providing support for decision-making in dementia care. People are often faced with more than one decision, and decisions are often interrelated. The decision aids identified in this review focus on single topics. There is a need for decision aids that cover multiple topics in one aid to reflect this complexity and better support caregivers.