Shared Decision‐Making in Dementia: A Scoping Review

Abstract Background Evidence supports that older adults with cognitive impairment can reliably communicate their values and choices, even as cognition declines. Shared decision‐making (SDM), including the patient, family members, and healthcare providers, is critical to patient‐centered care. The aim of this scoping review was to synthesize what is known about SDM in dementia. Method A scoping review was completed in PubMed, Ovid, and CINAHL. Keywords included content areas of dementia and shared decision‐making. Inclusion criteria were as follows: description of shared or cooperative decision making, cognitively impaired patient population, adult patient, and original research. Review articles were excluded, and those for which the formal healthcare provider was the only team member involved in the decision‐making (e.g., physician) and/or the patient sample was not cognitively impaired. Systematically extracted data were organized in tables, compared, and synthesized to identify what is known about SDM in dementia. Result The search yielded 263 non‐duplicate articles that were screened by title and abstract. Ninety‐three articles remained, and the full text was reviewed; 32 articles were eligible for this review. Studies were from across Europe (n = 23), North America (n = 7), and Australia (n = 2). The majority of the articles used a qualitative study design (qualitative only, n = 13; mixed‐method, n = 9), and 10 used a quantitative study design (intervention, n = 1; quasi‐experimental, n = 1; descriptive, n = 8). Categories of similar SDM topics emerged, including health promotion, end‐of‐life, advanced care planning, and housing decisions. The majority of articles focused on SDM regarding health promotion for the patient (n = 16). Topics related to health promotion included SDM in general patient care, activities of daily living, clinical appointments, fall prevention, diagnostic testing, and medications. Dementia diagnoses varied within studies and across the literature, ranging from mild cognitive impairment to late‐stage Alzheimer’s disease to dementia with Lewy bodies. Conclusion Findings illustrate that SDM requires deliberate effort and is preferred among family members, healthcare providers, and patients with dementia. Future research should include more robust efficacy testing of decision‐making tools, incorporation of evidence‐based SDM approaches based on cognitive status/diagnosis, and consideration of geographical/cultural differences in healthcare delivery systems.