A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity.

BACKGROUND: Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. METHODS: The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. RESULTS: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. CONCLUSION: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.

Optimizing the diagnosis and management of dementia within primary care: a systematic review of systematic reviews.

BACKGROUND: To understand how best to approach dementia care within primary care and its challenges, we examined the evidence related to diagnosing and managing dementia within primary care. METHODS: Databases searched include: MEDLINE, Embase, PsycINFO and The Cochrane Database of Systematic Reviews from inception to 11 May 2020. English-language systematic reviews, either quantitative or qualitative, were included if they described interventions involving the diagnosis, treatment and/or management of dementia within primary care/family medicine and outcome data was available. The risk of bias was assessed using AMSTAR 2. The review followed PRISMA guidelines and is registered with Open Science Framework. RESULTS: Twenty-one articles are included. The Mini-Cog and the MMSE were the most widely studied cognitive screening tools. The Abbreviated Mental Test Score (AMTS) achieved high sensitivity (100 %, 95 % CI: 70-100 %) and specificity (82 %, 95 % CI: 72-90 %) within the shortest amount of time (3.16 to 5 min) within primary care. Five of six studies found that family physicians had an increased likelihood of suspecting dementia after attending an educational seminar. Case management improved behavioural symptoms, while decreasing hospitalization and emergency visits. The primary care educational intervention, Enhancing Alzheimer's Caregiver Health (Department of Veterans Affairs), was successful at increasing carer ability to manage problem behaviours and improving outcomes for caregivers. CONCLUSIONS: There are clear tools to help identify cognitive impairment in primary care, but strategies for management require further research. The findings from this systematic review will inform family physicians on how to improve dementia diagnosis and management within their primary care practice.