A mixed methods systematic review of informal caregivers' experiences of fall risk among community-dwelling elders with dementia

Evidence on effective fall prevention strategies for community-dwelling elders with dementia is limited, although these elders are at high risk of falling. Informal caregivers may play an essential role in managing fall risk for elders with dementia. Thus, understanding caregiver's experiences is critically important. This systematic review aims to (a) identify caregivers' perceptual, emotional and behavioural responses to fall risk in elders with dementia and (b) examine the outcomes and effects of caregiver behavioural responses. A mixed methods systematic review of 10 databases (PubMed, PsycINFO, CINAHL, Social Service s, Social Work s, EMBASE, Web of Science, Scopus, Cochrane Library and TRIP Medical Database) was conducted. We searched English language, peer-review articles (January 1, 1985-March 20, 2020) that met the predefined inclusion/exclusion criteria. Study quality was assessed using the Mixed Methods Appraisal Tool. Data were analysed using thematic synthesis techniques. Twenty-nine studies were included. Six analytic themes were generated concerning caregivers' perceptual, emotional and behavioural responses: (a) fear of the negative health consequences of falls; (b) limited insights into factors contributing to falls; (c) varying expectations of managing fall risk; (d) multi-level efforts; (e) struggling with responsibilities; and (f) inaction and withdrawal. The findings about the outcomes and effects of caregivers' behaviours were synthesised into three analytic themes: (a) multi-faceted outcomes; (b) uncertain and inconsistent evidence; and (c) unclear associations. The study generated new insights in understanding caregivers' responses of fall risk among community-dwelling elders with dementia and identified significant gaps in examining the impact of caregivers' responses and what shapes these responses. Investment in understanding caregivers' perspectives will inform future interventions and policies to reduce negative outcomes for elders, caregivers and care systems.