Challenges and Resilience in Managing Fall Risk for Community-Dwelling Elders with Dementia: A Systematic Review on Informal Caregivers' Experience

Background: Although elders with dementia have a 2-8 times higher risk of falling than their age-matched peers without dementia, the existing evidence is insufficient to suggest the necessary components for effective fall prevention interventions for elders with dementia, especially for those living in the community. Previous studies suggest informal caregivers may play essential roles, while little is known about how to involve caregivers in managing the fall risk for community-dwelling elders with dementia. Using a social cognitive theoretical framework, this systematic review aims to (1) identify caregivers’ perceptual, emotional, and behavioral responses to the fall risk in community-dwelling elders with dementia; (2) examine the evidence about the effects of caregivers’ behavioral responses on elders with dementia outcomes, caregiver outcomes, elder with dementia-caregiver relationship outcomes and environmental changes; (3) develop an interpretation of caregivers’ experience to inform future interventions.

Methods: Ten databases were searched. Inclusion criteria included quantitative, qualitative, and mixed-method studies examining caregivers’ perceptual, emotional and behavioral responses to the fall risk in community-dwelling elders with dementia. The methodological quality of the included studies was assessed using the Mixed Methods Appraisal Tool Version 2018. Data were analyzed using thematic synthesis techniques.

Results: Among the 2788 studies screened, 25 articles were included. The overall methodological quality of the included studies was moderate. Descriptive themes in caregivers’ perceptual, emotional and behavioral responses to the fall risk in elders with dementia and the effects of caregivers’ behaviors were generated. Based on the descriptive themes, two analytic themes were identified: (1) caregivers face challenges in the process of managing the fall risk in elders with dementia, such as contradictory understandings about contributory factors of falls, feelings of burden, and potential failure of and harm from caregivers behaviors; (2) caregivers can experience resilience in the process of managing the fall risk in elders with dementia, such as positive expectations of managing fall risk in elders with dementia, interactions with elders with dementia and other care systems to manage fall risk and multifaceted effects of their behaviors.

Conclusions: Synthesizing the findings generates new understanding about caregivers’ experiences of challenges and resilience in their perceptual, emotional and behavioral responses to the fall risk in elders with dementia. It illustrates the need to develop high-quality research to examine further the challenges and resilience that caregivers experience. It also points to the gaps in our knowledge of the barriers and facilitators for caregivers to develop resilience to overcome those challenges. Fall risk-related services that target how to address those challenges and promote caregiver’s resilience may serve to support caregivers in effectively managing the fall risk for elders with dementia.