Informal Caregivers’ Perceptions, Feelings and Coping Behaviors about the Fall Risk of Community-Dwelling Older Adults with Dementia: A Systematic Review

Introduction: Fall is an important public health problem for older adults, resulting in significant morbidity, mortality, as well as healthcare costs. Older adults with dementia (OAD) have much higher risk of falls compared to their age-matched peers without dementia (Allan et al., 2009). With limited understanding about the etiology of their higher risk of falling (Allali et al., 2017), there is few evidence-based fall prevention program for OAD, especially for community-dwelling OAD (Peek et al., 2018). Since majority of community-dwelling OAD are cared by family or other informal caregivers (CG), CG might play important roles in preventing falls for community-dwelling OAD, but their experience have not been examined systematically. The purpose of the study was to systematically review the empirical literature on CG’s perceptions, feelings, and behaviors about fall risk of community-dwelling OAD.

Methods: A systematic review of ten databases was conducted on June 30, 2018. Hand-searching was also implemented by reviewing bibliographies and citations of included papers. The study methodology, definitions and measures of fall risk, OAD/CG sample characteristics, CG’s perceptions, feelings and behaviors and the effects of CG’s behavior were extracted; ecological model of health behavior theory was adopted as the analytic framework. The methodology quality of the included studies was assessed using Mixed Methods Appraisal Tool Version 2018 (Hong, et al., 2018).

Results: Among the 2788 studies screened, twenty-five articles were included based on predefined inclusion criteria. Included studies showed CG had their unique perceptions, feelings and behaviors about fall risk of their care recipients, but their experience varied. The effects of their behaviors in addressing fall risk of community-dwelling OAD were mostly left unexamined. CG’s perceptions, feelings and behaviors about fall risk of community-dwelling were not only about the biological body of OAD, but also about CG’s interactions with OAD, CG themselves, home and community environment, institutions and structural environment (i.e., policy, cultural hegemony) in addressing fall risk of their care recipients.

Conclusions: There are insufficient studies exploring CG’s experience in addressing fall risk of community-dwelling OAD. Considering the great variability among CG’s experience in addressing fall risk of community-dwelling OAD, future study should explore how the multi-level environmental factors shape different CG’s perceptions, feelings and behaviors about fall risk of community-dwelling OAD. The effects of CG’s behaviors in addressing fall risk of community-dwelling OAD should be rigorously examined.