Involvement of Informal Caregivers in Preventing Falls in Older Adults with Cognitive Impairment: A Rapid Review

Abstract

Background:

The prevalence of falls and related injuries is double in older adults with cognitive impairment compared with cognitively healthy older adults. A growing body of literature shows that falls prevention interventions in the cognitively impaired are difficult to implement and that the feasibility and adherence to interventions depend on a number of factors including informal caregiver involvement. However, no systematic review exists on the topic.

Objective:

Our objective is to determine whether involvement of informal caregivers can reduce falls in older adults with cognitive impairment.

Methods:

Rapid review following Cochrane collaboration guidelines.

Results:

Seven randomized controlled trials were identified involving 2,202 participants. We identified the following areas where informal caregiving may have an important role in fall prevention in older adults with cognitive impairment: 1) enhancing adherence to the exercise program; 2) identifying and recording falls incidents and circumstances; 3) identifying and modifying possible environmental falls risk factors inside patient’s home; and 4) playing an active role in modifying lifestyle in terms of diet/nutrition, limiting antipsychotics, and avoiding movements risking falls. However, informal caregiver involvement was identified as an incidental finding in these studies and the level of evidence ranged from low to moderate.

Conclusion:

Informal caregiver involvement in planning and delivering interventions to reduce falls has been found to increase the adherence of individuals with cognitive impairment in falls prevention programs. Future research should address whether involvement of informal caregivers may improve efficacy of prevention programs by reducing the number of falls as a primary outcome.

Keywords

Aged caregivers cognitive dysfunction falls

INTRODUCTION

Falls and related injuries are ubiquitous in older adults with cognitive impairment and dementia [1 –5]. Falls are more prevalent in older adults with cognitive impairment, and this prevalence increases with the severity of cognitive impairment [6]. The consequences of falls in older adults with cognitive impairment are serious as they are twice the risk to suffer injuries and 5 times more likely to be admitted to institutional care than those without cognitive impairment after a fall [7]. A variety of interventions, including exercises, have been used to prevent falls or minimize the risk of injury from falls in older adults with cognitive impairment [8, 9]. However, feasibility and adherence to these interventions is lower in older adults exhibiting cognitive impairment when compared with cognitively healthy [1, 8].

Early interventional studies on falls systematically excluded those with cognitive impairment as their adherence to the program could be low, explaining why little attention incorporating cognition was considered in falls prevention strategies [2]. Despite recommendations to involve informal caregivers (e.g., individuals such as family members and friends who take care of the individuals with cognitive impairment at home) in ascertaining falls history and falls risk reduction in the clinical best practice guidelines [10 –12], no systematic review has been published to evaluate the role of informal caregivers in falls prevention strategies.

Aiming to bridge this knowledge gap, we conducted a rapid review [13] of the existing literature on the role of informal caregivers in ascertaining falls history and falls risk reduction in older adults with cognitive impairment, our target population. Our objective is to determine whether involvement of informal caregivers can reduce falls in older adults with cognitive impairment.

METHODS

We followed a rapid review methodology as it allowed us to identify key concepts, evidence, and gaps in the existing literature in a timely manner integrating a simplified version of the components of the systematic review process [14]. This method accelerates the process of systematic review through faster and simpler methods and produces evidence in a resource-efficient manner [15]. This review adhered to the Cochrane Rapid Reviews method [14]:1) setting the research question-topic refinement; 2) setting eligibility criteria; 3) searching; 4) study selection; 5) data extraction; 6) risk of bias assessment; and 7) synthesis to ensure methodological rigor. This review was registered in PROSPERO (CRD42022325600).

Setting the research question-topic refinement

A working group (Group 6) was created under the World Falls Guidelines (https://worldfallssguidelines.com/) to evaluate the evidence in falls prevention and management in older adults with cognitive impairment. The working group members have expertise in cognitive health and falls and included health professionals (n = 3) and health researchers (n = 6). The research question was, “Can falls be prevented in older adults with cognitive impairment when informal caregivers are involved?”

Setting eligibility criteria

Together with key stakeholders (geriatricians [n = 6], geriatric researchers [n = 6], and older adults with lived experiences [n = 2]), we reached consensus through a series of video conferences to define our population (older adults aged 60 years and over with cognitive impairment defined as someone having Montreal Cognitive assessment score <26, Mini-Mental State Examination score <26, clinical diagnosis of cognitive impairment (e.g., subjective cognitive impairment, mild cognitive impairment, or any type of dementia), intervention (all available interventions to prevent falls), and outcome of interest (informal caregiver involvement).

Searching

The research methodology was developed in collaboration with a research librarian. The search terms were: 1) Falls; 2) Prevention/Intervention; 3) Older Adults, and 4) Cognitive impairment/Dementia/Alzheimer’s Disease (see Supplementary Table 1). We searched the following databases: Medline, Cochrane CENTRAL, SCOPUS, CINAHL and ProQuest: Dissertations and Thesis Global. We used a systematic review software (https://rayyan.ai) to keep track of our review process, to collaborate with the co-authors and the research librarian, and to ensure reproducibility of the search methods. We did not set any date restrictions. We searched from April 2021 to June 2022. However, we limited the language of the literature to ‘English language’. We placed emphasis on higher quality study designs based on Guyatt et al.’s [16] hierarchy of preprocessed evidence.

Study selection

We followed Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines [17] to select the studies. We used a standardized title and abstract screening table (Supplementary Table 2) to conduct a pilot exercise using the same 30 abstracts for the screening team (MS, SS, NK) to calibrate and test the review form. Two reviewers dual screened at least 20% of the abstracts, with conflict resolution. The remaining abstracts were reviewed by a single reviewer (MS). A second reviewer (SS) screened all excluded abstracts and resolved conflicts if any. We used a standardized full text table (Supplementary Table 3) using the same 5 full-text articles to conduct a pilot exercise for both reviewers to refine and to test the review table. We followed the same procedure for full text screening (i.e., one reviewer screening all included full text articles and another reviewer screening all excluded full text articles) that was adopted for title and abstract screening.

Data extraction

A reviewer (MS) extracted data using a piloted form and then, the other reviewer (SS) checked for correctness and completeness of extracted data. We limited data extraction to a minimal set of required data items (presented in the Result section).

Risk of bias assessment

We used GRADE tool [18] to evaluate the risk of bias in the included literature. One reviewer (MS) rated the risk of bias with full verification of all judgements by another reviewer (FF) and the senior author (MMO).

Synthesis

We synthesized the evidence narratively. Since the nature of data and the information provided in the individual literature identified did not allow similar data to pool, a meta-analysis was not appropriate. We used the GRADE tool [16] to ascertain the quality of the individual studies and to determine the strength of the evidence with verification of all judgements of the entire team.

RESULTS

A total of 3,360 papers were retrieved by our search but only seven studies fit the criteria for inclusion in this rapid review. All included studies were randomized control trials (RCT) [19 –25]. The study selection process and the characteristics of the excluded studies are presented in a flow chart (Fig. 1) following PRISMA guidelines [17].

Fig. 1

The study selection process. Reprinted from “Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement” by D. Moher, A. Liberati, J. Tetzlaff, and D. G. Altman, 2009, PLOS Medicine, 6(7), Copyright 2009 by Moher et al. [17]. Reprinted with permission.

The population across the included studies were older adults (mean age 78±6) with cognitive impairment (Mini-Mental State Examination score≤26 or diagnosed as Alzheimer’s disease) living in the community [19 , 23–25] and nursing homes [21, 22] originating from United States of America [22, 24], Australia [20, 21], United Kingdom [23], Spain [19], and Thailand [25].

Several areas were identified in the included studies where informal caregivers were involved in falls prevention: 1) enhancing adherence to the exercise program [20 , 22–25]; 2) identifying and recording falls incidents and circumstances (e.g., when, where, how, injury sustained or not, health seeking behavior) [19–22 , 25]; 3) educating the individuals with cognitive impairment to identify and to modify environmental falls risk factors inside their home [20, 25]; and 4) playing an active role in modifying lifestyle such as dietary modification, vitamin D prescription, limiting antipsychotics, and avoiding movement during sun downing (a clinical state of confusion characterized by early evening disruptive behaviors such as agitation, restlessness, irritability, disorientation, and being demanding and suspicious) [19 , 26].

In nursing homes, falls prevention care plans were often not implemented properly if only health care staff was involved [21, 22]. The possible reason was higher staff turnover (> 50%) and shifting nature of duty roster [21, 22]. The adherence to the falls prevention care plan improves when family caregivers were involved [20 , 25]. All included studies stressed involving informal caregivers in recording incidents of falls, as falls are underreported in this population for issues related to memory. Table 1 describes the characteristics of the included studies in detail.

Table 1

Characteristics of the included studies

Study (Year)	Study Design	Intervention	Control	Duration of Intervention	Participants	Summary of findings
Becker et al., 2003 [22]	Cluster RCT involving 6 nursing homes	Education on falls prevention, advice on environmental adaptations, progressive balance and resistance training, and hip protectors (N = 509)	Usual care (N = 472)	12 months	SS = 981; Age (mean) = 85 y; sex = female (n, % = 772, 79%); cognitive status not declared (people with cognitive impairment were included)	The RR for the rate of falls between the groups was 0.55, (95% CI = 0.41–0.73). The RR for hip fractures between the groups 1.11, (95% CI = 0.49–2.51). The adherence to exercise routines (32.8%) and hip protectors (21%) were dependent on personal support workers. The reasons for non-adherence evaluated during subjective follow up questionnaire included staff shortage in conducting exercise classes, reduced staff support in toileting and dressing while wearing hip protectors. Informal caregivers played a crucial role in recording incidents of falls. Informal caregivers need to be included in the care planning of this population.
Crotty et al., 2004 [21]	Cluster RCT involving 10 nursing homes and 10 retirement living facilities	Education on falls prevention and limiting antipsychotics (N = 381)	Usual care (N = 334)	3 months	SS = 715; Age (mean) = 85 y; sex = female (n, % = 607, 85%; diagnosed as dementia/AD	There were no differences between the Ix and Ctl groups for the three months falls rate. The exception was significantly greater use of “as required” antipsychotics in the Ix group compared with the control group (RR = 4.95; 95% CI 1.69–14.50). Patient care in residential settings is complex and involves contributions from the patient’s physician, family, and residential care staff. The project highlights involvement of informal caregivers in delivering evidence-based care in this setting. Informal caregivers played a crucial role in recording incidents of falls as 62% of incidence report was completed by next of kin. A curious observation was that 74% nursing home residents compared to 64% retirement home residents were prescribed regular antipsychotics. The authors believe the high staff turnover (37%) in nursing homes has a role to play in such prescription habit.
Ferrer et al., 2014 [19]	RCT involving community dwelling older adults attending 7 primary health care centers	Education on falls prevention (N = 164)	Usual care (N = 164)	12 months	SS = 328; Age (mean) = 88 y; sex = female (n, %) = 202 (62%); MMSE =≤19/30	Informal caregivers were required to be an integral part of the program and to ensure the adherence to the Ix. The rate of falls in the Ix group was 39.6% and control group was 29.3%. The difference in the risk of falls was not significant (RR = 1.28, 95% CI 0.94–1.75). Informal caregivers played a crucial role in exercise adherence as the adherence rate increased from 41% to 80% from first year to second year.
Goldberg et al., 2019 [23]	RCT involving community dwellers attending 2 dementia outreach services	PrAISED exercises (3 h/week) that included balance challenging, strength building, dual-task training and gait re-education (N = 20)	No guidance (N = 21), fewer guidance (N = 19)	12 months	SS = 60 dyads (participant and informal caregivers); Age (mean) = 76 y; sex = female (n, %) = 26 (43%); MMSE = 25/30 (mean); 55/60 had a diagnosis of dementia	There was a trend towards better adherence to the Ix with more guidance and more informal caregiver involvement (supervision). Cohen’s d was 0.03 (–0.7 to 0.8) for moderate (no effect) and 0.43 (–0.3 to 1.2) for high intensity supervision (a small effect size), compared with control. The BBS showed a large and statistically significant positive effect size for the moderate intensity d = 0.9, 95% CI [0.1, 1.8] and high intensity d = 1.0, 95% CI [0.1, 1.8] groups compared with control. The falls IRR were 0.68, (95% CI 0.16, 2.8) and 1.20 (95% CI 0.32, 4.5) for moderate and high intensity supervision and informal caregiver involvement, neither being statistically significant.
Padala et al., 2017 [24]	RCT involving community dwellers	Exercise with Wii Fit at home with informal caregiver supervision 30 min/day, 5 days/week (N = 15)	Walking 30 min/ day, 5 days/week at self-pace (N = 15)	8 weeks	SS = 30; Age (mean) = 73 y; sex = female (n, %) = 11 (37%); MMSE = 22/30 (mean)	Balance significantly improved in the Wii-Fit group compared to the walking group in BBS (4.8 [% CI , 3.3–6.2], p < 0.001). Home-based, informal caregiver-supervised Wii-Fit exercises improve balance and may reduce fear of falling in community-dwelling older adults with mild AD. Informal caregiver involvement in ensuring exercise routine being followed was crucial. Informal caregivers played a crucial role in recording incidents of falls.
Sungkarat et al., 2017 [25]	RCT involving community dwellers	Three weeks center-based and 12 weeks home-based Tai Chi (50 min/session, 3 times per week). (N = 33)	Usual care (N = 33)	15 weeks	SS = 66; Age (mean) = 68 y; sex = female (n, %) = 31 (47%); MMSE = 26/30 (mean), Montreal Cognitive Assessment score = 21/30 (mean)	At the end of the trial, Ix group had significantly better composite PPA score and PPA parameter scores: knee extension strength, reaction time, postural sway, and lower limb proprioception, thus reduced physiological falls risk in older adults with cognitive impairment. Involvement of informal caregivers in the training session was important to ensure Ix adherence (87.5%). For example, family members were requested to remind participants about their exercise program and to place the exercise schedule in a prominent location in the home to increase adherence to the intervention.
Wesson et al., 2013 [20]	RCT involving community dwellers	Informal caregiver-supported home hazard reduction and balance and strength exercise (N = 11 dyads of participant and caregivers)	Usual care (N = 11 dyads of participant and caregivers)	12 weeks	SS = 22; Age (mean) = 78 y; sex = female (n, %) = 9 (41%); MMSE = 23/30 (mean)	The intervention was well received by participants and their informal caregivers and adherence to both program components was very good (91%). All participants implemented some home safety recommendations (range 19–80%) with half implementing 50% or more. At the end of 12 weeks, 72% of the Ix group were exercising. Both the rate of falling and the risk of a falls were lower in the intervention group, but these findings were not significant (RR = 0.50 (95% CI 0.11–2.19). Informal caregivers played a crucial role in exercise adherence as they provided supervision of the exercises in 63.6% of cases.

Ix, intervention; Ctl, control; RCT, randomized control trial; SS, sample size; RR, relative risk; CI, confidence interval; AD, Alzheimer’s disease; MMSE, Mini-Mental State Examination; IRR, incident rate ratios; BBS, Berg Balance scale; PPA, Physiological Profile Assessment.

Our rapid review of seven RCT with 2,284 people with cognitive impairment reveals that involving informal caregivers in creating, implementing, and evaluating the care plan for falls risk reduction have better compliance [19 –25]. It is noteworthy to mention that informal caregiver involvement was identified as incidental findings in these studies and has limited level of evidence [19–22 , 24].

However, based on expert opinion (World falls Guideline working group), we declare informal caregiver involvement in preventing falls in the target population as GRADE: 1B (Strong recommendation. Limited level of evidence). Table 2 summarizes quality assessment of the included studies and Table 3 summarizes the aggregate and individual risk of bias of the included studies.

Table 2

Quality Assessment of the included studies (adapted [18])

Name of studies (Design, sample size)	Limitations	Inconsistency	Indirectness	Imprecision	Publication bias	Quality GRADE
Becker et al., 2003 [22] (RCT, n = 981)	No Serious limitations	Serious inconsistency	Serious indirectness	Serious imprecision	Undetected	Low
Crotty et al., 2004 [21] (RCT, n = 715)	No Serious limitations	Serious inconsistency	Serious indirectness	No serious imprecision	Undetected	Moderate
Ferrer et al., 2014 [19] (RCT, n = 328)	No Serious limitations	Serious inconsistency	Serious indirectness	Serious imprecision	Undetected	Low
Goldberg et al., 2019 [23] (RCT, n = 120 [60 dyads])	No Serious limitations	No serious inconsistency	Serious indirectness	No serious imprecision	Undetected	Moderate to High
Padala et al., 2017 [24] (RCT, n = 30)	No Serious limitations	No serious inconsistency	Serious indirectness	No serious imprecision	Undetected	Moderate to High
Sungkarat et al. 2017 [25] (RCT, n = 66)	No serious limitations	Serious inconsistency	Serious indirectness	Serious imprecision	Undetected	Low
Wesson et al., 2013 [20] (RCT, n = 22)	No serious limitations	Serious inconsistency	Serious indirectness	No serious imprecision	Undetected	Moderate

RCT, randomized control trial.

Table 3

Aggregate and individual risk of bias of the included studies (adapted [19])

DISCUSSION

We realize that this review did not answer our research question as no research exist to the best of our knowledge where informal caregiver involvement in falls prevention was a primary outcome. However, the review produced at least four possible roles of informal caregivers potentially preventing falls in people with cognitive impairment. The involvement of family caregivers (e.g., reminding when and how long to exercise, locating a cluster free area of home to exercise, motivating participants of the benefit of regular exercise) has been found to influence the adherence to exercise reflected in studies with participants and their informal caregiver dyads (adherence rate = 82% [20 , 23–25]) compared to nursing home residents being cared for nursing home staff (adherence rate = 76% [22]). However, a better adherence when informal caregivers were involved was registered in the included studies as an incidental finding. On a similar note, studies requesting informal caregivers recording on behalf of the participants (e.g., number of falls/near falls, when and where a fall had occurred, what led to the fall) had fewer missing data on falls (0% [24]–12.5% [25]) as opposed to studies not specifying informal caregivers their roles in recording falls incidents and circumstances leading to falls (31% [19]). In fact, three of the included studies [21 , 24] stressed the involvement of informal caregivers in recording fall incidents. Systematic reviews [27] have identified facilitators such as motivation, caregiver support, and enjoyment for increased adherence to exercise in people with cognitive impairment agreeing with our observation. Home safety assessment in terms of identifying and modifying environmental risk factors has been identified as an important component of falls prevention [28]. Studies formally training (e.g., systematic identification of environmental hazards leading to fall, why they are risky, and how the risk can be avoided) and providing home modification referrals to the informal caregivers to identify and to modify environmental risk factors such as fluorescent step edges, removal of below knee height hazards, and re-organizing furniture to allow improved access had better adherence to recommended modifications (80%) [20, 25] leading us to accept that the involvement of informal caregivers is important. One of the included studies [21] showed a significantly greater use of “as required” antipsychotics in the exercise intervention group (people living in nursing homes and being cared for nursing home staff) compared to the control group (people living in hostels where their informal caregivers are allowed to provide care during daytime) (RR = 4.95; 95% CI 1.69–14.50). On a related note, adherence to lifestyle modification recommendations including diet and antipsychotics usage increased in the participants from 65% to 90% within a year [19] when informal caregivers were educated on the importance such recommendations in preventing falls.

Studies conducted in nursing homes [21, 22] identified that higher caregiving staff (e.g., personal support workers, care aids) turnover in nursing homes often introduces a barrier in implementing the falls prevention intervention and detecting falls. They [21, 22] suggested to involve informal caregivers to improve adherence and to reduce attrition based on their speculation. However, we assume the nursing home participants were sicker than community dwelling participants given the eligibility of nursing home admission depends on deteriorating activities of daily living [29]. Moreover, none of the included studies reported the levels of cognitive impairment (e.g., subjective cognitive impairment or mild cognitive impairment or type of dementia). Therefore, we believe more research exploring the level of supervision based on level of cognitive impairment and housing status can produce valuable information on the importance of informal caregiver involvement in falls prevention.

A meta-analysis with 509 community-dwelling older adults with mild to moderate cognitive impairment with or without informal caregiver support from 12 RCTs demonstrated that multi-factorial fall prevention interventions including exercise, medication or vitamin supplement, cognitive activities, music therapies, and home hazard reduction could be effective for decreasing participants’ perceived risk of falls/fear of falling (standardized mean difference (SMD) –0.73 [–1.10, –0.36]), and improving their balance (SMD 0.66 [0.19, 1.12]), gait speed and control (SMD 0.26 [0.08, 0.43]), and TUG (SMD –0.56 [–0.94, –0.17]) [30]. Interestingly, the attrition rate was lower (4.5%) in those included studies with participants with informal caregiver support compared to those studies without informal caregiver support (71.4%) [30] indicating a positive impact of informal caregiver support during the intervention.

The Centers for Disease Control (CDC) introduced the STEADI (Stopping Elderly Accidents, Deaths & Injuries) initiative offering a coordinated approach based on the American and British Geriatrics Societies’ clinical practice guideline [31] for falls prevention [32]. Agreeing with our review findings, the implementation of the STEADI algorithm (Screen, Assess, and Intervene) recognizes the potential roles of caregivers to reduce falls risk among people with cognitive impairment aged 65 years and older living in the community or in assisted care facilities. Similarly, the recent published World Falls Guidelines recommends based on moderate evidence, that clinicians should promote adherence to a care plan designed to reduce falls in older adults with cognitive impairment by involving caregivers of patients with cognitive impairment. Since limited compliance with the monitoring and evaluation of falls prevention care plan is an important barrier to achieve falls incident rate reduction [32], caregiver involvement in the planning and implementing stage may also help overcome that barrier.

Conclusion

The included studies involving a total of 2,202 older adults, explored the role of caregivers in falls prevention. The authors reached a consensus based on this incidental finding in the included studies that involvement of informal caregivers can reduce falls in older adults with cognitive impairment. We believe a better adherence to a care plan designed to prevent falls in older adults with cognitive impairment may be achieved when caregivers are involved. More research is needed on the caregiver role in falls prevention being a primary outcome.

Footnotes

ACKNOWLEDGMENTS

The authors would like to acknowledge the World Falls Guideline Working Group 6 participants for providing suggestions and guidance in determining research question, search strategy, data interpretation and GRADE assessment of the included studies.

FUNDING

The authors have no funding to report.

CONFLICT OF INTEREST

Munira Sultana and Manuel Montero-Odasso are Editorial Board Members of this journal but were not involved in the peer-review process nor had access to any information regarding its peer-review.

The authors have no conflict of interest to report.

DATA AVAILABILITY

Data are available from the authors upon reasonable request.

The supplementary material is available in the electronic version of this article: .

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