Evidence-based Synthesis Program 

A Systematic Evidence Review

of Interventions for

Non-professional Caregivers

of Individuals with Dementia

Department of Veterans Affairs

Health Services Research & Development Service

October 2010

Prepared for:

Department of Veterans Affairs

Veterans Health Administration

Health Services Research & Development Service

Washington, DC 20420

Prepared by:

Evidence-based Synthesis Program (ESP) Center

Portland VA Medical Center

Portland, OR

Devan Kansagara, MD, MCR, Director

Investigators:

Principal Investigator:

Elizabeth Goy, PhD

Co-Investigator:

Devan Kansagara, MD, MCR

Research Associate:

Michele Freeman, MPH
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

PREFACE

HSR&D’s Evidence-based Synthesis Program (ESP) was established to provide timely and 

accurate syntheses of targeted healthcare topics of particular importance to VA managers 

and policymakers, as they work to improve the health and healthcare of Veterans. The ESP 

disseminates these reports throughout VA. 

HSR&D provides funding for four ESP Centers and each Center has an active VA affiliation. The 

ESP Centers generate evidence syntheses on important clinical practice topics, and these reports 

help: 

• develop clinical policies informed by evidence, 

• the implementation of effective services to improve patient outcomes and to support VA 

clinical practice guidelines and performance measures, and 

• set the direction for future research to address gaps in clinical knowledge.

In 2009, an ESP Coordinating Center was created to expand the capacity of HSR&D Central 

Office and the four ESP sites by developing and maintaining program processes. In addition, 

the Center established a Steering Committee comprised of HSR&D field-based investigators, 

VA Patient Care Services, Office of Quality and Performance, and VISN Clinical Management 

Officers. The Steering Committee provides program oversight and guides strategic planning, 

coordinates dissemination activities, and develops collaborations with VA leadership to identify 

new ESP topics of importance to Veterans and the VA healthcare system.

Comments on this evidence report are welcome and can be sent to Nicole Floyd, ESP

Coordinating Center Program Manager, at nicole.floyd@va.gov.

Recommended citation: 

Goy E, Freeman M, Kansagara D. A Systematic Evidence Review of Interventions for Nonprofessional Caregivers of Individuals with Dementia. VA-ESP Project #05-225: 2010

This report is based on research conducted by the Evidence-based Synthesis Program 

(ESP) Center located at the Portland VA Medical Center, Portland, OR funded by the 

Department of Veterans Affairs, Veterans Health Administration, Office of Research 

and Development, Health Services Research and Development. The findings and 

conclusions in this document are those of the author(s) who are responsible for its 

contents; the findings and conclusions do not necessarily represent the views of the 

Department of Veterans Affairs or the United States government. Therefore, no statement 

in this article should be construed as an official position of the Department of Veterans 

Affairs. No investigators have any affiliations or financial involvement (e.g., employment, 

consultancies, honoraria, stock ownership or options, expert testimony, grants or patents 

received or pending, or royalties) that conflict with material presented in the report.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

EXECUTIVE SUMMARY

Background

The purpose of this report is to review systematically the evidence on the effects of 

caregiver (CG) interventions on CG burden, mood (including depression and anxiety), and the 

ability to manage problematic behavior, as well as the effects on the care recipient (CR).

Methods

We conducted a review of good-quality trials identified from systematic reviews and additional 

studies identified from expert input. We conducted searches for systematic reviews of dementia 

CG interventions in MEDLINE (PubMed), the Cochrane Database of Systematic Reviews, and 

the Cochrane Database of Reviews of Effects from database inception through July 2009.

Results

There were 15 systematic reviews that met our quality criteria: one review of respite care, three 

reviews of technology-based interventions, and 12 systematic reviews that evaluated a variety of 

heterogeneous psychosocial interventions. The systematic reviews of psychosocial interventions 

identified 30 randomized controlled trials (RCTs) that met our criteria for study design and 

sample size. Seven good quality RCTs recommended by expert panel members were added 

following review. 

KEY QUESTION #1. Do CG interventions affect the CG’s knowledge and ability 

to manage problematic behavior, CG psychosocial burden, CG health and health 

behaviors, or outcomes in the individual with dementia? 

Psychosocial interventions

Multicomponent Interventions: Five studies evaluated a combination of varied treatment 

approaches such as skills training, group support, and respite care. Three of the studies 

examined individually tailored multicomponent interventions. Individually tailored intensive, 

multicomponent interventions showed promise for reducing CG depression, and in improving 

sense of burden, self-care abilities, well-being, confidence, and social support ratings. When 

examined across diverse populations, there were group effects for all Latino/Hispanic and 

White/Caucasian CGs as well as Black/African-American spousal CGs. Additionally, CGs 

who experience individually crafted interventions during their caregiving period may fare 

better during the bereavement phase. There was no consistent evidence that multicomponent 

interventions delayed CR institutionalization. 

Exercise Training: We reviewed one trial that compared exercise training for the CG with 

an attention-control group that received supportive phone calls and nutrition guidance. Both 

exercise and control groups demonstrated decreased depression, stress, and burden, but there 

were no significant differences between groups. More studies are needed to evaluate the impact 

of exercise for the CG on CG burden.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Case Management Interventions: We reviewed five studies of intensive nursing case 

management. Overall intensive nursing case management had little effect on CR rates of 

institutionalization, but improvements in CG outcomes were seen in some studies. One study 

reported lower rates of institutionalization for the first months of the two-year program, but by 

the end of two years there were no differences in rates of insitutionalization between intervention 

and control groups. Two other studies found no differences between case management and 

usual care in time to institutionalization, or in CG strain, burden, or depression. Two studies 

published in 2006 support that case management can result in improvements in CG stress (at 12 

but not 18 months), confidence, mastery of caregiving skills, and depression (seen at 18 months). 

These same studies reported smaller declines for CR health related quality of life and fewer CR 

behavioral symptoms, although CR rates of institutionalization remained the same for treatment 

and control groups. 

Behavior Management Training (BMT): Four studies were reviewed that provide limited 

evidence suggesting that training the CG to use behavioral management techniques with the 

CR may improve CG depression, although this finding was not consistent across all studies. 

Two studies in which BMT for the CG was augmented by a separate component – CG self-care 

instruction in one study; exercise for the CR in another – seemed to result in broader outcome 

effects, with reports of improved CR physical mobility and CG coping skills. 

Individual Skills Training: Two of six studies demonstrated that individual skills training for 

CGs ameliorates depression in CGs, but the data show no support for impact on CGs’ sense 

of burden, anxiety, or quality of life. In three studies, CRs showed slower declines in selfcare when skills training included a component targeting activities of daily living (ADL), and 

improved mood when pleasant events were scheduled, but these findings were not replicated in 

three other studies. Two of six studies reported that disruptive behavior may be reduced when 

CGs receive structured training in identifying triggers of disruptive behavior and modifying 

the environment to reduce stress. There is no strong evidence documenting the impact of skills 

training programs on delaying or preventing institutionalization of the CR. 

Group Skills Training Interventions: CG depression improved in three of eight intervention 

studies; significant effects may be associated with interventions that are individualized by inhome assessment and targeted to specific needs of the CR-CG dyad. Two studies reported 

reductions in CG distress. Ancillary improvements in positive interactions and nurturing, 

reducing aversive and hostile CG responses to problem behaviors, reducing CG burden, and 

increasing CG self-efficacy are supported by single studies in the skills training domain. 

Individual, Group, and Combined Individual/Group Supportive CG Counseling 

Interventions: In seven studies reviewed, neither individual supportive counseling nor group 

supportive interventions on their own demonstrated clear superiority over control groups for CG 

depression. A combined individual/group approach resulted in delayed institutionalization for 

the CR and improved mood for the CG, with results sustained across three years in follow-up. 

Ancillary improvements in affective regulation for coping and aversive reaction to CR behavior 

disturbance were supported in single studies. None of these interventions demonstrated group 

treatment effects for CG burden. 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Technology-based Interventions

Three systematic reviews assessed the effectiveness of networked information and 

communications technology interventions (ICT). These included five interventions that used 

computer-telephone integrated support systems, and 13 interventions that aimed to increase 

patient safety and reduce CG stress, such as Global Positioning System (GPS) location systems 

and home-monitoring devices (e.g., boundary alarms, cooking monitors). The evidence 

from controlled empirical studies on the effectiveness of technology-based interventions is 

insufficient, but uncontrolled studies suggest that GPS location systems for wandering behavior 

may improve patient function and safety, as well as reduce CG depression, burden, and stress. 

Robust trials with sufficient follow-up are needed to determine the feasibility, effectiveness, and 

cost-effectiveness of ICT interventions. 

Respite Care

A comprehensive systematic review of the effectiveness and cost-effectiveness of respite care 

services was compiled in 2004 for the United Kingdom (UK) National Health Service (NHS). 

The review identified 45 studies on several forms of respite care, and found small, statisticallysignificant improvements on some outcome measures, but the evidence on how respite affects the 

health and well-being of CGs was inconsistent. Institutional/overnight respite promoted better 

sleep patterns in CGs during the period of respite; but there were no enduring improvements 

in health and well-being in comparison to control groups, or compared to CG baseline state 

associated with respite services of any form. The vast majority of CGs, however, frequently 

expressed high levels of satisfaction, and generally felt that respite services brought them 

various benefits, despite little evidence of significant and/or sustained reductions in measures of 

stress, depression, and burden. Many studies reported CGs’ beliefs that respite enabled them to 

continue caregiving. 

Recent and Ongoing VA Studies

A recently completed six-month implementation study of the Resources for Enhancing 

Alzheimer’s Caregiver Health (REACH) Veterans Affairs (VA) intervention found positive 

effects on CG burden and CR problem behaviors, and appears to be feasible in VA settings. 

The multicomponent intervention includes CG support and skills training in safety, behavior 

management, and self care via in-home, telephone, and telephone support group sessions. Other 

CG interventions recently or currently being studied in VA include the Telehealth Education 

Program (a telephone-based education and support group); Telephone-Linked Care (TLC, a 

computer-mediated telephone support system); Partners in Dementia Care (PDC), a collaborative 

intervention delivered by care coordinators from local VA Medical Centers (VAMCs) and 

Alzheimer’s Association chapters; and the use of remote sensor technology to monitor Veterans 

in the Home-based Primary Care program.

Key Question #2. What are adverse effects of CG interventions?

The systematic review of respite care found evidence in one study to suggest that CGS using
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

day care service actually spend more time on caregiving activities on respite days than on nonrespite days, usually in preparing the CR for the visit or transporting the CR to the day care 

setting. In a small study of institutional/overnight respite services, some CGs reported feelings 

of sadness, loneliness, or guilt while the CR was in respite care; and some reported criticism 

from friends and relatives for allowing relief admission. A drawback of overnight respite care 

reported by some CGs was that the disruption to the CR’s routine had increased the patient’s 

anxiety and confusion, and that there was an increase in short-term workload on return home. 

We found no evidence of adverse effects from other CG interventions based on the systematic 

reviews yielded by our search, and the primary studies on psychosocial interventions we 

examined.

DISCUSSION

CG interventions that appear to be effective tend to be individually-tailored treatments that are 

more resource-intensive, such as BMT, multicomponent interventions, and individual skills training. Overall, the strongest support appears for multicomponent interventions that are designed 

after individual in-home assessment, and tailored to the specific needs of the CG/CR dyad. The 

feasibility of implementation and cost analyses of CG interventions need to be assessed within 

VA settings. Individualized programs may be the most effective but would require more resources of staff to evaluate the dyad and generate a tailored program. 

Loss to follow-up appeared problematic for many of the studies in this review, and may be clinically important. This may highlight issues of intervention acceptability to dementia CGs, and 

reasons for dropout should be assessed and help guide future implementation efforts in this field.

Respite care may offer some short-term benefits to CGs though long-term benefits have not been 

shown. Health services research evaluating cost effectiveness of variations of this intervention 

within the VA setting may help identify the most beneficial length for respite and contribute to 

policy decisions regarding this intervention. 

The wide range of outcomes used to evaluate the effects of CG interventions reflects the diversity 

in what CGs and researchers consider important. Qualitative studies to identify outcomes of supportive interventions that are important to individuals with dementia and their CGs within the VA 

system would serve future research and policy for promoting the best welfare of aging Veterans 

and their community CGs.