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

TABLE OF CONTENTS

Executive Summary............................................................................................................................................. 1

Background.................................................................................................................................................... 1

Methods......................................................................................................................................................... 1

Results ........................................................................................................................................................... 1

Discussion...................................................................................................................................................... 4

Introduction .......................................................................................................................................................... 5

Background .................................................................................................................................................. 5

Methods................................................................................................................................................................... 5

Topic Development........................................................................................................................................ 5

Search Strategy.............................................................................................................................................. 6

Study Selection.............................................................................................................................................. 6

Data Abstraction ............................................................................................................................................ 7

Quality Assessment ....................................................................................................................................... 8

Data Synthesis............................................................................................................................................... 8

Peer Review................................................................................................................................................... 9

Results ..................................................................................................................................................................... 9

Literature Search ........................................................................................................................................... 9

Key Question #1: Do caregiver interventions affect the caregiver’s knowledge and ability

to manage problematic behavior, psychosocial burden, health and health behaviors, or 

outcomes in the individual with dementia? ................................................................................................. 11

Psychosocial Interventions.......................................................................................................................... 11

Multicomponent Studies.................................................................................................................... 11

Exercise Training.......................................................................................................... ..................... 16

Case Management.............................................................................................................................. 16

Behavior Management Training ........................................................................................................ 20

Individual Skills Training ............................................... ...................................................................23

Group Skills Training and Combined Individual/Group Skills Training........................................... 28

Individual, Group, and Combined Individual/Group Supportive Counseling................................... 33

Widely cited psychosocial intervention studies that were excluded from this review................................ 39

Technology-based Interventions.................................................................................................................. 39

Respite Care................................................................................................................................................. 41

Day Care Services.............................................................................................................................. 42

In-home Respite ................................................................................................................................. 42

Institutional/Overnight Services ........................................................................................................ 43

Video Respite ..................................................................................................................................... 44

Recent and Ongoing Research Studies........................................................................................................ 44

Key Question #2: What are adverse effects of caregiver interventions?.................................................... 46
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Discussion.............................................................................................................................................................. 47

Future Research Recommendations............................................................................................................ 51

References............................................................................................................................................................ 53

Tables and Figures

Figure 1. Literature Flow.............. ...............................................................................................................10

Table 1. RCTs of multicomponent interventions for caregivers of individuals with dementia ................. 13

Table 2. RCTs of case management for caregivers of individuals with dementia..................................... 18

Table 3. RCTs of behavioral management training for caregivers of individuals with dementia ............. 21

Table 4a. RCTs of individual skills training for caregivers of individuals with dementia .......................... 25

Table 4b. RCTs of group skills training for caregivers of individuals with dementia................................. 30

Table 4c. RCTs of combined individual skills training and group workshops for caregivers 

of individuals with dementia........................................................................................................ 32

Table 5a. RCTs of individual counseling or group support for caregivers of patients 

with dementia............................................................................................................................... 35

Table 5b. RCTs of combined individual counseling and support group for caregivers 

of individuals with dementia........................................................................................................ 37

Appendices

Appendix A. Inclusion/Exclusion Criteria .................................................................................................. 59

Appendix B. Quality Rating Criteria for Systematic Reviews.................................................................... 60

Appendix C. USPSTF Quality Rating Criteria............................................................................................ 61

Appendix D. Abbreviations......................................................................................................................... 62

Appendix E. Reviewer Comments and Responses...................................................................................... 64
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

INTRODUCTION

BACKGROUND

In 2004, the Office of the Assistant Deputy Under Secretary for Health for Policy and Planning 

estimated that the total number of Veterans with dementia would be as high as 563,758 in FY 

2010.1

 Individuals with dementia are frequently cared for at home by a friend or family member. 

The progressive nature of the illness and the intensity of care that may be required in caring for 

a loved one with dementia have physical, emotional, and psychological impacts on the CG. The 

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

interventions on CG burden, mood (including depression and anxiety), and ability to manage 

problematic behavior, as well as the effects on the CR.

The Veterans Health Administration (VHA) Office of Geriatrics and Extended Care (OGEC) 

in Patient Care Services has primary responsibility for coordination and direction of VHA 

dementia initiatives. OGEC convened an interdisciplinary Dementia Steering Committee 

(DSC) in December 2006, with the goal of making recommendations on comprehensive, 

coordinated care for Veterans with dementia. The DSC requested VA Health Services Research 

and Development’s (HSR&D) Evidence-based Synthesis Program (ESP) to review evidence on 

selected topics, in order to assist with DSC planning efforts. The DSC served as the technical 

expert panel for guiding topic development and reviewing drafts of the report.

METHODS

TOPIC DEVELOPMENT

The review was requested by the VHA DSC, and the DSC served as the technical expert panel 

for guiding topic development and reviewing drafts of the report.

The objectives of this review are to address the following questions:

Key Question #1: Do CG interventions affect the CG’s knowledge and ability to manage 

problematic behavior, psychosocial burden, health and health behaviors, or outcomes in the 

individual with dementia?

 

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

Population: Non-professional CGs of individuals with dementia in all settings. CGs include 

spouses and other family members, as well as paid sitters or assistants hired by the family; 

professional staff is excluded.

Interventions: Categories of intervention include psychoeducational interventions, cognitivebehavioral interventions, counseling/case management, general support services, respite 

care, and multicomponent interventions. Specific interventions of interest targeted CGs and 

included telephone-based support groups and education, Home TeleHealth/Health Buddy home 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

monitoring device; Internet-based resources and CG assistance programs, and physical activity.

Comparator: Usual care / no interventions directed at the CG.

CG outcomes:

• Knowledge and ability to manage problematic behavior;

• Psychosocial outcomes (burden/subjective well-being, depression, anxiety, perceived 

self-efficacy, positive experiences of caregiving, satisfaction with health care, quality of 

life);

• Health behaviors (diet, exercise, sleep);

• Health (reported health, symptoms, medication use/misuse, service use, mortality).

CR outcomes:

• Use of psychotropic drugs; 

• Cognition, mood, behavioral disturbances, social function, or physical function;

• Hospitalizations, institutionalizations, or health care visits including ER visits; 

• Accidents; 

• Health-related quality of life; 

• Satisfaction with health care.

Setting: Home, community living center.

The DSC served as the technical expert panel for guiding topic development and reviewing 

drafts of the report.

SEARCH STRATEGY

We conducted a search for systematic reviews of dementia CG interventions in MEDLINE 

(PubMed), using the following search terms: (“dementia”[MeSH Terms] OR “dementia”[All 

Fields]) AND systematic[sb]. We also searched in the Cochrane Database of Systematic 

Reviews and the Cochrane Database of Reviews of Effects (OVID) from database inception 

through July 2009, using the term dementia.mp. In addition to the search for published 

systematic reviews, we contacted researchers within VA to identify important recent and ongoing 

studies of dementia CG interventions. We also examined recently published studies found in a 

compendium compiled by the Administration on Aging’s (AoA) Alzheimer’s Disease Supportive 

Services Program2 that were not captured in previous systematic reviews. All citations were 

imported into an electronic database (EndNote X2).

STUDY SELECTION

Three reviewers assessed the titles and abstracts of citations identified from literature searches. 

Full-text articles of potentially relevant abstracts were retrieved for further review. We selected 

systematic reviews of CG interventions, using the eligibility criteria shown in Appendix A. 

Eligible articles had English-language abstracts and provided data relevant to the key questions. 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Eligibility criteria varied depending on the question of interest, as described below.

The literature search identified four systematic reviews that focused on respite care, and six 

reviews on technology-based interventions. We selected one systematic review on respite care 

and three reviews on technology-based interventions that were the most comprehensive, recent, 

and relevant.

There were 10 systematic reviews that evaluated a variety of psychosocial interventions, 

including exercise, case management, behavioral management training, individual and group 

skills training, individual support or counseling, and multicomponent interventions. We 

examined the degree of overlap between articles included in systematic reviews and found that 

many of the primary studies were included in more than one review. We also found that the 

systematic reviews grouped psychosocial interventions in different ways, combining a variety of 

dissimilar therapies in some cases. This made it difficult to summarize the findings of previous 

systematic reviews on the effects of specific forms of treatment. We therefore retrieved the fulltext articles for the primary studies included in these systematic reviews, and examined each 

study for quality (see Quality Assessment section below), design, and type of intervention. Out 

of concern that we might miss content from good quality primary studies that were reviewed 

elsewhere (in systematic reviews excluded from our sample due to poor quality), we retained one 

very comprehensive systematic review3

 that had identified 127 CG intervention studies but did

not meet our quality criteria for systematic reviews. This effort contributed an additional three 

RCTs to our review of primary data on psychosocial interventions. 

Altogether there were 224 primary studies included among the 11 systematic reviews of 

psychosocial interventions. Of these, we selected RCTs rated good-quality by the respective 

systematic review and with sample size greater than 50, and analyzed the body of evidence for 

specific forms of treatment. This approach allowed us to identify the best evidence for specific 

psychosocial interventions, based on the literature searches and quality assessments previously 

conducted by existing systematic reviews. 

Our expert review panel recommended additional individual studies published after the 

search dates of the respective systematic reviews, and were considered by panel members 

to demonstrate important advances in the field. We also examined studies found in the 

compendium of intervention studies compiled by the AoAAlzheimer’s Disease Supportive 

Services Program. These studies met our criteria for inclusion as good quality, RCTs, and were 

incorporated into our overall review. 

DATA ABSTRACTION

For technology-based interventions and respite care, we summarized the findings of recent systematic reviews that had performed comprehensive, qualitative syntheses of the primary literature on these topics. 

From RCTs on psychosocial interventions, we abstracted information about sample 

characteristics; the methods used for the intervention and control groups; the outcome 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

measures used; and the results for CG and CR. We compiled evidence tables organized for the 

psychosocial interventions. 

QUALITY ASSESSMENT

We rated the quality of systematic reviews using the criteria shown in Appendix B.4, 5 We selected

good-quality systematic reviews based on the comprehensiveness and reproducibility of the 

search strategy, the use of standard methods to appraise the validity of included studies, and the 

absence of apparent bias in drawing conclusions. 

As noted, we also included one systematic review3 that did not meet our quality criteria (the

methods for quality rating were not reproducible as described), because it included the most 

comprehensive report of primary studies, and improved our confidence that we were not missing 

good quality primary studies. We examined 78 controlled trials of psychosocial interventions 

that had been previously rated high in quality by existing systematic reviews, by considering 

the following elements: the comparability of treatment groups; the adequacy of randomization; 

whether treatment allocation was concealed; whether eligibility criteria were specified; the 

use of blinding among patients, care providers, and outcome assessors; whether the analysis 

was intention-to-treat, or conducted with post-randomization exclusions, or with extensive or 

differential loss to follow-up; clearly defined interventions; and reliable outcome measurement 

(Appendix C).4

 We applied criteria for randomization and adequate sample size (n≥50) to 

select uniformly the studies that would most likely represent the best evidence on a particular 

intervention, among the controlled trials that had been identified and screened by good quality 

systematic reviews. 

DATA SYNTHESIS

We organized the literature into the following intervention categories:

•	 Psychosocial interventions

o Multicomponent interventions

o Exercise training

o Case management

o Behavioral management training

o Individual skills training

o Group skills training

o Individual, group, and combined individual/group supportive counseling 

•	 Technology-based interventions

•	 Respite care

We selected systematic reviews on respite care and technology-based interventions that had 

performed recent, thorough assessments of the relevant evidence, and therefore represent the 

current knowledge available on these topics. We chose to present a summary of their findings 

directly in this report. For psychosocial interventions, which were far more heterogeneous, we 

critically analyzed primary trials selected to represent the best evidence on these topics according 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

to the criteria listed above. We compiled a qualitative, descriptive synthesis of the evidence 

on specific forms of therapy: exercise, case management, behavioral management training, 

individual and group skills training, individual support or counseling, and multicomponent 

interventions. 

A list of abbreviations is provided in Appendix D. 

PEER REVIEW

A draft version of this report was sent to the technical advisory panel and additional peer 

reviewers. Their comments and our responses resulted in updates to our review and are included 

in Appendix E. 

RESULTS

LITERATURE SEARCH

Figure 1 shows the yield and flow of the literature search. The search for systematic reviews 

yielded 1,711 citations. After abstract review (see Appendix A), de-duplication of remaining 

articles retrieved from both databases, and the removal of systematic reviews that had been 

updated (for example, if there were three Cochrane reviews on a topic, only the most recent 

update was retained), a total of 112 review articles were retained for full-text review. Of these, 

we included 15 that met our criteria for good quality systematic reviews (Appendix B). We 

included one review of respite care and three reviews of technology-based interventions. 

There were 11 systematic reviews that evaluated a variety of psychosocial interventions in 224 

primary studies. Of these, we examined 78 primary studies that had been rated good quality 

in the systematic reviews. Among these 78 studies, we identified 30 RCTs of psychosocial 

interventions that met our quality criteria for study design and sample size. 

We also examined three good-quality studies found in the compendium of intervention studies 

compiled by the AoA Alzheimer’s Disease Supportive Services Program,2 six studies that were 

identified by peer reviewers, and one good quality RCT published just as we were concluding 

our response to peer review.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Figure 1. Literature Flow 

10

1,711 abstracts imported from PubMed, Cochrane  

Database of Systematic Reviews, and Cochrane Database of  

Reviews of Effects (database inception through July 2009)

3 systematic reviews

of technology‐based

interventions

One systematic review of

respite services:  

‐ day care

‐ institutional/overnight  

‐ combination programs

‐ multi‐dimensional CG‐

support packages

11 systematic reviews

(SRs) of psychosocial

interventions

Exercise RCTs

N = 2

Individual support or

counseling RCTs

N = 7

Behavioral management

training RCTs

N = 4

Multicomponent

intervention RCTs

N = 5

Case management RCTs

N = 5

Individual and group  

skills training RCTs

N = 14

224 primary RCTs

identified in 11 SRs

37 good‐quality RCTs of  

psychosocial interventions

194 RCTs

excluded on the

basis of study

design and

sample size

9 recent and

ongoing studies by

VA researchers

3 recent studies

found in the 2010

AoA compendium

112 full‐text articles retrieved

Added 7 primary RCTs

suggested/published in

time by expert panel
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

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

and ability to manage problematic behavior, psychosocial burden, 

health and health behaviors, or outcomes in the individual with 

dementia? 

Psychosocial Interventions

The results on psychosocial interventions are organized in the following subcategories: 

multicomponent studies; exercise training; case management; behavior management training 

(BMT); individual skills training; group skills training and combined individual/group skills 

training; and individual, group, and combined individual/group supportive counseling.

Multicomponent Studies

Summary impact of multicomponent interventions: There is no consistent evidence that 

multicomponent interventions delayed CR institutionalization. Individually tailored intensive, 

multicomponent interventions show 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. 

Five studies evaluated a combination of varied treatment approaches such as skills training, 

group support, and respite care (Table 1). In one study, two treatment groups were compared to a 

respite control condition.6

 CGs in Treatment 1 received 10 days of structured group support and 

skills training to improve coping, set limits, seek support, reduce guilt, and reframe challenges 

while living in a residential setting (as non-admissions in a psychiatric ward of a general teaching 

hospital) while CRs participated in separate structured training for memory enhancement. 

Follow-up phone calls and trainings continued for 12 months. Treatment 2 consisted of a sixmonth wait list, then entry into similar treatment and follow-up for 12 months. Both groups were 

compared to a control condition in which the CG received 10 days respite with phone follow-up 

similar to Treatment 1. All CRs across the three conditions received 10-day memory activity 

training. CRs of CGs who received training (Treatments 1 & 2 combined) had significantly 

delayed institutionalization compared to respite control, with effects evident across eight years 

in survival analysis. No other outcomes were reported. The three groups were comparable for

average age of CGs and CRs, CR performance on the Mini Mental Status Examination,7

 average 

CR performance on the Clinical Dementia Rating Scale,8 and rates of decline on measures of 

instrumental ADL and ADL at 3, 6, and 12 months after training.

The second study provided weekly in-home respite care (four hours) plus weekly home visits 

by a nurse to provide CG education and training, and monthly self-help CG support groups for 

six months.9 This intervention was compared to usual care control offering community nursing 

focused on the CR rather than CG, with monitoring of medicines and help with activities of 

living. While the intervention was associated with a favorable cost per quality-adjusted life year 

gained, no significant differences in CG or CR depression, anxiety, quality of life, or time to 

institutionalization were reported.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

We considered two studies completed after the previous systematic reviews were published, on 

the recommendation of our expert panel. An RCT compared a six-month individually tailored 

program of 12 in-home and telephone interventions (including skills training, problem solving, 

stress management training, and five structured phone support group sessions with supplemental 

written resource materials) with control participants who received written informational 

materials plus an invitation to join a group at the end of data collection (N =642).10

 This study 

also examined the impact of the intervention for different ethnicities, including Hispanic/Latino 

(N = 212), Black/African-American (N = 211), and White/Caucasian (N = 219). The overall 

prevalence of CG depression was higher in the control group at follow-up. Hispanic and White 

participants endorsed significant improvements for depression, burden, self-care, and social 

support (referred to collectively as “quality of life”), but in the Black group, these findings were 

supported for spousal CGs only. Clinical improvement (defined as change equal to or greater 

than 0.5 Standard Deviation) across all measured domains was greater for the CG intervention 

group than the control group for Hispanic/Latino participants. White CG participants 

demonstrated clinically meaningful improvements in social support. Black CG participants 

showed clinically meaningful differences for burden and self care, for spouses only. White and 

Hispanic CRs had significantly greater improvements in problem behaviors following treatment 

when compared to control members, but this change did not occur among Black CRs. The 

intervention had no effect on institutionalization at follow-up.

The second of these recent studies comprised a subset (N = 224) of the REACH program of 

research, reporting the impact of various REACH interventions and their paired controls across 

the country on postmortem grief experiences of dementia CGs.11

 Overall, CGs who participated 

in the intervention groups prior to the death of their CR endorsed less normal grief than in 

the control conditions. There was a nonsignificant trend for reduced complicated grief in the 

intervention group. No group treatment effects were seen for CG depression. The authors 

observed across REACH sites that cognitive-behavioral interventions appeared most effective in 

preventing complicated grief.

A fifth good quality RCT12 was released for publication during our response to peer review. 

Originating with the Care of Persons with Dementia in their Environments (COPE) trial, this study

conducted individual home assessment (N = 102) of CR deficits and CG concerns, followed by 

up to 12 home or telephone visits over four months providing: CG education about their partner’s 

capabilities, medications, and symptoms; and CG training to address problem behaviors, improve 

communication, simplify tasks, and reduce environmental stressors, compared to a control 

group (N = 107) receiving three phone calls and educational materials. Intervention participants

demonstrated better outcomes than the control group for CR instrumental ADL and overall 

functional dependence, CR activity engagement, and CG wellbeing and reported confidence. 

These effects were still apparent at nine-month follow-up for CGs, but not for CRs.

Limitations of the literature: In the initial studies reviewed, group sizes were small, ranging 

from 30-33 across both studies, possibly limiting power to detect change. One study found a 

treatment effect on time to CR institutionalization, but it is difficult to ascertain which aspect(s) 

of the multicomponent treatment were effective in these studies. 
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 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

nent interventions for caregivers of individuals with dementia 

Drummond, et al. 19919 Belle, et al. 2006 10 REACH II Holland, et al. 2009 11 Gitlin, et al. 2010 12

entia 

CG. 

leting)

CG living with a cognitively impaired relative judged unlikely to be institutionalized during study. (N=60)

Individuals with AD or related disorders and their caregivers who reported distress associated with caregiving, grouped by caregiver ethnicity. (Hispanic/Latino N = 212, White/Caucasian N = 219, Black/African-American N = 211). (642)

Bereaved family caregivers of decedent individuals who had Alzheimer’s dementia. (N = 224, subset of REACH study)

Individuals with dementia and their family CGs who reported difficulty managing CR functional decline or behaviors. (N=209)

day 

ips and 

eived 

idential 

op

upport, 

ame 

ow-up 

ngs for 

t, en

 after 

milar 

(N=31)

Weekly in-home respite care (4 hours), weekly nurse home visits to provide education and training, and monthly self-help support group for 6 months. (N=30)

Six month program of 12 inhome and telephone individually tailored active interventions including skills training, problem solving, stress management training, and didactics, with 5 structured phone support group sessions. Written resource materials supplemented training. (N =323; 106, 113, 104, respectively by ethnicity)

Active interventions varied across REACH sites, often multicomponent, included behavioral interventions, environmental modifications, support directly and/or by phone and/or computer

Tailored assessment, CG education, CG training. 102 dyads received up to 10 sessions with an occupational therapist over 4 months, and 1 face-to-face session and 1 phone session with an advance practice nurse.

 respite 

p to 

Usual care community nursing focused on the CR rather than CG, monitoring medicines and helping with ADL/IADLs. (N=30)

Mailed educational packet, 2 brief phone contacts, plus invitation to join dementia/caregiving workshop at the end of the study (N = 319; 106, 106, 107 respectively)

Varied across sites, included minimal support and usual care conditions.

Controlled for professional attention and tailoring of information. 107 dyads received up to 3 20-minute phone calls from research staff (not occupational therapists or nurses), and general information brochures.

CQLICES-D STAI

CES-D, Zarit Caregiver Burden Interview, 11-item health self-care questions10 items social support measure

Inventory of Complicated GriefTexas Revised Inventory of GriefCES=D

Well-being: 13-item perceived change index (ability to manage dementia, emotional status, somatic symptoms);Confidence: 5-item activities in last month;Satisfaction, perceived benefits.
14

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Drummond, et al. 19919 Belle, et al. 200610 REACH II Holland, et al. 200911 Gitlin, et al. 2010 12

No significant differences in depression, anxiety, or quality of life.

Significantly greater (statistical) improvements among Hispanic/Latino and White/Cauc participants for depression, burden, selfcare, social support, but not for Black/AA participants. Black/AA spouses showed significantly greater improvement than spouses in control group (but not nonspouses).Net clinical improvement across 5 domains greater in intervention than control group for Hispanic/Latino participants. White participants showed clinically meaningful effect with social support. Black/AA participants showed clinically meaningful differences for burden and self care, for spouses only.Overall prevalence of depression higher for controls at follow-up.

CGs in intervention groups reported significantly fewer normal grief symptoms than control condition. Nonsignificant trend for reduced complicated grief in intervention group. No effects seen for depressionCognitive-behavioral interventions seem to be most effective as preventative for complicated grief.

Adjusted mean difference (95% CI) at 4 months: Improved well-being, PCI: 0.22 (0.08-0.36)Confidence using activities: 0.81 (0.30-1.32)More COPE CGs reported eliminating at least 1 problem: 62.7% vs. 44.9% (p=0.01).

me 

Not evaluated. 3 items from RMBPC

Institutionalization at 6-mo. follow-up

--- FIM; 12-item QOL-AD; 

16-item Agitated Behavior in Dementia Scale; Activity Engagement

ceived 

m

tly 

zation 

on

s over 

ning 

ning in 

Not evaluated. Significantly greater improvements among Hispanic/Latino and 

White/Cauc participants for CR problem behaviors, but not for Black/AA.Clinically significant improvements in problem behavior score for Latino/Hispanic.No differences in institutionalization at follow-up.

--- Adjusted mean difference 

(95%CI) at 4 months:Improvements in functional dependence: 0.24 (0.03-0.44);Improved engagement: 0.12 (0.07-0.22).
15

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Drummond, et al. 19919 Belle, et al. 200610 REACH II Holland, et al. 2009 11 Gitlin, et al. 2010 12

serving 

ime in 

g could 

uping. 

Economic analysis determined that the annual incremental cost of providing the support program was $2,204 (Canadian dollars) per caregiver, and that the improvement in CG QoL(as measured by the CQLI) was 0.11 over the 6-month intervention period. The implied incremental cost per QALYgained is therefore $2,204/0.11 or $20,036. 

Stratified randomized assignment by site, ethnicity, and dyadic relationship.Follow-up limited to 6 mos., no 12 mo. data.According to authors: treatment is feasible in community settings delivered by BA in psychology, social work, nursing, OT or related.

Noncompleters similar to completers on care demographics.Universal, rather than targeted interventions, likely to show smaller effect sizes.

A high prevalence (close to 40%) was found of undiagnosed, treatable medical conditions among intervention CRs.

rican; ADL = activities of daily living; CES-D = Center for Epidemiologic Studies Depression Scale; CG = caregiver; CQLI = Caregiver Qual

cipient; GQ-SR = good-quality systematic review; IADL = Instrumental Activities of Daily Living scale; ITT = intention-to-treat; PCI = patient 

sted life years; STAI = State Trait Anxiety Disorder; Tx 1 = treatment 1; Tx 2 = treatment 2.
16

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Exercise Training

Summary impact of exercise training interventions: There is insufficient evidence evaluating the 

impact of exercise for the CG on CG burden. More studies are needed.

One study, cited by two reviews, evaluated exercise training among 100 sedentary female CGs of 

a relative with dementia.13

 In this study, 51 CGs participated in a home-based exercise training 

program with 15 supportive telephone contacts, while 49 CGs received an attention-control 

condition in which CGs received supportive phone calls with nutrition guidance. The exercise 

training program successfully cultivated adherence to regular exercise participation, with a goal 

of four 30+ minute sessions per week, but demonstrated no effect on CG depression, stress, 

anxiety, or burden, compared with the controls. Both exercise and control groups demonstrated 

decreased depression, stress, and burden, but there were no significant differences between 

groups. The study authors noted that CGs who were more depressed at baseline demonstrated 

poorer adherence to the exercise regimen.13

Case Management

Summary impact of case management interventions: Two RCTs published in 2006,14, 15

 which 

featured individualized assessment and care plans, report promising improvements in CG 

depression, stress, and confidence in caregiving, and reductions in CR problem behaviors. Prior 

to these studies there was little evidence to support that intensive nursing case management 

has a sustained impact on CG mood or strain. There may be some transience in the timing of 

beneficial effects, which were evident at some follow-up evaluations and not at others. There is 

insufficient evidence to support that case management interventions have an impact on rates of 

CR institutionalization.

Five studies investigated the impact of intensive nurse care case management on CG and CR 

outcomes, with mixed conclusions (Table 2). Three studies focused on institutionalization 

outcomes. Eloniemi-Sulkava and colleagues reported lower rates of institutionalization for 

the first months of the two year program among 53 individuals with dementia whose CGs 

received telephone and in-home support and psychoeducation, compared to usual care (N=47).16

 

However, by the end of the two years there were no differences in rates of institutionalization 

between the intervention and control groups. The authors concluded that severely demented 

individuals on the verge of institutionalization would most benefit from this kind of program 

by delaying nursing home placement. Another study reported no evidence that nursing case 

management delayed institutionalization of the CR when compared to usual care.17 An additional 

study apparently linked to the Miller, et al., database18

 reported there was no reduction in CG 

strain, burden, or depression resulting from nursing case management intervention that included 

respite care, home care, and consultation, but did find that the intervention group was more likely 

to use community services than the control group. 

A fourth study provided collaborative care management for 84 CG-CR dyads with CG training in 

problem solving, behavior management, communication skills, and coping, as well as provision 

of advice, exercise guidelines, information on dementia, and invitation to voluntary support 

group sessions, compared to augmented usual care for 69 dyads, where primary care providers 

were permitted to refer for any treatments or services deemed appropriate.14

 Improvements 
17

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

related to intervention were intermittent but measurable; the authors reported significant 

intervention group improvements in CG stress as measured by the Neuropsychiatric Inventory 

for CGs, at 12 months follow-up but not 18 months. CGs under case management also endorsed 

improved mood on at 18 months compared to usual care control (but not at 6 or 12 months). 

CRs who participated in the intervention were rated with fewer total behavioral symptoms of 

dementia at the end of the study, but there was no impact on CR mood, cognition, or ability to 

complete ADL. The intervention did not influence likelihood of nursing home placement by the 

end of the study. 

A fifth study included 408 CG-CR dyads, and demonstrated beneficial effects of individualized 

care management that provided teaching problem-solving skills, initiating care plan actions and 

generating a problem list for clinical care based on in-home structured assessment, compared to 

usual care.15

 Intervention CGs endorsed higher confidence in caregiving at 12 and 18 months, 

while mastery of caregiving skills and social support were rated as significantly improved over 

control at 18 months follow-up. CG health-related quality of life did not change as a result of 

the intervention. For CRs in the intervention group, there was nearly double the adherence to 

dementia treatment guidelines adopted a priori in the study protocol, and while health-related 

quality of life dropped for both groups, there was significantly less decline for the intervention 

participants. CGs also rated higher quality of health care for their CRs in the intervention group. 

Limitations of the literature: The reduction in institutionalization in a population of communitydwelling elders in Finland16

 may not readily generalize to US or Veteran populations. 
18

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

ment for caregivers of individuals with dementia

t al. 200116 Miller, et al. 199917 MADDE 

study

Newcomer, et al. 199918 Callahan, et al. 200614 Vickrey, et al. 200615

ndividuals 

heir unpaid 

0 dyads)

Community-dwelling CG-care recipient (CR) dyads where CR had dementia and CG was unpaid. (N=8095) 

As in Miller, 1999. Older adults with AD and their 

CGs. (N=153)

Informal CG-CR dyads from 18 primary care clinics. (N=408)

anage

education 

ng through 

me visits 

 referrals, 

availabil

Intensive case management, consultation, phone and inhome visits. Program also included respite care, home care, CR occupational therapy, CR nursing care, and case management. (N=4151)

As in Miller, 1999. Collaborative care management 

including problem solving, behavior management training, communication skills training, coping skills training, advice, exercise guidelines, information on dementia, and invitation to voluntary support group sessions (attended at least once by 56%). (N=84)

Individualized care manager-led disease management intervention (teaching problem-solving skills, initiating care plan actions and generating a problem list for clinical care) following structured home assessment. Ongoing telephone follow-up with reassessment every 6 mos. (N=238)

Usual care. (N=3944) As in Miller, 1999. Augmented usual care following any evaluation or treatment 

deemed appropriate by primary care provider. (N=69)

Usual care. (N=170)

Not evaluated. Zarit Burden Scale, Geriatric Depression Scale, and Zarit Stress Scale were measured as baseline covariates only.

Zarit Burden Scale Geriatric Depression Scale

NPI CG portionPHQ-9

CG knowledge of dementia (5 items)CG health

Not evaluated. CM did not reduce strain or 

depression for CG.

Significant Intervention group improvements in CG stress at 12 mos. but not 18 mos. on NPI. Improved mood on PHQ9 at 18 months compared to usual care control (but not at 6 or 12 mos.).

Higher confidence in caregiving at 12 and 18 mos.Higher mastery of caregiving skills rated at 18 mos.Higher social support for Intervention group at 18 mos.Health related quality of life equivalent across groups.

ization. Rate of institutionalization. Not evaluated. NPI

ADLsHealth Care resource useCSDDTelephone Interview for Cognitive StatusMedication List

Adherence to 23 guideline recommendations.Use of community resources.CR healthCR quality of care
19

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

t al. 200116 Miller, et al. 199917 MADDE 

study

Newcomer, et al. 199918 Callahan, et al. 200614 Vickrey, et al. 200615

tudy, rate 

zation 

ervention 

was erased 

low-up.

No significant differences in rate of institutionalization overall. Treatment was associated with increased rate of institutionalization (hazard rate 1.21, p=0.043) at 1 of 8 study sites. 

Not evaluated. Significant improvements in 

total NPI (fewer behavioral symptoms), No impact on CR depression, cognition, or function (ADLs).No influence of intervention on NH placement.

Intervention group had nearly doubled adherence to guidelines.Smaller decline in health-related quality of life for Intervention participants.CR Health care quality rated higher by CGs at 12 and 18 mos.

h, age 65+, 

Study authors suggest that case managers at one site may have had a “stronger propensity to recommend nursing home placement than in the other sites,” but reasons for why practices would differ were unclear. 

Use of community services increased 50% with case management, compared to 40% increase in control participants.

--- Social workers were usually 

the care managers, feasibility enhanced by linking dyads to existing community resources rather than duplicating across systems.

rican; ADL = activities of daily living; CES-D = Center for Epidemiologic Studies Depression Scale; CG = caregiver; CQLI = Caregiver Qual

cipient; GQ-SR = good-quality systematic review; IADL = Instrumental Activities of Daily Living scale; ITT = intention-to-treat; PCI = patient 

sted life years; STAI = State Trait Anxiety Disorder; Tx 1 = treatment 1; Tx 2 = treatment 2.
20

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Behavior Management Training (BMT) 

Summary impact of behavior management training interventions: A limited body of evidence 

suggests that BMT may improve CG depression, although this finding was not consistent. 

Studies where BMT was augmented by CR exercise or CG self-care instruction seemed to result 

in broader outcome effects, improving CR physical mobility and CG coping skills.

Studies represented in this section specified the use of BMT, which involves identification of 

probable triggers and consequences of CR behavior disturbance and devising strategies to reduce 

the frequency of problem behaviors in the CR. Two of four studies provided BMT training to CGs 

with mixed results (Table 3). One study (N=95) comparing routine medical care with eight weekly 

in-home BMT sessions/four monthly telephone follow-up calls demonstrated improvements in 

CG subjective reports of depression and burden, as well as lowered reactivity to CR behavior 

disturbance and improved CR quality of life. This study also demonstrated that BMT is feasible 

in the primary care setting.19 Another study (N=62) comparing four group trainings in behavioral

interventions over eight weeks to an equivalent number of group sessions providing care-related 

discussions and advice found no treatment effects between groups, but reported significant pre to 

post improvement in CR aggression scores within the treatment group.20

A third study (N=153) offered a combined program of exercise for the person with dementia 

while supplying BMT for the CG, and reported improved physical health, increased activity, 

and decreased depression for the CR, as well as a trend toward lower institutionalization rates, 

compared to usual-care controls.21

 No outcomes were measured or reported for the CGs in this 

study. This combined approach may yield positive outcomes for both members of the dyad. 

However, it is not possible to separately evaluate the efficacy of the treatment components, as the 

intervention group combined both BMT for the CG and exercise for the CR.21

One study educated 37 CGs on behavior management techniques through instructive pamphlets 

and compared that basic intervention with an enhanced intervention (N=39) that added 

pamphlets on CG self-care.22

 CGs in the enhanced care group demonstrated significantly higher 

ratings of general well-being after two years of intervention, but found no effects on CG mood.

In addition to the RCTs identified from previous systematic reviews, we included three good 

quality studies23-25

 found in the AoA compendium.2 One study demonstrated the applicability

of BMT interventions with Chinese-American CGs (N=55), resulting in less bother and lower 

depression for the treatment group but no difference in overall reported stress.23 Another study (N 

= 80) reported significantly lower CG distress about CR neuropsychiatric symptoms, but no change 

in burden for either treatment or control group.24 The third study of 143 CGs reported that the CG

treatment group had reduced emotional distress over CR agitated behaviors over time (compared to 

baseline), but there was no overall group effect for treatment on distress scores.25

 The findings of

these three studies are relatively consistent with those reported in previous studies.

Limitations of the literature: There was an overall lack of methodologic rigor, and only one 

study stipulated statistical considerations such as the power to detect a treatment difference or 

intention-to-treat analysis.19, 21

 Heterogeneity in the interventions delivered makes it difficult to 

combine findings across studies.
21

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

management training for caregivers of individuals with dementia

Teri, et al. 200321 Gormley, et al. 200120 Burns, et al. 200322

ients with 

153 CG living with CR who met NINCDS/ADRDA criteria for AD, randomly assigned to intervention or control.

62 individuals with dementia living with their CG.

167 dyads of indiv2duals with dementia and their CG randomized to Behavior Care or Enhanced Care. After 24 months, 76 pairs remained active, 30 bereaved, 14 placed in long-term care, and 47 lost to follow-up.

ng for CG in 

nd 4 monthly 

Combined exercise and CG in-home training in behavior management program “Reducing Disability in Alzheimer Disease” for 3 months. (N=76) 

4 group sessions over 8 weeks teaching behavioral interventions to CG including acting at level of precipitating and maintaining factors, using appropriate communication, accepting false statements by CR (not arguing), and using distraction techniques. Additional problemsolving for unsuccessful interventions. (N=34)

Enhanced Care provided same Behavior Care as control but with 12 additional pamphlets focused on improving well-being of CG, presented during primary care visits by masters-level health educator. Sessions no longer than 60 minutes, with 10-minute phone contacts between sessions. (N =39)

 with no 

Routine medical care. (N=77) Equivalent number of group sessions consisting of care-related discussions and advice about available 

services. (N=28)

Behavior Care provided 25 pamphlets focused on improving BMT repertoire of CG, presented during primary care visits by masters-level health educator. Sessions no longer than 30 minutes, with 10-minute phone contacts between sessions. (N=37)

stionnaire

e

Burden

Not evaluated. ZBI General Well-Being Scale

CES-D RMBPC

improve

burden, and 

vior prob

h post-tests 

p; improve

y at 6-month 

ntion group.

Not evaluated. No significant differences between 

groups in ZBI score post-intervention.

Enhanced Care group showed less bother (RMBPC) at baseline. Lower income and less education at baseline for Enhanced Care participants were controlled in subsequent analyses. General well-being improved significantly for Enhanced Care group over 2 years relative to Behavior Care group; but both groups improved. No significant group benefits over time for depression or risk of depression, though trends suggest possible benefit of Enhanced Care for mood over time.
22

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Teri, et al. 200321 Gormley, et al. 200120 Burns, et al. 200322

Physical mobility, depression, and institutionalization (MMSE, SF-36, SIP mobility, HDRS, CSDD, RMBPC, adverse symptom checklist)

BEHAVE-AD RAGE MMSEBDRS

Katz ADL scale, Lawton and Brody IADL scale, and MMSE were collected as part of the larger REACH battery.

 of CR qual

ntion group at 

imilar trend 

significant 

differences in 

Compared to routine care, significantly improved scores for physical functioning in intervention group at 3-month and 2-year follow-up, and significantly improved depression (based on direct rater observation and CG interviews) at 3 months. Less institutionalization due to behavior disturbance at 2 years for intervention group, statistically not significant. Higher baseline depression scores predicted significant improvement of intervention over control group at 3-month and 2-year follow-ups.

Baseline RAGE scores were modestly higher in the intervention group with no significant group differences in post treatment aggression scores. Within the intervention group, there was significant reduction in RAGE score from pre to post, but not within the control group. No significant changes in psychotropic prescribing for either group.

Not reported.

anual avail

omewhat 

aining and 

or consul

mplemented 

gists and 

Results can only be generalized as combined effect, as relative contributions of BMT and exercise were not evaluated.

Difference reported within group, but this analysis loses benefit of randomization. Comparison between randomized groups yielded no significant differences. Evidence from this study is not strong. 

No ITT analysis, but shorter length of time performing CG duties was only difference between completers and noncompleters. Blinding not part of protocol.

disease; ADL = activities of daily living; ADRDA = Alzheimer Disease and Related Disorders Association; BDRS = Blessed Dementia Rating 

Pathology in Alzheimer’s Disease rating scale; CES-D = Center for Epidemiologic Studies Depression Scale; CG = caregiver; CR = care recipi

ression and Dementia; GQ-SR = good-quality systematic review; HDRS = Hamilton Depression Rating Scale; IADL = Instrumental Activities 

on-to-treat; MMSE = Mini Mental State Exam; NINCDS = National Institute of Neurological and Communicative Diseases and Stroke; NPI = 

AD = Quality of Life in Alzheimer’s Disease; RMBPC = Revised Memory and Behavior Problem Checklist; SF-36 = Short-form health survey; 

Q = Short Sense of Competence Questionnaire; ZBI = Zarit Burden Interview.
23

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Individual Skills Training

Summary impact of individual skills training interventions: Most studies found no impact on 

CG’s sense of burden, anxiety, or quality of life, though two of six studies demonstrated that 

individual skills training for the CG ameliorates depression in CGs. CRs may benefit with 

slower declines in self-care when skills training includes a component targeting their ADL, and 

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

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 consistent evidence documenting impact of skills 

training programs on delaying or preventing institutionalization of the CR.

Six studies where CGs were taught new skills during individual interactions between the CG 

and study staff are described here. These interventions typically focused on combinations of: 

increasing the CG’s repertoire of problem solving strategies, modifying the environment to 

decrease hazard and reduce triggers of problem behaviors, and/or increasing CG’s sense of 

support and self-efficacy (Table 4a).

The studies on individual skills training allowed for examination of specific CG outcomes across 

studies, such as depression, mood, and other CG problems. A summary of the findings on 

specific CG outcomes are presented below.

CG depression outcomes. Two studies found significant reduction in CGs’ reported depressive 

symptoms. Buckwalter, et al. compared controls receiving two informational home visits and 

reading material about dementia to an intervention of in-home training to reduce environmental 

stressors followed by phone consultation.26

 The intervention resulted in reduced depressive 

symptoms at six months but not at 12 month follow-up. The second study examined 

individualized phone consultation focused on increasing self-efficacy compared with usual 

care.27

 Self-reported CG depression scores improved with intervention, which also significantly 

increased CG reports of perceived self-efficacy. This study also reported higher CG satisfaction 

with care when telephone consults targeted self-efficacy.

Outcomes for other CG problems. Reduction in negative CG responses such as anger26

 or 

upset/aversive response to problem behaviors28, 29 was reported for three programs that targeted 

environmental stressors through structured home visits.

Mood and problem behavior outcomes for CR. Some CG skills training studies reported 

significant improvements for CRs. One study focused on increasing the number of pleasant 

events scheduled for CRs, combined with teaching problem solving strategies to CGs, resulting 

in significant improvement in CG and CR ratings of the CR’s mood/depression.30

 One study 

reported less decline in self-care for the CR under a protocol that provided occupational therapist 

home visits teaching problem solving to the CG for behavioral triggers, combined with training 

for the CR in performingADL.29 Two studies28, 29 reported significant reductions in CR behavior

disturbance, but in one study this finding only held for dyads with non-spouse CGs.28 One 

study reported a significantly larger proportion of CRs remained at home at 12 month follow-up 

when their CGs received nurse’s individual supportive counseling and strategies for behavior 
24

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

management, compared to controls who received phone contacts at comparably scheduled time 

points.31 However, there were no differences between groups in numbers of CRs institutionalized

at this same follow-up, possibly indicating differences between groups at baseline, or other 

factors such as CR mortality, impacting on proportions remaining at home.

Limitations of the literature: There is some likely overlap between training offered in these 

studies and the clearly defined behavior management training techniques outlined in another 

section. For the most part, these good quality studies were well-controlled and characterized 

by intention to treat analysis when possible. There were high loss-to-follow-up rates in two 

studies, though they were not different in intervention and controls. However, unequal sample 

sizes, varying measures across studies, and differing recruitment strategies – some drawing 

from populations seeking help for dementia-related problems and others drawing from clinic 

populations – were common limitations.
25

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

kills training for caregivers of individuals with dementia

Gitlin, et al. 200129 Buckwalter, et al. 199926 Gerdner, et al. 200228 Wright, et al. 200131 Bass, et al. 200327

emen

ident 

88 

dy, 72 

Dementia patients with ADL dependence in 2 areas, difficult behavior and their family CGs. (N=171)

Informal CGs of community-dwelling individual with dementia or memory impairment. (N=245 completed study, missing data for 5, attrition of 28%)

Home CGs of individuals with Alzheimer’s disease. (N=241 yielding 237 complete records)

Family CGs of individuals with dementia previously treated for agitation. (N=93)

Primary family CGs of Kaiser patients who had dementia or memory loss coded in medical record. (N=182 completed first interview, 157 of those also completed 12-month follow-up interview)

oral 

ng CG 

eas

t nute 

 



ies 

vents 

Five home visits by occupational therapists providing CG skills training (environmental modifications, avoiding overstimulation, etc.) and CR ADL training. (N=93)

Progressively Lowered Stress Threshold model of care, individually tailored to problems in the home. Provided 3-4 hours of in-home training and bi-weekly follow-up phone calls for 6 months. (N=132)

Same as control plus individualized care plan presented at 2 in-home visits, 2 weeks apart, building structured routine for CR and modification of environmental challenges (reduce water temperature to prevent scalding, remove mirrors to reduce visual confusion). (N=132)

Individual supportive counseling and strategies for behavior management by nurse after baseline assessment during inpatient admission for 3 home visits (2, 6, and 12 weeks), then 2 phone follow-ups at 6 and 12 months post discharge. (N=68)

Telephone care consultation intervention by Alzheimer’s Association staff. Individual care plan outlines tasks and timelines. Biweekly followups decreasing to 1 and 3-month intervals, adjusted as needed. (60% of sample; N not reported.)

ical 

nfor

rt for 

blems 

list 

o 

9 

20)

No intervention, provided education materials and a safety booklet at the end of the study. (N=78)

Two in-home visits providing general information about dementia, referral to community-based services and groups, and reading material about dementia. Similar phone follow-up. (N=108)

Receipt of routine information and referrals for community-based services, case management and support groups, provided at 2 one-hour visits, 2 weeks apart. (N=105)

Contact by phone for data collection only, same time points as intervention group. (N=25)

Usual managed care services. (40% of sample; N not reported.)

s de

core 

Measured CG ratings of self efficacy and upset in managing dementia behavior.

POMSGDRS

Caregiver response to behavior problems. 

Caregiver Hassle ScaleCES-D MAI

T1 and T2 interviews:A 2-item index of satisfaction with the types of Kaiser services; an 8-item index of satisfaction with the quality of Kaiser services; a 5-item index of satisfaction with information received about the illness; CG depression measure similar to CES-D.
26

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Gitlin, et al. 200129 Buckwalter, et al. 199926 Gerdner, et al. 200228 Wright, et al. 200131 Bass, et al. 200327

y in 

ups 

trol 

sults 

en 

ent 

nt 

 solv

Reduced upset. Women reported increased self-efficacy in managing behaviors, and women and minors reported enhanced self-efficacy in managing functional dependency.

Significantly less depression in intervention group at 6 months, but not at 12-month follow-up. Anger-hostility, fatigueinertia, confusion-bewilderment, all significantly lower for intervention group than control at both 6 and 12-month followup.

CGs in intervention group had less aversive response to memory/behavioral problems than control participants. Spouses’ response to activities of daily living problems improved with intervention condition. 

No effect was demonstrated. Significantly less CG depres- sion (11 items from CES-D) 

in intervention vs. control. CGs in intervention group whose CR had not received specific dementia diagnosis rated higher levels of satisfaction with service quality, types of services, and information about the illness.

MBPCFIM

Not evaluated. MBPC BDRS 

CMAI

During a 1-year period: number of hospital admissions, emergency department visits, physician visits, and Kaiser case management visits 

nifi

o the 

ons 

 

 CR 

r 

tive 

ns 

. 

Fewer declines in IADLs and self-care, and fewer behavior problems in intervention group compared with controls at 3-month post-test.

Not evaluated. Effect of intervention on 

frequency of behavioral disturbance significant for non-spouse (younger) CGs only.

More CRs remained at home at 12-month follow-up in the intervention group (61% vs. 56% of control CRs), but proportionally fewer deaths in the treatment group (11% vs. 22%) may have contributed to this effect. The proportion institutionalized did not significantly differ between groups (28% Tx vs. 22% controls).

Less use of Kaiser case management and direct care community services with intervention. Less use of non-Alzheimer’s Association information and support services for patients with more severe memory problems with intervention. No differences in use of emergency department, hospital admissions and physician visits.
27

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Gitlin, et al. 200129 Buckwalter, et al. 199926 Gerdner, et al. 200228 Wright, et al. 200131 Bass, et al. 200327

er

eline 

eters 

.

ITT analysis; baseline recorded blind before group assignment.

CGs who were more depressed were more likely to drop out between 6 and 12 months, and institutionalization of their CR more likely. High attrition (28%) but no differential loss to follow-up.

Very high attrition (54%); similar in treatment groups and across research sites.The beneficial effect of the intervention on negative CG reactions was greater among spousal compared with nonspousal CGs. 

Large difference in group sizes may have contributed to Type II error.

Physicians and managed care providers blinded to group assignment.Population drawn from primary care and not limited to those seeking help with dementia-related problems.

f daily living; BDI = Beck Depression Inventory; BDRS = Blessed Dementia Rating Scale; CES-D = Center for Epidemiologic Studies 

CMAI = Cohen-Mansfield Agitation Inventory; CR = care recipient; CSDD = Cornell Scale for Depression and Dementia; DRS = Dementia 

ependence Measure; GDRS = Geriatric Depression Rating Scale; HDRS = Hamilton Depression Rating Scale; IADL = Instrumental Activities 

level Assessment Inventory; MBPC = Memory and Behavior Problems Checklist; MMSE = Mini Mental State Exam; POMS = Profile of 

ependent Living; SADS = Social Avoidance and Distress Scale; SR = systematic review; T1 = timepoint 1; T2 = timepoint 2; ZBI = Zarit 

 indicate that the two publications appear to be related and may be based on the same study
28

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Group Skills Training, and 

Combined Individual/Group Skills Training 

Summary impact of group skills training interventions: There is evidence that CG depression may 

improve with interventions that are individualized by in-home assessment and targeted to specific 

needs of the patient-CG dyad. 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.

Eight studies included in this grouping reported specific attempts to teach CGs new skills in 

group,32-36

 combined individual/group settings,37, 38 or group sessions combined with transportable 

training media.39 Skills training included management of CR behavior problems, CG stress, or 

identifying environmental problems such as poor lighting that might contribute to CR strain or 

injury, and most interventions also provided psychoeducation about dementia. Two studies were 

conducted in the same sample.34, 35

 

The studies on group skills training and combined individual/group skills training allowed for 

examination of specific CG outcomes across studies, such as depression, mood, and other CG 

problems (Tables 4b and 4c). A summary of the findings on specific CG outcomes are presented 

below.

CG depression. CGs who received the intervention rated improved mood over control conditions 

in three of the six studies. A study of the Minnesota Family Workshop (MFW) program provided 

14 hours of group skills training sessions to 75 CGs to increase coping and stress management 

skills; educate about dementia; and develop care strategies, compared to 45 participants in a 

wait-list control condition.34

 This intervention resulted in significant improvement in self-ratings 

of CG burden, sense of nurturing, and aversive response to CR behavior. A subsequent study 

(N=215) by the same investigators assessed the long-term effects of a MFW-based program on 

CG distress, and found treatment benefits in CG attitude and distress at six months, but these 

effects were no longer significant at one year.

36

 In another study, parallel intervention groups 

(one focused on anger management cognitive-behavioral intervention and one focused on 

depression cognitive-behavioral intervention) were compared to wait-list control with resulting 

significant reductions in depression and anger/hostility for both interventions compared to 

control.32 A third study investigated the impact of two distinct training groups, the first trained 

CGs to use behavior management techniques to reduce CR aversive behaviors, the alternate 

group taught CGs to change their own coping behaviors.37

 Both interventions combined 

individualized in-home assessment and trainings with a three-hour group workshop to teach CG 

skills identified by the assessment. Both intervention groups were compared to a control group 

that received similarly scheduled workshops and in home visits with supportive empathy, but the 

didactics were general (e.g., information about stages of dementia) rather than individualized. 

The “self-change” group reflected significant improvements in CG depression at post-test, three 

month, and six month follow-up, while the “patient change” intervention resulted in significant 

CG depression reductions at post-test and six-month follow-up. Both intervention groups also 

rated improvements over control group participants in patient problem behaviors at posttest 

and six months, with the “patient change” group additionally documenting reduced problem 

behaviors at three months.
29

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

CG satisfaction with CR interactions. One study provided group workshops training CGs to 

stimulate the minds of their CR, and compared outcomes to a placebo group organized around a 

passive activity (e.g., watching television) and a control group that received assessment contacts 

only. On follow-up measures, CGs in the intervention group reported significantly higher 

satisfaction with interactions with the CR, though there were no significant effects for improved 

mood, burden, or quality of life.33

Other CG outcomes. One study combined a group workshop teaching stress management skills, 

with eight in-home behavior-management sessions, and compared this to minimal support 

control in which CGs were provided brief, structured telephone support calls with a target time 

of 15 minutes per call.38

 Both intervention and control groups improved significantly over 

baseline measures, reporting less bother, increased satisfaction, and fewer problem behaviors 

at six-month post-test. An analysis by race determined that the skills-training intervention was 

more effective for reducing bother among African American CGs, whereas the minimal support 

control condition was more effective for White CGs. African American CGs were significantly 

less receptive to the minimal support phone contacts, with calls lasting an average of two fewer 

minutes in duration compared with calls to White CGs. The desire to institutionalize differed by 

race independently of intervention group: desire to institutionalize increased among White CGs, 

while scores for African American CGs on this measure remained stable.38

 

We examined an additional group skills training intervention suggested by a technical reviewer. 

The Savvy Caregiver Program is a transportable, packaged program for CGs of adults with 

dementia modeled on the MFW program.40

 The package includes a trainer’s manual, a CG’s 

manual, and a CD-ROM or videotape meant to complement the CG manual. The program could 

be offered in the community by governmental, educational, medical, or social service provider 

organizations, and involves six two-hour group sessions led by a trainer with an educational 

or clinical background. A randomized trial of the Savvy Caregiver program included 52 CGs 

in three states, and assessed CG psychosocial outcomes after six months.39 The study reported

significantly improved scores on measures of confidence and distress among CGs in the 

intervention group compared with wait-list controls. The attrition rate was high (nearly 50%), 

however, and the study authors cited logistic difficulties in retaining participation and collecting 

data. Although the generalizability of this study is consequently limited, the promising findings 

warrant more rigorous investigation of this packaged program on a larger scale. 

Limitations of the literature: The studies reviewed here represent skills-focused training in 

groups or combined with individual training, but there is likely to be considerable variability 

in methods and deployment of the groups. The skill level of the trainer, the setting, frequency 

and duration of contacts, the validity of the training material and relevance to the outcome 

variables of interest, and method of recruitment are likely to contribute to unmeasured variance 

and differences in outcomes across studies. Intervention and control group sizes tended to be 

small and loss-to-follow-up high, a situation common to studies with frail and/or distressed 

populations. Studies tended to differ on policy for inclusion/exclusion of data from follow-up 

analyses if the CR had died during the study; the degree to which this could confound measures 

such as burden and depression is suspect but unknown. 
30

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

 training for caregivers of individuals with dementia 

Hepburn, et al. 2007 (The Savvy Caregiver Program)39

Hepburn, et al. 2006 (Partners in Caregiving)36 Hepburn, et al. 2001 (The Min- nesota Family Workshop)34 Ostwald, et al. 199935 Coon, et al. 200332

e r’s 

mod

ir

Family CGs of older adults with dementia recruited by agencies in 3 states.(N=30) There were 9 Savvy CG programs with groups ranging from 3 to 10 CGs. 

215 CGs giving care to a community-dwelling relative with dementia, who were expecting their CR to remain in the community for the 1 year study duration. 

Primary CGs of communitydwelling individuals with dementia. (N=117)

Primary CGs of community-dwelling individuals with dementia who had displayed behavior problems. (N=117 of whom 94 dyads completed the program.)

Female CGs of community-dwelling individuals with physician-confirmed dementia (primarily Alzheimer’s and stroke). (N=169)

u- 

, 

 

o 

f 

A 6-session, packaged program derived from the Minnesota Family Workshop that includes a trainer’s manual, CG manual, and CD-ROM or videotape. The packaged program can be offered by a variety of organizations or groups, with leadership typically provided by persons with an educational or clinical background.

Tx 1: Day-to-day caregiving (N=79)Tx 2: Decision-making (N=72)Each group met for 2 hoursper week over 6 consecutiveweeks. Curricula focusedon developing a more clinical perspective on caregiving. Content and resultswere similar between Txgroups, and data were combined in the analysis.

Seven weekly training groups to improve coping and stress management; provision of information about dementia, develop strategies for care. Follow-up measures at 3 months after last training. (N=72)

Seven weekly training groups to improve coping and stress management; provision of information about dementia, develop strategies for care. Follow-up measures at 3 months after last training. (N=60)

Two intervention groups:1) Anger management cognitivebased training 

(N=41)

2) Depression management cognitive behavioral 

training (N=45) - 8, 2-hour weekly group sessions, followed by 2 monthly booster sessions.

that 

 

ion) 

o

s 

e 

on). 

 

only; 

red 

me 

Wait-listed, no-attention control group (N=22), who were offered the training sessions after the 6-month intervention period.

Wait-list, no attention control group (N=64) with no contact with study staff except for data collection. Controls were enrolled in a PIC program after the completion of one-year data collection.

5-6 month wait-list control. (N=45) Control group CGs participated in the training intervention after data had been gathered from the treatment group CGs. 

5-6 month wait-list control (N=34)

Wait-list control with initial assessment, 3-4 month follow-up assessment, and brief intermittent phone calls to maintain interest in study. Opportunity to participate in choice of intervention at end of 2nd assessment. (N=44)
31

 Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Hepburn, et al. 2007 (The Savvy Caregiver Program)39

Hepburn, et al. 2006 (Partners in Caregiving)36 Hepburn, et al. 2001 (The Min- nesota Family Workshop)34 Ostwald, et al. 199935 Coon, et al. 200332

e

ion

c

A composite distress score computed as a weighted composite of 12 scales that include CES-D, Zarit Burden Scale, Bradburn affect scale, REACH anxiety scale

CES-DZarit Burden Scale STAIBACSDecisional Conflict ScaleComposite measure for distress

RMBPCBACS CES-D Zarit Burden Scale

CES-D Revised Caregiver Burden Scale RMBPC

RSCSE STAXIMAACLWays of Coping Checklist-Revised BDI

p, 

ined 

n

me 

wait

ve 

is 

tis

Distress at 6 months did not change among control CGs but decreased significantly among CGs in the Tx group. Tx CGs also reported a significantly greater sense of mastery (confidence) at 6 months.

Distress level increased and attitude about caregiving worsened among control CGs but remained stable at 6 months among Tx CGs. These advantages were no longer significant at 12 months. 

Within treatment group, significant pre-post increase in nurturing score (less subordination of self to CR) and decreased reaction to behavior disturbance of CR. Compared to control group, intervention CG demonstrated increased nurturing, decreased reaction to behavior, lower depression and burden.

Reduced negative reaction to disruptive behavior and reduced burden in intervention group.

Significant reductions in anger/hostility and depression, and increase in self-efficacy in both intervention groups relative to control participants. 

list: 

 for 

mes; 

tion

ADL/IADL and disruptive behaviors measured as covariates; not evaluated as outcomes of the intervention.

--- MMSE, Lawton ADL, and 

RMBPC were measured as covariates; not evaluated as outcomes of the intervention.

Cognitive Performance Test MMSERMBPC

Not evaluated.

Not evaluated. --- Not evaluated. No reduction in disruptive behaviors. Not evaluated.

High attrition: 102 CGs were recruited into the study and completed baseline questionnaires, but only 51% retention and follow-up was achieved.

The study authors combined established scales to develop a composite distress measure; study author comments that the measure needs further testing and development.

Small sample. Population accessed as result of request for help with problem.

Dropouts and completers comparable on baseline demographics except for patient age.

Small but significant effect sizes. Participants not recruited from distressed population. Participation limited to women.

 daily living; BDI = Beck Depression Inventory; BDRS = Blessed Dementia Rating Scale; CES-D = Center for Epidemiologic Studies Depres

= Cohen-Mansfield Agitation Inventory; CR = care recipient; CSDD = Cornell Scale for Depression and Dementia; DRS = Dementia Rating 

nce Measure; GDRS = Geriatric Depression Rating Scale; HDRS = Hamilton Depression Rating Scale; IADL = Instrumental Activities of Daily 

essment Inventory; MBPC = Memory and Behavior Problems Checklist; MMSE = Mini Mental State Exam; POMS = Profile of Moods States; 

g; SADS = Social Avoidance and Distress Scale; SR = systematic review; T1 = timepoint 1; T2 = timepoint 2; ZBI = Zarit Burden Interview.

 indicate that the two publications appear to be related and may be based on the same study.
32

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Table 4c. RCTs of combined individual skills training and group workshops for caregivers of individuals with dementia 

Study Bourgeois, et al. 200237 Burgio, et al. 200338

Population 

(N)

Patients meeting NINCDS-ADRDA criteria for probable 

AD who also had mild behavioral disturbance, and their 

primary (spouse spending at least 8 hours per day with 

CR) and secondary (identified by primary CG, spent minimum 4 hours per day with patient) CGs. (N=76 enrolled, 

63 completed the intervention period)

White and African American CGs of individuals with dementia and at least 3 problem 

behaviors. (N=118)

Intervention (N)Two distinct 12-week skills training groups: 1) train CG to 

change CR behavior (N = 22); and 2) train CG to change 

own coping behaviors (N = 21). Initial meetings individual

at-home assessment for two 1-hour visits, then 3-hour

workshop in group, then 9 in-home visits for skills training. Follow-up measures 3 and 6 months post intervention. 

Stress management and BMT skills training 

through group workshop, then 8 in-home BMT

and cognitive restructuring sessions.

Control

(N)

Comparable attention at workshops and in-home visits,

but no training except didactics on stages of adjustment to 

dementia (and Problem Behavior Tracking forms reviewed 

at home visits. Provided generalized rather than individual 

information and empathy). (N=20)

Minimal support control.

CG 

outcome 

measures

Caregiver Strain Scale

Spielberger Anger Expression Scale

Spielberger Anxiety Inventory

Caregiver Self-Efficacy Assessment

Perceived Stress Scale

CES-D

Caregiver Health Index

Caregiver mood - single item on a scale (1-9)

PAC

LSNI

CES-D

CG results Mood ratings improved relative to controls in “selfchange” CG group at post-test and 3 and 6-month followups. Mood improved for “patient change” CGs relative to 

controls at posttest and 6-month follow-up.

No changes in depression or anxiety over 6 

months. Both groups improved, reporting less 

bother and increased satisfaction with leisure 

activities.

CR 

outcome 

measures

MMSE

OARS

BEHAVE-AD

RMBPC

CR results Reduced mean frequency of problem behaviors in “change 

patient behavior” group compared to control at post-test 

and 3 and 6-month follow-up. Reduction in behavior

problems for “self-change” CG group at post-test and 

6-month follow-up.

Significantly fewer problem behaviors in the

CR were noted by CGs in both treatment and 

control groups.

Comments Research assistants blinded to group assignment administered measurements. Results indicate that dyads might 

benefit most from interventions specifically targeted to 

their needs (CG mood vs. care recipient behavior disturbance).

Staff not blinded to group assignment, but assessment and intervention always conducted by 

separate individuals. Six-month follow-up data 

include measuresfrom CG whose CR had died 

– therefore,sample size changes on measures 

that were no longer appropriate. Different effects 

forAfricanAmerican versus White, and spouse 

vs. nonspouse CGs in secondary analyses.

Abbreviations: BEHAVE-AD = Behavioral Pathology in Alzheimer’s Disease rating scale; BMT = Behavior Management Training; CES-D = Center for Epidemiologic Studies Depression Scale; CG = caregiver; CR = care recipient; GQ-SR = good-quality systematic review; LSNI = Lubben Social Network Index; MMSE = Mini Mental State 

Exam; NINCDS-ADRDA = National Institute of Neurological and Communicative Diseases and Stroke – Alzheimer Disease and Related Disorders Association; OARS = Older Americans Resource and Services Multidimensional 

Functional Assessment Questionnaire; PAC = Positive Aspects of Caregiving scale; RMBPC = Revised Memory and 

Behavior Problem Checklist.
33

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Individual, Group, and Combined Individual/Group Supportive

Counseling 

Summary impact of individual, group, and combined individual/group supportive counseling 

interventions: 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 long-term 

improvements in mood and self-rated health for the CG, but this was a very resource-intensive 

intervention and replicability should be evaluated.41-44

 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. 

Studies were included in this group when supportive behaviors were an intentional focus of 

treatment. Six studies in this collection employed supportive interventions, including empathy, 

emotional support, and identifying sources of support in the environment.41-43, 45-47

 

One of the six studies reported on individual supportive counseling with cognitive-behavioral 

problem solving focus by a nurse care manager.

45

 Two studies focused on CG group counseling 

protocols with: education about dementia, problem-solving, stress management, provision 

of emotional support, cognitive reappraisal;46

 and coping strategies, problem-solving, and 

identifying social supports.47

 These three studies are shown in Table 5a. There were no 

significant treatment effects on CG depression, burden, or anxiety for any of these three studies. 

However, Haley and colleagues reported that CGs trained in affective regulation for coping 

showed significant improvements in affective regulation,46

 and Hebert, et al. documented 

significantly less CG aversive reaction to CR behavior disturbance with coping/problem-solving 

supportive interventions.47

Three studies that combined individual counseling and support group sessions are shown 

in Table 5b. One study by Zarit, Anthony, & Boutselis (N=119) compared an intervention 

combining eight weeks of individual and family therapy, to eight weekly support group sessions, 

with both compared to wait list control (eight weeks, then enrollment into group).48

 All groups, 

including the control arm, responded with improved mood and burden; there were no group 

treatment effects. 

In a series of reports, Mittelman and colleagues reported on a trial of the New York University 

Caregiver Intervention conducted between 1987 and 2006. The intervention involved four months 

of individual family counseling followed by weekly support groups offering psychoeducation 

on BMT, identifying social supports, and enhancing communication, compared to usual care at

an Alzheimer’s Disease Center.

41-43, 49 CGs in these studies responded to the intervention with

significantly reduced depression, sustained as long as three years into follow-up.42, 43 This approach 

combining individualized assessment with supportive group sessions also significantly reduced risk

of institutionalization for the CR, with longer median length of stay in the home compared to usual 

care.41, 49 The initial analyses included 206 CGs,41, 43 and subsequent analyses of the continuing trial 

(N=406) reported long-term improvements for the CG in social support, stress appraisals, and selfrated health, as well as delayed nursing home placement for the CR.42, 44, 49
34

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Limitations of the literature: There is definitional and functional overlap with case management, 

BMT, and skills-focused studies reported earlier; supportive counseling often included problemsolving and teaching of skills, and all interventions likely included some element of supportive 

empathy, even when that was not the targeted intervention. Some studies excluded CGs whose 

loved one was institutionalized or had died during the study from the final analysis, while others 

included some but not all CGs who no longer had a CR with dementia in the home at the time of 

final follow-up measurement. Recruitment strategies differed in that some studies sampled from 

CG populations that were seeking help for an identified behavior problem, while others drew 

from a more general Alzheimer’s Association or dementia clinic population. 
35

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Table 5a. RCTs of individual counseling or group support for caregivers of individuals with dementia

Study Roberts, et al. 199945 Haley, Brown & Levine 198746 Heber, et al. 200347

Population 

(N)

CGs of cognitively-impaired 

home-dwelling individuals. 

(N=77)

Family CGs of communitydwelling individuals with 

dementia. (N=54)

Primary CGs of community dwelling individuals with dementia and 

one+ behavior problem; CGs report 

moderate to severe burden on scale. 

(N=118 in final analysis after death 

and institutionalization of 25 CR)

Intervention 

(N)

Individual counseling: 

Nurse provided up to 10 

supportive, individualized 

problem-solving (cognitive 

behavioral) counseling sessions over 6 months. Measures at baseline, 6 and 12 

months. (N=38)

Group 1: structured provision 

of information about dementia, 

emotional support, and problem 

solving. (N=21)

Group 2: similar to Group 1 but 

added material on stress-management, relaxation, cognitive 

reappraisal. (N=22)

Both groups: 7 weekly 1.5 hour 

sessions followed by assessment; then 2 sessions 2 weeks 

apart; then final group after 1 

month follow-up assessments.

Support group: 

15, 2-hour weekly psychoeducational group sessions teaching cognitive 

coping strategies, problem-solving 

and identifying supports. Strong focus on behavior problems. Assessed 

blindly before randomization and 

again at 16 weeks. (N=79)

Control (N) No counseling, complete 

measures at baseline, 6 and 

12 months. (N=39)

Waitlist control assessed at 

equivalent intervals to intervention group. Later given opportunity to participate in identical 

groups to study. (N=11)

Referred to existing, traditional support group through Alzheimer’s Association or other health care group 

in Quebec. (N=79)

CG 

outcome 

measures

Caregiver Burden Interview

PAIS 

Health Utilization Questionnaire 

Duke Social Support Interview 

Indices of Coping

BDI 

LSIZ 

ECR 

HDLF

RMBPC

ZBI 

STAI 

Inventory of Socially Supportive 

Behaviors 

14-item Ilfeld Psychiatric symptoms 

Index

CG results No significant treatment effects for distress, burden, or 

psychosocial adjustment.

No significant group effects 

on measures of psychological 

and social functioning. Use of 

emotional discharge for coping, 

and use of affective regulation 

for coping showed significant 

effects for training.

No treatment group differences 

in burden, depression, or anxiety. 

Significantly greater reduction in 

reaction to behavior disturbance for 

study intervention group. 

CR 

outcome 

measures

Reisberg’s Stages of Cognitive Decline; Barthel Index; 

% institutionalized within 1 

year

Not evaluated. RMBPC

CR results 18% in intervention vs. 31% 

in control were institutionalized within 1 year of followup. That all CGs who were 

sons were randomized to 

control group may confound 

these results. 

Not evaluated. RMBPC change, treatment vs. 

control:

Frequency -0.07 vs. 0.12 (p=0.06)

Disruptive behaviors frequency: 

-0.06 vs. 0.15 (p=0.08)
36

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Study Roberts, et al. 199945 Haley, Brown & Levine 198746 Heber, et al. 200347

Comments Some whose relatives were 

institutionalized or died prior 

to follow-up measures completed questionnaires, others 

did not. Dropouts indicated 

more psychological distress 

at baseline.

Participants not referred for 

distress, levels of baseline 

distress highly variable across 

participants. 

Excluded from final analyses 1 CG 

whose CR had died (1% of control 

group) and CGs whose CR had 

been institutionalized (15% of treatment group; 18% of controls)

Abbreviations: BDI = Beck Depression Inventory; CG = caregiver; CR = care recipient; ECR = Elderly Caregiver 

Family Relationship; GQ-SR = good-quality systematic review; HDLF = Health and Daily Living Form; LSIZ = 

Life Satisfaction Index; PAIS = Psychological Adjustment to Relative’s Illness; RMBPC = Revised Memory and 

Behavior Problem Checklist; STAI = State Trait Anxiety Disorder; ZBI = Zarit Burden Interview.
37

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Table 5b. RCTs of combined individual counseling and support group for caregivers of individuals 

with dementia

Study Mittelman, et al. 2004 (NYU 

Caregiver Intervention) 42, 44, 49

Mittelman, et al. 199543

Mittelman, et al. 199641

Zarit, Anthony, & Boutselis 

198748

Population 

(N)

Spouse CGs of home-dwelling 

individuals with Alzheimer’s 

disease, naming one additional 

relative in area. (N=406, with 

223 completing 5 year follow-up)

Spouses of community-dwelling individual with diagnosis of 

Alzheimer’s dementia, naming additional relative in area. 

(N=206)

Family member primary CG 

of individuals with dementia. 

(N=184 initial assessment, 119 

completed)

Intervention 

(N)

Six sessions of individual and 

family counseling, weekly support groups after 4 months with 

availability of crisis counseling 

as needed. Topics individually 

determined, include BMT, support, enhancing communication. 

Interviewed every 4 months 1st 

year, then every 6 months until 2 

years after death of CR or refusal. 

(N=203)

Six sessions of individual and 

family counseling, weekly support groups after 4 months with 

availability of crisis counseling 

as needed. Topics individually determined, include BMT, 

support, enhancing communication. Interviewed every 4 

months 1st year, then every 6 

months until 2 years after death 

of CR or refusal. (N=103)

1) Support group, 8 weekly 

sessions providing information about disease, problemsolving, BMT, identifying 

supports. (N=44)

2) Individual and family counseling, same format as above 

but individually and familyfocused. (N=36)

Control (N) Usual care at NYU Alzheimer’s 

Disease Center (N=203)

Usual care at NYU Alzheimer’s 

Disease Center (N=103)

Wait-list control assigned to 

intervention after 8 weeks 

with follow-up evaluation; 

post-treatment data included in 

assessment of effects at 1 year. 

(N=39)

CG outcome 

measures

GDRS

Self-rated health assessed using 

a questionnaire adapted from 

OARS

1995: 

GDRS 

MBPC

Stokes Social Networks Scale

Test adapted from OARS 

FACES III Questionnaire

1996: 

Kaplan- Meier survival analysis

Older Americans Resources and 

Service questionnaire

Geriatric Depression Scale

MBPC

Changes in CG’s reports 

of stress; improvement in 

management of CR’s problem 

behaviors; increased use of 

social support; CG’s perception of treatment benefits.

Revised Burden Interview

BSI 

MBPC

Caregiver Change Interview

CG results Significantly greater change on 

depression measure in intervention group compared to usual care 

with intervention group improving. Significant treatment group 

effects of lower depression scores 

maintained through year 3 of 

study.

Self-rated health was significantly 

better in the treatment group during the first 2 years of follow-up.

Intervention group significantly 

less depressed at 8 month measure (Mittelman 1995).

All groups, including control, 

reported subjective improvement, lower burden, and lower 

psychiatric symptoms over 

time, no significant group 

effects.

CR outcome 

measures

Time to nursing home placement.

GDS measured but analyzed as a 

covariate only.

1996: 

GDRS 

Time to institutionalization

Not evaluated.
38

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Study Mittelman, et al. 2004 (NYU 

Caregiver Intervention) 42, 44, 49

Mittelman, et al. 199543

Mittelman, et al. 199641

Zarit, Anthony, & Boutselis 

198748

CR results 28.3% reduction in nursing home 

placement with Tx compared 

with control dyads (adjusted 

HR=0.717, p=0.025). Reduction 

in time from baseline to nursing 

home placement was 557 days: 

usual care = 1,209 days; enhanced 

counseling and support group 

= 1,766 days (model-predicted 

median).

Median length of stay at home 

from baseline was significantly 

longer for treatment group. 

Risk of institutionalization 

lower for intervention group, 

particularly for mild-moderate 

dementia, 

Not evaluated.

Comments Baseline depression significantly 

lower in treatment group. Used 

ITT analysis. Results robust 

across CG gender and severity of 

dementia. Unblinded counselors 

conducted follow-up assessments.

Used ITT analysis. High attrition after first assessment (36%) attributed to 

family members’ expressed 

disappointment that intervention was focused on them, not 

cure or help for CR.

Abbreviations: BMT = behavior management training; BSI = Brief Symptom Inventory; CG = caregiver; CR = 

care recipient; GDS = Global Deterioration Scale; GDRS = Geriatric Depression Rating Scale; GQ-SR = good-quality systematic review; HR = hazard ratio; ITT = intention-to-treat; MBPC = Memory and Behavior Problems Checklist; NYU = New York University; OARS = Older Americans Resource and Services Multidimensional Functional 

Assessment Questionnaire. 

Columns separated by a dashed line indicate that the two publications appear to be related and may be based on the 

same study.
39

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Widely Cited Psychosocial Intervention Studies that

Were Excluded from this Review

We reviewed a total of 78 primary studies gleaned from 11 systematic reviews for this evidence 

synthesis. We excluded 48 studies when: they were not RCTs (N = 12); sample size was less 

than 50 (N = 23); not enough information was supplied to quality rate (3); they had group 

differences at baseline (1), and/or they had differential loss to follow-up (1). 

Six of the 48 excluded studies have been cited frequently, occurring in five or six of the 11 

systematic reviews. These six studies used a variety of interventions and reported mixed results. 

One study (N=36 CGs) used a six-week behavioral intervention for sleep problems and found 

significant improvements in sleep patterns at three-month follow-up, but no effects on CG 

mood or burden.50

 Another study provided counseling and information about psychological and 

practical home-based techniques, such as orientation and memory management strategies, to 30 

patients with newly diagnosed dementia and their families. At 18-month follow-up, depression 

and anxiety had increased among CGs in the control group but not in the treatment group, and 

more CRs in the control group had been institutionalized compared with the treatment group.51

 

An RCT (N=41 CGs) of a structured support group that held two-hour sessions weekly for 

eight weeks found no effects on CG mood or burden.52

 A study that provided CG education, 

stress management, and coping skills training in 14 sessions over 28 weeks reported significant 

reductions in CR behavioral disturbance in the intervention group (N=14), and significant CG 

reductions in depression in the intervention group compared with controls (N=28).53

 An eightweek intervention RCT (N=35 CGs) that compared a skills-training cognitive-behavioral group 

intervention to a support group that emphasized information-giving and social exchanges found 

no differences in CG burden or psychological distress.54

 

Technology-based Interventions

Summary impact of technology-based interventions: There is insufficient evidence from 

controlled empirical studies on the effectiveness of technology-based interventions. 

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 costeffectiveness of ICT interventions.

Three systematic reviews assessed the effectiveness of networked information and 

communications technology (ICT) interventions in supporting CGs, and included studies 

published through 2005,55

 2006,56 and 2007.57 Although two reviews56, 57 were largely descriptive 

and did not appraise the quality of the included studies, because they provided a comprehensive 

overview of ICT services available for individuals with dementia and their CGs, we included 

them in this review.

One review57

 included 15 papers that described five interventions: 1) COMPUTERLINK, a noninternet based computer network with an unmoderated forum that offers e-mail, an electronic 

encyclopedia, anonymous question and answers to a nurse moderator, and a decision support 

module; 2) Telephone-Linked Care (TLC), a computer-mediated automated telephone support 
40

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

system that offers automated CG stress-monitoring and counseling information, message and 

bulletin board support group, and a respite call for CGs; 3) Computer-Telephone Integration 

System (CTIS), a computerized system using Spanish and English text and voice screen phones 

to facilitate messaging, local information access, and support group calls; 4) AlzOnline, which 

offers an Internet library, message board, expert forum, and web- and telephone-based education 

classes; and 5) Caring for Others, an Internet-based and group videoconferencing discussion 

forum. The TLC and CTIS interventions were part of the REACH study.58 The studies were 

RCTs of six to 18 months duration, except for one study that used a single-group pre/post-test 

design to evaluate the AlzOnline intervention. The sample sizes in each study ranged from 21 

to 77 per group, and the comparator interventions varied in each study from no intervention, 

minimal support, information booklets, and family therapy. The reviewers noted that the 

interventions provided benefits to stress and depression for some but not all CGs, and that 

intervention usage varied between studies and was generally low.

57

 The lack of quality appraisal 

of included studies was a limitation in this review.

A meta-analysis55

 combined three RCTs to determine the pooled effect of the 

COMPUTERLINK,59 TLC,58

 and CTIS60 interventions on CG depression. Although increases

in subjective measures of social support, knowledge, decision-making confidence, and mental 

health were observed among the studies, the meta-analysis showed no significant overall effect 

of the technology-based interventions on depression. Heterogeneity in the types of interventions 

and comparators make it difficult to combine the findings across studies. The reviewers assessed 

the methodological quality of included studies and found that the overall quality was poor, citing 

unclear methods for randomization; lack of blinding; and potential for selection bias.55

A descriptive review of ICT-based services identified four websites and 20 publications that 

addressed the needs of CRs and CGs with regard to symptoms.56

 The interventions included 

multimedia support programs for CGs delivered via Internet, and telecare devices such as 

videophones to facilitate communication between CGs and healthcare providers. Interventions 

directed at the CR included devices and applications such as memory aids that provide reminders 

for daily tasks and medicine. The evidence consisted largely of case studies and small (n<50) 

pre- and post-test/post-test only studies, although there was one large RCT (n=299) of a 

multimedia Internet-based support program that provided text material and videos that modeled 

positive caregiving strategies. The RCT found significant improvement after 30 days in CG 

depression, anxiety, strain, stress, self-efficacy, intention to seek help, and perception of positive 

aspects of caregiving.61

 Uncontrolled studies of electronic memory aids for the CR and other 

assistive technologies reported improvements in carrying out daily activities and reductions of 

everyday memory and planning failures, suggesting the potential for such devices to support 

independence in the CR and reduce CG burden. 

This review also identified 13 interventions that focused largely on wandering behaviors.56 Devices 

included GPS-location systems; boundary alarms activated by wristband; floor-lighting systems 

activated upon wandering detection; communication systems instructing the patient to return

to bed after failure to return for a pre-defined period of time; cooking monitoring systems; and 

alarms alerting the CG of wandering behavior. The evidence consisted of case studies, crosssectional studies, or single-group, pre- and post-test/post-test only studies, and the settings included
41

Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

residential homes, nursing homes, and hospital settings. As one example, the Safe House Project 

used a single-group, post-test study of 19 families to evaluate a web-based monitoring system 

that included power, water, and door sensors as well as cameras. Fourteen out of 16 CGs in this 

study reported that the “system made life easier (e.g., peace of mind; added security; easier to keep 

track of individual with dementia)” and 11 out of 16 reported that “the system positively changed 

how the CG spends his/her time, e.g., more free time and more time for self.”62

 The devices in 

other studies were generally found to be effective, reliable, and successful in detecting wandering, 

locating lost patients, and reducing patient and CG stress. More rigorous trials are needed to assess 

the feasibility and effectiveness of these devices in broader use within VA.

Limitations of the literature: Although there is potential for some assistive technology devices to 

reduce CG burden by improving the independent function of the patient and by increasing patient 

safety, the interventions included in these reviews were generally limited in design by the lack 

of a control group. Heterogeneity in the types of interventions makes it difficult to combine the 

findings across studies. 

Respite Care

Summary impact of respite care: Although a systematic review of respite care found small, 

statistically-significant improvements on some outcome measures, 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 marked 

improvements in health and well-being in comparison to control groups, or compared to CG’s 

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 or sustained reductions in measures of 

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

continue caring. Day care services were best studied, and the evidence for benefit for CGs and 

CRs was mixed. Time freed up by day care did not necessarily reduce the total amount spent on 

caregiving. 

A 2004 systematic review compiled for the UK National Coordinating Center for NHSNHS 

Delivery and Organization Research & Development reviewed the effectiveness and costeffectiveness of respite services for CGs of people with dementia.63 The review identified 45

articles published from 1985 through 2003 that reported results on several forms of respite 

services. Fifteen of the 45 studies were conducted in the US, and 16 were conducted in the UK. 

The remaining studies were conducted in Europe (n=8), Canada (n=4), and Australia (n=2). Day 

care was the intervention most frequently studied. 

The review examined the following outcomes:

1) Effectiveness in relation to CG’s health and well-being

2) Effectiveness in relation to CRs’ health, well-being, and dementia-related symptoms

3) Impact on the use of other services

4) Cost-effectiveness in relation to CG’s and CRs’ health and well-being
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

Given the comprehensive and in-depth nature of the NHS evaluation, we quote findings 

directly from the NHS report on the effectiveness of each type of respite care, including costeffectiveness when evidence was available. In this report we refer to the findings on four forms 

of respite care that are available or might be feasible to provide in VA: 

1) Day care – planned services provided outside of the home, not involving overnight stays 

2) In-home respite services – involves a paid care worker coming into the family home to 

“sit” with the care recipient

3) Institutional/overnight respite – allows breaks away from the family home for the CR for 

one or more nights 

4) Video respite – uses a tailored video to occupy the CR’s attention, thus freeing up the 

CG’s time for a mini-break

Day Care Services

The NHS report identified 21 studies on day care services. Below is the summary of findings on 

day care services: 

“Many CGs placed a high value on day care services, perceiving benefits for both themselves 

and the person with dementia. However, problems relating to day care attendance (e.g., lack 

of transportation, or the experience/belief that the patient became more confused when moved 

from home) acted as barriers to usage for some CGs. Few studies attempted to collect the views 

of people with dementia themselves, but there was some evidence to suggest patients enjoy the 

company, the sense of belonging and the activities provided. The evidence about the impact 

on CGs of using day care was unclear. Some studies showed demonstrable improvements in 

physical health, stress and psychological well-being, yet others showed no change. The evidence 

about the impact on people with dementia of day care attendance was unclear. Some studies 

showed improvements or stabilization, whereas others showed no positive effects. The mixed 

results are likely to reflect issues such as: weaknesses/differences in study design; the wide range 

of outcome measured used; study timescales; differences and/or deterioration in disease severity; 

differences in the frequency and amount of day care used. Time freed up by day care did not 

necessarily reduce the total amount spent on caregiving. There was some evidence to suggest 

that day care attendance might have a preventative effect on entry to long-term care. Two of 

four economic evaluations suggested that day care might be cost-saving, whereas the other 

half suggested that day care might provide greater benefits but at a higher cost as compared to 

standard care. All four studies suggested that the benefits of day care might be similar or greater 

than those achieved through standard care.”63 

In-home Respite

The NHS report identified eight studies on in-home respite services. The studies used a variety 

of methods and considered different types of outcomes. The in-home visits typically lasted three 

to four hours at most, and the maximum number of hours in a given week was 19, although most 

services provided fewer hours. Three of the studies examined how CGs used their time during 

periods of in-home respite, and found little evidence that CGs used the break to engage in social 

or recreational activities. Instead, CGs usually did shopping or other chores; men often used the 

free hours to do paid work; and some CGs used the respite time for additional help with caring 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

tasks such as lifting, bathing, and other personal hygiene tasks. One study compared in-home 

respite and day care on how CGs used their time. CGs spent less time on caregiving on respite 

days than on non-respite days with in-home respite care, whereas day care users spent more time 

caregiving on respite days than on non-respite days, probably in preparing the CR for going to 

the day care center.63

 

Below is a summary of the findings on in-home respite care: 

“Carers reported high levels of satisfaction with in-home respite services. Satisfaction appeared 

to be closely linked to their perceptions of the benefits that the service bought to their relative, 

and the quality of care provided. Carers reported that they would have liked the service more 

often, and liked visits to last longer as the relatively short periods of respite constrained the type 

of activity that could be undertaken. 

“None of the studies were able to demonstrate statistically significant positive effects of in-home 

respite on a range of measures. The evidence suggested that in-home respite could assist in 

maintaining family routines, and roles, and the dementia sufferer’s sense of self.

“It is difficult to separate the impact of in-home respite on the demand for other types of respite 

care, or in reducing or delaying entry into long-term care, as most carers in these studies were 

accessing a range of different services.

“No evidence was retrieved in relation to the cost-effectiveness of in-home respite.”63

 

Institutional/overnight Services

The NHS report identified 12 studies on institutional/overnight services, including two studies 

conducted at VA hospitals.64, 65 One VA study assessed CG burden and depression 14 days 

before respite, the day of patient discharge, and 14 days post-respite, among 125 CGs whose 

CR had been scheduled for a two-week hospital admission for respite care. The study found 

transient improvement in CG burden and depression that was statistically significant at the time 

of discharge, but by two weeks post-respite care, these measures were not significantly different 

from their values two weeks prior to respite admission. Another VA study surveyed 25 CGs by 

telephone three days before respite admission, three days before respite discharge, and 14 days 

after respite discharge, and similarly found a significant reduction in psychological distress that 

was short-lived.65 The lack of a control group was a limitation in these studies. 

The overall findings of the NHS report on institutional/overnight respite care were as follows:

“Physical and emotional benefits were seen as worthwhile when set against the difficulties of 

organizing institutional/overnight services. Institutional and overnight services were seen to 

help in some way, but other short-term breaks were seen as more beneficial to the CR. Standards 

of care and quality of service influence use of services. There was some evidence that CRs 

returned home in a worse state, but also that medical conditions could be diagnosed during 

breaks. Although some CGs experienced guilt in using services, others reported that services 

helped them to continue in their caring role. There appeared to be a major benefit to sleep, with 

CGs experiencing increased and better-quality sleep. There was mixed evidence on the impact 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

of services in relation to ADL, behavior and dependency (in the CR), but it is difficult to unravel 

the potentially negative effects of respite from the natural progression of the disease. There was 

little evidence that services reduced the demand for long-term placements.”63

 

Overall, there appear to be mixed benefits from institutional/overnight respite care. Sleep 

is improved in the CG, but the disruption to the CR’s routine may be problematic. It is 

questionable, however, that the disease would progress enough to affect ADLs and behavior 

during the two-week duration, as Arksey, et al. suggests. 

Video Respite

The evidence on video respite compiled by the HTA report63 is based on two studies by the same

investigators.66, 67 In both studies a videotape was for general viewing by persons with dementia, 

rather than customized for individuals, although separate tapes were made for men, women, 

and people from African-American, Jewish, and Hispanic backgrounds. The purpose of the 

videotape was to capture the CR’s attention to a degree that would provide respite for the CG. In 

the first study, the video consisted of a 33-minute tape recorded by an actor/actress who speaks 

to the demented viewer, tells short stories, sings songs, and asks questions about specific subjects 

such as favorite activities, music, and holidays. The study found that most of the viewers 

with dementia remained seated and were paying attention and verbally responding throughout 

the viewing time.66 The second study examined whether there was a difference in how 12 

individuals with Alzheimer’s watched a 20-minute videotape in a group setting compared to 

viewing it alone, and found that there was greater participation and response to “requests” made 

on the tape in a solitary setting compared with a group setting, although in both settings, viewers 

demonstrated at least moderate levels of interest and enjoyment.67 There was no evidence on the 

effects of video respite on CG burden or CR outcomes. 

Limitations of the literature: Most of the studies were not based on RCT design, and in some 

studies no control group was used. A number of different instruments were used to measure 

outcomes in the studies, and there is a wide range of intended consequences of respite care and 

short-term breaks. In some instances the purpose may be to assist CGs to “let go” and allow 

their relative to enter long-term care, while in other cases, the goal might be to support CGs 

to actively provide care for longer. The impact of an intervention might be difficult to capture 

due to the magnitude of the effect and the number of effects possible. There is a great deal of 

heterogeneity in this body of literature. 

Recent and Ongoing Research Studies

In response to our e-mail solicitation to VA researchers and listservs, authors of unpublished and 

recently published studies shared with us the following findings:

•	 A six-month feasibility study of implementing the REACH VA intervention among 24 

home-based primary care (HBPC) programs in the VHA system found decreases in CG 

burden, depression, and time spent in caregiving; as well as decreases in CR behavior problems. REACH VA is based on the National Institute on Aging/National Institute of Nursing 

Research (NIA/NINR) funded REACH II study, and provides CG support and skills train-
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

ing in safety, behavior management, and self-care via 12 in-home and telephone sessions, 

and five telephone support group sessions. The analysis found that the VHA costs of delivering the full intervention would be $2.93 per day over six months, and that satisfaction and 

perception of benefit from the intervention were high among both staff and CGs.68

•	 Partners in Dementia Care (PDC) is an ongoing HSR&D funded intervention that is a collaboration between local VA medical centers and Alzheimer’s Association chapters. The 

intervention is delivered by care coordinators from each partner organization and includes 

a shared patient and CG assessment and ongoing action plan. PDC tests a phone-based 

Care Coordination Intervention that uses coaching, empowerment, and a consumer-directed 

approach when working with Veterans and family CGs. The Intervention assists with 1) 

accessing services and informal support, 2) providing information and education about dementia and caregiving, and 3) providing emotional support. The study of over 500 Veterans 

is in the data analysis phase, and will compare psychosocial outcomes for patients and CGs 

and Veteran health service use across intervention and control settings.69

•	 REACH OUT, a condensed version of the REACH II intervention that included four 

home visits and three phone calls over four months, was found to be feasible for use by 

social service agency personnel. The intervention was delivered to 272 dementia CGs, 

and improvements were seen in CG subjective burden, mood, social support, and health; 

and also in CR mood and behavior problems.70 

•	 An uncontrolled pilot study of the TLC screen program examined user satisfaction and 

changes in CG burden, health care utilization, and costs after 12 months. The TLC program 

included a screen-telephone system that provided access to education, support, monitoring, 

and various VHA resources; as well as personal assistance from a nurse care coordinator 

and a support person. The study included 113 CGs of individuals with dementia. There 

were no significant changes after 12 months in CG outcomes including burden, depression, 

and ability to cope, although decreases in facility costs, hospital admissions, and hospital 

days of care were noted. CGs indicated that they were more satisfied with the care-coordination aspect of the program compared with the education or the monitoring.71

•	 Pilot evaluations are currently underway to determine effects on CG burden and wellbeing of using remote sensor technology to monitor Veterans in the HBPC program. The 

technology would be used to convey information about the CR’s daily activities to both 

the CR and CG, as well as the HBPC nurse. Another ongoing study by the same investigator will determine the effects of an online Long Term Care (LTC) Resource Guide and 

Shared Decision Making Tool on CG well-being and LTC knowledge.72 

•	 A recently completed RCT of the Telehealth Education Program, a telephone based education and support group designed for CGs of Veterans with dementia, found short-term 

savings in health care costs, despite that there were no significant effects on CG burden.73

•	 A proposed RCT of Preventing Aggressive Behavior in Demented Patients (PAVeD), a 

six- to eight-session, home-based psychoeducational intervention for individuals with 

dementia and pain and their CGs. The (PAVeD) intervention aims to prevent the development of aggression in demented individuals with pain. The intervention addresses the 

recognition and treatment of pain in the CR, increasing pleasant activities, and improving 

patient-caregiver communication.69
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

•	 A recently completed study of the Stress-Busting Program (SBP) for Family Caregivers 

found improvements in CG health, social function, anxiety, anger/hostility, depression, 

perceived stress, and burden over the course of the two-month intervention and at two 

and four months post-intervention. This was measured by questionnaires, biofeedback 

techniques, and blood assays. The study included 202 CGs of individuals with Alzheimer 

Disease and Related Disorders (ADRD). The intervention involved psychoeducational 

support groups that met 11⁄2 hours per week for nine weeks, and stress management techniques were also taught during the sessions. In post-intervention interviews, CGs reported that the relaxation and stress management techniques enabled them to manage stress 

more effectively. CGs also expressed that the interaction and companionship with other 

CGs was a beneficial aspect of the program. CGs who completed the SBP commonly 

expressed that the interaction and companionship with other CGs was the most beneficial 

aspect of the program. CGs also reported that the relaxation and stress management techniques enabled them to manage stress more effectively.74

•	 An ongoing project entitled CARE-Plus includes CGs within the community and the VA 

system, and randomizes CGs to one of three groups: a psychoeducational control group, 

a multi-component group designed to teach specific skills to manage neuropsychiatric 

symptoms, and a third group that receives the multi-component intervention as well as 

additional self-efficacy enhancing techniques. A telehealth approach for use by homebased CGs, combined with initial and booster home visits, would be a potential application for the intervention in the VA system.75

KEY QUESTION #2. What are adverse effects of CG interventions?

The systematic review of respite care63 found evidence in one study76 to suggest that CGs using day

care service actually spend more time on caregiving activities on respite days than on non-respite 

days, usually in preparing the CR for the visit or transporting the CR to the day care setting. 

In studies of institutional/overnight respite, some CGs reported that the respite break had 

adversely affected the CRs, and that the disruption to their routine had increased anxiety and 

confusion.63 In one study,

77

 some CGs reported an increase in short-term workload because the 

CR’s continence worsened on return home, whereas other CGs reported a loss of mobility for 

the CR because wheelchair use by the services had created a dependency. Another drawback 

identified by CGs in this study was a concern about standards of care, and 10% of the sample 

(n=167) who tried institutional/overnight breaks decided not to use the service again based on 

quality of service. In a small (n=25) study of institutional/overnight respite services, over half of 

CGs reported feeling sad or lonely while the patient was in the hospital, and one-fifth felt guilty 

and reported criticism from friends and relatives for allowing relief admission.78

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.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

DISCUSSION

We conducted a critical assessment of systematic reviews and recently published studies on 

interventions for dementia CGs. We identified several promising interventions, but there was 

considerable variability in outcomes evaluated across interventions, and no single type of 

intervention was unequivocally effective on any given outcome of interest. Though the body of 

evidence for most interventions was limited, the following points highlight potentially promising 

approaches:

•	 The evidence on how respite affects the health and well-being of CGs is inconsistent, but 

respite care appears to be valued by CGs and may offer them short term benefits. Institutional/overnight respite promoted better sleep patterns in CGs during the period of respite, although there were no marked improvements in health and well-being in comparison to control groups. Short term respite care, however, may be more burdensome than 

beneficial for the dyad in terms of effort, preparation time, and disruption to routine. 

•	 ICT interventions, such as GPS-location systems for wandering behavior, may improve 

patient function and safety as well as reduce CG burden, although current evidence is 

based largely on uncontrolled studies. 

•	 Although findings were inconsistent, a limited body of evidence suggests that BMT may 

enhance CG well-being, depression and burden, and CR quality of life, particularly when 

BMT is augmented by increasing CR exercise or CG self-care behaviors. 

•	 Individual skills training showed benefit in some studies. CG depression was ameliorated 

in two studies, although there were no effects on other measures of CG burden. In two 

other studies, disruptive behavior in the CR appeared to diminish when CGs received 

structured training to identify behavioral triggers and to modify the environment to reduce stress. 

•	 CG depression may improve with both group and combined individual/group skills 

training interventions, particularly when the interventions are individualized by in-home 

assessment and targeted to specific needs of the patient-CG dyad. 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. 

•	 CG depression may respond to treatments that offer a combination of individualized 

counseling and group support to the CG. The combined individual/group approach also 

resulted in delayed institutionalization for the CR in one study. These findings are supported by a series of publications by Mittelman and colleagues, and would be strengthened by replication elsewhere. Ancillary improvements in affective regulation for coping 

and aversive reaction to CR behavior disturbance were supported in single studies. The 

effects of individual counseling and group support may vary with the skill level of the 

trainer, the setting, frequency and duration of contacts, and the training materials used. 

•	 Combined exercise for CR and BMT for the CG may improve physical health and mood 

for the CR, although impact on CG burden, mood, quality of life, and delay of CR institu-
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

tionalization has not been demonstrated. 

•	 Supportive CG counseling based on individual assessment appears to have robust positive effects on the rate of institutionalization of the CR and on CG depression, maintained 

as long as three years into follow-up. 

•	 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. 

Improvements in CG confidence in caregiving skills, well-being, sense of burden, stress, 

and mood can be seen with combined approaches. Although there is no clear evidence that 

institutionalization of the CR may be delayed, it does appear that behavioral symptoms of 

dementia can be reduced through multicomponent interventions for at least four months 

after intervention, and this likely improves the home atmosphere for both CR and CG. 

The feasibility of implementation and cost analyses of these interventions need to be assessed 

within VA. Individualized programs may be the most effective but would require more resources 

of staff to evaluate the dyad and generate a tailored program. One cost benefit analysis of the 

REACH II multicomponent intervention in Memphis, Tennessee79

 indicated that training in 

dementia problem areas, behavior management techniques, and supportive contact can result in 

sparing dementia CGs an hour a day from caregiving tasks, at an estimated cost of $5 per day.

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.

We noted inconsistent and sometimes disappointing findings among the variety of interventions 

for dementia CGs. For example, the lack of effect for respite care in reducing CG burden and 

premature CR institutionalization seems intuitively surprising. It is possible that the relentless 

decline and challenge of dementia poses a stable negative impact that overwhelms more transient 

improvements in mood, burden, quality of life, and support for maintaining CRs in the home. 

This may indicate that the definition of what constitutes meaningful change in this field and 

whether the instruments used are sensitive enough to detect it need to be reevaluated. 

Alternatively, the measures used to define the psychosocial outcomes of depression, burden, 

coping, quality of life, and CR behavior problems as constructs may lack adequate sensitivity to 

detect meaningful change in the context of dementia. For example, across the 30 primary studies 

reported here, the Center for Epidemiologic Studies Depression Scale (CES-D) was used to 

measure depression in nine studies, and one-third of those studies reported a significant reduction 

in CG depression in the intervention group. It is possible that the benefits of the interventions 

employed in the studies were important to the CGs but too subtle to result in enduring change 

on the CES-D. We attempted to examine the performance of measures for CG depression, 

burden, and CR behavior problems across the 37 studies reviewed here, but the samples were too 

small to derive strong conclusions about whether specific measures were more likely to detect 

improvements. Only four measures were used in six or more studies; they were associated 

with a study reporting significant improvement from baseline among CGs in the following 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

proportions: Geriatric Depression Rating Scale 43%; CES-D 33%; Zarit Burden Inventory 17%; 

Memory and Behavior Problems Checklist (MBPC) or Revised Memory and Behavior Problems 

Checklist (RMBPC) 33%. As early as 1987, Zarit, et al. wrote that global ratings of distress and 

burden may not reflect the changes or possible benefits that CGs may be experiencing, yet these 

measures continue to be used widely.

The evidence on psychosocial interventions is limited by differences in the interventions used 

across studies. Furthermore, many studies assessed complex interventions and it was difficult 

to determine with confidence which aspect of the intervention was effective. However, the 

addition of the REACH studies following expert panel commentary increased the perspective 

of this review, and may suggest that the specific intervention or combination of interventions is 

not as important as the role of individual assessment and tailoring of interventions to the needs 

of the dyad through multiple modalities. Viewed through this lens, intervention variability and 

adaptability may be an important feature of a successful intervention, permitting responsiveness 

to variation across individuals.

There was potentially more compromising variations in recruitment strategies and analytic 

methods across studies. For example, some studies excluded from final analysis the data from 

CGs whose CR had died or moved to institutional care settings47

 while others did not.80

 Some 

studies drew from a distressed population seeking assistance where response to treatment may be 

more evident,34

 while others sampled from general clinic or Alzheimer’s Association membership 

rosters.46

Outcome measures and interventions varied widely across studies, but complications also arise 

when these aspects overlap imperfectly. We had difficulty sorting the studies into discrete 

intervention groups, and noted, for example, that skills-based interventions often included 

aspects of the more precisely defined behavior management training, and that supportive 

counseling similarly offered components of skills training as part of the intervention. 

Psychosocial interventions do not lend themselves to the same precise sorting and control as 

a medication trial might. From published reports, it was not possible to compare adherence 

to therapeutic protocol, or an individual interventionist’s ability to form rapport with the 

subjects across studies, or assess how these factors contributed to outcomes. It is likely these 

instrumentation issues varied considerably across studies. 

A further source of discrepancy in results may stem from individual variation. Across studies, 

we noted a number of factors that should be controlled for in future studies and considered 

when weighing treatment options for CG/CR dyads in dementia. More severe CG depression at 

baseline can result in differential dropout and poor treatment adherence.13, 26

 Burgio, et al. report 

differential effects for African American CGs compared to Caucasian American CGs: a skillstraining intervention was more effective for reducing bother among African American CGs, 

whereas minimal support phone contacts were more effective for White CGs.38

 Interventions can 

have different effects for spousal CGs than for nonspouses28, 38

 and for female versus male CGs.28 

Brodaty and colleagues reported they solicited from CGs which part of the program had been 

most useful and found “marked variety in the answers, suggesting that different components 

were helpful for different CGs.”6
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

There were also limitations to generalizing findings from the review of technology-based 

interventions. The reviews were largely descriptive and did not appraise the quality of the 

included studies. Older systematic reviews that performed quality appraisal of RCTs contained 

evidence from four RCTs on phone and computer-based interventions that may no longer be 

relevant as technology develops. However, the studies reviewed provide a comprehensive 

overview of ICT services available for individuals with dementia and their CGs. 

Given that the efficacy of an intervention varies with the individual, individualized multicomponent 

treatments may well hold the most promise. This conclusion is consistent with the pattern of 

findings reported in this synthesis project. We agree with the conclusions of Brodaty, et al. in their 

2003 systematic review that multicomponent, individualized treatments targeting specific problems 

identified by the CG while offering combined individual and group interaction appear to produce 

the most identifiable meaningful change in CG mood and coping.81 This conclusion is also aligned 

with Schulz et al.,82 who wrote in an overview of the REACH studies that “Many caregiving 

interventions involve several treatment elements aimed at simultaneously addressing multiple 

problems. Multicomponent interventions delivered in high doses are generally more effective than

more narrowly targeted interventions...[however] we believe a ‘one size fits all’ approach to CG 

interventions is likely to be ineffective” (p. 519).

This review is also limited by the dates of literature covered by the good quality systematic 

reviews we included. The most recent reviews included in our synthesis were published in 

2009; and the most recent literature searches conducted by these reviews extended through 

2007 for technology-based interventions,57

 and through 2005 for psychosocial interventions.83 

Given the broad scope of our review, we examined previous systematic reviews in search of 

compelling evidence of significant benefit from CG interventions. Because previous reviews 

and the trials they identified did not show compelling evidence of benefit in any particular 

intervention, we did not conduct a systematic search for recently published RCTs. To address 

the likelihood that newer trials published since 2007 have found strong evidence of benefit but 

were not considered in our review, we added newer original studies to this overall document 

upon the recommendation of our expert review panel. We felt the studies recommended by our 

expert panel represented highly regarded, well-constructed RCTs that added new strength to 

the literature. In fact, the quality of studies emerging from the REACH program caused us to 

reappraise the strength of multicomponent interventions, while studies added on recommendation 

also persuaded us that case management appears to be a stronger contributor to CG coping and 

quality of life than originally assessed. While the process of beginning with a review of reviews 

and then adding specific new studies recommended by expert peers may have resulted in a less 

systematic representation of the recent literature (published after 2006), we tried to minimize 

that problem by including a wide variety of experts on our panel, and also included the AoA

Compendium2 to bolster comprehensiveness.

We noted that many studies eliminated by our quality rating have been included in four, five, 

or even six major systematic reviews frequently cited in the field. Psychosocial studies of 

vulnerable populations tend to be laden with challenges from the outset, and there may be a need 

to use less stringent quality criteria in order to assess the contributions of the field. In order to 

narrow our search to the best quality data, we identified the studies that have been frequently 
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

cited, and assessed their quality using standard criteria and group consensus. This approach also 

has its weaknesses. There may be good quality studies reviewed in poor quality reviews that 

were not captured in this project. Also, subtle, transient, individual subject responses may be 

a more appropriate indicator of effectiveness when intervening with dementia CR/CG dyads, 

and current evidence synthesis conventions evaluating statistical significance may not be ideally 

equipped to isolate these small but potentially clinically meaningful effects. 

The distinction between clinical and statistical significance is important to the topic of dementia 

CG interventions. Schulz and colleagues (2002) conducted a systematic review with the explicit 

intent of evaluating the clinical importance of outcomes for dementia CGs.84

 They required a 

priori that an effect has statistical significance before evaluating the clinical significance, which 

they defined by one of four indicators: 1) improvement towards normal functioning in clinical 

symptoms; 2) improvement in quality of life; 3) importance of an outcome to society; and 4) 

social validity (extent to which research participants and experts judge the interventions and 

outcomes to be acceptable). They concluded that psychosocial interventions appeared promising 

for clinically significant outcomes in CG depression, based on clinical improvements seen 

in two of 24 studies reviewed.30, 85 Psychosocial interventions also appeared to be promising 

for targeting CG anxiety (four of seven studies showed small clinical improvements). Small 

positive effects were noted for CG quality of life, but the heterogeneity of interventions 

rendered it difficult to attribute outcomes to specific causes, and there was no overall good 

standard for judging what constitutes a clinically significant change in this cluster. Delay of 

institutionalization (an important social outcome) was clinically important in six of seven 

heterogeneous interventions reviewed. The authors noted that most studies met criteria for 

social validity, but those ratings were possibly biased as subjects may have felt obligated to 

report positive comments to please researchers or to justify their own challenges in participating.

In sum, methods for determining clinical significance remain somewhat unstandardized, but 

scrutiny of dementia CG interventions reveals some promise of clinical utility for CG depression/

anxiety, and evidence that outcomes of these interventions are socially important.

FUTURE RESEARCH RECOMMENDATIONS

Based on our examination of primary studies used in previous systematic reviews, CG 

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

more resource-intensive, such as BMT and individual skills training. Our informal survey of 

recently completed and ongoing studies using VA e-mail listservs identified preliminary studies 

of psychosocial interventions (REACH OUT;70 REACH VA;68 Stress-Busting Program74) 

and technology-based interventions (Telehealth Education Program;73 TLC71) that found 

improvements in CG burden with some of the interventions, and short-term savings in health 

care costs in one study.73 Studies of other psychosocial interventions (PAVeD; PDC69) and 

technology-based interventions72 have been proposed or are underway. In order to determine 

the feasibility of implementation, effectiveness, and cost-effectiveness of CG interventions 

within VA settings, future studies should evaluate different implementation strategies, evaluate 

interventions in different settings, and evaluate methods for improving participant retention. 

Given some of the methodologic weaknesses in past studies, future studies should use rigorous 

study designs, sufficient sample size, and appropriate duration of follow-up.
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Interventions for Non-professional Caregivers of Individuals with Dementia Evidence-based Synthesis Program

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

in what CGs and researchers consider effective. In addition to their review of published studies 

on respite care, Arksey, et al.63 conducted a qualitative consultation with multiple stakeholders,

including CGs, CRs, and health and social care professionals. Key objectives of the consultation 

were to examine the gaps in the literature and to examine whether the outcomes that CGs value 

are the same as, or similar to, those used in the research literature. The contributors to the 

consultation generally felt that respite was too complex to be evaluated by one or two measures 

of effectiveness. They proposed a range of qualitative and quantitative indicators against 

which they felt the effectiveness of respite services should be measured. Proposed quantifiable 

measures included the following: 1) a comparison of the CR’s health, both physical and mental, 

on admission and discharge, within the context of clear individual health goals; 2) a similar 

assessment of the health of the CG; and 3) the impact of activities/stimulation on the CR’s 

behavior, sleep patterns, ADL, etc.”63

Similar studies of CG perceptions with regard to other interventions would potentially offer a 

rich source of inspiration for the development of tools that measure what we hope to measure in 

this field: evidence that the CG has perceived and responded to useful intervention that improves 

the quality of experience within the here and now. We need to understand what interventions 

to offer to a CG who is depleted by months of challenging daily assistance to a loved one with 

dementia, and evaluate interventions that might impact those outcomes for cost and utility. 

Qualitative studies to identify outcomes 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. 
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53

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