Scholarly article on topic 'A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia'

A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia Academic research paper on "Psychology"

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Journal of Aging and Health
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Academic research paper on topic "A Systematic Review and Meta-Analysis Comparing Carer Focused and Dyadic Multicomponent Interventions for Carers of People With Dementia"

A Systematic Review and Meta-Analysis Comparing Carer Focused and

Journal of Aging and Health 1-42

© The Author(s) 2016 Reprints and permissions:

DOI: 10.1177/0898264316660414

Dyadic Multicomponent Interventions for Carers of People With Dementia

Kate Laver, PhD12, Rachel Milte, PhD12, Suzanne Dyer, PhD12, and Maria Crotty, PhD12


Objective: The aim of this study was to compare the efficacy of two approaches: multicomponent interventions that focus on working with the carer and dyadic interventions that work with both the carer and the person with dementia. Method: A systematic review involving a search of Medline, EMBASE, and PsyclNFO in October 2015 was performed. Randomized controlled trials involving carers of people with dementia and comparing multicomponent interventions with usual care were included. Results: Pooling of all studies demonstrated that multicomponent interventions can reduce depressive symptoms, improve quality of life, reduce carer impact, and reduce behavioral and psychological symptoms of dementia as well as caregiver upset with these symptoms. We were unable to find a significant difference in the effects of dyadic interventions in comparison with carer focused interventions for these outcomes. Discussion: Although effect sizes associated with intervention are small, multicomponent interventions are relatively inexpensive to deliver, acceptable, and widely applicable.

'Flinders University, Adelaide, South Australia, Australia 2NHMRC Cognitive Decline Partnership Centre, Australia

Corresponding Author:

Kate Laver, Department of Rehabilitation, Aged and Extended Care, Flinders University, GPO Box 2'00, Adelaide, South Australia 500', Australia. Email:


dementia, caregivers, nonpharmacological, family


Most people with dementia live in their own homes and rely on assistance to manage activities of daily living (ADL) from family and friends (carers; Australian Institute of Health and Welfare, 2012; National Alliance for Caregiving and AARP, 2009). Assistance is commonly required to support personal ADLs (e.g., washing, dressing, grooming, toileting, eating) and instrumental ADLs (e.g., cooking, shopping, and managing finances and health care) as well as providing general surveillance to ensure the safety and well-being of the person with dementia (Alzheimer's Disease International, 2009). A review of studies that provided information on caregiving reported that carers spent an average of 3.7 hr per day assisting with ADLs and additional time spent providing supervision (Wimo, Winblad, & Jonsson, 2007).

Although caring for someone with dementia can be rewarding, it is also challenging (Thompson, 2013) and associated with high levels of burden (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014), depression (Clare et al., 2002), and reduced quality of life (Argimon, Limon, Vila, & Cabezas, 2004). Carers have reported that they want more education, skills counseling, emotional support, and respite to help them in their caring role (Black et al., 2013; Hughes et al., 2014). There are now many trials demonstrating the efficacy of nonpharmacological interventions where the interventionist predominantly works with the carer with the aim of supporting them to provide care and cope more effectively (Brodaty & Arasaratnam, 2012; Elvish, Lever, Johnstone, Cawley, & Keady, 2013; Gallagher-Thompson et al., 2012; Jones, Edwards, & Hounsome, 2012; Kales, Gitlin, & Lyketsos, 2015; Maslow, 2012; Olazaran et al., 2010; Schoenmakers, Buntinx, & DeLepeleire, 2010; Van't Leven et al., 2013). Interventions for carers are often multicomponent and tend to involve a combination of education, support, problem solving, and skills training (Kales et al., 2015). Although carer interventions are widely considered to be effective, studies are heterogeneous and involve different participant groups, interventions, comparison conditions, and outcomes. This leads to difficulty in interpreting the evidence and ascertaining which interventions are most effective and should be translated into clinical practice.

One of the distinctions between caregiver intervention programs is whether they work with the person with dementia and carer (dyad) or whether they focus the intervention on the carer alone. A number of the interventions that have been tested are considered dyadic interventions (Van't Leven et al., 2013). Dyadic interventions may include joint counseling, problem solving, and use of

strategies to try and increase independence in ADL and engagement in meaningful activities. Working with the dyad is thought to be more effective because of the synergistic relationship between the person with dementia and the care-giver. Existing systematic reviews have examined the effect of one type of carer intervention or the effect of carer interventions more broadly on a single outcome (Brodaty & Arasaratnam, 2012; Kales et al., 2015; Maslow, 2012).

The aim of this article was to examine the efficacy of carer interventions that involve multiple components (e.g., education, problem solving, skills building, support) and compare effects based on whether or not they were dyadic in nature.


Background to the Review

This review stemmed from work that was completed in the development of clinical practice guidelines for dementia in Australia (Guideline Adaptation Committee, 2016). Clinical practice guidelines should include the most recent literature and be developed in a way that is timely and resource efficient while maintaining methodological quality of the systematic reviews (World Health Organisation, 2012). To manage this, guidelines typically use existing systematic reviews as a source of primary studies and update these reviews with more recent studies where required (Woolf, Schunemann, Eccles, Grimshaw, & Shekelle, 2012). As a component of guideline development, we conducted a systematic review of the efficacy of interventions for carers of people with dementia in comparison with usual care. We identified the most recent, comprehensive, high quality systematic review and used this as a source of primary studies (Olazaran et al., 2010). We then updated this by identifying any newer studies meeting the inclusion criteria and combined all results to present an overall measure of efficacy. This work is available in the Guideline Technical Report (Guideline Adaptation Committee, 2016). Subsequent to development of the guideline, we have examined the effectiveness of multicomponent interventions that were dyadic in nature in comparison with those that were not. We have updated the searches conducted during the guideline development work, included new studies, completed additional data extraction, and conducted novel meta-analyses.

Inclusion Criteria

We included randomized controlled trials published in English. Participants in the included studies were carers of people with any type of dementia. Multicomponent interventions were defined as those that involved a number

of different intervention techniques. These intervention techniques included, but were not limited to, education, counseling, information regarding services, enhancing carer skills to provide care, problem solving and strategy development, and increasing resilience and coping skills in the carer. Interventions that were conducted with the carer alone or those that also involved the person with dementia (dyad) were included. Studies were required to compare the intervention with usual care. We also searched for studies that directly compared carer focused with dyadic interventions. The outcomes included were those measuring direct impact for the carer (depression, quality of life, and carer burden and caregiver upset in relation to behavioral and psychological symptoms of dementia) and the person with dementia (ADL function, behavioral and psychological symptoms of dementia).

Search Method

We identified the most recent and comprehensive high quality systematic review. The review was updated by searching for additional randomized controlled trials published after September 2008. Databases searched were Health Technology Assessment, the Cochrane Library (Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects), Medline, EMBASE, PsyclNFO, and PubMed using terms including Alzheimer's, dementia, caregiver, carer, family, assess, treatment, therapy, intervention, support, psychosocial, nonpharmacologic, education (see the appendix for full search strategy). Searches for the guideline were conducted on May 9, 2014, and updated on October 7, 2015.

Data Collection and Analysis

One review author (K.L.) ran the searches and reviewed titles and abstracts to select articles for full text review. Two authors (K.L. and R.M.) conducted full text review to determine which studies met the criteria for inclusion in the review. One author (K.L.) extracted data into the tables and into RevMan Version 5.2 for analysis and a second person checked the data extraction accuracy. Two authors (K.L. and R.M.) independently completed an assessment of risk of bias using the Cochrane Collaboration Risk of Bias tool (Higgins & Green, 2011). This included assessment of (a) random sequence generation, (b) allocation concealment, (c) blinding of participants and personnel, (d) blinding of outcome assessment, (e) incomplete outcome data, and (f) selective reporting. Items were classified as being "low risk," "high risk," or "unclear risk of bias." We did not contact authors to obtain missing information regarding study data or methods.

Figure 1. Search for studies.

Study outcomes were pooled in a meta-analysis in RevMan Version 5.2 when means and standard deviations were reported or could be calculated. Where authors did not report means and standard deviations (or these could not be calculated based on the data provided) studies were described narratively. A random effects model was used for pooling all outcomes due to statistical heterogeneity (I2 > 50) and obvious heterogeneity observed on forest plot. Where it was not possible to pool data for an outcome (due to data not presented in an appropriate form for use in meta-analysis) the study results were synthesized in a narrative summary.


The study selection process is presented in Figure 1.

The most recent high quality systematic review was conducted by Olazaran and colleagues in 2010 (Olazaran et al., 2010). This review included all forms of carer interventions and did not exclude studies based on outcomes reported. The review included six multicomponent interventions involving the carer and 18 multicomponent interventions involving the carer and the person with dementia. The review included studies published up to 2008.

We searched for additional studies published from 2008 to October 2015; 11 studies of multicomponent interventions involving only the carer and five multicomponent dyad interventions were identified. Thus, the total number of studies included in the review was 40. We did not identify any studies that compared carer focused interventions with dyadic interventions. Characteristics of included studies are summarized in Table 1.

Summary of Included Studies

The characteristics of carers were similar across all studies. Studies typically recruited more females than males; in most studies, approximately, two thirds of the caregivers were female. Caregivers were typically aged in their 60s and 70s. The severity of symptoms in people with dementia varied widely across studies although most participants had mild to moderate dementia as indicated by Mini-Mental State Examination scores. A summary of the different interventions provided, the follow-up time for the studies, and the outcomes contributing to this review is shown in Table 1. In the dyadic interventions, the person with dementia was involved in various activities including education about dementia, joint problem solving, joint counseling, cognitive stimulation, engagement in pleasant activities, modification of the environment or tasks, peer support, and general case management duties.

Methodological Quality of the Included Studies

Overall, the quality of included studies was considered moderate as presented in Table 1. Due to unclear reporting, it was often difficult to determine methods of randomization and allocation concealment. Few studies had published protocols or were registered on clinical trial registries making it difficult to determine the presence of selective reporting. Four studies appeared to use outcome assessors who were not blinded to allocation, and in a further 16 studies it was unclear as to whether the outcome assessor was aware of allocation.

Impact on the carer's depressive symptoms

Carer only interventions. Multicomponent interventions involving only the carer tended to reduce depressive symptoms although this was of borderline statistical significance (standardized mean difference [SMD] = -0.18, 95% confidence interval [CI] = [-0.37, 0.00], 12 trials, N = 1,527 participants). Two studies could not be included in the meta-analysis; one of these studies reported no effect on depression following treatment (Finkel et al., 2007), whereas the other study reported that carers receiving the intervention had

Table I. Characteristics of Included Studies.

Reference Country

N carers



Length of follow-up

Risk of bias3

Multicomponent carer

Lawton 1989 632 (Lawton, Brody, & Saperstein, 1989) United States

Mohide 1990 (Mohide et al.,

1990) United States

Eisdorfer 2003 (Eisdorfer et al.,

2003) United States (REACH Miami study)

Carers: Mean age 60

80% female

PWD: Mean cognitive symptom severity was 14/30 in the control group and 13/30 in the intervention group (moderate severity).

Carers: Mean age 66 in the intervention group and 69 in the control group

Gender 70% in the experimental group and 73% in the control group

PWD: Mean MMSE was 13 in the intervention group and I I in the control group (moderate severity)

Carers: Mean age 69 years, 75% female

PWD: Across the subgroups, the average MMSE ranged from 10 to 19/30 (moderate severity)

Intervention included respite, case management, and counseling. A social worker discussed the carer's needs, assisted where needed in procuring services, and maintained regular contact (at client's request at any time, with a 2-month maximum interval, initiated by the social worker if necessary) through the 12 months following the baseline interview. Case management and counseling continued, where needed, throughout the year and the respite offer was made when appropriate.

The aim of intervention was to enhance carer competence and achieve a sense of control. Caregiver support nurses scheduled home visits, which were initially weekly. Carers undertook a health assessment, were provided with education, a copy of "The 36-Hour Day," problem solved strategies to reduce excessive disability, and enhance functional capacity in the PWD. Carers were offered a 4-hr block of in-home respite weekly. Carers were encouraged to attend a monthly 2-hr support group.

A structural family therapy intervention plus technology system designed to facilitate linkages of the carers with both their family and supports outside of the home. The system also provided the therapist with enhanced access to the carer and their family members. Intervention took place over 12 months with weekly sessions for the first 4 months, biweekly sessions for the next 2 months, and monthly sessions for the final 6 months. Each session lasted 60 to 90 min.

12 months

3 and 6 months

6 and 18 months

1. Unclear

2. Unclear

3. High

4. Unclear

5. Unclear

6. Unclear

1. Low

2. Unclear

3. High

4. Low

5. High

6. Unclear

1. Unclear

2. Unclear

3. High

4. Unclear

5. Unclear

6. High

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Mittelman 2004 406 Carers: Mean age 71 Caregivers in the treatment group received a comprehensive 4, 8, and 12 1. Low

(Mittelman, Roth, 60% female intervention that was designed to maximize the support provided months 2. Unclear

Coon, & Haley, PWD: The majority of to them. They agreed to participate in individual and family 3. High

2004; Mittelman, participants had a Global counseling sessions and to join and regularly attend an AD 4. High

Roth, Haley, & Deterioration Scale score of 4 caregiver support group. They and their families could request 5. High

Zarit, 2004) (mild severity) additional help, advice, or counseling at any time. Education was 6. Unclear

Gaugler 2008 a key element of the intervention. There was no predefined

United States endpoint to the treatment. Formal counseling was the central structured component of the treatment. There were two sessions with the caregiver alone and four sessions with the caregiver and the family

Belle 2006 642 Carers: Mean age was 57 to 64 The intervention addressed caregiver depression, burden, self-care, 6 Months 1. Low

(Belle et al., 2006) in the various treatment and and social support and care recipient problem behaviors through 2. Unclear

Nichols participant groups 12 in-home and telephone sessions over 6 months. Key strategies 3. High

United States 81% to 90% female depending for intervention included education about pleasant events and 4. Low

on treatment and participant well-being, stress management techniques, importance of looking 5. High

groups after own health, social support, and the symptoms of dementia. 6. Unclear

PWD: Mean MMSE ranged from Carers were supported to manage BPSD and given prescriptions

8 to 10/30 across the different with step-by-step strategies to manage these.

subgroups (moderate severity)

Finkel 2007 46 Carers: Mean age 65; 68% Primary component of intervention delivery was the CTIS. Carers 6 months 1. Unclear

(Finkel et al., 2007) female could (a) place and receive calls, (b) send and retrieve messages, posti nte rve nti o n 2. Unclear

United States PWD: Severity not reported (c) access information and services, and (d) conference with several people simultaneously. Intervention was provided over 6 months and included 2 in-home sessions and 12 sessions conducted over the CTIS. Eight individual educational skiII-building sessions and six support group sessions were interspersed. 3. 4. 5. 6. High Low High Unclear

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Tremont 2008 33 Carers: Mean age Intervention Telephone based psychosocial intervention (called FITT-D). 1 year 1. Unclear

(Tremont, Davis, group 66 Twenty-three phone calls over 1 year. Involved emotional 2. Unclear

Bishop, & Control group 61 support, direction to resources, encouraging families, and carers' 3. High

Fortinsky, 2008) Gender not reported health and teaching families and carers' strategies 4. Low

United States PWD: 22 care recipients had 5. High

mild dementia and 1 1 had 6. High

moderate dementia, (mild


Davis 201 1 46 Carers: Mean age intervention FITT-NH intervention. Delivered via 10 phone calls over 3 months Po sti nte rve ntio n 1. Unclear

(Davis, Tremont, group 57, control group 61 for families and carers whose loved one had moved into a 2. Unclear

Bishop, & Gender intervention group 83% care home. Incorporated emotional adjustment, families- and 3. High

Fortinsky, 2011) female, control group 68% carers-staff interaction, family functioning, health behaviors, and 4. Low

United States female social support and role change. 5. Low

PWD: Severity not reported 6. High

Kuo 2012 129 Carers: Mean age 80, 54% Intervention comprised a two-session, in-home training program. 2 weeks, 3 months, 1. Unclear

(Kuoetal., 2013) female Each session was 1 week apart. Sessions lasted 2 to 3 hr. BPSD and 6 months 2. Unclear

Taiwan PWD: 36% had mild dementia, were identified and a plan formulated to minimize stimuli, and posti nte rve nti o n 3. High

34% had moderate dementia, modify daily schedule and environment. The second session 4. Unclear

30% had severe dementia involved education and confirming the action plan. One week 5. High

(moderate severity) after the second visit and then once a month for up to 6 months 6. Unclear

the research nurse made follow-up phone calls.

Joling 2012 192 Carers: Mean age intervention Six sessions were held over a year. Intervention was tailored to the Month 12 1. Unclear

(Jolingetal., 2012) group 68, control group 71 needs of the families and carers and included psychoeducation, posti nte rve nti o n 2. Unclear

Netherlands Gender 70% female problem solving techniques, and engaging family networks to 3. High

PWD: Mean MMSE was 21/30 enhance support. Issues such as management of behavioral 4. Low

(mild severity) problems and coping with feelings of guilt were addressed. Ad hoc 5. Unclear

telephone counseling was available beyond the scheduled sessions. 6. High

Table I. (continued)

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Gaugler 2013 107 Carer: Mean age 50 Individual and family counseling, support group participation, and ad Quarterly during 1. Low

(Gaugler, Reese, & Gender: All female hoc counseling over a 4-month intervention period. Year 1 and then 2. Unclear

Mittelman, 2013) PWD: Mean severity on the every 6 months 3. High

United States Global Deterioration Scale for a minimum of 4. Low

was 4.97. (moderate severity) 2 years 5. 6. Unclear Unclear

Livingston 2013 260 Carers: Mean age intervention A manual-based coping intervention comprising eight sessions. The Months 4, 8 1. Low

(Livingston et al., group 62, control group 56 program consisted of psychoeducation about dementia, carers' 2. Low

2013) Gender intervention group 67% stress, and where to get emotional support; understanding 3. High

Knapp 2013 female, control group 71% behaviors of the family member being cared for and behavioral 4. Low

United Kingdom female management techniques; changing unhelpful thoughts; promoting 5. High

PWD: Mean severity on the acceptance; assertive communication; relaxation; planning for the 6. Low

clinical dementia scale was 1.3 future; increasing pleasant activities; and maintaining skills learnt.

indicating mild to moderate Carers practiced these techniques at home, using the manual and

severity (mild severity) relaxation CDs.

Martindale- 154 Carers: Mean age intervention Telephone support groups involving 5 to 6 families and carers and a Months 6 and 12 1. Unclear

Adams 2013 group 66, control group 65 group leader. The group met for 14 sessions over 1 year. Families 2. Unclear

(Martindale- Gender intervention group 82% and carers were provided with written materials on managing 3. High

Adams, female, control group 86% behaviors of concern and coping with stress. The intervention 4. Unclear

Nichols, Burns, PWD: Mean MMSE 15/30 focused on education, skills building, and support. 5. Low

Graney, & (moderate severity) 6. High

Zuber, 2013)

United States

Gonzalez 2014 102 Carers: Mean age 62 in the Six group sessions on resourcefulness training in groups of 5 Postintervention 1. Unclear

(Gonzalez, intervention group and 58 in to 7 carers who met for 2 hr weekly. The training taught and and 12 weeks 2. Unclear

Polansky, the control group reinforced cognitive behavioral skills, coping strategies, problem after the 3. High

Lippa, Gitlin, & Gender: All female solving, priority setting, and decision making. intervention 4. Unclear

Zauszniewski, PWD: Severity not reported 5. Unclear

2014) 6. Unclear

United States

Table I. (continued)

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Au 2014 60 Carers: Mean age 58 in Pleasant event scheduling for the caregivers and discussion and Postintervention 1. Unclear

(Au, Wong, Leung, intervention group and 55 in support around coping with caregiving. and 1 month 2. Unclear

Leung, & Wong, control group. following 3. High

2014) Gender: 78% female intervention 4. Low

Hong Kong PWD: Mean MMSE 15.5 in intervention group and 12.9 in the control group (moderate severity) 5. 6. Unclear Unclear

Chen 2015 46 Carers: Mean age 55 Study nurses provided the intervention of six sessions over 3 Postintervention 1. Low

(Chen, Huang, Yeh, Gender; 67% female months. Sessions included improving knowledge of dementia, 2. Unclear

Huang, & Chen, PWD: Approximately 63% had providing information regarding support services, techniques to 3. High

2015) CDR score of 1 and 37% manage BPSD or cognitive difficulties, support in relaxation and 4. Unclear

Taiwan had a CDR score of 2 (mild severity) coping, and establishing a caregiver self-support system. 5. 6. Unclear Unclear

Gaugler 2015 36 Carers: Mean age 63, 81% Residential Care Transition Module to help families manage their At 4 months and 8 1. Unclear

(Gaugler, Reese, & female emotional and psychological distress following residential care months 2. Unclear

Sauld, 2015) PWD: NPI-Q severity mean placement of a cognitively impaired relative. Intervention included 3. High

United States 9.89 out of 30 in the total psychoeducation, communication, problem solving, behavior 4. High

group (moderate severity) management strategies, concrete planning, and counseling. 5. 6. Unclear Unclear


Reference Country



Length of follow-up

Risk of bias3

Multicomponent carers plus people with dementia

Zarit 1982 (Zarit, Zarit, &

Reever, 1982) United States

Chang 1999 (Chang, 1999) United States

Quayhagen 2000 (Quayhagen et al., 2000) United States

Carers: Not reported PWD: Not reported

Carers: Mean age 67 All females PWD: Not reported

Carers: Mean age 72 63% female

PWD: Severity not reported

Unclear Unclear

4, 8, and 12 weeks I. Unclear 2. Unclear

Classes with problem solving training involving taking practical Postintervention I. Unclear

steps to manage day-to-day problems caused by the memory 2. Unclear

loss. Participants, including both the individuals with dementia 3. High

and the caregivers, were asked to talk about specific instances 4. Unclear

of "forgetting" that were troublesome. Suggestions for managing 5.

these problems were made by group leaders or other participants, 6.

taking into account an individual's severity of memory loss, living arrangements, and personal resources. The classes met twice a week for 1.5 hr a session for 3.5 weeks, or seven sessions

The intervention was designed to provide the caregiver with knowledge and skills to improve the PWD's eating and dressing abilities. It involved (a) videotapes demonstrating assisted modeling behavior (eating and dressing) and (b) a Nurseline support program to reinforce the video information and assist the caregiver to explore coping strategies.

Dyadic counseling, namely, problem (conflict) identification, stress Postintervention reduction, anger/frustration management, communication enhancement, and conflict resolution. The family (caregiver and PWD) focused on problems and/or conflicts that reduced their ability to interact effectively accompanied by tasks oriented to increasing communication and problem solving skills and 6. Unclear

enhancing the relationship. The dual participation continued to offer cognitive stimulation to the patient while working on social and emotional issues of concern to the couple. Each of the intervention programs was conducted for 8 weeks and included the participation of both members of the caregiving dyad. Three of the four programs were 1.5 hr in length, while the fourth program, the early-stage day care, was conducted for 4 hr weekly for the patients, but had only two sessions for the caregivers, with respite time an intended aspect of this intervention.

3. High

4. Unclear

5. Unclear

6. Unclear

1. Unclear

2. Unclear

3. High

4. Low

5. Unclear

Table I. (continued)

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Buckwalter 1999 245 Carers: Mean age 65 years Community-based psychoeducational nursing intervention to 6 months, 12 1. Unclear

(Buckwalter et al., 75% female teach carers to manage BPSD. The individualized plan of care months 2. Unclear

1999) PWD: Severity not reported based on the PLST model was presented and practiced utilizing 3.High

Gerdner 2002 examples with return demonstration during the in-home sessions. 4. Low

(Gerdner, The care plan was reviewed, techniques taught, and written 5. Unclear

Buckwalter, & materials summarizing the care plan were provided at the second 6. Unclear

Reed, 2002) in-home session 1 week later. Referrals for support groups, legal

Stolley 2002 counseling, and case management services were provided as

(Stolley, Reed, indicated. Experimental subjects received a total of approximately

& Buckwalter, 3 to 4 hr of in-home intervention following baseline assessment

2002) and biweekly follow-up phone calls from a research team member

United States for the first 6 months of the study.

Chu 2000 78 Carers: 68% of carers older The Early Home Care Program provided case management, 3, 6, 10, 14, and 18 1. Unclear

(Chu, Edwards, than 75 occupational therapy, physiotherapy, social work, nursing, months 2. Unclear

Levin, & Equal numbers of males and respiratory therapy, respite, homemaking, personal care 3. High

Thompson, 2000) females assistance, volunteer service, and psychiatric consultation. 4. Unclear

Canada PWD: Mean MMSE 22/30 (mild severity) The objectives were to (a) initiate long-term planning early to issues such as housing, finance, legal matters, and caregiving support; (b) increase the early use of home care and other community services; (c) improve the coping strategies related to psychosocial issues that often hinder long-term planning and service utilization; and (d) improve caregiving strategies related to functional and BPSD. 5. Unclear 6. Unclear


Reference Country

N carers



Length of follow-up

Risk of bias3

Gitlin 2001 (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001) United States

Carers: Mean age 61 73% female

PWD: Severity of dementia not reported

Garand 2002 (Garand et al., 2002) United States

Carers: Mean age 65 92% female

PWD: Severity of dementia not reported

Intervention was a targeted, multicomponent program led by an 3 months

occupational therapist. It involved educating caregivers about the impact of the environment on dementia-related behaviors and helping caregivers simplify objects in the home (e.g., remove clutter), break down tasks (e.g., one- or two-step commands, lay out clothing in the order in which it is to be donned), and involve other members of the family network or formal supports in daily caregiving tasks. For example, occupational therapists provided education about dementia and the relationship between excess stimulation (auditory and visual) and behavioral disturbances such as agitation or resistance to assistance with self-care. Strategies such as removing objects to simplify the home and breaking down tasks provided primary control mechanisms by which caregivers could manage problems areas, such as agitation or the inability to follow directions or initiate tasks by the PWD. The program consisted of five 90-min sessions that were spaced approximately every other week over 3 months.

Intervention involved two consultations, each lasting approximately Postintervention; 6 3 hr. During the first home visit, the interventionist focused on months

developing a therapeutic relationship with the caregiver while teaching underlying principles of the PLST model and instructing caregivers in the use of behavioral logs. At the second home visit, the plan of care was reviewed, specific behavioral techniques were taught, and the therapeutic relationship was reinforced. A plan for home safety was also outlined during this phase of the intervention and supporting literature was left with the caregiver. Referrals for support groups, legal counsel, and case management were provided. Phase 2 of the intervention consisted of telephone contacts with subjects (by the same interventionist), approximately every other week, for 6 months. Throughout both phases of the intervention, caregivers were encouraged to discuss feelings associated with the caregiving experience, as well as general life stressors they encountered, and to be actively involved in the care planning process.

1. Unclear

2. Unclear

3. High

4. Unclear

5. Unclear

6. Unclear

1. Unclear

2. Unclear

3. High

4. High

Unclear Unclear


Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Gitlin 2003 255 Carers: Mean age 61 "Home Environmental Skill-Building Program" 6, 12 months 1. Low

(Gitlin, Hauck, 76% female Occupational therapists provided caregivers with education, 2. Low

Dennis, & PWD: Mean MMSE 12/30 problem solving, and technical skills (task simplification, 3. High

Winter, 2005; (moderate severity) communication), and simple home modifications. The goal was to 4. Unclear

Gitlin et al., help caregivers modify the environment to support care recipient 5. Unclear

2003) physical functioning and reduce behavioral occurrences as well as 6. Unclear

Gitlin 2005 to reduce caregiver burden. Active treatment, consisting of five

United States 90-min home visits and one telephone session, occurred over 6 months. Maintenance, consisting of one home visit and three brief telephone sessions to reinforce strategy use and obtain closure, occurs over the subsequent 6 months.

Nobili 2004 69 Carers: Mean age 53 in the Structured intervention involving one home visit with an OT and 6, 12 months 1. Unclear

(Nobili et al, 2004) intervention group and 59 in one with a psychologist. 2. Unclear

Italy the control group. Gender: 1. Analysis of the data collected by researchers during the baseline 3. High

74% female in the control assessment of patients and principal carer; 4. Unclear

group and 89% female in the 2. Home visit by the psychologist to assess and give advice 5. Unclear

intervention group. on relationships within the family, care burden of carer and 6. Unclear

PWD: Mean MMSE 12 in the psychological consequences, changes in personality, verbal and

control group and 1 1 in the nonverbal communication, how problems are dealt by the family

intervention group (moderate and carer, psychological support, and training to carer;

severity) 3. Home visit by the occupational therapist to suggest strategies for the control of reactive behaviors and to maintain or improve residual functional ability, modification to home barriers, and adaptation of the environment to meet the patient's needs to limit dangerous situation.

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Bottino 2005 13 Carer details not reported Cognitive rehabilitation consisted of 90-min group sessions, once a Postintervention 1. Unclear

(Bottino et al., PWD: Mean MMSE was 23.5 in week, designed to stimulate patients' cognitive functions and to 2. Unclear

2005) the intervention group and enhance ADL and social interaction. Simultaneously, caregivers 3. High

Brazil 21.3 in the control group (either a familiar or a professional caregiver) attended support 4. Low

(mild severity) group sessions. This group aimed to offer support and to prevent early stress caused by the strain and burden of dementia caregiving, sharing information about the disease, and how to take care of the patient. Caregivers were always instructed to repeat some exercises at home in between the group sessions at least 3 times a week. 5. 6. Low Unclear

Martin-Cook 49 Carers: Age not reported Intervention involved four weekly skills-training sessions. In Session Posti nte rve ntio n; 1. Unclear

2005 70% female 1, the TFLS was administered to the patient while observed by 10 weeks 2. Unclear

(Martin-Cook, PWD: Mean MMSE 19/30 (mild the caregiver. In Session 2, the TFLS was read ministered with posti nte rve nti o n 3. High

Davis, Hynan, & severity) the addition of breaking tasks into smaller steps, as well as other 4. Unclear

Weiner, 2005) visual, auditory, tactile, or multimodal cues and prompts to 5. Unclear

United States facilitate improved performance. Caregivers were told that the goal was for patients to complete as many of the IADL tasks as independently as possible, but that assistance should be rendered when patients seemed unable to proceed on their own. In Session 3, the caregiver administered the TFLS, using facilitative prompts and cues as appropriate. The study coordinator offered suggestions and input as needed to assist caregivers in cueing specific tasks. Session 4 integrated the experience of the previous three sessions. Individualized suggestions to enhance communication and specific strategies to facilitate cueing on ADL were reviewed. Practical advice regarding home safety and information about community resources, companion service agencies, and other home health services was offered. 6. Unclear

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Graff 2006 135 Carers: Mean age 66 in Treatment consisted of 10 1-hr sessions delivered by OTs and Postintervention 1. Low

(Graff et al., 2008; intervention group; mean age held over 5 weeks and focused on both patients and their (6 weeks) and 12 2. Low

Graff et al., 2006; 61 in control group primary caregivers. In the first four sessions of diagnostics and weeks 3. High

Graff et al, 2007) 70% female goal defining, patients and primary caregivers learnt to choose 4. Low

Graff 2007 Mean MMSE 19/30 (mild and prioritize meaningful activities they wanted to improve. The 5. Low

Graff 2008 severity) occupational therapist evaluated the possibilities for modifying 6. Low

The Netherlands patients' homes and environment and observed patients' ability to perform relevant daily activities and to use compensatory and environmental strategies. Therapists also observed primary caregivers' supervision skills. In the remaining six sessions, patients were taught to optimize these compensatory and environmental strategies to improve their performance of daily activities. Primary caregivers were trained, by means of cognitive and behavioral interventions, to use effective supervision, problem solving, and coping strategies to sustain the patients' and their own autonomy and social participation. The total time spent for the intervention, including the time spent for treatment at home (10 hr), narrative analysis, reports, and multidisciplinary briefing, was about 18 hr per patient and caregiver together.

Stocking 2007 149 Caregiver details not reported Joint completion of the Planning Ahead Together document, a Posti nte rve ntio n, 1. Unclear

(Stocking et al. PWD: Mean MMSE 20/30 (mild research advance directive. 2 years 2. Unclear

2007) severity) 3. High

United States 4. 5. 6. Unclear Unclear Unclear

Table I. (continued)

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Chien 2008 88 Carers: Mean age 44 Education and support group for family members that lasted for 6 6, 12 months 1. Unclear

(Chien & Lee, 64% female months. A multidisciplinary committee—including a psychiatrist, a 2. Unclear

2008) PWD: 80% of the patients social worker, a case manager (nurse) from each center, and the 3. High

Hong Kong presented with low to researchers—selected 25 intervention objectives from dementia 4. Low

moderate impairments in guidelines and designed an information and psychological support 5. Low

ADLs (mild severity) system linking case managers and dementia care services, health 6. Unclear

professionals, and referrals. Case managers coordinated all levels of family care according to the results of a structured needs assessment. Each family was assigned one case manager who prioritized problem areas and formulated a multidisciplinary education program for each family on effective dementia care— for example, cognitive stimulation. The program consisted of 12 sessions that were held every other week and lasted two hr each. It consisted of five phases—orientation to dementia care (one session), educational workshop about dementia care (three sessions), family role and strength rebuilding (six sessions), community support resources (one session), and review of program and evaluation (one session). The case managers also conducted home visits and brief education about dementia care every other week and family health assessment once per month.

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Gitlin 2008 60 Carers: Mean age 65 Tailored Activity Program: 6 x 90-min home visits and two 15-min 4 months 1. Low

(Gitlin et al., 2008) 88% female telephone contacts by occupational therapists over 4 months. Three 2. Unclear

United States PWD: Mean MMSE 12/30 (moderate severity) activities per patient were developed based on assessments that identified the person's capacities. The interventionist developed a brief written activity prescription. Carers were instructed in how to facilitate the activity and also in stress reducing techniques to establish a calm emotional tone. As activities were mastered, interventionists generalized strategies to care problems and instructed them on how to downgrade activities for future declines. 3. High 4. Low 5. Unclear 6. Low

Eloniemi-Sulkava 125 Carers: Mean age intervention Family care coordinator, education sessions, geriatrician, support Months 6, 12, 1. Low

2009 (Eloniemi- group 78, control group 77 groups for families and carers, and individualized services. and 24 2. Low

Sulkava et al. Gender: Approximately 0.75 Program lasted for up to 24 months 3. High

2009) were female 4. High

Finland PWD: Mean MMSE 13 in the intervention group and 14 in the control group (moderate severity) 5. Low 6. High

Logsdon 2010 142 Carers: Mean age intervention Alzheimer's Association Early Stage Memory Loss Program involves Postintervention 1. High

(Logsdon et al. group 71, control group 62 nine sessions for the PWD and families and carers on topics such 2. High

2010) Gender 68% as information about the condition, relationships, daily living skills, 3. High

United States PWD: Mean MMSE 23/30 (mild severity) self-esteem, future planning, and legal and financial considerations 4. Unclear 5. Unclear 6.Unclear


Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Gitlin 201 Ob 272 Carers: Mean age 66 Intervention occurred over 24 weeks and involved up to nine Months 4 and 6 1. Low

United States Gender 82% female occupational therapy sessions and two nursing sessions plus three 2. Low

(Gitlin, Winter, PWD: Mean MMSE 13/30 phone calls. Goal setting, home assessment, problem solving and 3. High

Dennis, Hodgson, (moderate severity) action plans, and strategies to reduce families' and carers' stress 4. Low

& Hauck, 2010) were used and assistive devices provided. The nurse addressed any potential causes of behavioral symptoms related to medical conditions (e.g., pain, dehydration) 5. Unclear 6. Unclear

Gitlin 2010a 237 Carers: Mean age 82 "COPE" intervention: Assessment (patient capability, medical Months 4 and 9 1. Low

(Gitlin, Winter, Gender: 68% female testing, home environment, family carer communication, 2. Low

Dennis, Hodgson, PWD: Mean MMSE 13/30 concerns), family carer education (patient capabilities, potential 3. High

& Hauck, 2010 (moderate severity) effects of medications, pain, constipation, dehydration), and 4.Low

United States family carer training to address concerns and help reduce stress. Training in problem solving, communication, engaging patients in activities, and simplifying tasks was tailored to the needs of the dyad. Dyads received up to 10 sessions over 4 months with an occupational therapist 5. Unclear 6. Low

Chien 201 1 92 Carers: Mean age 45 Program was conducted fortnightly over 5 months. A Week 1, Month 12 1. Unclear

(Chien & Lee, Gender 66% multidisciplinary group identified intervention goals. The program and Month 18 2. Unclear

201 1) PWD: Severity ranged from included case management, education, support and problem 3. High

Hong Kong mild (17%), moderate (50%), to severe (33%; moderate severity) solving, information about relationships, community resources, and improvement of home care and finance skills. Peer mentors helped with problem solving. 4. Low 5. Low 6. Unclear

Reference N Length of Risk of

Country carers Participants Intervention follow-up bias3

Kwok 2012 102 Carers: Mean age 78 Support from case manager via home visits and phone calls, Months 4 and 12 1. Unclear

(Kwok, Lam, & Gender intervention group 59%, ho me-based cognitive stimulation activities for the PWD and a 2. Unclear

Chung, 2012) control group 56% telephone hotline to access the case manager. An OT advised on 3. High

Hong Kong PWD: Mean MMSE 18/30 coping strategies, skills training, and behavioral management and 4. Unclear

(moderate severity) linked the person with local services. 5. 6. High Unclear

Waldorff 2012 330 Carers: Mean age 66 "DAISY" intervention. Tailored program conducted over 8 to 12 12 months 1. Low

(Waldorff et al., Gender intervention group 53% months. Involved up to seven counseling sessions (4-5 with the 2. Low

2012) female, control group 55% families and carers present), a group education course about the 3. High

Phung 2013 female condition building in peer support, phone call support, written 4. Low

Sogaard 2014 PWD: Mean MMSE 24/30 (mild information, and a journal. 5. High

Denmark severity) 6. Low

Judge 2013 128 Carers: Mean age 65 Combines educational skills and cognitive rehabilitation training. Six Month 3 1. Unclear

(Judge, Yarry, Gender 74% female sessions provided to the dyad covering educational information, 2. Unclear

Looman, & Bass, PWD: Mean MMSE 23/30 (mild effective communication, managing memory, staying active, 3. High

2013) severity) recognizing emotions, and behaviors 4. Low

United States 5. 6. High Unclear

Note. Populations were categorized based on severity. The mean MMSE (or similar) was used where MMSE 19 to 23 was considered mild and MMSE 10 to 18 was considered moderate. REACH = Resources for Enhancing Alzheimer's Caregiver Health; BPSD = behavioral and psychological symptoms of dementia; PWD = person with dementia; AD = Alzheimer's disease; CG = caregiver education; NPI-Q = Neuropsychiatrie Inventory-Questionnaire; OT = occupational therapist; ADL = activities of daily living; DAISY = Danish Alzheimer Intervention Study; MMSE = Mini-Mental State Examination; CTIS = Computer-Telephone Integration System; FITT-D = Family Intervention: Telephone Tracking-Dementia; FITT-NH = Family Intervention: Telephone Tracking-Nursing Home; CD = compact disc; CDR = Clinical Dementia Rating; PLST = progressively lowered stress threshold; I ADL = instrumental activities of daily living; COPE = care of persons with dementia in their environments a Risk of bias: (a) random sequence generation, (b) allocation concealment, (c) blinding of participants and personnel, (d) blinding of outcome assessment, (e) incomplete outcome data, (f) selective reporting.

decreased risk of depression (odds ratio = 0.15, confidence interval = [0.04, 0.65],p < .013; Kuo et al., 2013).

Dyadic interventions. Multicomponent interventions involving both the carer and the person with dementia significantly reduced depressive symptoms (Figure 2; SMD = -0.33, 95% CI = [-0.62, -0.04]; seven studies, N = 663). Four studies did not provide data that could be included in the metaanalysis. One of these studies reported no significant effect associated with intervention (Chu, Edwards, Levin, & Thompson, 2000), whereas the other three studies reported a statistically significant improvement in depressive symptoms as a result of the intervention. Buckwalter and colleagues found that those in the intervention group were significantly less depressed than caregivers receiving usual care at 6 months (p = .0007), but outcome at 12 months did not reach statistical significance (Buckwalter et al., 1999). Two other studies reported an improvement in depressive symptoms as a result of the intervention (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010; Logsdon et al., 2010), with Gitlin and colleagues reporting that 53% of carers in the intervention group reported depressive symptoms versus 68% in the control group (p = .02). There was no statistically significant difference between carer only interventions and dyadic interventions (p = .41).

Impact on the carer's quality of life

Carer only interventions. Although the overall effect on quality of life was not statistically significant, there was a trend in favor of intervention (SMD = 0.14, 95% CI = [-0.06, 0.34], three studies, N = 412). One study that did not report data suitable for contributing to the meta-analysis found no significant improvements in quality of life of carers postintervention (Davis, Tremont, Bishop, & Fortinsky, 2011).

Dyadic interventions. Analysis revealed a trend toward improved quality of life associated with intervention (Figure 3); however, the confidence intervals were wide and the effect was not statistically significant (SMD = 0.32, 95% CI = [-0.04, 0.68], four studies, N = 589). A study conducted by Logsdon and colleagues could not be included in the analysis; this study found no significant differences between treatment and control groups in quality of life (Logsdon et al., 2010).

When considering all multicomponent interventions (carer only plus dyadic), the analysis demonstrated an overall positive effect (SMD = 0.24, 95% CI = [0.04, 0.44]). There was no statistically significant difference between carer only interventions and dyadic interventions (p = .39).

Experimenta Control Std. Mean Difference Std. Mean Difference

Study or Subgroup Mean SD Total Mean SD Total Weight IV, Random, 95% CI IV, Random, 95% CI

4.1.1 Multicomponent carer

Au 2014 12.64 11.1 30 14.97 8.69 30 4.7% -0.23 [-0.74, 0.28]

Belle 2006 7.8 5.2 96 9.1 6 86 7.2% -0.23 [-0.52, 0.06]

Davis 2011 15.04 13.26 24 9.36 6.21 22 4.0% 0.53 [-0.06,1.12]

Eisdorfer 2003 13.87 8.8 59 13.28 7.4 41 5.9% 0.07 [-0.33, 0.47]

Gaugler2015 33.47 9.77 17 35.18 10.79 19 3.5% -0.16 [-0.82, 0.49]

Gonzalez 2014 14.49 8.89 50 14.07 8.89 52 6.0% 0.05 [-0.34, 0.44]

Joling 2012 12.89 8.0952 81 14.78 6.9496 86 7.0% -0.25 [-0.55, 0.05]

Livingstone 2013 4.9 3.9 150 5.7 4 75 7.4% -0.20 [-0.48, 0.08]

Martindale-Adams 2013 10 6.5 77 10.2 7.1 77 6.9% -0.03 [-0.35, 0.29]

Mittelman 1993 -1.1 5 190 0.3 6 190 8.3% -0.25 [-0.45, -0.05] ■

Mohide 1990 21.5 12.98 22 48.5 14.38 20 2.9% -1.94 [-2.68, -1.19]

Tremont 2008 6.63 5.14 16 7.82 7.24 17 3.3% -0.18 [-0.87, 0.50]

Subtotal (95% CI) 812 715 66.9% -0.18 [-0.37, 0.00] ♦

Heterogeneity: Tau2 = 0.06; Chi2 = 31.55, df = 11 (P = 0.0009); l2 = 65%

Test for overall effect: Z = 1.92 (P = 0.05)

4.1.2 Multicomponent carer plus person with dementia

Bottino 2005 4.17 3.37 6 6 6 7 1.6% -0.34 [-1.44, 0.76]

Gitlln (TAP) 2008 13.1 9.4 27 14.3 10.2 29 4.5% -0.12 [-0.65, 0.40]

Graff 2006 5.B 4.8 58 12.6 8.5 56 6.0% -0.98 [-1.37, -0.59] ■—

Judge 2013 3.75 3.09 59 4.64 3.19 59 6.3% -0.28 [-0.64, 0.08]

Martin Cook 2005 1.67 2.2061 23 2.09 2.3515 24 4.1% -0.18 [-0.75, 0.39]

Waldorf 2012 4.97 2.06 141 5.38 5.77 150 8.0% -0.09 [-0.32, 0.14]

Zarit1982 41.36 10.02 14 43.59 6.56 10 2.6% -0.25 [-1.06, 0.57]

Subtotal (95% CI) 328 335 33.1% -0.33 [-0.62, -0.04]

Heterogeneity: Tau2 = 0.08; Chi2 = 15.53, df = 6(P = 0.02); I2 = 61%

Test for overall effect: Z = 2.24 (P = 0.03)

Total (95% CI) 1140 1050 100.0% -0.23 [-0.39, -0.08] ♦

Heterogeneity: I au' = u.ub; uni' = 4B.31, di = 1 o (r = u.uuui); l' = t>3% Test for overall effect: Z = 2.97 (P = 0.003) Test for subgroup differences: Chi2 = 0.67, df = 1 (P = 0.41), I2 = 0% -2 -1 Favours intervention 1 2 Favours usual care

Figure 2. Multicomponent intervention versus usual care: Effect on depression postintervention. Note. CI = confidence interval.

Study or Subgroup

Experimental Mean SD Total

Control Mean SD

Std. Mean Difference Weight IV, Random, 95% CI

Std. Mean Difference IV, Random, 95% CI

4.2.1 Multicomponent - carer

Joiing 2012 88.71 18.2708 81 86.96 17.5373

Livingstone 2013 30.7 6.5 137 29.8 5.8

Mohide 1990 0.64 0.33 22 0.53 0.41

Subtotal (95% CI) 240 Heterogeneity: Tau2 = 0.00; Chi2 = 0.31, df = 2 (P = 0.85); I2 = 0% Test for overall effect: Z = 1.37 (P = 0.17)

4.2.2 Multicomponent - carer plus person with dementia

86 66 20 172

16.7% 17.1% 7.7% 41.4%

Test for overall effect: Z = 2.33 (P = 0.02) Test for subgroup differences: Chi2 = 0.75, df =

0.10 [-0.21, 0.40] 0.14 [-0.15, 0.44] 0.29 [-0.32, 0.90] 0.14 [-0.06, 0.34]

Chien 2008 75.1 16.8 44 69.8 16.7 44 12.3% 0.31 [-0.11,0.73]

Chien 2011 80.4 15 46 65.2 17.5 46 12.0% 0.92 [0.49, 1.36]

Judge 2013 10.92 3.04 59 10.69 3.4 59 14.4% 0.07 [-0.29, 0.43]

Waldorf 2012 81.6 16.4 141 80.3 18.2 150 20.0% 0.07 [-0.16, 0.30]

Subtotal (95% CI) 290 299 58.6% 0.32 [-0.04, 0.68]

Heterogeneity: Tau2 = 0.10; Chi2 = ^ 12.64, df = 3 (P = 0.005); ; I2 = ' 76%

Test for overall effect: Z = 1.75 (P = 0.08)

Total (95% CI) 530 471 100.0% 0.24 [0.04, 0.44]

Heterogeneity: Tau2 = 0.04; Chi2 = = 13.45, df = 6 (P = 0.04); I2 = 55%

1 (P = 0.39), I2 = 0%

-1 -0.5 0 0.5 1 Favours usual care Favours intervention

Figure 3. Multicomponent interventions versus usual care: Effect on quality of life postintervention. Note. CI = confidence interval.

Impact on level of carer burden

Carer only interventions. The analysis found there was no significant effect on carer burden (Figure 4, SMD = -0.10, 95% CI = [-0.40, 0.20], six studies, N = 497). A study conducted by Logsdon and colleagues, which could not be included in the analysis, similarly found no significant reduction in levels of burden (Logsdon et al., 2010).

Dyadic interventions. Six studies were pooled to examine the efficacy of dyadic training on carer burden. The result was statistically not significant due to wide confidence intervals. However, there was a strong trend suggesting efficacy of intervention (SMD = -0.34, 95% CI = [-0.70, 0.01], six studies, N = 598). One study that could not be included in the analysis found that following intervention there was a significant reduction in carer burden in the intervention group relative to those in the control group. However, at 6 months, there were no differences between groups (Chu et al., 2000). There was no statistically significant difference between carer only interventions and dyadic interventions (p = .30).

Impact on behavioral and psychological symptoms of dementia

Carer only interventions. We pooled three studies evaluating the effects of intervention on behavioral and psychological symptoms of dementia measured using a tool such as the Neuropsychiatric Inventory or the Revised Memory and Behavior Problem Checklist (Figure 5). Overall, the effect was not significant although the analysis suggested positive effects on intervention (SMD = -0.41, 95% CI = [-0.85, 0.03], three studies, N = 317).

Dyadic interventions. We also found that dyadic interventions appeared to be beneficial. However, the results were statistically not significant (SMD = -0.19, 95% CI = [-0.49, 0.11], 10 studies, N = 1,230).

Overall, the meta-analysis suggested a reduction in behavioral and psychological symptoms of dementia (SMD = -0.24, 95% CI = [-0.49, 0.01]). There was no statistically significant difference between carer only interventions and dyadic interventions (p = .42).

Impact on caregiver upset with behavioral and psychological symptoms of dementia. Fewer studies examined caregiver reaction or upset with symptoms. Overall, we found that multicomponent interventions were effective in reducing caregiver reaction or upset (Figure 6, SMD = -0.26, 95% CI = [-0.42, -0.10], seven studies, 867 participants). The statistical heterogeneity in the analysis was lower than in the other analyses (I2 = 21%).

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Experimental Control Std. Mean Difference Std. Mean Difference

Study or Subgroup Mean SD Total Mean SD Total Weight IV, Random, 95% CI IV, Random, 95% CI

4.5.1 Multicomponent -carer

Belle 2006 10.1 2.4 96 11.1 2.7 86 8.9% -0.39 [-0.68, -0.10] -

Gonzalez 2014 1.31 0.64 50 1.34 0.64 52 8.2% -0.05 [-0.43, 0.34]

Tremont 2008 8.56 6.43 16 20.12 13.16 17 5.4% -1.08 [-1.82,-0.34]

Subtotal (95% CI) 162 155 22.6% -0.41 [-0.85, 0.03]

Heterogeneity: Tau2 = 0.10; Chi2 = 6.17, df = 2 (P = 0.05); l2 = 68%

Test for overall effect: Z = 1.82 (P = 0.07)

4.5.2 Multicomponent carer plus person with dementia

Chang 1999 14.83 6.1 31 14.94 6.21 34 7.4% -0.02 [-0.50, 0.47]

Chien 2008 68.1 10.2 44 84.5 9.8 44 7.4% -1.63 [-2.11,-1.14]

Chien 2011 80.1 10.2 46 81.5 9.8 46 8.0% -0.14 [-0.55, 0.27]

Gltiin (COPE) 2010 6.7 10.6 102 5.5 8 107 9.1% 0.13 [-0.14, 0.40]

Gltlin (HESB) 2003 4.58 1.47 89 4.64 1.64 101 9.0% -0.04 [-0.32, 0.25]

Gltiin (TAP) 2008 18.8 17.6 27 60.8 85.3 29 6.9% -0.66 [-1.20,-0.12]

Gltlin 2001 17.2 7.73 93 14.43 9.82 78 8.9% 0.32 [0.01, 0.62]

Martin Cook 2005 12.58 2.53 24 11.95 2.64 23 6.7% 0.24 [-0.33, 0.81]

Waldorf 2012 4.59 4.12 141 4.45 4.24 150 9.4% 0.03 [-0.20, 0.26]

Zarit1982 8.87 19.68 11 17.75 19.75 10 4.6% -0.43 [-1.30, 0.44]

Subtotal (95% CI) 608 622 77.4% -0.19 [-0.49, 0.11]

Heterogeneity: Tau2 = 0.18; Chi2 = 55.15, df = 9 (P < 0.00001); I2 = 84%

Test for overall effect: Z = 1.23 (P = 0.22)

Total (95% CI) 770 12 (P = 1 (P 777 100.0% -0.24 [-0.49, 0.01] I I 1

Heterogeneity: iau' = и ли; uni' = вел t, ат = Test for overall effect: Z = 1.87 (P = 0.06) Test for subgroup differences: Chi2 = 0.66, df < u.uuuui ); 1' = = 0.42), I2 = 0% 82% -2 -1 Favours intervention 1 2 Favours usual care

Figure 5. Multicomponent interventions versus usual care: Effect on behavioral and psychological symptoms of dementia postintervention.

Note. CI = confidence interval; ACT = Advancing Caregiver Training; TAP = Tailored Activity Program; COPE = care of persons with dementia in their environments; HESB = home environmental skill-building program.

Experimental Control Std. Mean Difference Std. Mean Difference

Study or Subgroup Mean SD Total Mean SD Total Weight IV, Random, 95% CI IV, Random, 95% CI

4.6.1 Multicomponent - carers

Martindale-Adams 2013 17.7 12 77 22.4 16.2 77 18.2% -0.33 [-0.65, -0.01] —■—

Tremont 2008 8.56 6.43 16 20.12 13.16 17 4.3% -1.08 [-1.82,-0.34]

Subtotal (95% CI) 93 94 22.5% -0.63 [-1.35, 0.09]

Heterogeneity: Tau2 = 0.20; Chi2 = 3.36, df = 1 (P = 0.07); I2 = 70%

Test for overall effect: Z = 1.71 (P = 0.09)

4.6.2 Multicomponent - carer plus person with dementia

Gitlin (ACT) 2010 4.6 2.4 117 5.4 2.3 122 24.8% -0.34 [-0.59, -0.08] ■

Gitlin (HESB) 2003 0.65 0.75 89 0.78 0.85 101 21.3% -0.16 [-0.45, 0.12] —»

Gitlin (TAP) 2008 4.5 1.8 27 4.8 2.5 29 8.0% -0.14 [-0.66, 0.39]

Gitlin 2001 0.43 0.31 93 0.45 0.29 78 19.8% -0.07 [-0.37, 0.23] —■

Zarit 1982 9.23 7.28 14 10.8 3.45 10 3.6% -0.25 [-1.07, 0.56]

Subtotal (95% CI) 340 340 77.5% -0.20 [-0.35, -0.05] ♦

Heterogeneity: Tau2 = 0.00; Chi2 = 2.05, df = 4 (P = 0.73); I2 = 0%

Test for overall effect: Z = 2.60 (P = 0.009)

Total (95% CI) 433 434 100.0% -0.26 [-0.42, -0.10] | |

Heterogeneity: iau' = u.ui; uni' =, at = b (r = u.z/y, i- = Test for overall effect: Z = 3.20 (P = 0.001) Test for subgroup differences: Chi2 = 1.29, df = 1 (P = 0.26), I2 = 22.4% -1 -0.5 Favours intervention I | 0.5 1 Favours usual care

Figure 6. Multicomponent interventions versus usual care: Effect on caregiver upset with behavioral and psychological symptoms of dementia postintervention.

Note. CI = confidence interval; ACT = Advancing Caregiver Training; TAP = Tailored Activity Program; COPE = care of persons with dementia in their environments; HESB = home environmental skill-building program.

Impact on independence in ADL. Nine studies reported outcomes for ADL in the person with dementia of which eight were dyadic in nature. Overall, the effect was not significant although the direction of effect was positive (Figure 7, SMD = 0.17, 95% CI = [-0.15, 0.57], N = 1,465).

Effect of interventions based on the severity of symptoms of the person with dementia. There were too few studies to further compare the effect of carer focused and dyadic interventions based on the severity of the symptoms in the person with dementia. However, we did conduct sensitivity analyses to examine whether severity of symptoms was a moderator of effect of care-giver interventions for each outcome. Results are presented in Table 2. It can be seen that studies involving people with milder severity symptoms of dementia appeared to be more effective in reducing levels of depression and burden in carers. Whereas, studies involving people with moderate to severe symptoms of dementia appeared to be more effective in improving the quality of life of the carer.


Family members and friends (informal carers) play an important role in the day-to-day assistance and support of people with dementia. Informal carers typically have poorer outcomes in terms of well-being, depression, quality of life, health status, and use of health care resources (Argimon et al., 2004; Bremer et al., 2015; Spector, Orrell, Charlesworth, & Marston, 2015). This review included 40 studies evaluating multicomponent interventions for carers of people with dementia. Meta-analysis demonstrated that multicompo-nent interventions can reduce caregiver depressive symptoms, decrease burden, reduce caregiver's upset with symptoms of dementia and improve the caregiver's quality of life. Multicomponent interventions can also reduce behavioral and psychological symptoms of dementia, and our analyses suggested beneficial effects in terms of delaying functional decline although some interventions did this more effectively than others.

There were no statistically significant differences between the effects of carer focused interventions and dyadic interventions for any of the outcomes although inspection of the forest plots suggests that dyadic interventions appeared to reduce carer burden to a greater extent. Furthermore, studies evaluating carer focused interventions rarely collected outcome measures relating to the functional independence of the person with dementia, suggesting that this is not one of the aims of treatment. Qualitative research has found that the quality of the relationship between the person with dementia and the carer depends not only on the presence of depression or anxiety in the

Study or Subgroup

Experimental Mean SD Total

Control Std. Mean Difference

Mean SD Total Weight IV, Random, 95% CI

Std. Mean Difference IV, Random, 95% CI

4.4.1 Multicomponent - carer

Belle 2006 3.5 2 86

Subtotal (95% CI) 86

Heterogeneity: Not applicable Test for overall effect: Z = 0.61 (P = 0.54)

4.4.2 Multicomponent - carer plus person with dementia

12.4% 12.4%

Test for overall effect: Z = 1.06 (P = 0.29)

Test for subgroup differences: Chi2 = 1.58, df = 1 (P = 0.21), I2 = 36.9%

-0.09 [-0.39, 0.21] -0.09 [-0.39, 0.21]

Bottino 2005 10.83 2.71 6 10.57 2.43 7 5.3% 0.09 [-1.00,1.19]

Chang 1999 19.2 8.17 34 19.72 8.41 31 10.5% -0.06 [-0.55, 0.42]

Gitlin (COPE) 2010 3.7 1.3 102 3.3 1.3 107 12.7% 0.31 [0.03, 0.58]

Gitlin (HESB) 2003 3.67 1.72 89 3.75 1.89 101 12.5% -0.04 [-0.33, 0.24]

Gitlin 2001 3.24 1.59 93 3.57 1.38 78 12.4% -0.22 [-0.52, 0.08]

Graff 2006 1.2 0.7 68 0.2 0.8 67 11.7% 1.32 [0.95, 1.70]

Martin Cook 2005 39.08 15.6277 24 31.05 15.9701 23 9.5% 0.50 [-0.08, 1.08]

Waldorf 2012 58 13.4 141 60.5 13.5 150 13.0% -0.19 [-0.42, 0.05]

Subtotal (95% CI) 557 564 87.6% 0.21 [-0.15, 0.57]

Heterogeneity: Tau2 = 0.22; Chi2 = 56.74, df = 7 (P < 0.00001); I2 = 88%

Test for overall effect: Z = 1.13 (P = 0.26)

Total (95% CI) 643 650 100.0% 0.17 [-0.15, 0.49]

Heterogeneity: Tau2 = 0.19; Chi2 = 58.40, df = 8 (P< 0.00001); l2 = 86%

-1 -0.5 0 0.5 1 Favours usual care Favours intervention

Figure 7. Multicomponent interventions versus usual care: Effect on activities of daily living postintervention. Note. COPE = care of persons with dementia in their environments; HESB = home environmental skill-building program.

Table 2. Effect of Interventions for Carers on Different Outcomes Based on the Severity of Symptoms of the PWD.

Outcome Milder severity group Moderate to severe group

Carer -0.31 (95% CI = [-0.51, -0.30 (95% CI = [-0.64,

depression -0.10])* 0.04])

Eight studies (1,008 Seven studies (630)

participants) participants

Carer quality 0.12 (95% CI = [-0.02, 0.65 (95% CI = [0.03,

of life 0.25]) 1.26])*

Five studies (867 Two studies (134

participants) participants)

Carer burden -0.43, 95% CI = [-0.81, -0.25 (95% CI = [-0.53,

-0.05])* 0.04)

Three studies (167 Seven studies (858

participants) participants)

ADL (person 0.45 (95% CI = [-0.43, 0.06 (95% CI = [-0.19,

with dementia) 1.33]) 0.31])

Four studies (486 Three studies (571

participants) participants)

BPSD global -0.59 (95% CI = [-1.49, -0.18 (95% CI = [-0.42,

measure 0.30]) 0.07])

Four studies (459 Five studies (729

participants) participants)

BPSD upset -1.08 (95% CI = [-1.82, -0.27 (95% CI = [-0.42,

-0.34])* -0.11])*

One study (33 Four studies (639

participants) participants)

Note. CI = confidence interval; ADL = activities of daily living. *Significant p<0.05.

carer, but also the presence of depression, irritability, behavioral disturbances, and quality of life status of the person with dementia, emphasizing the need for interventions targeting both parties to improve mood and quality of life (Spector et al., 2015). Given the interdependent nature of the health and quality of life of people with dementia and their family members, it is plausible that providing multicomponent interventions that target the dyad, rather than just the caregiver or person with dementia themselves, would be more effective. We did not identify any studies that directly compared carer focused with dyadic interventions. Studies to compare direct differences between carer focused interventions and dyadic interventions are required.

We also examined whether effects varied based on the severity of symptoms of the people with dementia included in the population. Studies were

categorized rather arbitrarily based on the average Mini-Mental State Examination score of participants, which provided an overall reflection of the study group. The analyses suggest that there is more potential to reduce depressive symptoms and carer burden when the person has milder severity dementia. Interestingly, there appeared to be more capacity to improve the carer's quality of life when the person with dementia had moderate to severe symptoms. Quality of life is difficult to change through intervention. It may be that carer quality of life quickly deteriorates when the symptoms of dementia change from mild to moderate/severe and so there is more potential to make a difference at this point. Caution should be applied in interpreting these findings because of the relatively small number of studies involved in the analyses.

This review supports the findings of other reviews of caregiver interventions (Brodaty & Arasaratnam, 2012; Olazaran et al., 2010; Van't Leven et al., 2013) but adds to the body of literature by examining effect on a number of outcomes, including meta-analysis and comparing different forms of multicomponent interventions. The effect sizes found for all outcomes are considered small (Cohen, 1992). However, living with dementia and providing care for someone with dementia is challenging; hence, even small improvements may be considered clinically significant. This is particularly important in dementia care where there are few effective treatments for the person with dementia.

The total worldwide cost of dementia in 2015 was US$818 billion and this is projected to rise (Prince et al., 2015). This estimate reflects direct medical costs (approx. 20% of global costs), direct social care costs (approx. 40%), and the costs of informal care (valued using an opportunity cost approach and accounting for approximately 40%; Prince et al., 2015). Governments have identified the need to invest money to identify a cure for dementia and to delay onset of dementia. In 2013, the G7 (United States, Japan, Germany, France, United Kingdom, Italy, Canada) launched the "Global Action Against Dementia." The initiative was designed to increase research funding, promote participation in trials, and enhance collaboration and data sharing. The group declared an ambition to identify a cure, or a disease modifying therapy for dementia by 2025. However, it has been acknowledged that this is an ambitious target and that we cannot and should not delay implementation of treatment and care that has been shown to be effective in improving outcomes for people with dementia (Prince et al., 2015). Although caregiver interventions may not be disease modifying, they have been shown to improve outcomes for both the person with dementia and their carer and there is some evidence of cost-effectiveness (Knapp, Iemmi, & Romeo, 2013).

Nonpharmacological interventions for people with dementia and their carers are heterogeneous in terms of content, dose, and the person delivering the treatment. Studies also involve participants with different severities of dementia and from different cultural backgrounds though the majority of studies were conducted in the United States. Pooling studies in the presence of clinical heterogeneity can be problematic but the reality in clinical practice is that most of these interventions are not replicated "as per protocol." Clinicians are most likely to provide their own form of multicomponent intervention based on what they have been taught, their organizational culture, and their previous clinical experiences. The benefit of the meta-analyses presented within this review is that they provide an overall indication of the magnitude and types of effect. Indeed, a number of translational studies of caregiver interventions have demonstrated differences between intervention delivery in the context of a highly structured research trial and delivery in "real world" settings (Dopp, Graff, Rikkert, Nijhuis van der Sanden, & Vernooij-Dassen, 2013; Gitlin, Jacobs, & Earland, 2010).

In this review, we did not look at effects on all outcomes (e.g., service use) and we pooled different outcome measures to calculate the SMD, which is more difficult to interpret. We also did not conduct subgroup analyses based on intervention dose, content, and different populations. Subgroup analyses can be insightful but can also be difficult when considering complex interventions as it is hard to determine clinically meaningful cutoff points. For example, how should one compare low and high dose interventions when intervention duration within the studies is consistently spread between 2 and 10 hr?

One of the limitations of this review is that we used an existing systematic review to source studies published until 2008 and then updated searches for more recent studies. Thus, there were two slightly different methods used to source studies. The existing systematic review included all nonpharmaco-logical interventions, whereas we were only interested in caregiver intervention. Our search term was developed based on terms used by the Cochrane Dementia and Cognitive Impairment Group and the BMJ Clinical Evidence terms for study design (British Medical Journal Clinical Evidence, 2016). Furthermore, we relied on the details describing the interventions provided in the publications to categorize studies. This may have led to us categorizing studies as being "education focused" or "support focused" and thus excluded from this review when they actually involved additional content that was poorly described or omitted.

In conclusion, there is a substantial body of evidence that multicomponent interventions can improve a range of important outcomes for both the person

with dementia and his or her carer. There was no evidence that the dyadic approach offered an advantage.


Search Strategy

Database: Ovid MEDLINE(R)

1. exp Dementia/

2. Wernicke Encephalopathy/

3. Delirium, Dementia, Amnestic, Cognitive Disorders/

4. dement*.mp.

5. alzheimer*.mp.

6. (lewy* adj2 bod*).mp.

7. (chronic adj2 cerebrovascular).mp.

8. ("organic brain disease" or "organic brain syndrome").mp.

9. ("normal pressure hydrocephalus" and "shunt*").mp.

10. "benign senescent forgetfulness".mp.

11. (cerebr* adj2 deteriorat*).mp.

12. (cerebral* adj2 insufficient*).mp.

13. (pick* adj2 disease).mp.

14. (creutzfeldt or jcd or cjd).mp.

15. huntington*.mp.

16. binswanger*.mp.

17. korsako*.mp.

18. or/1-17

19. (review or review,tutorial or review, academic).pt.

20. (medline or medlars or embase or pubmed or cochrane).tw,sh.

21. (scisearch or psychinfo or psycinfo).tw,sh.

22. (psychlit or psyclit).tw,sh.


24. ((hand adj2 search$) or (manual$ adj2 search$)).tw,sh.

25. (electronic database$ or bibliographic database$ or computeri?ed database$ or online database$).tw,sh.

26. (pooling or pooled or mantel haenszel).tw,sh.

27. (peto or dersimonian or der simonian or fixed effect).tw,sh.

28. (retraction of publication or retracted publication).pt.

29. or/20-28

30. 19 and 29



33. (meta-analys$ or meta analys$ or metaanalys$).tw,sh.

34. (systematic$ adj5 review$).tw,sh.

35. (systematic$ adj5 overview$).tw,sh.

36. (quantitativ$ adj5 review$).tw,sh.

37. (quantitativ$ adj5 overview$).tw,sh.

38. (quantitativ$ adj5 synthesis$).tw,sh.

39. (methodologic$ adj5 review$).tw,sh.

40. (methodologic$ adj5 overview$).tw,sh.

41. (integrative research review$ or research integration).tw.

42. or/31-41

43. 30 or 42

44. 18 and 43

45. Caregivers/

46. (family or caregiver* or carer*).ti,ab.

47. (assess* or treatment* or therap* or counsel* or intervention* or support or support group* or psychosocial* or nonpharmacologic* or relax* or educat* or psychoeducat* or advice).ti,ab.

48. 46 and 47

49. 45 or 48

50. 44 and 49

51. limit 50 to (english language and humans and yr = "2005-2014")

We then conducted a search using a randomized controlled trial filter as follows for studies between January 2008 and 2014.

1. "randomized controlled trial".pt.

2. (random$ or placebo$ or single blind$ or double blind$ or triple blind$).ti,ab.

3. (retraction of publication or retracted publication).pt.

4. 1 or 2 or 3

5. (animals not humans).sh.

6. ((comment or editorial or meta-analysis or practice-guideline or review or letter or journal correspondence) not "randomized controlled trial").pt.

7. (random sampl$ or random digit$ or random effect$ or random survey or random regression).ti,ab. not "randomized controlled trial".pt.

8. 4 not (5 or 6 or 7)

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.


The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: These authors gratefully acknowledge funding provided by the National Health and Medical Research Council (NHMRC) Partnership Centre on Dealing with Cognitive and Related Functional Decline in Older People (Grant No. GNT9100000).


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