Evidence profile: caregiver support

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Integrated care for older people (ICOPE) Guidelines on community-level interventions to manage declines in intrinsic capacity

Evidence profile:

caregiver support

Scoping question:

Does respite care or psychosocial support produce any benefit or harm for family

caregivers of care-dependent older people?

The full ICOPE guidelines and complete set of evidence profiles are available at:

who.int/publications/i/item/9789241550109

Painting: “Wet in Wet” by Gusta van der Meer. At 75 years of age, Gusta has an artistic style that is fresh, distinctive and vibrant. A long-time lover of art, she finds that dementia is no barrier to her artistic expression.

Appreciated not just for her art but also for the support and encouragement she gives to other artists with dementia, Gusta participates in a weekly art class. Copyright by Gusta van der Meer. All rights reserved

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Background

Worldwide, 349 million people are estimated to be care-dependent, of whom 18 million (5%) are children aged under the age

of 15 years, and 101 million (29%) are older people 60 years of age and over. Care-dependence is defined as the need for frequent human help or care beyond that habitually required by a healthy adult. In older people, coexisting chronic diseases (multimorbidity) is frequently associated with the need for health and social care (1).

In most countries, care for older people is provided by informal caregivers (including spouses, adult offspring and other relatives or friends), and the majority of primary caregivers are women (2).

Evidence shows that caregivers of people with severe declines in capacity are at high risk of experiencing psychological distress and depression (3). In many low- and middle-income countries, formal systems of long-term care are poorly developed; the negative effects of caregiving therefore have a strong impact on the physical, emotional and economic status of family caregivers (2).

In the past two decades, psychosocial interventions to support informal caregivers have been extensively studied. Psychosocial support includes different types of service provision, such as psychoeducational, counselling, skill-building and information or emotional support, which may be provided through agency-based

settings or in the carer’s home (4). These interventions focus on improving the carer’s ability to manage everyday caregiving tasks (4). Furthermore, recent research has explored technology- based interventions, including the use of telephone and computer services, to provide adequate support and education to caregivers, with accessibility being a key advantage (5). Another popular intervention is respite care, defined as the provision of a temporary break in caregiving activities for the informal carer aimed at

reducing distress and improving the carer’s well-being (6). Respite can be delivered in different ways, including in-home services, adult day care or in institutions, such as care homes or hospices (7).

Evidence from earlier reviews suggest that most trials of caregiver interventions were from high-income countries and were largely dominated by a range of programmes and services developed to assist caregivers of people with dementia. Therefore, the

effectiveness of these interventions in different social, cultural and geographical contexts is unclear (2). Of all the chronic diseases, dementia is a particularly important contributor to caregiver strain.

However, the extent to which these interventions can be

administered to informal caregivers of care-dependent older people is unknown.

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Part 1: Evidence review

Scoping question in PICO format (population, intervention, comparison, outcome)

Population

• Family caregivers (both male and female) of care-dependent older people of 60 years of age and over

Interventions

• Respite care

• Psychosocial support

• Technology-based interventions Comparisons

• Usual or standard care

• Waiting list control

• Active control intervention Outcomes

• Critical: Caregiver burden, caregiver depression, care recipients’ symptoms

• Important: Well-being, ability/knowledge, quality of life, anger, anxiety

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Search strategy

The search for studies using combined intervention terms was conducted on October 2015 in Ovid MEDLINE (see Annex 1). The Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Clinical Trials databases were searched, using combinations of the following terms:

("caregivers"[MeSH Terms] OR "caregivers"[All Fields] OR

"caregiver"[All Fields]) AND support[All Fields]) OR respite[All

Fields] OR (psychosocial[All Fields] AND interventions[All Fields])) AND interventions[All Fields] AND ("frail

elderly"[MeSH Terms] OR ("frail"[All Fields] AND "elderly"[All Fields]) OR "frail elderly"[All Fields] OR ("frail"[All Fields] AND

"older"[All Fields] AND "adults"[All Fields]) OR "frail older adults"[All Fields]) (caregiver support OR respite care OR psychosocial intervention) AND frail*.

List of systematic reviews identified by search

Included in GRADE¹ tables (8–10)

— Mason A, Weatherly H, Spilsbury K, Golder S, Arksey H, Adamson J et al. The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc.

2007;55(2):290–9. doi:10.1111/j.1532-5415.2006.01037.x. [Review was updated by WHO in 2015].

— Shaw C, McNamara R, Abrams K, Cannings-John R, Hood K, Longo M et al. Systematic review of respite care in the frail elderly.

Health Technol Assess. 2009;13(20):1–224, iii.

doi:10.3310/hta13200. [Review was updated by WHO in 2015].

— Sorensen S, Pinquart M, Duberstein P. How effective are

interventions with caregivers? An updated meta-analysis.

Gerontologist. 2002;42(3):356–72. [Review was updated by WHO in 2015].

— Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects?

Int Psychogeriatr. 2006;18(4):577–95. doi:

10.1017/S1041610206003462. [Review updated by WHO in 2015].

Excluded from GRADE tables and footnotes (12, 13)

— Lopez-Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care. 2012;12:e133. (Reason: eligible studies included were cited in the included reviews)

— Cassie KM, Sanders S. Familial caregivers of older adults. J Gerontol Soc Work. 2008;50(Suppl 1):293–320.

_______________________________

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PICO table

Intervention/

comparison

Outcomes Systematic reviews used for GRADE

Explanation

1 Respite care vs usual care or waiting list control

• Reduction in caregiver burden

• Caregiver depression

Mason A, Weatherly H, Spilsbury K, Golder S, Arksey H, Adamson J et al.

The effectiveness and cost-

effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc. 2007;55(2):290–9. (8) GRADE table 1

Systematic review relevant to the area

2 Respite care vs usual care or waiting list control

• Caregiver anxiety

• Caregiver anger

Shaw C, McNamara R, Abrams K, Cannings-John R, Hood K, Longo M et al. Systematic review of respite care in the frail elderly. Health Technol Assess. 2009;13(20):

1–224. (9) GRADE table 2

3 Respite care vs no intervention

Psychosocial interventions vs no intervention

• Subjective well-being

• Ability/knowledge

• Care recipients’

symptoms

Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta- analysis. Gerontologist.

2002;42(3):356–72. (10) GRADE tables 3 to 7

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Narrative description of the studies that went into analysis

Respite care and psychosocial interventions GRADE table 1

Mason et al. conducted a systematic review and meta-analysis to examine the effectiveness and cost-effectiveness of respite care for caregivers of frail older people (8). An extensive literature search was conducted and relevant studies were identified and assessed for methodological quality by two of the authors. A total of

22 studies were included: 10 randomized controlled trials (RCTs), seven quasi-experimental studies and five uncontrolled studies.

Noticeably, even though the search was not restricted to a particular disease, most of the studies included older people with cognitive impairment exclusively (n = 13). Although physical impairment was also described as a common condition, it was inconsistently reported. Moreover, different types of respite care were covered across the different trials including adult day care, multidimensional packages, respite packages, in-home respite, host-family respite, institutional respite and video respite.

Caregiver burden and caregiver depression were the two main outcomes measured. Pooled estimates obtained from four RCTs and four quasi-experimental studies (N = 989) assessing respite package (n = 1), in-home respite (n = 2) and adult day care (n = 5) found no statistically significant effect of respite on caregiver burden (SMD: 0.15, 95% CI: -0.36 to 0.05). On the other hand, pooled estimates from one RCT and two quasi-experimental studies (N = 295) examining caregiver depression showed a

results in one trial on day care, however, which undermines the reliability of the pooled results.

The authors concluded that there is evidence suggesting that respite for caregivers of frail older people may have a small positive effect reducing caregiver depression and burden (although the latter effect was not significant when including RCTs in the analysis). They found no reliable evidence that respite care may delay institutionalization or may be more cost-effective than usual care. However, it should be noted that several limitations have been reported by the authors regarding the methodological quality of the studies and the variability of relative effects based on structural differences in the interventions provided.

GRADE table 2

Shaw et al. conducted a systematic review and meta-analysis to assess the effectiveness of respite care on the well-being of informal carers of frail and disabled older people living in the community (9). An extensive search was conducted, including qualitative studies, and methodological quality was assessed by two authors independently. From a total of 104 quantitative studies selected, 16 were included in the meta-analysis (9 RCTs and quasi-experimental studies and seven longitudinal before-and-after studies). All the studies were conducted in high-income countries, the majority assessing day care and mixed respite care interventions, while some assessed in-home care and institutional care. Overall, care recipients included frail older people or older adults with dementia or experiencing mixed problems. Two RCTs and a quasi-experimental study assessing day care respite showed

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no significant effects of respite care on caregiver burden after a six-month follow-up period (SMD: 0.11, 95% CI: -0.38 to 0.17). However, even though studies were rated as moderate to high quality, sampling characteristics of one of the trials were not generalizable to the carer population and another study presented limitations as the uptake of respite was low in the sample. In addition, caregiver depression was assessed as a primary outcome. Due to significant heterogeneity in the studies, random effect model results were used and these are presented in the GRADE tables. Authors found no significant results in favour of day care respite to address carer

depression either at short-term (six months) or long-term follow-up (12 months) (SMD: -0.23, 95% CI: -0.49 to 0.03; and SMD: -0.08, 95% CI: -0.41 to 0.24, respectively). Although the overall quality of studies in this group was moderate, authors remarked that the low level of respite provision in two of the studies might explain the intervention’s low impact.

Further analysis revealed no significant benefits of respite in terms of caregiver anxiety (SMD: 0.27, 95% CI: -0.28 to 0.82) and single- group studies indicated that carer’s quality of life was worse after respite use. However, pooled estimates derived from one

moderate-quality RCT and one quasi-experimental study providing day care showed that anger was significantly lower after three months post-intervention in the intervention group (SMD: -0.38, 95% CI: -0.60 to -0.17).

GRADE tables 3 to 7

Sorensen et al. conducted a meta-analytic study to investigate the effectiveness of interventions for informal carers of older adults (10). The authors included a total of 78 studies in order to explore six different interventions (psychoeducation,

supportive interventions, psychotherapy, respite care, training of care recipient and multicomponent interventions) and six

outcome variables (carer’s burden, depression, subjective well- being, ability/knowledge and care recipient’s symptoms). The number of sessions of the interventions ranged from 1 to 180 (median = 8 sessions) with follow-up assessments conducted in only 22% of the cases after an average of seven months

(SD = 5.1 months). The number of carers receiving

interventions ranged from 4 to 2268 (mean = 24) with a mean age of 62.3 years for carers and a mean age of 77.3 years for care recipients. Nearly 60% of the studies explored group treatments, 22% individual interventions, 18% combined (group and individual) and in 1% this was not reported. Attrition rates varied from over 35% for respite care to 11.7% for

psychotherapy trials. Moreover, almost 70% of the caregivers were female, near 77% of the carers lived with the care receiver and 50% were spouses. Noticeably, more than 60% of the studies included by the authors focused exclusively on caregivers for people with dementia. Also, most of the other heterogeneous samples included people with dementia along with people with other physical or mental disabilities/disorders.

All of the studies were conducted in high-income countries.

When analysing the effect of the different interventions

including only RCTs, the authors found that psychotherapy was significantly beneficial for all the outcomes measured (carer’s burden SMD: -0.22, 95% CI: -0.41 to -0.03, n = 8; depression SMD: -0.27, 95% CI: -0.45 to -0.09, n = 9; well-being

SMD: 0.52, 95% CI: 0.08 to 0.96, n = 2; ability/knowledge SMD: 0.38, 95% CI: 0.14 to 0.61, n = 4). Psychoeducation for carers showed significant effects for improving caregiver

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burden (n = 21), depression (n = 15) and ability/knowledge (n = 19) (SMD: -0.12, 95% CI: -0.24 to -0.01; SMD: -0.23, 95%

CI: -0.38 to -0.08; and SMD: 0.37, 95% CI: 0.24 to 0.51,

respectively). Supportive interventions (including professionally and peer-led support and discussion groups) revealed positive effects for caregiver burden (SMD: -0.35, 95% CI: -0.60

to -0.10, n = 4) and ability/knowledge (SMD: 0.54, 95% CI: 0.30 to 0.78, n = 5). Regarding these results, the authors suggested that the small number of RCTs examining respite care may have reduced the chance of finding significant effects for this intervention. Moreover, significant positive effects on care recipient’s symptoms were observed after training and supportive interventions.

Furthermore, in this study, a regression model was used to compare all the studies in which care recipients had dementia exclusively versus those studies with no dementia patients or in which they only constituted a proportion of the total sample. After conducting the analysis, authors found that when all care-receivers in the sample had dementia, interventions were less effective at improving caregiver’s burden, depression, well-being and

ability/knowledge. Moreover, authors identified several limitations in relation to missing data for relevant outcomes in several studies (e.g. drop-out rates), and in relation to the variability of intervention effects observed according to the different outcome measurements (particularly for depression and burden). The authors concluded

that psychotherapeutic interventions and psychoeducation for frail older people’s caregivers showed the most consistent effects on the outcomes measures.

Pinquart et al. replicated the systematic review but focused exclusively on the effectiveness of interventions for dementia caregivers (11). In addition to the interventions analysed in their previous article (10), the authors also included measures such as:

(i) counselling/case management, (ii) psychoeducation stratified into active participation or information provision only and

(iii) structured and unstructured multicomponent approaches.

Furthermore, authors added institutionalization as a main outcome measure. A detailed analysis of the evidence reported in this study is presented in the WHO mhGAP guidelines on interventions for carers of people with dementia (14). Overall, when evidence from both studies is compared (10, 11), similar findings can be observed showing that psychoeducation is significantly beneficial for all the outcomes across both studies and, similarly, psychotherapy (e.g. cognitive behavioural therapy [CBT]) had significant effects in terms of reducing caregiver burden and depression in all

caregivers. However, while respite care showed significant benefits for improving burden, depression and subjective well-being (SWB) for dementia caregivers (SMD: -0.26, 95% CI: -0.39 to -0.12;

SMD: -0.12, 95% CI: -0.24 to 0; SMD: 0.27, 95% CI: 0.03 to 0.51, respectively) (11), no positive effects remained when only RCTs were analysed for older people’s carers (10).

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GRADE table 1: Respite care compared with usual care for family caregivers of care-dependent older people

Author: WHO systematic review team

Date: 20 October 2015

Question: What is the effectiveness of respite care compared with usual care for family caregivers of care-dependent older people?

Setting: Community

Bibliography (8): Mason A, Weatherly H, Spilsbury K, Golder S, Arksey H, Adamson J et al. The effectiveness and cost-effectiveness of respite for caregivers of frail older people. J Am Geriatr Soc.

2007;55(2):290–9. [Review updated by WHO in 2015]

Quality assessment Number of patients Effect

Quality Importance Number of

studies

Study design

Risk of

bias Inconsistency Indirectness Imprecision Other

considerations Respite care Usual care Absolute (95% CI)

Caregiver burden (follow-up 2–12 months; assessed with Caregiver Burden Inventory, Caregiver Strain Index, Zarit Burden Interview; lower score = better performance) 8 randomized

trials

very serious ^a

not serious serious ^b not serious none see the footnote^c

see the footnote ^c

SMD 0.15 lower (0.36 lower to

0.05 higher)

^

VERY LOW

CRITICAL

Caregiver depression (follow-up 12 months; assessed with Center for Epidemiological Studies Depression Scale [CES-D] and Hamilton Depression Scale; lower score = better performance) 3 randomized

trials

serious ^d not serious serious ^b not serious none see the footnote^c

see the footnote^c

0.02 lower)

^

VERY LOW

CRITICAL

MD: mean difference; RR: relative risk.

a. Risk of bias: Downgraded twice as four included trials that had a quasi-experimental design and the method of allocation concealment was inadequate in six trials.

b. Risk of bias: Downgraded once as trials were mainly from high-income countries, and data therefore may not be generalizable to resource-poor settings.

c. Number of participants recruited for each group was not reported.

d. Risk of bias: Downgraded once as two included trials applied quasi-experimental design.

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GRADE table 2: Respite care compared with usual care for informal caregivers of care-dependent older people

Question: What is the effectiveness of respite care compared with usual care for informal caregivers of care-dependent older people?

Bibliography (9): Shaw C, McNamara R, Abrams K, Cannings-John R, Hood K, Longo M et al.

Systematic review of respite care in the frail elderly. Health Technol Assess.

2009;13(20):1–224. [Review updated by WHO in 2015].

Quality Importance Number

of studies

Risk of

bias Inconsistency Indirectness Imprecision Other considerations

Respite

care Usual care Absolute (95% CI)

Caregiving burden (follow-up 3–12 months; assessed with CBI, PDS, ZBI; lower score = better performance) 3 randomized

trials

serious

a

serious ^b serious ^c not serious none 414 380 SMD 0.11 lower

(0.38 lower to 0.17 higher)

^

VERY LOW

CRITICAL

Caregiver depression (follow-up 2 weeks to 6 months; assessed with BSI, CES-D, GHQ; lower score = better performance) 5 randomized

trials

serious

d

serious ^e serious ^c not serious none see the footnote^f

see the footnote ^f

SMD 0.23 lower (0.49 lower to 0.03 higher)

^

VERY LOW

CRITICAL

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Caregiver depression (follow-up 12 months; assessed with HADS, CES-D, PDS; lower score = better performance) 3 randomized

trials

serious

g

serious ^h serious ^c not serious none 357 393 SMD 0.08 lower

^

VERY LOW

CRITICAL

Caregiver anxiety (follow-up 12 months; assessed with HADS, PDS; lower score = better performance) 2 randomized

trials

serious

a

serious ⁱ serious ^c not serious none 307 306 SMD 0.27 higher



VERY LOW

IMPORTANT

Caregiver anger (follow-up 3 months; assessed with BSI, CES-D; lower score = better performance) 2 randomized

trials

serious

a

not serious serious ^c not serious none 89 135 SMD 0.38 lower

(0.6 lower to 0.17 lower)



LOW

IMPORTANT

BSI: Brief Symptoms Inventory; CBI: Caregiver Burden Inventory; CES-D: Center for Epidemiological Studies Depression Scale; GHQ:

General Health Questionnaire; HADS: Hospital Anxiety and Depression Scale; PDS: Psychological Distress Scale; SMD: standardized mean difference; ZBI: Zarit Burden Interview.

a. Risk of bias: Downgraded once as one of the included trial applied a quasi-experimental design.

b. Inconsistency: Downgraded once as moderate heterogeneity was observed for pooled estimate (Chi²= 5.02 [df = 2], P = 0.081, I² = 60.2%).

c. Indirectness: Downgraded once as all included trials were conducted in high-income countries, therefore evidence may not be generalizable to resource-poor settings.

d. Risk of bias: Downgraded once as two included trials applied a quasi-experimental design.

e. Inconsistency: Downgraded once as moderate heterogeneity was observed for pooled estimate (Chi² 10.11 [df = 4], P = 0.039, I² = 60.4%).

f. Number of participants recruited for each group was not reported separately (total sample size was more than 400).

g. Risk of bias: Downgraded once as one of the included trials applied quasi-experimental design.

h. Inconsistency: Downgraded once as moderate heterogeneity was observed (Chi²= 6.18 [df = 2], P = 0.045, I² = 67.7%).

i. Inconsistency: Downgraded once as moderate heterogeneity was observed (Chi²= 3.64 [df = 1], P = 0.057, I² = 72.5%).

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GRADE table 3: Respite care compared with no intervention for carers of older people

Question: What is the effectiveness of respite care compared with no intervention for carers of older people?

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. [Review updated by WHO in 2015]

of studies

Risk of

bias Inconsistency Indirectness Imprecision Other considerations

Respite care

No intervention

Absolute (95% CI)

Caregiver burden (follow-up 3 months; assessed with Zarit Burden Interview; lower score = better performance) 1 randomized

trials

serious^a not serious serious^b very serious^c

none 16 Footnote ^e MD 0.34 higher

^

VERY LOW

CRITICAL

Caregiver depression (follow-up 6 months; assessed with CES-D, BDI, BSI; lower score = better performance) 2 randomized

trials

serious^a not serious serious ^b very serious^c

none 38 Footnote ^e SMD 0.29 lower

^

VERY LOW

CRITICAL

Subjective well-being (follow-up 3–6 months; assessed with ABS, LSS, PNES; lower score = better performance) 4 randomized

trials

serious^a not serious serious^b serious^d none 156 Footnote ^e SMD 0.06 higher (0.16 lower to 0.28 higher)

^

VERY LOW

IMPORTANT

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Ability/knowledge (follow-up 3–6 months; assessed with questionnaires on knowledge, coping abilities or caregiving-related self-efficacy; higher score = better performance) 1 randomized

trials

serious^a not serious serious^b very serious^c

none 16 Footnote^e MD 1.36 lower

^

VERY LOW

IMPORTANT

Recipients’ symptoms (follow-up 3 months; assessed with BPC, IADLs; lower score = better performance) 2 randomized

trials

serious^a not serious serious^b serious^d none 112 Footnote^e SMD 0.12 higher (0.14 lower to 0.39 higher)



VERY LOW

CRITICAL

ABS: Affect Balance Scale; BDI: Beck Depression Inventory; BPC: Behavioural Problem Checklist; BSI: Depression Subscale of the Brief Symptom Inventory; CES-D: Center for Epidemiological Studies Depression Scale; IADLs: instrumental activities of daily living;

LSS: Life Satisfaction Scales; MD: mean difference; PGCM: Philadelphia Geriatric Center Morale Scale; PANAS: Positive and Negative Affect Scale; SMD: standardized mean difference; ZBI: Zarit Burden Interview.

a Risk of bias: Downgraded once as high average dropout rate was reported in most trials (> 35%).

b Indirectness: Downgraded once as trials recruited unselected target population; caregivers for older people with and without dementia were included, therefore it is difficult to distinguish the effect. Included trials were from high-income countries, therefore data may not be generalizable to resource-poor settings.

c Imprecision: Downgraded twice as sample size was very small (less than 100 participants).

d Imprecision: Downgraded once as sample size was small.

e Number of participants in control group was not reported.

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GRADE table 4: Psychosocial interventions compared with no intervention for caregivers of older people

Question: What is the effectiveness of psychoeducation compared with no intervention for caregivers of older people?

Settings: Community and long-term care

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72.

[Review updated by WHO in 2015]

Quality assessment No. of patients Effect

of studies

Risk

of bias Inconsistency Indirectness Imprecision Other

considerations Psychoeducation No intervention

Absolute (95% CI)

Caregiver burden (follow-up 3–12 months; assessed with ZBI, MBBS; lower score = better performance) 21 randomized

trials

not serious

not serious serious^a not serious none 582 Footnote^c SMD 0.12 lower

  MODERATE

CRITICAL

Caregiver depression (follow-up 6–12 months; assessed with BDI, CES-D, BSI; lower score = better performance) 15 randomized

trials

not serious

  MODERATE

CRITICAL

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Subjective well-being (follow-up 6 months; assessed with ABS, LSS, PANAS; lower score = better performance) 3 randomized

trials

not serious

not serious serious^a serious ^b none 66 Footnote^c SMD 0.25 lower



LOW

IMPORTANT

Caregiver ability/knowledge (follow-up 6–12 months; assessed with questionnaires on knowledge, coping abilities or caregiving-related self-efficacy; higher score = better performance) 19 randomized

trials

not serious

not serious serious^a not serious none 523 Footnote^c SMD 0.37 higher

(0.24 higher to 0.51 higher)

 MODERATE

IMPORTANT

Care-recipients’ symptoms (follow-up 3–12 months; assessed with BPC, IADL, ADL; lower score = better performance) 15 randomized

trials

not serious

CRITICAL

ABS: Affect Balance Scale; ADLs: activities of daily living; BDI: Beck Depression Inventory; BPC: Behavioural Problem Checklist; BSI:

Depression Subscale of the Brief Symptom Inventory; CES-D: Center for Epidemiological Studies Depression Scale; IADLs:

instrumental activities of daily living; LSS: Life Satisfaction Scales; MBBS: Montgomery and Borgatta’s Burden Scale; MD: mean difference; PGCM: Philadelphia Geriatric Center Morale Scale; PANAS: Positive and Negative Affect Scale; ZBI: Zarit Burden Interview.

a Indirectness: Downgraded once as trials recruited unselected target population; caregivers for older people with and without dementia were included, therefore it is difficult to distinguish the effect.

b Imprecision: Downgraded once as sample size was very small (smaller than 100 participants).

c Number of participants in control group was not reported.

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GRADE table 5: Psychotherapy compared with no intervention for caregivers of older people

Question: What is the effectiveness of psychotherapy compared with no intervention for caregivers of older people?

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72.

[Review updated by WHO in 2015]

of studies

Risk

considerations Psychotherapy No intervention

Absolute (95% CI) Caregiver burden (follow-up 12 months; assessed with ZBI, MBBS; lower score = better performance)

8 randomized trials

not serious

CRITICAL

trials

not serious

CRITICAL

Subjective well-being (SWB) (follow-up 2–3 months; assessed with ABS, LSS; lower score = better performance) 2 randomized

trials

not serious

not serious serious^a very serious^b

none 58 Footnote^c SMD 0.52 higher

(0.08 higher to 0.96 higher)

^

VERY LOW

IMPORTANT

Ability/knowledge (follow-up 6–12 months; assessed with questionnaires on knowledge, coping abilities or caregiving-related self-efficacy; higher score = better performance) 4 randomized

trials

not serious

not serious serious^a not serious none 158 Footnote^c SMD 0.38 higher (0.14 higher to 0.61

higher)

IMPORTANT

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of studies

Risk

considerations Psychotherapy No intervention

Absolute (95% CI) Recipients’ symptoms (follow-up 2–12 months; assessed with BPC, IADLs, ADLs; lower score = better performance)

7 randomized trials

not serious

not serious serious ^a not serious none 228 Footnote^c SMD 0.19 lower (0.38 lower to 0 lower)

CRITICAL

instrumental activities of daily living; LSS: Life Satisfaction Scales; MBBS: Montgomery and Borgatta’s Burden Scale; PGCM:

Philadelphia Geriatric Center Morale Scale; PNES: Positive and Negative Affect Scale; SMD: standardized mean difference; ZBI: Zarit Burden Interview.

a Indirectness: Downgraded once as trials recruited unselected target population; caregivers for older people with and without dementia were included, therefore it is difficult to distinguish the effect. Included trials were from high-income countries, therefore data may not be generalizable to resource-poor settings.

b Imprecision: Downgraded twice as sample size was very small (less than 100 participants).

c Number of participants recruited in the control group was not reported.

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GRADE table 6: Support interventions compared with no intervention for carers of older adults

Question: What is the effectiveness of support interventions compared with no intervention for carers of older adults?

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with

caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. [Review updated by WHO in 2015]

of studies

Risk

of bias Inconsistency Indirectness Imprecision Other considerations

Support interventions

No intervention

4 randomized trials

not serious

not serious serious ^a not serious none 121 see the

footnote ^d

SMD 0.35 lower (0.6 lower to 0.1 lower)

CRITICAL

trials

not serious

not serious serious ^a serious^b none 127 see the

footnote ^d



LOW

CRITICAL

Subjective well-being (follow-up 3 months; assessed with ABS, LSS; lower score = better performance) 2 randomized

trials

not serious

not serious serious ^a very serious^c

none 58 see the

footnote ^d

SMD 0.17 higher (0.18 lower to 0.52 higher)

^

VERY LOW

IMPORTANT

Ability/knowledge (follow-up 6 months; assessed with questionnaires on knowledge, coping abilities or caregiving-related self-efficacy; higher score = better performance) 5 randomized

trials

not serious

not serious serious ^a not serious none 131 see the

footnote ^d

SMD 0.54 higher (0.3 higher to 0.78 higher)

IMPORTANT

(continued

(20)

Recipients’ symptoms (follow-up 12 months; assessed with BPC, ADLs; lower score = better performance) 2 randomized

trials

not serious

not serious serious ^a serious ^b none 63 see the

footnote ^d



LOW

CRITICAL

instrumental activities of daily living; LSS: Life Satisfaction Scales; MBBS: Montgomery and Borgatta’s Burden Scale; PGCM:

Philadelphia Geriatric Center Morale Scale; PANAS: Positive and Negative Affect Scale; SMD: standardized mean difference; ZBI: Zarit Burden Interview.

a Indirectness: Downgraded once as trials recruited unselected target population; caregivers for older people with and without dementia were included, therefore it is difficult to distinguish the effect. Included trials were from high-income countries, therefore data may not be generalizable to resource-poor settings.

b Imprecision: Downgraded once as sample size was small (less than 200).

c Imprecision: Downgraded twice as sample size was very small.

d Number of participants recruited in the control group was not reported.

(21)

GRADE table 7: Training of care recipient compared with no intervention

Question: What is the effectiveness of training interventions for care recipients compared with no intervention or usual care?

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. [Review updated by WHO in 2015]

of studies

Study design Risk of

bias Inconsistency Indirectness Imprecision Other considerations

Training interventions

No intervention

5 randomized trials

serious^a not serious serious^b serious^c none 79 see the

footnote ^e

SMD 0.13 lower (0.46 lower

to 0.2 higher)



VERY LOW

CRITICAL

Caregiver depression (follow up 4–12 months; assessed with BDI, CES-D, BSI; lower score = better performance) 4 randomized

trials

serious^a not serious serious^b very serious^d none 56 see the

footnote ^e

to 0.13 higher)

^

VERY LOW

CRITICAL

trials

serious^a not serious serious^b very serious ^d

none 21 see the

footnote ^e

MD 0.74 higher

(0.06 higher to

1.42 higher)

^

VERY LOW

IMPORTANT

(continued

(22)

trials

serious^a serious⁷ serious^b very serious^d none 44 see the

footnote ^e

to 0.27 higher)

^

VERY LOW

IMPORTANT

Recipients’ symptoms (follow-up 12 months; assessed with BPC, IADLs, ADLs; lower score = better performance) 5 randomized

trials

serious^a not serious serious^b serious^c none 79 see the

footnote ^e

to 0.18 lower)

^

VERY LOW

CRITICAL

Depression Subscale of the Brief Symptom Inventory; CES-D: Center for Epidemiological Studies Depression Scale; IADLs: instrumental activities of daily living; LSS: Life Satisfaction Scales; MBBS: Montgomery and Borgatta’s Burden Scale; MD: mean difference; RR: relative risk; SMD: standardized mean difference; ZBI: Zarit Burden Interview.

a Risk of bias: Downgraded once as high drop-out rate was reported in the included trials (over 30%).

b Indirectness: Downgraded once as included trials were from high-income countries, therefore, data may not be generalizable to resource- poor settings. Trials recruited unselected target population: both caregivers for older people with and without dementia were included, therefore, it is difficult to distinguish the effect.

c Imprecision: Downgraded once as sample size was small (less than 200).

d Imprecision: Downgraded twice once as sample size was small (less than 100).

e Number of participants recruited in the control group was not reported.

(23)

GRADE table 8: Multicomponent interventions compared with no intervention for carers of older people

Question: What is the effectiveness of multicomponent interventions compared with no intervention for carers of older people?

Bibliography (10): Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72. [Review updated by WHO in 2015].

of studies

Risk of

bias Inconsistency Indirectness Imprecision Other considerations

Multicomponent interventions

No intervention

Absolute (95% CI) Caregiver burden (follow-up 6–12 months; assessed with ZBI, MBBS; lower score = better performance)

4 randomized trials

not serious serious ^a serious ^b not serious none 366 see the

footnote^e

0.46 lower)



LOW

CRITICAL

Caregiver depression (follow up 3–12 months; assessed with BDI, CES-D, BSI; lower score = better performance) 4 randomized

trials

not serious not serious serious^b not serious none 190 see the

footnote^e

0.18 higher)

CRITICAL

trials

not serious not serious serious^b very serious^c

none 42 see the

footnote^e

SMD 0.78 higher (0.27 higher to

1.29 higher)

^

VERY LOW

IMPORTANT

trials

not serious not serious serious^b very serious^c

none 50 see the

footnote^e

SMD 0.86 higher (0.42 higher to

^

VERY LOW

IMPORTANT

(24)

of studies

Risk of

bias Inconsistency Indirectness Imprecision Other considerations

Multicomponent interventions

No intervention

Absolute (95% CI) Recipients’ symptoms

2 randomized trials

not serious not serious serious^b serious ^d none 81 Not reported SMD 0.04

higher (0.53 lower to

0.61 higher)



LOW

CRITICAL

ABS: Affect Balance Scale; BDI: Beck Depression Inventory; BSI: Depression Subscale of the Brief Symptom Inventory; CES-D: Center for Epidemiological Studies Depression Scale; LSS: Life Satisfaction Scales; MBBS: Montgomery and Borgatta’s Burden Scale; SMD:

standardized mean difference; ZBI: Zarit Burden Interview.

a Inconsistency: Downgraded once as Chi² test indicates heterogeneity (P = 0.05), but I² value was not reported.

b Indirectness: Downgraded once as trials recruited unselected target population; caregivers for older people with and without dementia were included, therefore it is difficult to distinguish the effect. Included trials were from high-income countries, therefore data may not be generalizable to resource-poor settings.

c Imprecision: Downgraded twice as sample size was very small (less than 100).

d Imprecision: Downgraded once as sample size was small (less than 200).

Evidence profile: caregiver support

Integrated care for older people (ICOPE) Guidelines on community-level interventions to manage declines in intrinsic capacity