Remotely delivered information, training and support for informal caregivers of people with dementia

Review questions

We were interested in remotely delivered interventions involving information, training and support for family caregivers of people with dementia. By remotely delivered, we meant that they were provided over the telephone or on a computer or mobile electronic device. We asked whether these kinds of intervention helped caregivers more than doing nothing, and also whether interventions that included elements of training and support worked better than simple provision of information about dementia.

Background

Caring for a family member or friend with dementia can offer positive experiences, but often also has negative consequences for the caregiver. These negative consequences may be emotional, physical, social and financial, and are sometimes described as caregiver 'burden.' Many interventions have been developed to try to help caregivers in their caring role. Often, these interventions involve several components. In this review we divided the intervention components into information (increasing caregivers' knowledge about dementia), training (helping them to practice important skills for successful caring) and support (providing an opportunity to share experiences and feelings with other people). We chose to review only interventions delivered remotely, in part because we were writing during the COVID-19 pandemic, when many countries required people to remain in their homes. However, remotely delivered interventions may also be useful in many other kinds of situations when it is difficult for caregivers to access services in person.

Study characteristics

We searched up to April 2020 for randomised controlled trials that addressed our review questions. We found 12 studies with 944 participants that compared groups of caregivers receiving usual care, or some non-specific contact with researchers, with other groups receiving remotely delivered interventions that involved information with training, support or both. We found another 14 studies with 1423 participants that compared simple information provision with more complex interventions that involved training or support. The interventions lasted an average of 16 weeks. Three studies took place in China; all the others were from North America or Europe. About half used the telephone and about half used the Internet to deliver the interventions.

What are the main results of our review?

Compared with the usual services provided for caregivers where the studies took place, or with non-specific contact with the researchers, we found that the information, training and support interventions probably had no important effect on caregivers' overall burden, depressive symptoms, or quality of life. Caregivers in both groups may have been equally likely to drop out of the studies for any reason. Compared to information only, interventions which included training and support may result in a slight reduction of caregiver burden, probably reduce depressive symptoms, may have little or no effect on quality of life, and probably make it more likely that caregivers drop out of the studies. We did not find any obvious effects of different intervention components, but we were not able to draw any firm conclusions about this. There was no evidence on whether the interventions improved the quality of life of the people with dementia who were being cared for. We did not find any studies that reported harmful effects of the interventions or the additional burden they might add to the caregiver's life. We do not know how the interventions would perform in countries where few health and social care services are available for people with dementia and their families, or in situations where caregivers are unable to access usual services.

How reliable are these results?

We found that most studies were well-conducted, but because most outcomes were subjective, there was a risk that the expectations of the caregivers and researchers could have influenced results. For some outcomes, there were inconsistent results among studies. Overall, our confidence in our findings was moderate or low so the results could be affected by further research.

Authors' conclusions: 

Remotely delivered interventions including support, training or both, with or without information, may slightly reduce caregiver burden and improve caregiver depressive symptoms when compared with provision of information alone, but not when compared with usual treatment, waiting list or attention control. They seem to make little or no difference to health-related quality of life. Caregivers receiving training or support were more likely than those receiving information alone to drop out of the studies, which might limit applicability. The efficacy of these interventions may depend on the nature and availability of usual services in the study settings.

Read the full abstract...
Background: 

Many people with dementia are cared for at home by unpaid informal caregivers, usually family members. Caregivers may experience a range of physical, emotional, financial and social harms, which are often described collectively as caregiver burden. The degree of burden experienced is associated with characteristics of the caregiver, such as gender, and characteristics of the person with dementia, such as dementia stage, and the presence of behavioural problems or neuropsychiatric disturbances. It is a strong predictor of admission to residential care for people with dementia.

Psychoeducational interventions might prevent or reduce caregiver burden. Overall, they are intended to improve caregivers' knowledge about the disease and its care; to increase caregivers' sense of competence and their ability to cope with difficult situations; to relieve feelings of isolation and allow caregivers to attend to their own emotional and physical needs. These interventions are heterogeneous, varying in their theoretical framework, components, and delivery formats. Interventions that are delivered remotely, using printed materials, telephone or video technologies, may be particularly suitable for caregivers who have difficulty accessing face-to-face services because of their own health problems, poor access to transport, or absence of substitute care. During the COVID-19 pandemic, containment measures in many countries required people to be isolated in their homes, including people with dementia and their family carers. In such circumstances, there is no alternative to remote delivery of interventions.

Objectives: 

To assess the efficacy and acceptability of remotely delivered interventions aiming to reduce burden and improve mood and quality of life of informal caregivers of people with dementia.

Search strategy: 

We searched the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group, MEDLINE, Embase and four other databases, as well as two international trials registries, on 10 April 2020. We also examined the bibliographies of relevant review papers and published trials.

Selection criteria: 

We included only randomised controlled trials that assessed the remote delivery of structured interventions for informal caregivers who were providing care for people with dementia living at home. Caregivers had to be unpaid adults (relatives or members of the person's community). The interventions could be delivered using printed materials, the telephone, the Internet or a mixture of these, but could not involve any face-to-face contact with professionals. We categorised intervention components as information, training or support. Information interventions included two key elements: (i) they provided standardised information, and (ii) the caregiver played a passive role. Support interventions promoted interaction with other people (professionals or peers). Training interventions trained caregivers in practical skills to manage care. We excluded interventions that were primarily individual psychotherapy.

Our primary outcomes were caregiver burden, mood, health-related quality of life and dropout for any reason. Secondary outcomes were caregiver knowledge and skills, use of health and social care resources, admission of the person with dementia to institutional care, and quality of life of the person with dementia.

Data collection and analysis: 

Study selection, data extraction and assessment of the risk of bias in included studies were done independently by two review authors. We used the Template for Intervention Description and Replication (TIDieR) to describe the interventions. We conducted meta-analyses using a random-effects model to derive estimates of effect size. We used GRADE methods to describe our degree of certainty about effect estimates.

Main results: 

We included 26 studies in this review (2367 participants). We compared (1) interventions involving training, support or both, with or without information (experimental interventions) with usual treatment, waiting list or attention control (12 studies, 944 participants); and (2) the same experimental interventions with provision of information alone (14 studies, 1423 participants).

We downgraded evidence for study limitations and, for some outcomes, for inconsistency between studies. There was a frequent risk of bias from self-rating of subjective outcomes by participants who were not blind to the intervention. Randomisation methods were not always well-reported and there was potential for attrition bias in some studies. Therefore, all evidence was of moderate or low certainty.

In the comparison of experimental interventions with usual treatment, waiting list or attention control, we found that the experimental interventions probably have little or no effect on caregiver burden (nine studies, 597 participants; standardised mean difference (SMD) -0.06, 95% confidence interval (CI) -0.35 to 0.23); depressive symptoms (eight studies, 638 participants; SMD -0.05, 95% CI -0.22 to 0.12); or health-related quality of life (two studies, 311 participants; SMD 0.10, 95% CI -0.13 to 0.32). The experimental interventions probably result in little or no difference in dropout for any reason (eight studies, 661 participants; risk ratio (RR) 1.15, 95% CI 0.87 to 1.53).

In the comparison of experimental interventions with a control condition of information alone, we found that experimental interventions may result in a slight reduction in caregiver burden (nine studies, 650 participants; SMD -0.24, 95% CI -0.51 to 0.04); probably result in a slight improvement in depressive symptoms (11 studies, 1100 participants; SMD -0.25, 95% CI -0.43 to -0.06); may result in little or no difference in caregiver health-related quality of life (two studies, 257 participants; SMD -0.03, 95% CI -0.28 to 0.21); and probably result in an increase in dropouts for any reason (12 studies, 1266 participants; RR 1.51, 95% CI 1.04 to 2.20).

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