Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

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Abstract

Background

Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care.

Objective

This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients.

Methods

An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes.

Results

In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=–0.21; 95% CI –0.31 to –0.10; P<.001), perceived stress (SMD=–0.40; 95% CI –0.55 to –0.24; P<.001), anxiety (SMD=–0.33; 95% CI –0.51 to –0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients.

Conclusions

Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients.

Trial Registration

PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434

Related collections

Most cited references 46

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Why caregivers of people with dementia and memory loss don't use services.

Henry Brodaty, Cathy Thomson, Claire Thompson … (2005)

To develop a typography of the characteristics of caregivers of community dwelling people with dementia or memory loss who do not use services and empirically investigate the reasons for service non-use. The findings of a literature review were used to develop a typography of caregivers' non-use of services. This typography was applied to a sample of community-based caregivers. One in three caregivers were using no services and one in four only one service. Despite considerable proportions reporting low levels of life satisfaction and high levels of overload and resentment the main reasons caregivers gave for not using services were that they did not consider they needed the services. Other reasons for service non-use included care recipient reluctance to use services, lack of knowledge of services or being in the process of applying for services. Service availability or affordability were not identified as major impediments to service use. Presence of a physical disability and contact with a social worker were associated with service use. Caregivers of people with dementia incur significant strain and have substantial need for a variety of services. Nevertheless many caregivers were not using support services, mainly because of perceived lack of need or lack of awareness. Better public promotion of services, destigmatising dementia and encouraging referrals from health professionals could help overcome the barriers to service use. Copyright (c) 2005 John Wiley & Sons, Ltd

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A meta-review of stress, coping and interventions in dementia and dementia caregiving

Kenneth Gilhooly, M. L. M. Gilhooly, M. P. Sullivan … (2016)

Background There has been a substantial number of systematic reviews of stress, coping and interventions for people with dementia and their caregivers. This paper provides a meta-review of this literature 1988-2014. Method A meta-review was carried out of systematic reviews of stress, coping and interventions for people with dementia and their caregivers, using SCOPUS, Google Scholar and CINAHL Plus databases and manual searches. Results The meta-review identified 45 systematic reviews, of which 15 were meta-analyses. Thirty one reviews addressed the effects of interventions and 14 addressed the results of correlational studies of factors associated with stress and coping. Of the 31 systematic reviews dealing with intervention studies, 22 focused on caregivers, 6 focused on people with dementia and 3 addressed both groups. Overall, benefits in terms of psychological measures of mental health and depression were generally found for the use of problem focused coping strategies and acceptance and social-emotional support coping strategies. Poor outcomes were associated with wishful thinking, denial, and avoidance coping strategies. The interventions addressed in the systematic reviews were extremely varied and encompassed Psychosocial, Psychoeducational, Technical, Therapy, Support Groups and Multicomponent interventions. Specific outcome measures used in the primary sources covered by the systematic reviews were also extremely varied but could be grouped into three dimensions, viz., a broad dimension of “Psychological Well-Being v. Psychological Morbidity” and two narrower dimensions of “Knowledge and Coping” and of “Institutionalisation Delay”. Conclusions This meta-review supports the conclusion that being a caregiver for people with dementia is associated with psychological stress and physical ill-health. Benefits in terms of mental health and depression were generally found for caregiver coping strategies involving problem focus, acceptance and social-emotional support. Negative outcomes for caregivers were associated with wishful thinking, denial and avoidance coping strategies. Psychosocial and Psychoeducational interventions were beneficial for caregivers and for people with dementia. Support groups, Multicomponent interventions and Joint Engagements by both caregivers and people with dementia were generally found to be beneficial. It was notable that virtually all reviews addressed very general coping strategies for stress broadly considered, rather than in terms of specific remedies for specific sources of stress. Investigation of specific stressors and remedies would seem to be a useful area for future research. Electronic supplementary material The online version of this article (doi:10.1186/s12877-016-0280-8) contains supplementary material, which is available to authorized users.

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Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review

Jenny Hopwood, Nina Walker, Lorraine K McDonagh … (2018)

Background Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

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Author and article information

Contributors

Zhiwen Wang:

ORCID: https://orcid.org/0000-0002-0983-6133

School of NursingPeking University38 Xueyuan Road, Haidian DistrictBeijing, 100191China86 15901566817wzwjing@sina.com

Journal

Journal ID (nlm-ta): J Med Internet Res

Journal ID (iso-abbrev): J. Med. Internet Res

Journal ID (publisher-id): JMIR

Title: Journal of Medical Internet Research

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Print): 1439-4456

ISSN (Electronic): 1438-8871

Publication date Collection: September 2020

Publication date (Electronic): 9 September 2020

Volume: 22

Issue: 9

Electronic Location Identifier: e19468

Affiliations

[1 ] School of Nursing Peking University Beijing China

[2 ] Peking University Health Science Centre for Evidence-Based Nursing: A Joanna Briggs Institute Affiliated Group Beijing China

Author notes

Corresponding Author: Zhiwen Wang wzwjing@ 123456sina.com

Author information

Minmin Leng https://orcid.org/0000-0002-0655-6435

Yajie Zhao https://orcid.org/0000-0002-1276-5815

Hongmei Xiao https://orcid.org/0000-0003-1732-3554

Ce Li https://orcid.org/0000-0001-7165-6259

Zhiwen Wang https://orcid.org/0000-0002-0983-6133

Article

Publisher ID: v22i9e19468

DOI: 10.2196/19468

PMC ID: 7511858

PubMed ID: 32902388

SO-VID: bbb2c0a0-c518-4008-a5a1-bd9b784d80b8

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.

History

Date received : 19 April 2020

Date revision requested : 12 June 2020

Date revision received : 25 June 2020

Date accepted : 26 July 2020

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