Review articleA systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?
Introduction
The on-going developments in dementia care towards early diagnosis [1], rising public health care costs, longer care in the community, and high caregiver burden underscore the importance of investing in programmes to support informal carers of people with dementia (PwD)1 [2]. Social support interventions are of particular interest because informal caregivers are increasingly asked to draw on their social networks for assistance and support, due to pressure from authorities and other third parties [3]. Evidence suggests social support reduces psychological and non-psychological burden [4], protects against new dementia incidences [5], social isolation and loneliness, and promotes social integration [6], [7].
There is a great variety in social support definitions. Some of these emphasize structural (e.g. network size) or functional aspects (type of support—emotional, informational and instrumental), while others use enacted support (support provision) or subjective support experiences of the recipient [8]. Conceptualization of social support is more complicated because it can be initiated by the natural existing social networks, but also by the formal support system. For example, the theory of Cohen et al. [9] defined social support as “the social resources that persons perceive to be available or that are actually provided to them by non-professionals in the context of both formal support groups and informal helping relationships” (p. 4).
Previous reviews on psychosocial interventions demonstrated mixed results due to the multi-component nature of the interventions and the variety of outcome measures. Effective studies were often multi-component, showing small to moderate beneficial effects on caregivers’ burden, mood, self-efficacy, quality of life, and subjective well-being [10], [11], [12], [13]. Several reviews had a distinct focus on specific treatment modalities, such as support groups [14], befriending schemes [15], or more recently on remote internet- and technological support [16], [17], [18], [19]. Moreover, comparability of studies is often problematic due to large variety of treatment aims.
The present review updates, integrates, and adds to the existing knowledge base by applying a specific focus on interventions that explicitly aim to improve social support. Given the variety of social support concepts, the selection of papers was guided by the above-mentioned theory of Cohen [9]. This broad theory is in line with the focus of our review on social support in both formal and informal settings. Furthermore, by using Cohen’s definition we narrowed down the heterogeneous spectrum of psychosocial interventions by selecting solely the interventions including a key component aiming to enhance social support or recruitment of social network members. Considering the variety of existing social support interventions strategies (e.g. individual vs. group, informal vs. formal, face-to-face vs. remote) we categorized the different interventions into 4 intervention types to create more homogenous groups: peer support and befriending, family support and social network interventions, support groups and remote support interventions. In sum, this systematic review examines the following research questions: (1) How effective are social support interventions on caregiver measures of social support and well-being? (2) What is the methodological quality of the papers included in the present review? (3) How well are the process characteristics of the interventions described? (4) How does the methodological quality of the papers relate to intervention effectiveness across the intervention categories?
Section snippets
Search strategy
The following databases were searched for papers written in English between January 1988 and May 2015: PubMed, PsycINFO, CINAHL, Web of Science and the Cochrane Library. We combined free text words with Medical Subject Headings (MESH) and Thesaurus terms, including (dementia or Alzheimer*) and (social support* or family meeting* or mutual sharing or social media or support group*) and (informal caregiv*) and (treatment* or intervention* or therapy*). Furthermore, we cross-referenced included
Study characteristics
Thirty-nine papers were selected (Fig. 1). The heterogeneity of intervention strategies and treatment outcomes prohibited pooling of the data in a meta-analysis [25]. Instead, we identified 4 conceptual intervention categories (Appendix A). All of these studies focused on multiple caregiver outcomes, including depression, burden, coping, distress, and self-efficacy. Overall, 22 studies included social support measures such as received support, perceived support and/or social network variables.
Validity and methodology
Discussion
This review synthesized findings of social support interventions for dementia caregivers, and examined their level of evidence and effectiveness on quantitative and qualitative social support and well-being outcomes. We identified 39 papers covering 4 intervention categories (Appendix A). A wide variation in content, duration, uptake and effectiveness of the interventions was demonstrated. Remarkably, 44% of the intervention studies aiming to improve social support actually did not include
Conflicts of interests
All involved authors declare no conflicts of interest.
Author Contributions
The original proposal for this review was developed by AD, MdV, MvB and FV. AD performed the search strategy, extracted data and wrote the manuscript. IK extracted data. MdV and MvB assisted in the data-extraction process. MdV, MvB, IK and FV provided valuable feedback to the manuscript.
Funding
This project was funded in part by Alzheimer Research Fund Limburg.
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