Social Isolation in Informal Caregivers of People with Dementia: A Scoping Review

Background and Purpose:

In the United States, millions of informal caregivers have played a substantial role in providing care for individuals with dementia. Evidence shows that while managing the needs of people with dementia, informal caregivers accumulate significant unmet needs including diminished social networks and loss of meaningful social contacts. Although research on social isolation among older adults with dementia has well documented, social isolation among their informal caregivers has not received much scholarly attention. This study filled this gap in the literature and sought to identify factors associated with social isolation among informal caregivers for people with dementia. Thus, we conducted a scoping review to provide an overview and identify factors associated with social isolation in the existing literature regarding informal caregivers of people with dementia.

Methods:

This review was guided by Arksey and O’Malley’s (2005) scoping review process, later refined by Levac, Colquhoun and O’Brien (2010). An electronic search was conducted in May of 2019 using following databases: PubMed, PsycInfo, and Scopus. A combination of key terms, including “dementia” AND “social isolation” AND (“caregiver” OR “carers”), was used to search the literature in accordance with the structure of each individual database. We included the following criteria of literature: (a) peer-reviewed journal article; (b) published in English; and (c) full-text electronically available via University System of Maryland and Affiliated Institutions. We excluded literature that (a) did not explicitly address social isolation, (b) were any types of literature review, (c) targeted formal caregivers, or (d) focused on cognitive impairment. Four reviewers participated in the whole review process: a review of the title and abstract, and full-text article review.

Results:

The initial literature search yielded 301 studies, and 182 duplicates were removed. Through title/abstract and full-text screening process, 20 studies were retrieved for the scoping review. Based on a synthesis of evidence from the selected articles, five themes were derived from the data: disease progression, psychological processes, social networks, social supports, and technology.

Conclusions and Implications:

The review demonstrates that social isolation among informal caregivers occurs from diminished social interactions with members in their existing social networks and restriction of going outside from dementia caregiving. Most of the included literature understood social isolation as the consequences of informal caregiving, which result from progression of dementia, psychological factors (e.g., guilt, stigmas on dementia, responsibilities), and lack of support and understanding from others. These themes increased caregivers’ social isolation. However, surprisingly, some literature reported that these negative themes may motivate caregiving. Also, not all social supports reduced social isolation. Unwelcome support, in particular, was a stress-boosting factor. Interestingly, social networks of informal caregivers diminished in two-folds: caregivers retreating from their existing networks and their existing networks retreating from caregivers. Lastly, using information and communication technologies appeared as potential medium to sustain the social networks and reduce social isolation among informal caregivers. The results of this review propose clinical implications that be applicable for interventions.