Themes describing social isolation in family caregivers of people living with dementia: A scoping review

Abstract

Introduction The number of people with dementia has been increasing. Evidence shows that over 16 million family caregivers provide unpaid care for people with dementia. However, family caregivers experience several challenges throughout their caregiving role, including that of social isolation. Although social isolation in people with dementia has been well documented, social isolation in their family caregivers has not received as much scholarly attention. This scoping review sought to address this dearth of research through the following research question: “What are themes, concepts, or constructs that describe social isolation of family caregivers for people living with dementia?”. Method An electronic search was conducted in PubMed, PsycInfo, and Scopus, using the following Boolean search phrase: dementia AND “social isolation” AND (caregiver OR carers). Content analysis was conducted to identify relevant themes. Findings The initial search yielded 301 studies. Through screening processes, 13 studies were eligible for review. Based on a synthesis of evidence, five themes emerged from the data: disease progression, psychological state, social networks, social supports, and technology. Discussion This review demonstrates that caregiving is related to social isolation in family caregivers of people living with dementia. The experience of social isolation was related to the progression of dementia, psychological states, and lack of supports. In contrast, social supports, social networks, and using technology may reduce social isolation. Identifying themes provides policy and practice implications, such as using information and communication technology to create and redefine social networks.

2023 Alzheimer's disease facts and figures

“…The poll also found that more than half of women with children under age 18 felt that caregiving for someone with dementia was more challenging than caring for children (53%) A11 Many caregivers of people with Alzheimer's or other dementias provide help alone and are at risk of social isolation 496 . Forty‐one percent of dementia caregivers in the 2014 Alzheimer's Association poll reported that no one else provided unpaid assistance A11 …”

Intergenerational Solidarity With Grandparents in Emerging Adulthood: Associations With Providing Support to Older Parents in Established Adulthood

“…Family nursing practice has the potential to build on the strengths of these intergenerational relationships and to develop intergenerational supports within the extended family for the older adult and their primary caregiver. Developing these additional supports can decrease caregiver isolation and caregiver burden, particularly when the family is dealing with chronic conditions like dementia, and improve quality of life for the caregiver and the person receiving care (Chiao et al, 2015; Iecovich, 2008; Lee et al, 2022).…”

“…For too many family caregivers, this means providing care in isolation, without support from the other members of their family, if not in conflict with them, as everyone in the family struggles with the realities of the increasing and ever-changing needs of the parent as they age (Checkovich & Stern, 2002). Understanding the importance and availability, or lack of availability, of supportive relationships within an older adult's family can enable family nurse practitioners to address or reduce these conflicts, and to bring in appropriate community resources to supplement or strengthen those relationships and reduce caregiver isolation (Lee et al, 2022).…”

Web-Based Technologies to Support Carers of People Living With Dementia: Protocol for a Mixed Methods Stepped-Wedge Cluster Randomized Controlled Trial

“…Much of the care given to people living with dementia is provided by informal carers, including family, friends, and neighbors, who do so without financial remuneration [ 3 , 4 ]. Although caring is frequently motivated by love and concern, caring for someone with dementia can also be burdensome and is linked with the added risk of social isolation [ 5 - 7 ] and carer distress [ 8 ]. Those who care for a person living with dementia tend to have less time for holidays, leisure activities, and family and friends [ 9 ].…”

“…Those who care for a person living with dementia tend to have less time for holidays, leisure activities, and family and friends [ 9 ]. As a group, carers are more likely to have smaller social networks than people without caring responsibilities, and social support can often decrease over time [ 7 , 10 ]. Although informal carers are at risk of social isolation, when social support is available, social isolation is reduced [ 7 ], which points to the need to find ways to increase formal and informal social support for carers.…”