Caregivers are the backbone of the continuing care system in Canada. In 2012, 8 million Canadians, or 28% of the population aged 15 and over, provided care to family members or friends with a long-term health condition, a disability or problems associated with aging (Turcotte, 2013). Among these caregivers, the majority provided care to a senior.
Although literature shows positive effects of caregiving, there is a substantial body of research that has established negative effects on the caregiver, especially when the intensity of care and related stressors increases, such as when the care recipient experiences serious physical and/or cognitive impairment (Pinquart and Sörensen, 2003; Robinson et al., 2009). Negative effects on the caregiver include burden, depression, stress, financial problems, poor health, loneliness and social isolation (Chappell and Funk, 2011).
While there is a vast literature on caregivers, not much of it has explored the issue of social isolation. Those studies that have been conducted suggest that caregiving in general does not lead to feelings of loneliness and social isolation per se. However, caregivers who experience lower levels of caregiving satisfaction experience more loneliness and social isolation. When caregiving is particularly demanding – when it entails heavy or live-in 24-hour care, for instance, or caring for someone with moderate or severe dementia or a serious physical disability, or when the care competence of the caregiver is low or challenged – it can result in feeling alone or being disconnected from the wider community of family, friends and neighbours (Lecovich, 2015; Robinson et al., 2009). Spousal caregivers may also be at greater risk of experiencing decreased social support and loneliness (Centre for Addiction and Mental Health, 2010). A qualitative study on caregiving in Elliot Lake, a retirement community in northern Ontario, found that caregivers’ opportunity to participate in social activities is significantly reduced by the inability to leave the care recipient alone, and that caregivers can feel a great sense of isolation in the post-caregiving stage as they need to find new identities, social roles and activities (Sherman and Lacarte, 2012). Caregivers who are looking after spouses with dementia face the additional challenge of, in the words of one expert, “waking up every day with someone who has nothing to say.”
Caregivers in remote areas may face particular challenges to isolation and loneliness. Qualitative research undertaken by Chappell et al. (2008) found that caregivers in remote areas faced a number of challenges, such as small isolated populations, severe winters, non-existent community programs, lack of community facilities in which to meet with others, and costly travel for services.
There are also a number of ameliorating factors that can protect against the negative impact of caregiving on health and well-being, including loneliness and social isolation. For instance, Robinson et al. (2009) found that lack of formal care services and financial difficulty were by far the strongest predictors of negative consequences of caregiving. Similarly, accessibility barriers can reduce social participation opportunities for both care recipients and caregivers, and lack of information on available services can increase caregiver burden and affect social participation (Sherman and Lacarte, 2012).
Thus, the provision of helping and financial support through informal assistance, respite services, home care or related services, and income and tax relief programs can have an enormous impact on the reduction of loneliness and social isolation of caregivers in these extreme situations (Sims-Gould and Martin-Matthews, 2007; Sussman and Regehr, 2009).