Social Isolation, Loneliness, and Caregiver Burden Among Paid and Unpaid Caregivers of Homebound Older Adults

Abstract

Caregivers of homebound older adults may have high levels of burden and more vulnerability to social isolation and loneliness, given that their care recipients are more physically frail and isolated. Existing literature has not fully investigated differences between paid and unpaid caregiver burden or their experiences of social isolation. We interviewed paid (n=21) and unpaid family caregivers (n=22) of homebound older adults in a hospital-affiliated geriatric house call program. We used validated survey instruments to measure social isolation, loneliness, and caregiver burden, and semi-structured interviews to solicit qualitative data. In our sample, 42% of caregivers helped with 5+ ADLs and 58% with 5+ iADLs. Using the Caregiver Burden Inventory, burden types between caregivers were compared with chi-squared tests. Compared to paid caregivers, unpaid family caregivers experienced more “developmental” burden such as “missing out on life” (p<0.01). Paid caregivers exhibited more “time” burden, such as “not having a minute’s break from caregiving responsibilities” (p<0.01). 44% of caregivers were considered socially isolated according to the Berkman-Syme Social Index. However, using the UCLA 3-item Loneliness Scale, few caregivers felt lonely (14%). Thematic analysis revealed that family caregivers desired support groups but time pressures limited their participation (23%). Interestingly, smart phones were regularly cited as a tool for alleviating loneliness for paid caregivers when alone on the job (19%), a novel finding. Findings suggest that caregivers of the chronically ill and physically isolated may be at particular risk of social isolation. Network based social support interventions may mitigate some of these vulnerabilities.

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English‐speaking regions: Before and during the COVID‐19 pandemic

“…[23][24][25][26][27][28][29] This is particularly the case for those providing care for people with enduring brain conditions, due to social segregation, and cognitive and emotional deterioration of the care recipients, reflecting a dyadic impact. 4,5,[30][31][32][33][34] Pandemic-related restrictions have now exaggerated rates of loneliness and social isolation globally, 35 particularly in older people, 7,8,[36][37][38] women, 2,5,[39][40][41][42][43] and informal caregivers of people with enduring health conditions. 14,16,36,44,45 Informal caregiver status is an independent risk factor for increased loneliness during COVID-19.…”

“…Pre‐pandemic, loneliness in caregivers was associated with many adverse health outcomes, low quality of life, depression, and psychological distress 23–29 . This is particularly the case for those providing care for people with enduring brain conditions, due to social segregation, and cognitive and emotional deterioration of the care recipients, reflecting a dyadic impact 4,5,30–34 . Pandemic‐related restrictions have now exaggerated rates of loneliness and social isolation globally, 35 particularly in older people, 7,8,36–38 women, 2,5,39–43 and informal caregivers of people with enduring health conditions 14,16,36,44,45 .…”

The experiences of spousal and adult child caregivers of stroke survivors in transitional care: A qualitative systematic review

“…Kokorelias et al (2020) described caregiving as a full‐time job and reported that caregivers struggle to manage time outside of caregiving. According to Sun et al (2019), caregivers of homebound care recipients are more susceptible to social isolation due to the frailty and dependence of the care recipient. This loneliness is linked to increased levels of stress and is a strong predictor of depression and overall well‐being (Vasileiou et al, 2017).…”

Muslim caregivers' experiences in caring for patients receiving peritoneal dialysis

“…Reduced social interaction and travelling were experienced as they spent an average of 13 h a day on caregiving which meant they had less time available for interacting with others and travelling. All these factors may increase the risk of social isolation (Sun et al, 2019). Indeed, eight out of ten Muslim family caregivers in this study reported that they felt socially isolated while being family caregivers.…”