"Older persons providing or not providing informal care to non-family peers - The experience of Health-related Quality of Life. Results from the Swedish Citizen Panel survey "
Authors: Olaya-contreras Patricia , Wijk Helle , Siira Elin , Yndigegn Signe , Rolandsson Bertil , Wolf Axel 
Published: January 2024

In Scandinavia, older persons have managed to take care of themselves at home with the help of relatives, friends, non-family members and others’ [1]. However, previous research have focused on carers mainly providing formal care, and little is known on the impacts on the carers’ health when providing informal care among older persons [2]. In Sweden, almost half of the hours of caregiving are provided by older persons. In Public Care, to meet the elderly persons’ need of care and support, a recent trend in eldercare is so- called innovation, which is commonly done in collaboration between public care, and many other sectors, including citizens. One of the goals is to activate older persons in care policies, emphasize preventive measures in ageing policy, and, involve older persons in social communities. Among younger and older carers providing care to older persons with impaired health, caregiving has been considered such as predictor factor for illness, depressed mood, and long-term sick-leave. Older persons who provide care to older adults with dementia, and experience strain, had a high risk for mental illness.  Providing care to partner with health disability, has a broad-based negative impact. In general, there is a lack of knowledge on the older adults’ HRQoL, and on the burden due to diverse informal activities of care provided for older persons to non-family peers.

This study examined how and to what extent perceived health-related quality of life (HRQoL) differs between older adults providing and not providing informal care to non-family peers and whether their perceived HRQoL is associated with experiences of strain.

Methods: Our study is based on a sub-sample of the Swedish Citizen Panel survey, “involuntary loneliness among senior citizens”, involving older adults (+65 years old; n = 10,096). A cross-sectional survey was conducted, most of the participants were Swedish men (67%) living in urban places.The Swedish Citizen Panel is an infrastructure for collecting panel data via online questionnaires to be utilized by academic researchers and Swedish authorities. Health-related quality of life was assessed throughout the EQ-5D-3L instrument.

Results: The HRQoL among the men was lower HRQoL in all the analyses. However, type of activity provided, the older persons’ physical and emotional condition, and socioeconomic factors worsened HRQoL. Particularly, older participants suffering from pain, reported lower HRQoL, and experienced more strain. Care supported by organizations was most positive experiences compared to health-related care or social support.

Conclusions: Distinguishing older persons who provide care to non-family peers at risk of illness according to the type of care provided, socioeconomic conditions, social networks, age and physical limitations, and further, examining the diversity in care practices in the outskirts of public health, all together should improve the informal older adults’ HRQoL, and enhance a more sustainable, and innovative informal eldercare in Sweden.