Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)

Lawrence B Sacco,Stefanie König,Hugo Westerlund,Loretta G Platts

doi:10.1007/s11205-020-02473-x

Abstract

Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults’ quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n = 5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults’ quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.

Highlights

Improved health and survival into later life have enabled a new phase of life to be observed
Spending more hours providing care was correlated with care burden: of those providing care for 1–4 h weekly, 32% reported that caregiving was sometimes or often burdensome; at ≥ 50 h weekly, 79% reported that it was sometimes or often burdensome
Graded relationships were observed with care intensity and care burden, with lowest quality of life scores reported by participants who were providing 50 or more hours of care weekly and by participants who reported that caregiving was often burdensome

Summary

Introduction

Improved health and survival into later life have enabled a new phase of life to be observed. Leaving the labour market does not necessarily enable people to gain personal control over their time and activities, since people may be providing unpaid informal care. Informal caregiving is the provision of care for someone who is ill or disabled by somebody from the cared-for person’s intimate environment who is not remunerated or trained (National Alliance for Caregiving and AARP Public Policy Institute 2015). These contributions, reported as substantial in economic evaluations, maintain the sustainability of the wider social care system (Hollander et al 2009). Informal carers are a pivotal part of the long-term care system, shouldering the burden of care where formal care services are unavailable and aiding care receivers in accessing formal care services (Chappell and Blandford 1991)

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