Informal caregiving and quality of life among older adults: Prospective analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)

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.

Internet-facilitated interventions for informal caregivers of patients with neurodegenerative disorders: Systematic review and meta-analysis

“…These studies are affected by low engagement and high attrition rates 29 often due to the complexity, time demands and intensity of care-provision. 30 Internet-facilitated interventions have improved access through being flexible and cost-effective. 31 This is further enhanced by the recent proliferation in smartphone ownership, concomitant with availability of mobile applications.…”

“…These studies are affected by low engagement and high attrition rates 29 often due to the complexity, time demands and intensity of care-provision. 30…”

How did the COVID-19 pandemic impact the wellbeing of family care-givers? A longitudinal study of older adults in Germany

“…However, we did find a decrease in life satisfaction for new care-givers who provided care in 2020 but not in 2017. This finding may be connected to a caregivers' recent transition into family care, as prior research has shown that particularly new care-givers experience declines in life satisfaction and quality of life (Sacco et al, 2022;Gerlich and Wolbring, 2021).…”

“…Even in non-pandemic times, studies confirm the assumptions underlying the care-giver stress process model (Pearlin et al, 1990) by showing that family care-giving is a persistent cause of stress leading to negative wellbeing outcomes (e.g. Hirst, 2005;Hansen et al, 2013;Kaschowitz and Brandt, 2017;Sacco et al, 2022). Specifically in Germany, which is often considered to have an 'explicitly familialistic' care regime, family care-givers are at the centre of maintaining the health and wellbeing of individuals in need of care (Leitner, 2019;Fischer et al, 2022).…”

“…However, as previous research suggests, the dynamics of family care (non-)provision should be taken into account more precisely as the relationship between family care and wellbeing can be different for those taking up, continuing or ceasing to provide family care (e.g. Hirst, 2005;Rafnsson et al, 2017;Sacco et al, 2022;Gerlich and Wolbring, 2021). Accordingly, for the purpose of this study, sample respondents responding with 'Yes' to the family care survey question in both years of a sample's observation were identified as 'continuous care-givers' (6.7% of the sample); those responding with 'No' in 2017 but with 'Yes' in 2020 were identified as 'new care-givers' (9.7% of the sample); those responding with 'Yes' in 2017 and with 'No' in 2020 were identified as 'past care-givers' (10.9% of the sample) and those responding with 'No' in both survey years were identified as non-care-givers (72.7% of the sample).…”