Informal care and spousal caregiver’s burden in old age

The ageing of the population creates an increasing demand for public long-term care (LTC). In order to keep the LTC system sustainable, policies are aimed at ‘ageing in place’ and residential care is limited. In this context, informal care has become a key issue for welfare policy. Informal care giving can have negative consequences. The decision to take up the care of someone close to you may lead to emotional, physical and financial stress, resulting in overburden. In old age, in particular for spouses, caregiver’s burden may be related to the caregiver’s own health impairments and declining quality of the relationship with the care recipient. This thesis focuses on two issues: the use of informal care (part A) and the burden on the spouse who provides care (Part B).

Part A

We answered the question: under what circumstances is informal care used? Data from the Longitudinal Aging Study Amsterdam is used. The Andersen-Newman model views use of care as result of decisions made by an individual, which are constrained by their position in society and the availability of care. The Informal Care Model applies this model to the perspective of the caregiver. We examined whether informal care use changed over the years and, if an older adult started to use personal care, whether the likelihood of receiving that care from the spouse, changed over the years. In one study, we analysed 9,585 observations from 3,574 respondents between 1995 and 2012 for whether informal care was used. In another study, we analysed observations from 221 independently living married respondents between 1995 and 2016 who used personal care for the first time. Results showed that next to the care need and predisposing and enabling factors, changing societal circumstances as well as the caregiver’s physical functioning and the spousal relationship quality determine informal care use. The proportion of older people using informal care was lower in the late 2010s than in 1992, while the proportion of older people using formal care increased somewhat. These findings are only in part due to changing individual characteristics of the older adults included in our study.

Part B

We answered our second research question: what determines spousal caregiver’s burden? We used data from the Older Persons and Informal Caregivers Survey—Minimum Data Set. As the Caregiver Stress Process Model describes, caregiver’s burden depended on multiple conditions; the need for care, hours of caregiving, secondary stressors, and buffers as the help from others and fulfilment with the caregiving tasks. We examined whether the model works differently for husbands and wives by using mediation and moderation effects with structural equation modelling. We used cross-sectional data of 1,611 couples. Additionally, we applied multilevel regression analysis on burden, stratified by gender, to study the impact of one-year duration of the caregiving situation on burden; 1,444 observations from 722 couples were analysed. Results showed that care need factors, hours of caregiving, and secondary stressors explain spousal caregiver’s burden; however, the mechanisms differed for men and women. Longer caregiving leads to higher burden, especially for wives. Wives reported a higher burden, had spouses with a greater care need, provided more hours of care a week, and more fitted the wear-and tear model than husbands.

Conclusion

Variation in informal care use and caregiving burden is explained by three types of factors related to both the care user and caregiver, their mutual relationship, and the societal context. The thesis also provides evidence that informal care is a highly gendered phenomenon. Female caregivers were disadvantaged in all conditions.