read the article I have attached below and write a little bit about it. focus on ways to reduce caregiver burnout when caring for an older loved one in an informal way.
Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH) Vol.:(0123456789) Social Indicators Research (2022) 160:845–866 https://doi.org/10.1007/s11205-020-02473-x 1 3 ORIGINAL RESEARCH Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH) Lawrence B. Sacco1 · Stefanie König2 · Hugo Westerlund1 · Loretta G. Platts1 Accepted: 19 August 2020 / Published online: 8 September 2020 © The Author(s) 2020 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 relation- ship varies according to care intensity and burden. We used fixed effects and change analy- ses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupa- tional 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 transi- tions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceas- ing 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 provid- ing informal care are likely to improve the quality of life of older people. Keywords Informal caring · Care burden · Care intensity · CASP · CASP-19 · Longitudinal · Later life Electronic supplementary material The online version of this article (https ://doi.org/10.1007/s1120 5-020-02473 -x) contains supplementary material, which is available to authorized users. * Lawrence B. Sacco
[email protected] 1 Stress Research Institute, Department of Psychology, Stockholm University, Stockholm, Sweden 2 Department of Psychology and Centre of Ageing and Health (AgeCap), University of Gothenburg, Gothenburg, Sweden http://orcid.org/0000-0002-4275-5378 http://orcid.org/0000-0001-5808-5340 http://orcid.org/0000-0002-3243-0262 http://crossmark.crossref.org/dialog/?doi=10.1007/s11205-020-02473-x&domain=pdf https://doi.org/10.1007/s11205-020-02473-x https://doi.org/10.1007/s11205-020-02473-x 846 L. B. Sacco et al. 1 3 1 Introduction Improved health and survival into later life have enabled a new phase of life to be observed. Described as the Third Age, it is a period of freedom from labour market activities with possibilities for “personal achievement and fulfilment” (Laslett 1989, p. 4). Leaving the labour market does not necessarily enable people to gain personal control over their time and activities, however, since people may be providing unpaid informal care. Informal car- egiving 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 Alli- ance 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 sys- tem, shouldering the burden of care where formal care services are unavailable and aiding care receivers in accessing formal care services (Chappell and Blandford 1991). Retrenchment of formal care provision has contributed to increased rates of informal caregiving over recent decades, including in certain countries traditionally viewed as hav- ing a universal eldercare model. In Sweden, reductions of residential care beds have not been adequately compensated for by increases in homecare services, leading to substantial increases in family provision, or re-familialization, of care (Ulmanen and Szebehely 2015). Recent figures from Sweden show that around 14% of the adult population is now provid- ing informal care at least every week (Socialstyrelsen 2014, p. 16). Ageing populations are causing people over pension age to be a particularly fast growing group of caregivers, as care obligations, in particular towards ageing parents and spouses, are increasing (Carers UK and Age UK 2015; Pickard 2015). While this form of unpaid work is most prevalent in mid to later life (circa 45–65 years), the time spent caregiving increases with age, with people aged 65–80 providing the most time in Sweden, commonly as spousal caregivers (Dahlberg et al. 2007; Socialstyrelsen 2014; Verbakel et al. 2017). 1.1 Potential Impact of Caregiving upon Quality of Life While where possible in this brief review of the evidence we focus on studies of older adults, we include wider evidence from studies of the general population which likely include substantial numbers of older carers. From the perspective of the third age, some aspects of providing informal care may be positive, such as offering a self-esteem enhanc- ing role (Jacobi et al. 2003) and productive activity (Matz-Costa et al. 2014). Informal care may thereby provide an additional rewarding role (role enhancement) (Rozario et al. 2004), which might improve carer quality of life (Ang and Jiaqing 2012; Brown and Brown 2014). Specifically, prior research has linked providing extra-residential care for a parent to higher sense of mastery (Hansen et al. 2013) and, in women, with heightened reported purpose in life (Marks et al. 2002). However, caregiving has been linked to a host of detrimental outcomes and circum- stances. While noting possibilities for potential benefits of caregiving, the caregiver stress model, developed by Pearlin et al. (1990), emphasizes the major sources of stresses that informal caregiving exposes caregivers to. There is evidence that informal care provision leads to carer psychological distress, lower wellbeing and poorer quality of life. Meta- analyses of cross-sectional and longitudinal studies have reported positive associations between subjective care burden and depressive symptoms (del-Pino-Casado et al. 2019) 847Informal Caregiving and Quality of Life Among Older Adults:… 1 3 and between caring for frail, older adults and worse wellbeing, depression, self-efficacy and physical health (Pinquart and Sörensen 2003). However, a large portion of the studies included in these reviews were based on non-probabilistic samples or focused exclusively on the particularly vulnerable group of dementia carers. Turning to population-based studies examining wellbeing and quality of life, the picture is mixed, including negative impacts of caregiving (Broek and Grundy 2018; Chen et al. 2019; Hirst 2005; van den Berg et al. 2014; Verbakel et al. 2017, 2018), no significant effects (McMunn et al. 2009; Wahrendorf and Siegrist 2010), negative effects only for spe- cific subgroups (Hansen et al. 2013; Lacey et al. 2019; Zaninotto et al. 2013), or even posi- tive effects (Hansen et al. 2013; McMunn et al. 2009). One reason for such heterogeneity might be differences in study design, in particular the degree to which selection into car- egiving has been controlled for. In cross-sectional studies it is difficult to discern whether effects are due to caregiving or have resulted from selection into the caregiving role of people who were already distinctive in terms of their quality of life. For this reason, in the current study, we take a longitudinal approach to analysing community-based data in order to control better for selection into caregiving and obtain more robust evidence regarding the impact of caregiving upon quality of life of the carer. 1.2 Intensity of Caregiving and Carer Burden Another important reason for these disparate conclusions about the impact of caregiving on carer quality of life is diversity in caregivers’ experiences. Aspects of the care situ- ation may be important in determining whether role enhancement or caregiver stress is dominant. One important aspect is whether providing care is experienced as burdensome by the carer. It has been suggested that the negative effect of informal caregiving on health- related quality of life and depressive symptoms may be limited to carers who report that it is an emotional or mental strain to provide this care (Roth et al. 2009). Another possible source of discordance among studies is few studies have distinguished levels of intensity of care. Carers providing more intensive care tend to have lower life satisfaction and health than non-carers; low-intensity carers are often indistinguishable from non-carers (Borg and Hallberg 2006; Chen et al. 2019; Ross et al. 2008, p. 44; van den Berg et al. 2014). In the current study, we distinguish different sorts of caregiving, specifically examin- ing care provided at differing intensities in terms of weekly hours and whether the carer experiences caregiving as burdensome. It is possible that providing care in a non-intensive way (e.g., no more than a few hours per week) may enhance quality of life by encouraging social connection, but that more intensive caregiving may generate difficulties. Similarly, if providing care is not burdensome, quality of life might be enhanced. Existing research into quality of life of informal carers may lump together very dissimilar carers, thereby gener- ating inconsistent findings. By distinguishing levels of intensity of caregiving and carer burden, we can examine longitudinal associations between provision of informal care and quality of life in a more nuanced way, and explore whether providing informal care might have both positive and negative impacts upon quality of life. 1.3 Transitions into and out of Caregiving Over the adult lifecourse, providing informal care to an ill or disabled adult is a rela- tively commonplace role, involving instances in which individuals are taking up, contin- uing and ceasing engagement in informal care. Yet, there is limited evidence regarding 848 L. B. Sacco et al. 1 3 the impact of transitions into and out of informal care upon carer quality of life and wellbeing. Transitions into caregiving have been associated with declines in wellbeing and quality of life (Hirst 2005; Marks et al. 2002; Pinquart and Sörensen 2003; Rafns- son et al. 2017). Transitions out of caregiving have been associated with poorer wellbe- ing (Dolan et al. 2008; Hirst 2005), perhaps because this corresponds to the life event of a close family member entering an institution or passing away, but other studies found no change in quality of life (Rafnsson et al. 2017; Yiengprugsawan et al. 2016). A key question raised by Rafnsson et al. (2017) is whether people who stop providing infor- mal care experience full recovery to pre-caregiving level or longer-lasting effects can be observed. In addition, little is known about which aspects of the care situation might be generating such changes in quality of life: declines may be more marked if people begin high intensity care or burdensome care, and there may also be gender differences, e.g., women providing ≥ 20 h of care weekly were particularly vulnerable to mental health decline (Hirst 2005). In the current study, we use panel data in order to investigate the impact upon caregivers of transitions into and out of caregiving and, in addition, whether any negative impacts of caregiving might be ameliorated (e.g., via adaptation) or exacerbated (e.g., via wear-and-tear) over time. The aim of this study is to examine longitudinal associations between caregiving, including transitions into and out of caregiving, and quality of life using a large commu- nity-based sample. We address the following research questions: 1. How is providing informal care associated with concurrent quality of life? 2. Does the relationship between informal care and quality of life differ for carers who provide a high number of hours of care or who report that caregiving is burdensome? 3. How does entering or exiting providing informal care impact quality of life for carers? This study makes several contributions to the literature. First, we exploit the longi- tudinal nature of the data to address potential issues of selection, by using fixed effects modelling in which stable characteristics are accounted for. Analyses are additionally adjusted for potential time-varying confounders such as poor health or pre-existing depression. Furthermore, we also analyse how caregiving transitions are linked to both the level of and changes in quality of life, providing insight into the dynamics and the temporality of the relationship. Second, we explore the relationship in terms of quality of life differences between carers and non-carers, as well as in terms of the intensity (weekly hours) and the burden (subjective care-related burden) of caregiving. In this way, our analyses acknowledge the diversity of caregivers’ experiences. Third, we use the CASP-19 scale that is a measure sensitive to both positive and negative aspects of quality of life. The CASP-19 (control, autonomy, self-realization and pleasure) scale is specifically designed to measure quality of life among older adults, by incorporat- ing eudaemonic (whether activities are meaningful) and hedonic (whether activities are pleasurable) aspects of wellbeing. This is particularly important given that we evaluate caregiving according to burden and weekly hours. Through the CASP-19 measure, as well as capturing any expected negative effect of care for caregivers involved in more demanding roles, we also assess any potential positive impact for those carers who pro- vide fewer hours and do not report burden. Lastly, the study is carried out in a sample of people who perform paid work only at low intensity or not at all, which means that role conflict between caregiving and paid work is unlikely to be an important factor in any observed relationships. 849Informal Caregiving and Quality of Life Among Older Adults:… 1 3 2 Data and Method 2.1