Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)
Vol.: XXXXXXXXXX)
Social Indicators Research XXXXXXXXXX:845–866
https:
doi.org/10.1007/s XXXXXXXXXXx
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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
elated 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 co
esponding 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,
espectively, 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
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* Lawrence B. Sacco
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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
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846 L. B. Sacco et al.
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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 XXXXXXXXXXThese contributions, reported
as substantial in economic evaluations, maintain the sustainability of the wider social care
system (Hollander et al XXXXXXXXXXInformal 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
een 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 XXXXXXXXXXWhile 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; Ve
akel et al. 2017).
1.1 Potential Impact of Caregiving upon Quality of Life
While where possible in this
ief 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 XXXXXXXXXXand productive activity (Matz-Costa et al XXXXXXXXXXInformal 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 XXXXXXXXXXand, 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
etween subjective care burden and depressive symptoms (del-Pino-Casado et al. 2019)
847Informal Caregiving and Quality of Life Among Older Adults:…
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and between caring for frail, older adults and worse wellbeing, depression, self-efficacy
and physical health (Pinquart and Sörensen XXXXXXXXXXHowever, 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; Ve
akel 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 XXXXXXXXXXOne 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
cu
ent 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
y the carer. It has been suggested that the negative effect of informal caregiving on health-
elated 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 XXXXXXXXXXAnother 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 cu
ent 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
urden, 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.
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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 XXXXXXXXXXTransitions out of caregiving have been associated with poorer wellbe-
ing (Dolan et al. 2008; Hirst 2005), perhaps because this co
esponds 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 XXXXXXXXXXA key
question raised by Rafnsson et al XXXXXXXXXXis 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 XXXXXXXXXXIn the cu
ent 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 exace
ated (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 concu
ent 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 ca
ied 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:…
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2 Data and Method
2.1