ArticlePDF AvailableLiterature Review

Informal Caregiving, Loneliness and Social Isolation: A Systematic Review

MDPI
International Journal of Environmental Research and Public Health (IJERPH)
Authors:

Abstract

Background: Several empirical studies have shown an association between informal caregiving for adults and loneliness or social isolation. Nevertheless, a systematic review is lacking synthesizing studies which have investigated these aforementioned associations. Therefore, our purpose was to give an overview of the existing evidence from observational studies. Materials and Methods: Three electronic databases (Medline, PsycINFO, CINAHL) were searched in June 2021. Observational studies investigating the association between informal caregiving for adults and loneliness or social isolation were included. In contrast, studies examining grandchild care or private care for chronically ill children were excluded. Data extractions covered study design, assessment of informal caregiving, loneliness and social isolation, the characteristics of the sample, the analytical approach and key findings. Study quality was assessed based on the NIH Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Each step (study selection, data extraction and evaluation of study quality) was conducted by two reviewers. Results: In sum, twelve studies were included in our review (seven cross-sectional studies and five longitudinal studies)—all included studies were either from North America or Europe. The studies mainly showed an association between providing informal care and higher loneliness levels. The overall study quality was fair to good. Conclusion: Our systematic review mainly identified associations between providing informal care and higher loneliness levels. This is of great importance in assisting informal caregivers in avoiding loneliness, since it is associated with subsequent morbidity and mortality. Moreover, high loneliness levels of informal caregivers may have adverse consequences for informal care recipients.
International Journal of
Environmental Research
and Public Health
Systematic Review
Informal Caregiving, Loneliness and Social Isolation:
A Systematic Review
AndréHajek * , Benedikt Kretzler and Hans-Helmut König


Citation: Hajek, A.; Kretzler, B.;
König, H.-H. Informal Caregiving,
Loneliness and Social Isolation: A
Systematic Review. Int. J. Environ.
Res. Public Health 2021,18, 12101.
https://doi.org/10.3390/
ijerph182212101
Academic Editor: Paul B. Tchounwou
Received: 1 November 2021
Accepted: 17 November 2021
Published: 18 November 2021
Publisher’s Note: MDPI stays neutral
with regard to jurisdictional claims in
published maps and institutional affil-
iations.
Copyright: © 2021 by the authors.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license (https://
creativecommons.org/licenses/by/
4.0/).
Hamburg Center for Health Economics, Department of Health Economics and Health Services Research,
University Medical Center, Hamburg-Eppendorf, 20246 Hamburg, Germany; b.kretzler.ext@uke.de (B.K.);
h.koenig@uke.de (H.-H.K.)
*Correspondence: a.hajek@uke.de
Abstract:
Background: Several empirical studies have shown an association between informal care-
giving for adults and loneliness or social isolation. Nevertheless, a systematic review is lacking
synthesizing studies which have investigated these aforementioned associations. Therefore, our
purpose was to give an overview of the existing evidence from observational studies. Materials and
Methods: Three electronic databases (Medline, PsycINFO, CINAHL) were searched in June 2021.
Observational studies investigating the association between informal caregiving for adults and
loneliness or social isolation were included. In contrast, studies examining grandchild care or private
care for chronically ill children were excluded. Data extractions covered study design, assessment of
informal caregiving, loneliness and social isolation, the characteristics of the sample, the analytical
approach and key findings. Study quality was assessed based on the NIH Quality Assessment Tool
for Observational Cohort and Cross-Sectional Studies. Each step (study selection, data extraction and
evaluation of study quality) was conducted by two reviewers. Results: In sum, twelve studies were
included in our review (seven cross-sectional studies and five longitudinal studies)—all included
studies were either from North America or Europe. The studies mainly showed an association
between providing informal care and higher loneliness levels. The overall study quality was fair to
good. Conclusion: Our systematic review mainly identified associations between providing informal
care and higher loneliness levels. This is of great importance in assisting informal caregivers in
avoiding loneliness, since it is associated with subsequent morbidity and mortality. Moreover, high
loneliness levels of informal caregivers may have adverse consequences for informal care recipients.
Keywords:
informal caregiving; loneliness; private caregiving; social exclusion; social isolation;
spousal caregiving
1. Introduction
Remaining in familiar environments is often important for individuals in late life [
1
,
2
].
Therefore, home care is often preferred [
3
,
4
]. As the number of individuals needing care is
likely to increase due to reasons of demographic ageing, home care is of great importance.
A key part of home care is the provision of informal care. This can be defined as
the provision of private care for relatives, friends or neighbors in frequent need of care,
including tasks such as personal care or simply assistance with the household [
5
]. A large
body of evidence exists clearly demonstrating an association between informal caregiving
and adverse health outcomes (such as decreased mental health, e.g., [68]).
Drawing on the caregiver stress model proposed by Pearlin et al. [
9
], informal care-
giving can include several stressors such as burden [
10
]. These stressors can contribute to
feelings of social isolation or loneliness [
11
]. Some studies have examined loneliness or
social isolation in informal caregivers (e.g., [
12
15
]), partly demonstrating a link between
provision of informal care and increased loneliness. This is plausible given the fact that
informal caregiving can reduce the time available for family and friends due to reasons
Int. J. Environ. Res. Public Health 2021,18, 12101. https://doi.org/10.3390/ijerph182212101 https://www.mdpi.com/journal/ijerph
Int. J. Environ. Res. Public Health 2021,18, 12101 2 of 12
of prioritizing [
16
]—which can result in loneliness or isolation. Nevertheless, informal
caregiving can also contribute to an increased size of social networks (e.g., by establishing
contacts with other informal caregivers) and may therefore reduce feelings of loneliness or
social isolation. Since a systematic review systematically synthesizing evidence regarding
the association between informal caregiving (provided for adults) and loneliness or social
isolation based on observational studies is lacking, our aim was to fill this gap in knowl-
edge. Knowledge about this association may help to reduce these factors—which in turn,
is of relevance since they are associated with several chronic illnesses, decreased perceived
life expectancy [17,18] and reduced actual longevity [19,20].
It should be noted that loneliness and social isolation are related but distinct con-
cepts [
21
]. For example, previous research showed a Pearson correlation of about five
between loneliness and perceived social isolation [
17
]. While loneliness refers to the feeling
that one’s social network is of a poorer quality or is smaller than desired [
22
,
23
], perceived
social isolation refers to the feeling that one does not belong to society [
22
,
23
]. They also
differ in their correlates and consequences (for further details, please see [
17
]). Both have
in common the fact that they refer to social needs [24].
2. Methods
The methodology of this review satisfied the Preferred Reporting Items for Systematic
Reviews and Meta-Analysis guidelines [
25
]. Additionally, this review is registered with
the International Prospective Register of Systematic Reviews (PROSPERO, registration
number: CRD42020193099). Moreover, a study protocol has been published [26].
2.1. Search Strategy and Selection Criteria
In June 2021, a systematic literature search was conducted in three databases (PubMed,
PsycINFO, and CINAHL). The search query for PubMed is described in Table 1. A two-
step process was used involving: 1. title/abstract screening and 2. full-text screening
(independently by two reviewers (AH and BK). Additionally, a hand search was performed.
Discussions were used when disagreements occurred. This approach was also used for
data extraction and assessment of study quality.
Table 1. Search strategy (Medline search algorithm).
# Search Term
#1 Informal Careg *
#2 Family careg *
#3 Private careg *
#4 Spousal careg *
#5 Parental careg *
#6 #1 OR #2 OR #3 OR #4 OR #5
#7 Lonel *
#8 Social isolation
#9 Social exclusion
#10 #7 OR #8 OR #9
#11 #6 AND #10
Table notes: The asterisk (*) is a truncation symbol. The number sign (#) refers to the search order.
Inclusion criteria were:
cross-sectional and longitudinal observational studies analyzing the association be-
tween informal caregiving for adults (i.e.,
18 years) and loneliness or social isolation
operationalization of main variables with established tools
studies in English or German language
Int. J. Environ. Res. Public Health 2021,18, 12101 3 of 12
published in a peer-reviewed, scientific journal
In contrast, exclusion criteria were:
studies examining grandchild care (e.g., [27,28])
studies examining private care for chronically ill children
studies exclusively using samples with a specific disorder among the caregivers (e.g.,
studies solely including caregivers with specific disorders)
Prior to the final eligibility criteria, a pre-test was conducted (with a sample of 100
title/abstracts). Nevertheless, it should be emphasized that our criteria remained
unchanged.
2.2. Data Extraction and Analysis
One reviewer (BK) carried out the data extraction, cross-checked by a second reviewer
(AH). The data extraction covered the design of the study, operationalization of key vari-
ables (informal caregiving and loneliness/social isolation), characteristics of the sample,
analytical approach, and important results.
2.3. Assessment of Study Quality/Risk of Bias
The study quality was assessed using the NIH Quality Assessment Tool for Observa-
tional Cohort and Cross-Sectional Studies [
29
]. It is a well-known and widely used tool
when dealing with observational studies (e.g., [30,31]).
3. Results
3.1. Overview of Included Studies
Figure 1displays the selection process. In sum, n= 12 studies were included in
our review [
11
,
14
,
32
41
]. The main findings are displayed in Table 2(if given, adjusted
results are shown in Table 2). Data came from North America (n= 5, all studies from the
United States), and Europe (n= 7 studies, with three studies from Germany, one study
from Norway, one study from Sweden, one study from the United Kingdom, and one
study using data from Austria, Belgium, the Czech Republic, Denmark, Estonia, France,
Germany, Italy, Luxembourg, Spain, and Switzerland). While seven studies were cross-
sectional [
32
35
,
37
,
40
,
41
], five studies had a longitudinal design [
11
,
14
,
36
,
38
,
39
]. Among
the longitudinal studies, the number of waves used ranged from two to four waves. The
period of observation ranged from three to twelve years.
Two studies only used versions of the De Jong Gierveld scale to quantify loneliness
and two studies only used different versions of the UCLA loneliness scale to quantify
loneliness. Moreover, one study used the Bude and Lantermann scale to quantify perceived
social isolation and the De Jong Gierveld scale to quantify loneliness. The other studies
used different tools or single item measures to quantify feelings of loneliness. Half of the
studies used a dichotomous variable to quantify the presence of informal caregiving. The
other studies examined spousal caregiving or distinguished between, for example, current
caregiving, former caregiving and non-caregiving.
Among the longitudinal studies, two studies used specific panel regression models
to exploit the longitudinal data structure and to reduce the challenge of unobserved
heterogeneity [
42
]. Based on these panel regression models, consistent estimates can be
derived [42].
The sample size ranged from 101 to 29,458 observations (in sum, 91,857 observations).
The studies mainly examined middle-aged and older individuals (average age ranged from
45.0 years to 83.7 years across the studies). The proportion of women in the samples mainly
ranged from about 50% to 60%, whereas two studies had about 70% of women. Further
details are shown in Table 2.
Int. J. Environ. Res. Public Health 2021,18, 12101 4 of 12
Int. J. Environ. Res. Public Health 2021, 18, x 4 of 13
Figure 1. Flow Chart.
Figure 1. Flow Chart.
Int. J. Environ. Res. Public Health 2021,18, 12101 5 of 12
Table 2. Study overview and important findings.
First Author Country Assessment of
Informal Care
Assessment of
Loneliness or Social
Isolation
Study Type Sample
Characteristics
Sample Size;
Age;
Females in Total Sample
Results
Beach (2021) [32] United States dichotomous
(yes/no)
increase in loneliness
due to COVID-19
(yes/no)
cross-sectional family caregivers and
non-caregivers
n= 3509;
M: 58.5, SD: 16.2; 18–100;
69.5%
Regarding a t-test, there were no
differences in the changes of
loneliness due to COVID-19 between
caregivers and non-caregivers.
Beeson (2003 [33]) United States dichotomous
(yes/no)
UCLA Loneliness Scale
(20 items) cross-sectional
Alzheimer’s disease
caregiving spouses
and non-caregiving
spouses
n= 101;
M: 75.8, SD: 8.4;
58.4%
According to a t-test, caregiving
spouses had significantly higher
loneliness levels than non-caregiving
spouses (37.4 vs. 33.1, p< 0.05).
Brandt (2021) [34] Germany
providing assistance
which is necessary for
others (yes/no)
missing company
(yes/no) cross-sectional
community-dwelling
individuals aged 40
years and older
n= 353;
M: 58.9, 40–91;
72.0%
According to logistic regression,
people who provided assistance
were significantly less likely to miss
company (ß = 0.17, p< 0.05).
Ekwall (2005) [35] Sweden dichotomous
(yes/no)
loneliness (three items
rated on
four-point-scale)
cross-sectional
population-based
sample consisting of
individuals aged 75
years and older
n= 4278;
M: 83.7, SD: 5.5;
60.6%
Feelings of loneliness were more
frequent among non-caregivers (e.g.,
recurrent feelings of loneliness:
10.9% vs. 5.8%, p< 0.001).
Gallagher (2020) [36]United
Kingdom
dichotomous
(yes/no)
loneliness during the
last three weeks rated
on a three-point scale
longitudinal
(two waves
from 2017 to
2020)
Understanding
Society/UK
Household
Longitudinal Study
n= 7537;
M: 48.4, SD: 17.2;
53.1%
Regarding F-tests, carers had
significantly higher levels of
loneliness before COVID-19 (8.0% vs
7.5%, p< 0.001) and during
COVID-19 (8.2% vs 7.1%, p< 0.05).
Hajek (2019) [14] Germany dichotomous
(yes/no)
De Jong Gierveld
Loneliness Scale (eleven
items)
longitudinal
(four waves
from 2002 to
2014)
German Ageing
Survey
n= 21,762;
M: 62.3, SD: 11.4, 40–95;
49.6%
According to fixed-effects regression,
there were no significant differences
in loneliness.
Hansen (2015) [37] Norway
non-caregiver;
in-household
caregiver;
out-of-household
caregiver
De Jong Gierveld
Loneliness Scale (eight
items)
cross-sectional
Norwegian Life
Course, Ageing and
Generation study
n= 11,047;
M: 45.0, SD: 11.0, 25–64;
51.2%
Regression analysis showed that
in-household caregivers (compared to
non-caregivers) have increased levels
of loneliness (ß = 0.13, p< 0.05). In
addition, the interactions
in-household caregiver x part-time
employment (ß = 0.27, p< 0.05) and
in-household caregiver x
non-working (ß = 0.20, p< 0.05) were
also related to increased loneliness.
Hawkley (2020) [38] United States spousal caregiver
(yes/no)
UCLA Loneliness Scale
(three items)
longitudinal
(two waves
from 2010 to
2015)
National Social Life,
Health and Aging
Project
n= 970;
64: 32.0%
65–74: 46.8%
75–84: 19.9%
85: 1.5%;
50.0%
t-tests revealed no significant
differences between caregivers and
non-caregivers.
Int. J. Environ. Res. Public Health 2021,18, 12101 6 of 12
Table 2. Cont.
First Author Country Assessment of
Informal Care
Assessment of
Loneliness or Social
Isolation
Study Type Sample
Characteristics
Sample Size;
Age;
Females in Total Sample
Results
Robinson-Whelen (2001)
[39]United States
current caregiver;
former caregiver;
non-caregiver
New York University
Loneliness Scale (three
items)
longitudinal
(four waves
during four
years)
caregivers and control
participants
n= 143;
M: 69.3, SD: 8.9
Female: not specified
Regarding the graphical
presentation, both former and
current caregivers had higher levels
of loneliness than a control group.
Robison (2009) (Robison
et al., 2009) [40]United States dichotomous
(yes/no) going out too little cross-sectional
Connecticut
Long-Term Care
Needs Assessment
n= 4041;
M: 71.5;
61.1%
Logistic regression did not reveal a
significant association between
caregiving and social isolation.
Wagner (2018) [41]
Austria,
Belgium, the
Czech Republic,
Denmark,
Estonia, France,
Germany, Italy,
Luxembourg,
Spain, and
Switzerland
spousal caregiver
(yes/no)
UCLA Loneliness Scale
(three items) cross-sectional
Survey of Health,
Ageing and
Retirement in Europe
n= 29,458;
M: 64.5
SD: 9.4
30–95;
50.4%
According to regression analysis,
spousal care was correlated with
increased levels of loneliness
(ß = 0.12, p< 0.001).
Zwar (2020) [11] Germany
not reporting care at
baseline but having
started to do so at
follow-up
loneliness: De Jong
Gierveld Loneliness
Scale (six items)social
isolation: instrument
from Bude and
Lantermann (2006)
(Bude and Lantermann,
2006) (four items)
longitudinal
(two waves
from 2014 to
2017)
German Ageing
Survey
n= 8658;
M: 65.9
SD: 10.6;
54.5%
Fixed-effects regression found
caregiving to be significantly
associated with higher levels of
loneliness among men (ß = 0.93,
p< 0.01
), but not with social isolation.
Int. J. Environ. Res. Public Health 2021,18, 12101 7 of 12
In the next sections, the results are displayed as follows: 1. Informal caregiving
and loneliness (cross-sectional studies, thereafter longitudinal studies), and 2. Informal
caregiving and social isolation (cross-sectional studies, thereafter longitudinal studies).
3.2. Informal Caregiving and Loneliness
In sum, n= 11 studies examined the association between informal caregiving and
loneliness (six cross-sectional studies and five longitudinal studies).
With regard to cross-sectional studies, four studies found an association between
caregiving and increased levels of loneliness [
33
,
35
,
37
,
41
], whereas one study found no
association between these factors [
32
]. Moreover, one study found an association be-
tween caregiving and a decreased likelihood of loneliness [
34
]. However, this study was
conducted during the COVID-19 pandemic.
With regard to longitudinal studies, three studies found an association between
caregiving and increased loneliness levels [
11
,
36
,
39
], whereas two studies did not identify
significant differences [
14
,
38
]. One of the three studies which found significant differences
only found these among men, but not women [11].
3.3. Informal Caregiving and Social Isolation
In sum, n= 2 studies examined the association between informal caregiving and
social isolation (one cross-sectional study and one longitudinal study). Both studies did
not find an association between these factors [
11
,
40
]. It should be noted that one of these
studies examined both the association between informal caregiving and loneliness as well
as between informal caregiving and social isolation [11].
3.4. Quality Assessment
The assessment of the study quality of the studies included in our review is displayed
in Table 3. While some important criteria were achieved by all studies (e.g., clear aim of the
study or valid assessments of important variables), a few other criteria were only partly
(e.g., adjustment for covariates) or hardly ever met (e.g., sufficient response rate or small
loss to follow-up). Nevertheless, the overall study quality was quite high (seven studies
were rated as ‘good’ and five studies were rated as ‘fair’; none of the studies were rated as
‘poor’).
Int. J. Environ. Res. Public Health 2021,18, 12101 8 of 12
Table 3. Quality Assessment.
Paper Author and Date
1. Was the Research Question
or Objective in This Paper
Clearly Stated?
2. Was the Study Population Clearly
Specified and Defined?
3. Was the Participation Rate of
Eligible Persons at Least 50%?
4. Were all the Subjects Selected or Recruited
from the Same or Similar Populations
(Including the Same Time Period)? Were
Inclusion and Exclusion Criteria for Being in
the Study Prespecified and Applied Uniformly
to All Participants?
5. Was a Sample Size Justification,
Power Description, or Varianceand
Effect Estimates Provided?
6. For the Analyses in This Paper, Were the
Exposure(s) of Interest Measured Prior to
the Outcome(s) Being Measured? (if not
Prospective Should Be Answered as ‘no’,
Even Is Exposure Predated Outcome)
7. Was the Timeframe Sufficient so
That One Could Reasonably Expect
to See an Association between
Exposure and Outcome if It Existed?
Beach (2021)) [32] Yes Yes No (40%) Yes No No (cross-sectional) No (cross-sectional)
Beeson (2003 [33]) Yes Yes Not reported Yes No No (cross-sectional) No (cross-sectional)
Brandt (2021) [34] Yes Yes Notreported Yes No No (cross-sectional) No (cross-sectional)
Ekwall (2005) [35] Yes Yes Yes (52.8%) Yes Yes No (cross-sectional) No (cross-sectional)
Gallagher (2020) [36] Yes Yes Not reported Yes No No (simultaneously) Yes
Hajek (2019) [14] Yes Yes No (e.g., 38% response rate in wave 2) Yes No No (simultaneously) Yes
Hansen (2015) [37] Yes Yes No (43.2%) Yes No No (cross-sectional) No (cross-sectional)
Hawkley (2020) [38] Yes Yes Yes (e.g., 87% in wave 2) Yes No No (simultaneously) Yes
Robinson-Whelen (2001)
[39]Yes Yes Not reported Yes No No (simultaneously) Yes
Robison (2009) (Robison
et al., 2009) [40]Yes Yes No (29%) Yes No No (cross-sectional) No (cross-sectional)
Wagner (2018) [41] Yes Yes Not reported Yes No No (cross-sectional) No (cross-sectional)
Zwar (2020) [11] Yes Yes No (e.g., 27.1% in wave 5) Yes No No (simultaneously) Yes
Paper Author and Date
8. For exposures that can vary
in amount or level, did the
study examine different levels
of the exposure as related to
the outcome (e.g., categories of
exposure, or exposure
measured as continuous
variable)?
9. Were the exposure measures
(independent variables) clearly
defined, valid, reliable, and
implemented consistently across all
study participants?
10. Was the exposure(s) assessed
more than once over time?
11. Were the outcome measures (dependent
variables) clearly defined, valid, reliable, and
implemented consistently across all study
participants?
12. Was loss to follow-up after
baseline 20% or less?
13. Were key potential confounding
variables measured and adjusted
statistically for their impact on the
relationship between exposure(s) and
outcome(s)?
Overall quality judgement
Beach (2021)) [32] Dichotomous Yes Not applicable Yes Not applicable No Good
Beeson (2003 [33]) Dichotomous Yes Not applicable Yes Not applicable No Fair
Brandt (2021) [34] Dichotomous Yes Not applicable Yes Not applicable Yes Fair
Ekwall (2005) [35] Dichotomous Yes Not applicable Yes Not applicable No Fair
Gallagher (2020) [36] Dichotomous Yes Yes Yes Not reported No Fair
Hajek (2019) [14] Dichotomous Yes Yes Yes Not reported Yes Good
Hansen (2015) [37] Three categories Yes Not applicable Yes Not applicable Yes Good
Hawkley (2020) [38] Dichotomous Yes Yes Yes Not reported Yes Good
Robinson-Whelen (2001)
[39]Three categories Yes Yes Yes Not reported No Fair
Robison (2009) (Robison
et al., 2009) [40]Dichotomous Yes Not applicable Yes Not applicable Yes Good
Wagner (2018) [41] Dichotomous Yes Not applicable Yes Not applicable Yes Good
Zwar (2020) [11] Dichotomous Yes Yes Yes No (e.g., follow-up rate from the
panel sample was 63% in wave 6) Yes Good
Int. J. Environ. Res. Public Health 2021,18, 12101 9 of 12
4. Discussion
4.1. Main Findings
In summary, twelve studies were included in our review (seven cross-sectional studies
and five longitudinal studies)—all included studies were either from North America or
Europe. The studies mainly showed an association between providing informal care and
higher loneliness levels. The overall study quality was fair to good. Such knowledge
about an association between informal caregiving and loneliness is of great importance
for targeting target individuals at risk of increased levels of loneliness, which in turn may
assist in maintaining health.
4.2. Possible Mechanisms
Rather unsurprisingly, most of the studies included found an association between the
provision of informal care and increased levels of loneliness. While only single studies
(e.g., [
43
]) identified positive health consequences of informal caregiving, most of the
studies showed harmful consequences of private care (e.g., on sleep [
44
], mental health
or life satisfaction [
7
,
8
,
44
,
45
]). These harmful consequences may contribute to feelings of
loneliness. More precisely, specific depressive symptoms such as anhedonia (inability to
experience pleasure) may reduce motivation to perform social activities [
46
]. This in turn
may result in feelings of loneliness. Furthermore, the reduced sleep quality caused by
performing informal care may also inhibit physical and cognitive activities [
44
] which can
ultimately contribute to reduced loneliness scores. Similarly, a reduced satisfaction with
life can directly contribute to social withdrawal or feeling lonely [47].
Furthermore, the association between informal caregiving and increased loneliness
may be explained by the fact that informal caregiving limits social contacts [
48
50
]. In turn,
this may enhance emotions of loneliness caused by the restricted leisure time for social
activities [51], caregiving burden or emotions such as guilt or resentment [4850].
4.3. Comparability of Studies
Several factors limit the comparability of the studies included. For example, both
loneliness and social isolation were quantified using different tools. None of the studies
examined the association between informal caregiving and objective social isolation. Infor-
mal caregiving was also assessed differently between the studies. More than half of the
studies included used cross-sectional data. Out of the five longitudinal studies, only two
used specific panel regression models. Such models are required to produce consistent
estimates [
42
]. With regard to cultural differences, the included studies exclusively referred
to data from North America or Europe.
4.4. Gaps in Knowledge and Guidance for Future Research
Our current systematic review determined various gaps in our current knowledge.
First, more longitudinal studies are needed to identify the impact of caregiving on loneliness
and social isolation. Second, more studies using data from nationally representative
samples are desirable. Third, caregiving types could be taken into consideration in future
studies (e.g., from pure supervision to performing nursing care services [
43
,
52
]). Fourth,
the relationship between caregiver and care-recipient (e.g., spousal caregiving vs. parental
caregiving or inside household caregiving vs. outside household caregiving) should be
taken into consideration. Fifth, the care-recipients should be clearly characterized (e.g.,
care recipient with cancer vs. care recipient with dementia)—if data are available. Sixth,
future research should ideally use established instruments such as the De Jong Gierveld
scale or the UCLA loneliness scale. Seventh, many more studies should also consider
the impact of caregiving on (perceived and objective) social isolation. Eighth, research
from other areas of the world (other than Europe and North America) is urgently needed.
Ninth, the underlying mechanisms in the association between caregiving and loneliness
as well as social isolation should be explored. Tenth, the association between caregiving
Int. J. Environ. Res. Public Health 2021,18, 12101 10 of 12
and loneliness/social isolation should be further explored during (or after) the COVID-19
pandemic. Eleventh, subgroup analyses (e.g., stratified by gender) are desirable.
4.5. Strengths and Limitations
This is the first systematic review regarding the association between informal caregiv-
ing and loneliness/social isolation. The important steps were conducted by two reviewers.
A meta-analysis was not performed due to study heterogeneity. Since we restricted our
search to articles published in peer-reviewed articles, some important studies may be
excluded from this review. However, it should be noted that a certain quality of the studies
is ensured by this inclusion criterion.
5. Conclusions
In conclusion, our systematic review mainly identified associations between providing
informal care and higher loneliness levels. This is of great importance in assisting informal
caregivers in avoiding loneliness, since it is associated with subsequent morbidity and
mortality. Moreover, high loneliness levels of informal caregivers may have adverse conse-
quences for informal care recipients (e.g., in terms of earlier admission to nursing homes or
decreased informal care quality). Thus, avoiding higher loneliness levels of individuals
providing informal care may, more generally, assist in improving the relationship between
informal caregivers and informal care recipients—which could be examined in future
studies. This may also contribute to successful ageing in both informal caregivers and
care recipients.
Author Contributions:
The study concept was developed by A.H., B.K. and H.-H.K. The manuscript
was drafted by A.H. and critically revised by B.K. and H.-H.K. The search strategy was developed by
A.H. and H.-H.K. Study selection, data extraction, and quality assessment were performed by A.H.
and B.K., with H.-H.K. as a third party in case of disagreements. A.H., B.K. and H.-H.K. contributed
to the interpretation of the extracted data and writing of the manuscript. All authors have read and
agreed to the published version of the manuscript.
Funding:
This research did not receive any specific grants from funding agencies in the public,
commercial, or not-for-profit sectors.
Institutional Review Board Statement: Not applicable.
Informed Consent Statement: Not applicable.
Data Availability Statement: Not applicable.
Conflicts of Interest: The authors declare no conflict of interest.
References
1.
Prieto-Flores, M.-E.; Forjaz, M.J.; Fernandez-Mayoralas, G.; Rojo-Perez, F.; Martinez-Martin, P. Factors associated with loneliness
of noninstitutionalized and institutionalized older adults. J. Aging Health 2011,23, 177–194. [CrossRef] [PubMed]
2. Victor, C.R. Loneliness in care homes: A neglected area of research? Aging Health 2012,8, 637–646. [CrossRef]
3.
Hajek, A.; Lehnert, T.; Wegener, A.; Riedel-Heller, S.G.; Koenig, H.-H. Long-Term Care Preferences Among Individuals of
Advanced Age in Germany: Results of a Population-Based Study. Gesundheitswesen (Bundesverb. Arzte Offentlichen Gesundh.)
2018
,
80, 685–692.
4.
Hajek, A.; Lehnert, T.; Wegener, A.; Riedel-Heller, S.G.; König, H.-H. Factors associated with preferences for long-term care
settings in old age: Evidence from a population-based survey in Germany. BMC Health Serv. Res. 2017,17, 156. [CrossRef]
5.
Zwar, L.; König, H.-H.; Hajek, A. Do informal caregivers expect to die earlier? A longitudinal study with a population-based
sample on subjective life expectancy of informal caregivers. Gerontology 2021,67, 467–481. [CrossRef]
6.
Bauer, J.M.; Sousa-Poza, A. Impacts of informal caregiving on caregiver employment, health, and family. J. Popul. Ageing
2015
,8,
113–145. [CrossRef]
7.
Hajek, A.; König, H.-H. Informal caregiving and subjective well-being: Evidence of a population-based longitudinal study of
older adults in Germany. J. Am. Med. Dir. Assoc. 2016,17, 300–305. [CrossRef]
8.
Kaschowitz, J.; Brandt, M. Health effects of informal caregiving across Europe: A longitudinal approach. Soc. Sci. Med.
2017
,173,
72–80. [CrossRef]
Int. J. Environ. Res. Public Health 2021,18, 12101 11 of 12
9.
Pearlin, L.I.; Mullan, J.T.; Semple, S.J.; Skaff, M.M. Caregiving and the stress process: An overview of concepts and their measures.
Gerontologist 1990,30, 583–594. [CrossRef]
10.
Gallicchio, L.; Siddiqi, N.; Langenberg, P.; Baumgarten, M. Gender differences in burden and depression among informal
caregivers of demented elders in the community. Int. J. Geriatr. Psychiatry 2002,17, 154–163. [CrossRef]
11.
Zwar, L.; König, H.-H.; Hajek, A. Psychosocial consequences of transitioning into informal caregiving in male and female
caregivers: Findings from a population-based panel study. Soc. Sci. Med. 2020,264, 113281. [CrossRef]
12.
Brodaty, H.; Hadzi-Pavlovic, D. Psychosocial effects on carers of living with persons with dementia. Aust. N. Z. J. Psychiatry
1990
,
24, 351–361. [CrossRef] [PubMed]
13. Curvers, N.; Pavlova, M.; Hajema, K.; Groot, W.; Angeli, F. Social participation among older adults (55+): Results of a survey in
the region of South Limburg in the Netherlands. Health Soc. Care Community 2018,26, e85–e93. [CrossRef]
14.
Hajek, A.; König, H.-H. Impact of informal caregiving on loneliness and satisfaction with leisure-time activities. Findings of a
population-based longitudinal study in germany. Aging Ment. Health 2019,23, 1539–1545. [CrossRef]
15.
Stoltz, P.; Uden, G.; Willman, A. Support for family carers who care for an elderly person at home–a systematic literature review.
Scand. J. Caring Sci. 2004,18, 111–119. [CrossRef]
16.
Schüz, B.; Czerniawski, A.; Davie, N.; Miller, L.; Quinn, M.G.; King, C.; Carr, A.; Elliott, K.E.J.; Robinson, A.; Scott, J.L. Leisure
Time Activities and Mental Health in Informal Dementia Caregivers. Appl. Psychol. Health Well-Being
2015
,7, 230–248. [CrossRef]
[PubMed]
17.
Hajek, A.; König, H.-H. Do loneliness and perceived social isolation reduce expected longevity and increase the frequency of
dealing with death and dying? longitudinal findings based on a nationally representative sample. J. Am. Med. Dir. Assoc.
2021
,
22, 1720–1725.e5. [CrossRef] [PubMed]
18.
Hajek, A.; König, H.H. Do lonely and socially isolated individuals think they die earlier? The link between loneliness, social
isolation and expectations of longevity based on a nationally representative sample. Psychogeriatrics
2021
,21, 571–576. [CrossRef]
19.
Rico-Uribe, L.A.; Caballero, F.F.; Martín-María, N.; Cabello, M.; Ayuso-Mateos, J.L.; Miret, M. Association of loneliness with
all-cause mortality: A meta-analysis. PLoS ONE 2018,13, e0190033. [CrossRef]
20.
Valtorta, N.K.; Kanaan, M.; Gilbody, S.; Ronzi, S.; Hanratty, B. Loneliness and social isolation as risk factors for coronary heart
disease and stroke: Systematic review and meta-analysis of longitudinal observational studies. Heart
2016
,102, 1009–1016.
[CrossRef]
21.
Victor, C.; Scambler, S.; Bond, J.; Bowling, A. Being alone in later life: Loneliness, social isolation and living alone. Rev. Clin.
Gerontol. 2000,10, 407–417. [CrossRef]
22. Petersen, N.; König, H.-H.; Hajek, A. The link between falls, social isolation and loneliness: A systematic review. Arch. Gerontol.
Geriatr. 2020,88, 104020. [CrossRef] [PubMed]
23.
Wenger, G.C.; Davies, R.; Shahtahmasebi, S.; Scott, A. Social isolation and loneliness in old age: Review and model refinement.
Ageing Soc. 1996,16, 333–358. [CrossRef]
24.
Bunt, S.; Steverink, N.; Olthof, J.; van der Schans, C.; Hobbelen, J. Social frailty in older adults: A scoping review. Eur. J. Ageing
2017,14, 323–334. [CrossRef] [PubMed]
25.
Moher, D.; Liberati, A.; Tetzlaff, J.; Altman, D.G.; Group, P. Preferred reporting items for systematic reviews and meta-analyses:
The PRISMA statement. PLoS Med. 2009,6, e1000097. [CrossRef] [PubMed]
26.
Hajek, A.; Kretzler, B.; König, H.-H. Informal caregiving for adults, loneliness and social isolation: A study protocol for a
systematic review. BMJ Open 2021,11, e044902. [CrossRef]
27.
Quirke, E.; König, H.-H.; Hajek, A. Association between caring for grandchildren and feelings of loneliness, social isolation and
social network size: A cross-sectional study of community dwelling adults in Germany. BMJ Open 2019,9, e029605. [CrossRef]
28.
Quirke, E.; König, H.-H.; Hajek, A. What are the social consequences of beginning or ceasing to care for grandchildren? Evidence
from an asymmetric fixed effects analysis of community dwelling adults in Germany. Aging Ment. Health
2021
,25, 969–975.
[CrossRef]
29.
National Heart, Lung, and Blood Institute. Study Quality Assessment Tools. Available online: https://www.nhlbi.nih.gov/
health-topics/study-quality-assessment-tools (accessed on 17 November 2021).
30.
Hajek, A.; Kretzler, B.; König, H.-H. Multimorbidity, loneliness, and social isolation. A systematic review. Int. J. Environ. Res.
Public Health 2020,17, 8688. [CrossRef]
31.
Xiong, C.; Biscardi, M.; Astell, A.; Nalder, E.; Cameron, J.I.; Mihailidis, A.; Colantonio, A. Sex and gender differences in caregiving
burden experienced by family caregivers of persons with dementia: A systematic review. PLoS ONE
2020
,15, e0231848. [CrossRef]
32.
Beach, S.R.; Schulz, R.; Donovan, H.; Rosland, A.-M. Family Caregiving During the COVID-19 Pandemic. Gerontologist
2021
,61,
650–660. [CrossRef]
33.
Beeson, R.A. Loneliness and depression in spousal caregivers of those with Alzheimer’s disease versus non-caregiving spouses.
Arch. Psychiatr. Nurs. 2003,17, 135–143. [CrossRef]
34.
Brandt, M.; Garten, C.; Grates, M.; Kaschowitz, J.; Quashie, N.; Schmitz, A. Veränderungen von Wohlbefinden und privater
Unterstützung für Ältere: Ein Blick auf die Auswirkungen der COVID-19-Pandemie im Frühsommer 2020. Z. Gerontol. Geriatr.
2021,54, 240–246. [CrossRef] [PubMed]
35.
Ekwall, A.K.; Sivberg, B.; Hallberg, I.R. Loneliness as a predictor of quality of life among older caregivers. J. Adv. Nurs.
2005
,49,
23–32. [CrossRef] [PubMed]
Int. J. Environ. Res. Public Health 2021,18, 12101 12 of 12
36.
Gallagher, S.; Wetherell, M.A. Risk of depression in family caregivers: Unintended consequence of COVID-19. BJPsych Open
2020
,
6, e119. [CrossRef] [PubMed]
37.
Hansen, T.; Slagsvold, B. Feeling the squeeze? The effects of combining work and informal caregiving on psychological well-being.
Eur. J. Ageing 2015,12, 51–60. [CrossRef] [PubMed]
38.
Hawkley, L.; Zheng, B.; Hedberg, E.; Huisingh-Scheetz, M.; Waite, L. Cognitive limitations in older adults receiving care reduces
well-being among spouse caregivers. Psychol. Aging 2020,35, 28. [CrossRef] [PubMed]
39.
Robinson-Whelen, S.; Tada, Y.; MacCallum, R.C.; McGuire, L.; Kiecolt-Glaser, J.K. Long-term caregiving: What happens when it
ends? J. Abnorm. Psychol. 2001,110, 573. [CrossRef]
40.
Robison, J.; Fortinsky, R.; Kleppinger, A.; Shugrue, N.; Porter, M. A broader view of family caregiving: Effects of caregiving and
caregiver conditions on depressive symptoms, health, work, and social isolation. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci.
2009
,64,
788–798. [CrossRef]
41.
Wagner, M.; Brandt, M. Long-term care provision and the well-being of spousal caregivers: An analysis of 138 European regions.
J. Gerontol. Ser. B 2018,73, e24–e34. [CrossRef]
42. Cameron, A.C.; Trivedi, P.K. Microeconometrics: Methods and Applications; Cambridge University Press: Cambridge, UK, 2005.
43.
Zwar, L.; König, H.-H.; Hajek, A. The impact of different types of informal caregiving on cognitive functioning of older caregivers:
Evidence from a longitudinal, population-based study in Germany. Soc. Sci. Med. 2018,214, 12–19. [CrossRef]
44.
Hajek, A.; König, H.-H. How does beginning or ceasing of informal caregiving of individuals in poor health influence sleep
quality? Findings from a nationally representative longitudinal study. Aging Ment. Health 2020, 1–6. [CrossRef] [PubMed]
45. Hajek, A.; König, H.-H. The relation between personality, informal caregiving, life satisfaction and health-related quality of life:
Evidence of a longitudinal study. Qual. Life Res. 2018,27, 1249–1256. [CrossRef]
46.
Hajek, A.; Brettschneider, C.; Eisele, M.; Lühmann, D.; Mamone, S.; Wiese, B.; Weyerer, S.; Werle, J.; Fuchs, A.; Pentzek, M.; et al.
Disentangling the complex relation of disability and depressive symptoms in old age–findings of a multicenter prospective cohort
study in Germany. Int. Psychogeriatr. 2017,29, 885–895. [CrossRef] [PubMed]
47.
Hill, M.M.S.; Yorgason, J.B.; Nelson, L.J.; Miller, R.B. Social withdrawal and psychological well-being in later life: Does marital
status matter? Aging Ment. Health 2021. [CrossRef] [PubMed]
48.
Rokach, A.; Miller, Y.; Schick, S.; Bercovitch, M. Coping with loneliness: Caregivers of cancer patients. Clin. Nurs. Stud.
2014
,2,
42–50. [CrossRef]
49.
Rokach, A.; Rosenstreich, E.; Brill, S.; Aryeh, I.G. Caregivers of chronic pain patients: Their loneliness and burden. Nurs. Palliat.
Care 2016,1, 111–117. [CrossRef]
50.
Rokach, A.; Rosenstreich, E.; Brill, S.; Aryeh, I.G. People with chronic pain and caregivers: Experiencing loneliness and coping
with it. Curr. Psychol. 2018,37, 886–893. [CrossRef]
51.
Ory, M.G.; Hoffman, R.R., III; Yee, J.L.; Tennstedt, S.; Schulz, R. Prevalence and impact of caregiving: A detailed comparison
between dementia and nondementia caregivers. Gerontologist 1999,39, 177–186. [CrossRef]
52.
Zwar, L.; König, H.-H.; Hajek, A. Consequences of different types of informal caregiving for mental, self-rated, and physical
health: Longitudinal findings from the German Ageing Survey. Qual. Life Res. 2018,27, 2667–2679. [CrossRef]
... On the other hand, this study points out the improvement in care overload. This coincides with other studies that indicate that community interventions improve the quality of life in caregivers, either through improvement in the autonomy of people with mental disorders or directly through the reduction of symptoms in caregivers (Hajek et al., 2021). This is why there is a need to implement policies and programs to support informal caregivers and reduce their workload. ...
... This is why there is a need to implement policies and programs to support informal caregivers and reduce their workload. These policies and programs may include measures to improve access to health care services and emotional support services (Hajek et al., 2021), as noted in the present research. ...
Article
Full-text available
The objective of the present study was to evaluate the effectiveness of mutual help groups in continuity of care, loneliness and psychosocial disability in a Colombian context. For this, a quasi-experimental design is used, with pre- and post-intervention assessments due to non-randomized participant allocation. The study involved 131 individuals with mental disorders. The Psychosocial Disability Scale, The Alberta Scale of Continuity of Services in Mental Health, the UCLA Scale and the Zarit Caregiver Burden Scale were employed. The intervention was based on the core components of mutual aid groups. Significant differences (p < 0.001) were observed for the study variables, particularly in Loneliness, Continuity of Care, and various domains of psychosocial disability. A large effect size was found for these variables after the intervention. Most variables exhibited a moderate to large effect. This study demonstrates the effectiveness of mutual groups facilitated by mental health personnel at the primary care level.
... FCGs of cancer patients often experience changes in both the quantity and quality of social relations and interactions while caregiving [5,6]. An increase in social obstacles can result in feelings of loneliness, leading to mental and physical health consequences, including fatigue, sleep disturbance, depression, anxiety, cognitive impairment, and upregulated proinflammatory gene expression [2, [7][8][9]. ...
Article
Full-text available
Purpose Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. Methods We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. Results We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. Conclusion The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.
... Based on the result of this study, informal caregiving is very common, and in our opinion, it is a positive matter that family and friends of patients want to take of their loved ones. Nevertheless, studies have shown that providing informal care wears on the caregivers with associations of increased morbidity, social isolation, and reduced quality of life [38]. This is, of course, not ideal, as caregivers should not become sick or worn out due to providing care for a loved one. ...
Article
Full-text available
Background Hip fracture is very common and it has life-shattering consequences for older persons. After discharge the older persons need help with even basic everyday activities from formal and informal caregivers. In Scandinavia formal care are well-developed however the presence of informal caregivers likely reflect on the amount of formal care and wears on the informal caregivers. This study explore how often and how much informal care (IC) older persons receive after hip fracture. Method We contacted 244 community-dwelling older persons every two weeks the first twelve weeks after discharge after hip fracture and asked them if they received care from family and/or friends and how much. We used non-parametric statistics and level of significance was 95%. Results The proportion of older persons receiving IC was 90% and the median amount of IC was 32 hours (IQR 14-66). The number of older persons who received IC was highest the first four weeks after discharge and so was the amount of hours of IC. The older persons that were high-dependence on IC received a median of 66 (IQR 46-107) hours compared to the low-dependent of 11 hours (IQR 2-20). Conclusion IC is very frequent, especially the first two to four weeks after discharge. The median IC was 32 hours from discharge to the 12-week follow-up. However, this figure tended to rise for persons with, among other, reduced functionality and those residing with a partner. Implications With respect to local differences, the findings in this study are likely applicable to other Scandinavian countries. We strongly suggest that the variation in older person need for informal caregiver be given consideration in the prioritisation of resources. Trial registration This prospective cohort study of informal care, was part of a cluster-randomised stepped-wedge clinical controlled trial. Written consent was obtained required by regional ethics committee S-20200070. Data was collected in accordance with the Danish Data Protection Agency (20-21854).
... Demgegenüber haben die Live-Ins Sehnsucht nach Zuhause (im Sinne der Heimat) und fühlen sich in der sprachlich wie kulturell fremden Umgebung ebenfalls einsam (Baldassar et al. 2017). Die Pflegenden An-und Zugehörigen wiederum erfahren durch die Pflegeverantwortung und die damit verbundenen Einschränkungen ihrer eigenen sozialen Kontakte und ihres reduzierten Aufenthaltsradius Einsamkeit (Hajek et al. 2021). Diese Einsamkeit auf Seiten aller Beteiligten hat einen appellativen Charakter für erhöhte gegenseitige Achtsamkeit. ...
Article
Full-text available
Migrant live-in care workers are a main pillar of long-term care in many countries, including Germany. Several studies examining their working and living conditions reveal serious problems. However, a key element of live-in arrangements, namely the relationship between the individuals involved, has not yet been systematically investigated from an ethical perspective. Building on previous socioempirical work that explored and set out the meaning of “care networks”, we start from the premise that live-ins are embedded in a network of relationships which are essential for their employment and living situation. The theoretical analysis draws on a network approach that takes care–ethical considerations into account. Using Joan Tronto’s four care–ethical phases, existing dependencies are described and reflected upon using the corresponding four care–ethical dimensions. The central questions are how dependencies in the live-in arrangement can be characterised based on the existing body of empirical studies and with a focus on the elements of power, dependency and trust in the ethical reflection on care. Based on this analysis, it becomes apparent that the ambivalence resulting from the simultaneity of different forms of asymmetry and mutual dependence is omnipresent in live-in arrangements and gives rise to seemingly contradictory forms of relationships and emotions. Responsibilities are vague and are constantly renegotiated on the basis of implicit assumptions and problematic role expectations and are also assigned without negotiation. In the future, it will not only be necessary to better understand and clarify responsibilities at the micro level of the individual care arrangement from the various positions and roles and with a view to the changing processes of caring for another, but also to address the pressing ethical questions and problems in live-in arrangements at the meso and macro levels—enriched by care–ethical perspectives.
... Social challenges are another significant aspect of informal caregiving. Caregivers often experience reduced social participation and increased social isolation and loneliness [11]. Moreover, caregivers frequently encounter difficulties in balancing their caregiving duties with other responsibilities, such as work, household tasks, and child-rearing, which can contribute to role strain and conflict as economic challenges [12][13]. ...
Article
Full-text available
Background Becoming a caregiver can be a transformative journey with profound, multifaceted implications for well-being. However, existing research predominantly emphasizes the negative aspects of caregiving, paying less attention to the positive sides. This study aims to explore the impact of transitioning into a caregiving role on various well-being indicators, such as negative hedonic, positive hedonic, eudaimonic, and social well-being. Methods We use Norwegian panel data (2019–2021) and employ a combination of nearest-neighbour matching and a difference-in-differences approach to analyse well-being trajectories among new caregivers (n = 304) and non-caregivers (n = 7822). We assess ten items capturing the dimensions of negative hedonic (anxiousness, sadness, and worriedness), positive hedonic (happiness and life satisfaction), eudaimonic (contributing to others’ happiness, engagement, and meaning), and social (strong social relations and loneliness) well-being. Results Our results show a general increase in negative hedonic well-being and a decline in positive hedonic well-being for new caregivers. These impacts are larger for caregivers providing daily care, compared to those providing weekly and monthly care, and for those providing care inside rather than outside their own household. We observe only minor differences regarding gender and age. Interestingly, we also notice neutral or beneficial changes for eudaimonic aspects of well-being; of note, caregivers generally experience an increased sense of contributing to others’ happiness. Conclusion Our study reveals that adopting a caregiving role often leads to significant psychosocial challenges, especially in intensive caregiving situations. However, it also uncovers potential positive influences on eudaimonic aspects of well-being. Future research should explore underlying explanatory mechanisms, to inform strategies that enhance caregivers’ well-being.
... A large social support network and reciprocity within relationships are protective factors for caregivers' emotional health [4]. Some studies highlight the importance of avoiding loneliness, which may be associated with later morbidity and mortality in caregivers and may also have adverse consequences for care recipients [58]. ...
Article
Full-text available
Given today's rapidly ageing society, family members providing informal care to dependent older adults face ever-increasing challenges. The aim of this study was to describe the affective impact on older adults over 70 years of age caring for a dependent older person at home. A qualitative study was designed from a phenomenological perspective. Thirteen in-depth interviews were conducted with caregivers aged 70 or older. A content analysis of the interviews was carried out in five stages. Three themes were identified: "Emotions", "Feelings", and "Looking to the future". Caregivers express negative emotions (sadness, anger, and fear) and feelings of social and emotional isolation, and they feel abandoned by health professionals, family, and friends. In conclusion, prolonged caregiving by older adults has a negative affective impact and creates uncertainty about the future. There is a need to devise social and healthcare policies and actions, creating social support networks to improve their health and emotional wellbeing.
... En el presente estudio vemos que la presencia de síntomas depresivos predice un mayor puntaje de soledad. La literatura sugiere que la depresión en población general y en cuidadores es diferente cuando se presenta en conjunto con sentimientos de soledad porque esta combinación puede llevar a un mayor agotamiento de la motivación (19,20) . ...
Article
Full-text available
ANTECEDENTES Y OBJETIVO: La soledad es un factor de riesgo para el desarrollo de enfermedades físicas y mentales, causando disminución en la calidad de vida y un aumento de la mortalidad. El objetivo de este artículo fue determinar los factores predictores de soledad en personas cuidadoras informales de personas con demencia dentro de un contexto de crisis como fue la pandemia por COVID-19 con el fin de identificar e intervenir en dichos factores desde la atención primaria de salud. DISEÑO Y METODOLOGÍA: Este es un estudio cuantitativo de carácter transversal para el cual se realizó un muestreo de conveniencia no probabilístico. Ciento noventa y cinco personas cuidadores informales, por medio de una encuesta en línea, respondieron preguntas sociodemográficas y clínicas sobre ellos mismos (soledad, síntomas ansiosos y depresivos, actividades físicas y mentales, sobrecarga y apoyo psicosocial) y sobre la persona con demencia (cambios en la memoria y en los síntomas conductuales y psicológicos). Los datos fueron recolectados durante 6 meses y se hicieron análisis descriptivos, de correlación y de regresión. RESULTADOS: La baja escolaridad, disminución del ingreso económico, no mantener durante la pandemia las actividades físicas y mentales y la sobrecarga en el cuidador se relacionaron significativamente con mayor soledad, mientras que los factores predictores de la misma fueron la presencia de sintomatología ansiosa depresiva, la baja percepción de apoyo psicosocial y la convivencia de la persona cuidadora con la persona con demencia. CONCLUSIÓN: El riesgo de desarrollar soledad en los cuidadores informales de personas con demencia es alto. Los profesionales de enfermería, particularmente en atención primaria, deben estar alertas a identificar a aquellos cuidadores que conviven con la persona con demencia, que presentan síntomas ansiosos y depresivos y que reportan una baja percepción de apoyo psicosocial dado que son más vulnerables de experimentar soledad percibida.
... Those causes could be, for example, educational level, morbidity level or social factors (e.g. social engagement, owning a pet, grandchild care, private care receipt or spousal caregiving) [55][56][57][58]. Moreover, cultural differences, such as differences between individualistic and collectivistic societies, may be a source of heterogeneity and thus should be further explored [59]. ...
Article
Full-text available
Purpose Conducting a systematic review, meta-analysis and meta-regression regarding the prevalence and correlates of loneliness and social isolation amongst the community-dwelling and institutionalised oldest old (80 years and over). Methods Three electronic databases (PsycINFO, CINAHL and Medline) were searched, including studies from inception to January 5, 2023. An additional hand search was conducted by checking included studies’ references, and studies that cited included studies. We included observational studies describing the prevalence and (ideally) the correlates of loneliness, or social isolation, amongst individuals aged 80 years and over. Study design, operationalization of loneliness and social isolation, statistical analysis, characteristics of the sample and key findings were extracted. A random-effects meta-analysis was conducted. Results We included 22 studies. The estimated prevalence of severe loneliness was 27.1% (95% CI: 23.7–30.4%). The estimated prevalence of moderate loneliness equalled 32.1% (95% CI: 15.8–48.4%). Moreover, the estimated prevalence of social isolation was 33.6% (95% CI: 28.9–38.2%). There was heterogeneity between the studies. Egger tests suggest the absence of potential publication bias. Meta-regressions showed that the heterogeneity could neither be attributed to the assessment of loneliness nor to the continent where the study was conducted. Conclusion Loneliness and social isolation are important problems in the oldest old. In this age group, studies are required, in particular from regions outside Europe. Additionally, longitudinal studies are required to investigate the determinants of loneliness and social isolation amongst individuals aged 80 years and over. Studies using more sophisticated tools to quantify loneliness and social isolation are required.
Article
Objectives This systematic review and meta‐analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. Methods We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta‐analysis. Subgroup analyses and meta‐regression were employed to explore potential moderating variables and heterogeneity. Results The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%–59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%–47.6%). Subgroup analyses and meta‐regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. Conclusions This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.
Article
Full-text available
Background Loneliness and social isolation both have been linked to morbidity and mortality. However, there is a lack of studies investigating whether these factors are associated with expectations of longevity. Therefore, we aimed to clarify this association. Methods Cross‐sectional data were taken from a nationally representative sample of middle‐aged and older individuals (analytical sample, n = 4857). Well‐established scales were used to measure loneliness and social isolation. Equally to other large cohort studies, expectations of longevity were assessed using the question ‘What age do you think you will live to?’ It was adjusted for various socioeconomic and health‐related factors. Results After adjusting for various socioeconomic and health‐related covariates, multiple linear regressions showed that both loneliness (total sample: β = −0.97, P < 0.001; men: β = −1.04, P < 0.001; women: β = −0.97, P < 0.01) and social isolation (total sample: β = −0.93, P < 0.001; men: β = −0.86, P < 0.001; women: β = −0.91, P < 0.01) were associated with lower expectations of longevity in the total sample and stratified by gender. Furthermore, lower expectations of longevity were consistently associated with younger age (β = 0.32, P < 0.001), being retired (β = −2.39, P < 0.001), not being employed (β = −1.97, P < 0.001), worse self‐rated health (β = −1.31, P < 0.001), and a higher number of chronic illnesses (β = −0.38, P < 0.001) in the total sample, and in both genders. Conclusions Even after adjusting for various covariates, findings still indicate an association between both loneliness and social isolation and markedly lower expectations of longevity. Future studies based on longitudinal data are required to gain further insights.
Article
Full-text available
Introduction Some empirical studies have identified an association between informal caregiving for adults and loneliness or social isolation. However, there is a lack of a review systematically synthesising empirical studies that have examined these associations. Hence, the aim of this systematic review is to provide an overview of evidence from observational studies. Methods and analysis Three electronic databases (Medline, PsycINFO, CINAHL) will be searched (presumably in May 2021), and reference lists of included studies will be searched manually. Cross-sectional and longitudinal observational studies examining the association between informal caregiving for adults and loneliness or social isolation will be included. Studies focusing on grandchildren care or private care for chronically ill children will be excluded. Data extraction will include information related to study design, definition and measurement of informal caregiving, loneliness and social isolation, sample characteristics, statistical analysis and main results. The quality of the studies will be evaluated using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Two reviewers will perform the selection of studies, data extraction and assessment of study quality. Figures and tables will be used to summarise and report results. A narrative summary of the findings will be provided. If data permit, a meta-analysis will be conducted. Ethics and dissemination No primary data will be collected. Therefore, approval by an ethics committee is not required. We plan to publish our findings in a peer-reviewed journal. PROSPERO registration number CRD42020193099.
Article
Full-text available
Introduction: Subjective life expectancy is a good predictor of health and could therefore be a relevant factor in the informal caregiving context. However, no research has been conducted on the perception of life expectancy by informal caregivers. This is the first study that examines the association between transitioning into, and out of, informal caregiving, and subjective life expectancy, and the relevance of employment status and gender for these associations. Methods: A longitudinal study was conducted with data from the German Ageing Survey (waves 2008, 2011, 2014, and 2017). Up to 20,774 observations pooled over all waves were included in the main models. In total, 1,219 transitions into and 1,198 transitions out of informal caregiving were observed. Fixed effects (FE) regression analysis was used. Moderator and stratified analyses were conducted with gender and employment status used as moderator variables and to stratify the sample. Sociodemographic information, health, and lifestyle factors were controlled for. Results: Results of adjusted FE regression analyses indicated a significant reduction of subjective life expectancy when transitioning into informal caregiving. No significant change was found when transitioning out of informal caregiving. Subjective life expectancy was significantly decreased when employed individuals transitioned into informal caregiving and significantly increased when they transitioned out of caregiving. Findings for women transitioning into informal caregiving indicated a significant decrease in subjective life expectancy, while no significant change was found among men. Conclusion: The study's findings indicate that informal caregivers, female and employed caregivers in particular, perceive informal care provision as dangerous for their longevity and expect to die earlier when transitioning into informal caregiving. Thus, supportive interventions for informal caregivers, particularly employed and female informal caregivers, are recommended.
Article
Full-text available
Background The pilot study “Health and Support in Times of Corona” (TU Dortmund University) collected data on support and well-being of individuals aged 40 plus years in the light of the first wave of the COVID-19 pandemic from May to July 2020.Objective The aim was to study the social and mental effects of the pandemic. We focused on individuals living in private households aged 40 years and older. Participants were asked about pandemic-related changes in receiving and providing support (e.g. personal care, help with household chores), problems arising in taking care of older persons and changes in well-being.Material and methodsWe conducted descriptive and multivariate analyses to show how support changed, problems with support came up and well-being changed in the light of the pandemic and how all this was related.ResultsDue to the pandemic older respondents in particular were no longer able to provide the necessary support for others. Especially women reported problems in taking care of older individuals. We found a decrease in well-being for all respondents but most significantly for women and individuals aged 80 years and older. Moreover, problems in the provision of care due to the pandemic and lower well-being were clearly linked.Conclusion Our study showed significant changes in support patterns and well-being due to the COVID-19 pandemic. A substantial part of the respondents reported more loneliness and lower life satisfaction compared to before the pandemic, especially women supporting others. In these pandemic times, informal caregiving is severely hampered. Future pandemic-related measures should be carefully planned bearing such issues in mind.
Article
Full-text available
No systematic review has appeared so far synthesizing the evidence regarding multimorbidity and loneliness, social isolation, or social frailty. Consequently, our aim was to fill this gap. Three electronic databases (PubMed, PsycINFO, and CINAHL) were searched in our study. Observational studies examining the link between multimorbidity and loneliness, social isolation, and social frailty were included, whereas disease-specific samples were excluded. Data extraction included methods, characteristics of the sample, and the main results. A quality assessment was conducted. Two reviewers performed the study selection, data extraction, and quality assessment. In sum, eight studies were included in the final synthesis. Some cross-sectional and longitudinal studies point to an association between multimorbidity and increased levels of loneliness. However, the associations between multimorbidity and social isolation as well as social frailty remain largely underexplored. The quality of the studies included was rather high. In conclusion, most of the included studies showed a link between multimorbidity and increased loneliness. However, there is a lack of studies examining the association between multimorbidity and social isolation as well as social frailty. Future studies are required to shed light on these important associations. This is particularly important in times of the COVID-19 pandemic.
Article
Full-text available
Background Coronavirus disease 2019 (COVID-19) is likely to exacerbate the symptoms of poor mental health in family caregivers. Aims To investigate whether rates of depressive symptomatology increased in caregivers during COVID-19 and whether the unintended consequences of health protective measures, i.e., social isolation, exacerbated this risk. Another aim was to see if caregivers accessed any online/phone psychological support during COVID. Method Data (1349 caregivers; 6178 non-caregivers) was extracted from Understanding Society, a UK population-level data-set. The General Health Questionnaire cut-off scores identified those who are likely to have depression. Results After adjustment for confounding caregivers had a higher risk of having depressive symptoms compared with non-caregivers, odds ratio (OR) = 1.22 (95% CI 1.05–1.40, P = 0.008) evidenced by higher levels of depression pre-COVID-19 (16.7% caregivers v. 12.1% non-caregivers) and during the COVID-19 pandemic (21.6% caregivers v. 17.9% non-caregivers), respectively. Further, higher levels of loneliness increased the risk of depression symptoms almost four-fold in caregivers, OR = 3.85 (95% 95% CI 3.08–4.85, P < 0.001), whereas accessing therapy attenuated the risk of depression (43%). A total of 60% of caregivers with depression symptoms reported not accessing any therapeutic support (for example online or face to face) during the COVID-19 pandemic. Conclusions COVID-19 has had a negative impact on family caregivers’ mental health with loneliness a significant contributor to depressive symptomatology. However, despite these detriments in mental health, the majority of caregivers do not access any online or phone psychiatric support. Finally, psychiatric services and healthcare professionals should aim to focus on reducing feelings of loneliness to support at-risk caregivers.
Article
Objectives: Personality researchers have found that dispositional traits are typically stabile over the life course, but shyness is one trait that has rarely been examined in later life. Shyness as a global trait has been linked negatively to multiple psychological indices of childhood well-being, including loneliness. Despite the fact that older adults may already be at risk for experiencing heightened loneliness, regret, or decreased fulfillment, research has not assessed these experiences in relation to personality in later life. In the past few decades, research on social withdrawal has moved beyond treating shyness as a global trait and started to examine the multiple motivations behind socially withdrawn behavior. Method: Employing data from 309 older participants of the Huntsman Senior Games, the current study used regression analyses to examine the potential relations between three forms of withdrawal (shyness, avoidance, and unsociability) and loneliness, regret, and fulfillment in later life. Results and Conclusion: Results indicated that shyness, avoidance, and unsociability, respectively, were significantly associated with increased loneliness and regret, and decreased fulfillment. Further, marital status (married, divorced, widowed) moderated links between withdrawal and psychological indices of well-being in later life.
Article
Objectives Loneliness and social isolation are important factors for morbidity and mortality. However, little is known about whether increases in loneliness and perceived social isolation contribute to decreased expectations of longevity and an increased frequency of dealing with death and dying. Consequently, our aim was to clarify these relationships. Design Longitudinal data were derived from a nationally representative sample of individuals ≥40 years (analytical sample, n=7952 observations). Setting and Participants Community-dwelling individuals aged ≥40 years. Methods Loneliness and perceived social isolation were both measured using well-established tools. In accordance with other large cohort studies, the expectations of longevity were assessed using the question “What age do you think you will live to?” Moreover, the frequency of dealing with death and dying (from 1 = never to 5 = very often) served as outcome measure. In regression analysis, it was adjusted for several sociodemographic and health-related factors. Results Fixed effects regressions showed that both increases in loneliness (β = –0.99, P < .001) and in perceived social isolation (β = –0.59, P < .05) were associated with decreases in expectations of longevity. Furthermore, both loneliness [incidence rate ratio (IRR) = 1.02, P < .05] and perceived social isolation (IRR = 1.02, P < .05) were associated with increases in the frequency of dealing with death and dying. Conclusions and Implications Beyond the impact of various covariates, findings still point to a longitudinal association between both perceived social isolation and loneliness and lower expectations of longevity as well as an increased frequency of dealing with death and dying. Efforts in reducing loneliness and perceived social isolation can contribute to increased expected longevity and a decreased frequency of dealing with death and dying which ultimately can contribute to longevity in older age.
Article
Background and objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively impacted persons with existing chronic health conditions. The pandemic also has the potential to exacerbate stresses of family caregiving. We compare family caregivers with non-caregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research design and methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 non-caregivers from April-May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation; and financial well-being); and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured socio-demographic; caregiving contextual variables; and COVID-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for socio-demographics, family caregivers reported higher anxiety; depression; fatigue; sleep disturbance; lower social participation; lower financial well-being; increased food insecurity (all p < .01) and increased financial worries (p=.01). Caregivers who reported more COVID-related caregiver stressors and disruptions reported more adverse outcomes (all p < .01). In addition, caregivers who were female, younger, lower income, providing both personal / medical care, and providing care for cognitive / behavioral / emotional problems reported more adverse outcomes. Discussion and implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress-health process models. Family caregivers should receive increased support during this serious public health crisis.
Article
Background Various cross-sectional studies exist examining the association between informal caregiving and sleep quality. However, there is a lack of longitudinal studies investigating whether beginning and ceasing of informal caregiving is associated with changes in sleep quality. Aims Investigating whether beginning and ceasing of informal caregiving of individuals in poor health is associated with changes in sleep quality in both sexes. Methods Data were taken from a nationally representative sample of individuals ≥ 40 years in Germany from 2008 to 2017. In our analytical sample, n equaled 22,910 observations. Based on the Pittsburgh Sleep Quality Index, the sleep quality was assessed by the difficulties falling asleep during the last month, difficulties with sleep because of waking up during the last month (in both cases: (from 1 = not during the last month to 4 = three or more times a week) and the overall assessment of sleep quality during the last month (from 1 = very good to 4 = very bad). Results Asymmetric fixed effects regressions showed that in men beginning to provide informal care was associated with decreased overall sleep quality (β=-.09 (95% CI: −.15 – −.03), p<.01) and an increased likelihood of difficulties because of waking up (OR: 1.54 (95% CI: 1.07–2.20), p<.05), whereas ceasing to provide informal care was not associated with the outcome measures (both, in women and in men). Discussion Starting informal caregiving had deleterious effects on sleep quality in men. Conclusions Efforts to assist men in maintaining sleep quality may be beneficial.