Mental health of informal caregivers

Abstract

The aging society is facing an important public health problem related to provision of care to older and dependent people. The care provided on a daily basis includes a range of different social and health services, as well as the provision of emotional support to people who are not capable to function independently. Activities important for day by day functioning, such as bathing, dressing, feeding, shopping and health monitoring are only part of the responsibilities and obligations that the "invisible workforce", i.e. informal caregivers, must provide. Even though, regardless of the heavy price informal caregivers often pay with their economic and health status, they still remain a blind spot in public policies. An informal caregiver provides ongoing care and assistance, without receiving payment, to family members and friends who need support due to physical, cognitive or mental problems. Depression is one of the most common problems experienced by informal caregivers and it is estimated that a large number, in the range of 40% to about 70% of all informal caregivers have depression symptoms. The COVID-19 pandemic has certainly left its mark on physical health, however, as the pandemic moves forward, it has began to show an ever increasing impact on the mental health of people around the world, where informal caregivers fall into a particularly vulnerable category. Particularly those informal caregivers who provide long-term help to a member of the family, became of an increased risk of emotional and physical exhaustion due to the burden of care, reduced services, as well as the relocation to consulting by telephone and the digital sphere. While some some of them managed to cope with stress and became resilient, others did not and the increasing psychological pressure led to the development of depression symptoms.

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podmladak
Mini-review article
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Youth
Rajović T. et al. MedPodml 2022, 73(3):8-11 doi:10.5937/mp73-37522
© Editorial board: podmladak.med.bg@gmail.com
e authors declare no conicts of interest.
MENTAL HEALTH OF INFORMAL CAREGIVERS
MENTALNO ZDRAVLJE NEFORMALNIH NEGOVATELJA
Tatjana Rajović1, Nataša Milić1
1 Univerzitet u Beogradu, Medicinski fakultet, Institut za medicinsku statistiku i informatiku, Beograd, Srbija
Correspondence: tanja.rajovic63@gmail.com
Abstract
The aging society is facing an important public health problem related to provision of
care to older and dependent people. The care provided on a daily basis includes a range
of different social and health services, as well as the provision of emotional support to
people who are not capable to function independently. Activities important for day by
day functioning, such as bathing, dressing, feeding, shopping and health monitoring are
only part of the responsibilities and obligations that the “invisible workforce”, i.e. informal
caregivers, must provide. Even though, regardless of the heavy price informal caregivers
often pay with their economic and health status, they still remain a blind spot in public
policies. An informal caregiver provides ongoing care and assistance, without receiving
payment, to family members and friends who need support due to physical, cognitive
or mental problems. Depression is one of the most common problems experienced by
informal caregivers and it is estimated that a large number, in the range of 40% to about
70% of all informal caregivers have depression symptoms. The COVID-19 pandemic has
certainly left its mark on physical health, however, as the pandemic moves forward, it has
began to show an ever increasing impact on the mental health of people around the world,
where informal caregivers fall into a particularly vulnerable category. Particularly those
informal caregivers who provide long-term help to a member of the family, became of an
increased risk of emotional and physical exhaustion due to the burden of care, reduced
services, as well as the relocation to consulting by telephone and the digital sphere. While
some some of them managed to cope with stress and became resilient, others did not and
the increasing psychological pressure led to the development of depression symptoms.
Keywords:
informal caregiver,
mental health,
COVID-19

Medicinski podmladak / Medical Youth
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Rajović T. et al. Mental health of informal caregivers. MedPodml 2022, 73(3):8-11
Savremeno društvo, u kome se demografska slika menja prema sve starijem prosečnom
životnom dobu, suočava se sa važnim javnozdravstvenim problemom koji se odnosi na
pružanje pomoći starijim i zavisnim osobama. Svakodnevna pomoć obuhvata niz različitih
zdravstvenih i socijalnih usluga, kao i pružanje emocionalne podrške osobama koje nisu u
stanju da samostalno funkcionišu. Aktivnosti važne za svakodnevno funkcionisanje, poput
kupanja, oblačenja, hranjenja, kupovine i kontrole zdravlja samo su deo odgovornosti i
obaveza koje „nevidljiva radna snaga“, tj. neformalni negovatelji, moraju da obezbede. Iako
pružanje neformalne nege značajno utiče na ekonomski i zdravstveni status neformalnih
negovatelja, oni i dalje ostaju minimalno uključeni u kreiranje javnih politika. Neformalni
negovatelj je osoba koja, bez finansijske nadoknade, pruža kontinuiranu negu i podršku
osobama kojima je potrebna pomoć zbog fizičkih, kognitivnih ili mentalnih problema
(najčešće članovima porodice ili osobama u okruženju). Depresija predstavlja vrlo čest
problem sa kojim se suočavaju neformalni negovatelji (procenjuje se da između 40% i
70% neformalnih negovatelja ima simptome depresije). Pandemija KOVID-19 svakako je
uticala na fizičko zdravlje, ali s obzirom na njeno trajanje, vrši sve veći uticaj i na mentalno
zdravlje, a neformalni negovatelji spadaju u posebno ranjivu kategoriju. Neformalni
negovatelji, posebno oni koji pružaju dugotrajnu negu članovima porodice, u povećanom
su riziku od fizičke i emocionalne iscrpljenosti zbog dodatnog opterećenja pružanja nege
u okolnostima nastalim tokom pandemije, smanjene dostupnosti neophodnih usluga,
kao i premeštanja mnogih usluga u digitalno okruženje, što dodatno povećava stres i
probleme sa mentalnim zdravljem. Dok su neki neformalni negovatelji uspeli da se izbore
sa stresom razvojem odbrambenih mehanizama, drugi nisu, a psihološki pritisak je doveo
do razvoja simptoma depresije.
The aging society is facing an important public
health problem related to provision of care to older and
dependent people. The care provided on a daily basis
includes a range of different social and health services,
as well as the provision of emotional support to people
who are not capable to function independently. Activities
important for day by day functioning, such as bathing,
dressing, feeding, shopping and health monitoring are
only part of the responsibilities and obligations that the
“invisible workforce”, i.e. informal caregivers, must provide.
Due to Europe’s demographic ageing and an overall
increase in life expectancy, there is an increasing need for
care in all age groups, leading to caregivers’ contribution
to the sustainability of health care systems and to the
well-being of people in need of care being simply vital.
Even though, regardless of the heavy price informal
caregivers often pay with their economic and health
status, they still remain a blind spot in public policies (1).
An informal caregiver provides ongoing care
and assistance to family members and friends who need
support due to physical, cognitive or mental problems,
without receiving payment. Data suggests that between
20% and 44% of individuals in Europe provide some form
of informal care (2). In addition, around 13% of people
aged fifty and over, across 18 OECD countries, provide
informal care at least weekly (3). The Organization for
Security and Cooperation in Europe (OSCE) reports that
one in every ten adults provides informal care to a member
of the family who has some functional limitations (4). It
is often suggested that the informal caregiver is a woman
of an average age of over 50. The informal caregiver can
be of any gender, age, educational level, financial status,
but more importantly of different condition of health
(5). Results of a study carried out in Austria, on a sample
of 7403 children, showed that 4.5% of children, aged on
average 12 and a half years, care for the elderly in the family
(6). In the European Union, nearly 16% of the working
age population, in addition to their every day job, has the
obligation to provide some type of informal care and also,
50% of informal care providers who provide care regularly
have a permanent job. According to the data provided
by OECD, over half of all informal caregivers provide
services for 10 hours or less per week, and just less than
one fifth provide more than twenty hours per week (5).
Informal caregivers can be divided into three
groups according to the type of person being cared for: a
child with a chronic illness or disability cared for by young
parents, an adult child with mental health problems or
similar health problems cared for by middle-aged parents
and older people cared for by their spouse/partner or
their adult/middle-aged children (7). Providing care
to a child with a chronic illness or disability is a special
category of informal care and it often involves a complex
program of therapies and treatments that are provided to
a significant extent by the parent or guardian. Of course, a
number of these children still need support in performing
daily life activities, which again implies the involvement
of parents. The burden on parents/guardians of these
responsibilities can be very high and lead to various
negative effects on their quality of life, including insomnia,
anxiety, depression, as well as financial problems, which
in turn can have negative consequences for the child being
cared for. Possible negative consequences range from the
care being provided is of poor quality, through having a
Sažetak
Ključne reči:
neformalni negovatelj,
mentalno zdravlje,
KOVID-19

Medicinski podmladak / Medical Youth
Rajović T. et al. Mental health of informal caregivers. MedPodml 2022, 73(3):8-11
10
psychological burden and even neglect or physical abuse.
Informal caregivers of children with disabilities continue
their role from the birth of a child to the end of their
life. When informal caregivers reach some late years, the
special fear appears - who will take care of their children
after their death and what will happen to them, which
affects their health, mostly mental (8).
Informal caregivers are usually not trained or
prepared for their role. It is often imposed on them by
circumstances and they often provide care without the
necessary knowledge and skills, as well as without support
that would help them save and protect their own health.
It is not uncommon for a caregiver to provide care to a
person who needs it even with having health problems
himself. Recent research shows that caregivers themselves
are at increased risk of impaired health and that long-term
efforts and tensions related to provision of informal care
cause a variety of physical and mental health problems
(9). Studies have shown that between 15% and 32% of
caregivers estimate that they are under a heavy burden
of care and that those who are socially isolated or could
not organize an alternative way of care are particularly
endangered. The burden on caregivers further increases
when the health of the person being cared for deteriorates
and they have to provide care 24 hours a day, seven days a
week, but the burden also increases in people with poorer
financial situation and lower education (8).
Providing of informal care can induce opposite
effects on mental health of informal carers: ranging from
the fact that this activity brings satisfaction, emotional
fulfillment and a sense of purpose - to experiencing poorer
mental and physical health and being of higher risk of
depression compared to people who do not provide care.
Literature states that if care is provided over a long period
of time, caregivers are at risk of burnout syndrome, which
can lead to worsening physical, mental health and risk of
depression (10). Mental health problems are 20% higher
among informal caregivers than among those who do not
provide care, and are especially pronounced in people who
provide care more than 20 hours per week (very intensive
care). Depressive disorders, anxiety, anger and animosity
are often associated with greater responsibilities of care
and attention. Prolonged effort, uncertainty, inability to
find an adequate balance between work, private life and
care for the person who needs it - has a negative impact
on the emotional and mental health of informal caregivers.
For this reason, in this population, elevated levels of
anxiety, stress, depression and other mental problems are
often encountered (11).
Depression is one of the most common problems
experienced by informal caregivers and it is suggested
that a large number, in the range of 40% to 70% of all
informal caregivers have some symptoms of depression,
of which between 25% and 50% have symptoms of such
severity that they meet the criteria of major depression
(12). These symptoms get worse with increasing care load,
so the presence of emotional stress and depression is very
high (from 30% to 40%) in caregivers providing care for
people with dementia (13). Women informal caregivers
are particularly exposed to the negative effects on mental
health, with more frequent symptoms of depression and
anxiety and thus more compromised physical health (14).
High levels of stress lead to feelings of frustration, anger,
exhaustion, guilt and helplessness. This is especially
pronounced when caregivers cannot notice that the person
they are caring for is improving in any way (15). Caregivers
also report lower levels of self-esteem, a constant feeling
of worry and loss of control over their lives. This is
further associated with insomnia, but also with the risk
of impaired cognitive functions - poor memory, impaired
attention, etc (16).
The perception of a caregiver’s burden is
multidimensional and complex. In 1986, Zarit and
collaborators defined caregiver burden as „the degree to
which a caregiver’s emotional or physical health, social
life or financial status had suffered as a result of caring
for their relative” (17). In addition, Dang et al. suggested
that caregiver burden includes the overall psychological,
emotional, physical and financial toll of providing care
(18). Up to date literature showed that the main factors
relating to the patient which contribute to caregiver burden
are the patients’ severity disturbances, extent of changes
in personality, as well as the development of psychiatric
symptoms. Some studies reported that older caregivers
experienced great perception of burden, whereas in other
studies, a greater sense of burden experienced younger
caregivers. Results of both studies are reasonable: older
caregivers generally have poor psychological and physical
health, while younger caregivers are less experienced in
care giving (19). When it comes to stress and the burden
of care, it is recognized that providing care over extended
periods of time is stressful because it mandates at least
some physical effort, creates a psychological burden, has
a high level of unpredictability and can pour into other
areas of life such as employment, family relationships
and etc (20). Studies analyzing burnout syndrome in
informal caregivers that provide care for people with
dementia and who observes the objective characteristics
of care (economic cost, time required for care) and
subjective, emotional response in caregivers, indicates that
more intensive care, involving several hours a week, can
result in emotional stress, physical exhaustion, limiting
opportunities to partake in social life or recreational
activities, decreased appetite and troubles maintaining
regular sleep, as well as an increased risk of mental
disorders and mortality. Emotional attachment to the
person informal caregiver cares for, as well as the fact that
informal care does not have defined working hours, nor
does it provide any material payment, is an additional factor.
Together with social isolation, poorer physical health and
an unenthusiastic attitude towards providing care are all
predictors of burnout syndrome, which further diminishes
the quality of care. Scholars such as Alves and collaborators
in their systematic review reported a correlation between
the extent of the limitations in the person receiving
care and the burden felt by the informal caregiver (20).

Medicinski podmladak / Medical Youth
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Rajović T. et al. Mental health of informal caregivers. MedPodml 2022, 73(3):8-11
The COVID-19 pandemic has certainly left its
mark on physical health, however, as the pandemic moves
forward, it has began to show an ever increasing impact
on the mental health of people around the world, where
informal caregivers fall into a particularly vulnerable
category (21). Informal caregivers, particularly those who
provide long-term help to a member of the family, became
of an increased risk of emotional and physical exhaustion
due to the burden of care, reduced services, as well as
the relocation to consulting by telephone and the digital
sphere. While some of them managed to cope with stress
and became resilient, others did not and the increasing
psychological pressure led to the development of
depression symptoms. In addition, COVID-19 increased
the pressure on informal caregivers, since it increased the
scope and manner of their usual care. Caregivers reported
that they did not have the opportunity to have a break
and had little time for self-help and for themselves (22).
Bearing in mind the impact of the COVID-19 pandemic
on the circumstances under which informal care is
provided, it is essential to design appropriate measures
in order to help informal caregivers overcome the stress
they are encountering, the subjective sense of burden, and
depression. They should be recognized as being a part of a
formal long-term healthcare system, which would provide
additional rights concerning social and health protection,
as well as in the field of labor law. In this way, the first step
would be taken in providing them with support, which will
have a positive impact on the outcomes of physical and
mental health, in addition to the level of quality of care
they provide.
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