ArticlePDF Available

Informal Carers: Who Takes Care of Them?

Authors:

Figures

Content may be subject to copyright.
EUROPEAN CENTRE
s
EUROISCHES ZENTRUM
s
CENTRE EUROPÉEN
POLICY BRIEF APRIL 2010
Informal Carers:
Who Takes Care of Them?*
Frédérique Hoffmann and Ricardo Rodrigues
Until recently, unpaid care provided by relatives, neighbours and friends –
informal care – had been overlooked or taken for granted by policy-mak-
ers in the context of long-term care provided to dependent older people.
A certain amount of informal care is nevertheless essential in filling the
gaps of formal care services, supplementing them or assuring that care
is provided in certain critical transition phases (e.g. after discharge from
hospital). Care provided by relatives and friends is often the only fallback
option when care services are not available.
Driven by concerns over the fiscal sustainability of long-term care servic-
es and by more self-conscious and demanding carers’ movements in many
countries (e.g. UK), informal care has been brought into the limelight. Still,
despite this newfound interest, information available on informal carers is
still relatively scarce. This is in part due to the nature of the subject itself
as informal care is often provided by relatives and thus falls within the
sphere of private family life. In addition, methodological issues make it dif-
ficult for informal care to be properly addressed in general population or
household surveys.
In view of this, what do we know about who provides informal care and
who benefits from it? What differences (if any) are found among coun-
tries? And what policies are set in place to support informal carers?
The aim of this Policy Brief is to contribute to answering some of these
questions. It does so by using available data from national and interna-
tional sources, as well as qualitative information gathered in our recent
publication Facts and Figures on Long-term Care – Europe and North America.
It seeks to increase knowledge on informal carers and the challenges they
face, as well as to discuss some of the implications surrounding social
policies that impact informal care-giving. The analysis is very much policy-
oriented and takes on a comparative view, focusing mostly on countries of
the European Union.
Frédérique Hoffmann and Ricardo
Rodrigues are Research Fellows at the
European Centre for Social Welfare
Policy and Research, Vienna.
M
A:
IMI
* This Policy Brief is part of ongoing
research developed under the project
Mainstreaming Ageing: Indicators to Monitor
Implementation, namely on long-term care
for elderly people.
The authors greatly appreciate the con-
tribution of Katrin Gasior in developing
the graphs for this Policy Brief, the valu-
able comments of Catharina Hjortsberg
and Asghar Zaidi, and the editorial help of
Willem Stamatiou.
Any remaining errors are the sole
responsibility of the authors.
Keywords: Long-term Care, Old-Age,
Gender, Care-giving, Family
Policy Briefs are a publication series
providing a synthesis of topics of
research and policy advice on which
European Centre researchers have been
working recently.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
2
This Policy Brief is organised as follows: it begins by providing a concise
portrait of informal
1
care-giving, highlighting common characteristics and
differences across countries; it then moves to discuss why the current
portrait of informal care-giving may come under pressure in the near fu-
ture; and finally, it addresses some of the policies that are likely to impact
informal carers.
1) A portrait of informal carers across Europe:
Avoiding clichés
North-South Divide: myth or reality?
The results depicted in the Facts and Figures on Long-term Care publica-
tion show that caring for an elderly parent is more frequent in North-
ern Europe than in Southern Europe, but the care provided is far more
intensive in Southern Europe. These results point to the influence of living
arrangements, as extended families are still more common in the South,
but also to the (un)availability of care services at home. Although data is
not directly comparable, the 2nd wave of SHARE presents similar findings
(Attias-Donfut, Ogg and Wolff, 2005). Indeed, although one third of over-
all SHARE respondents living alone received help with personal care or
practical tasks during the past 12 months, these rates were significantly
lower in Spain, Italy and Switzerland. “It would seem that the strong di-
mension of family support that is manifest in Spain and Italy is weakened
when older people are living alone and that these two countries may
not have the infrastructure in place that facilitates solo living in old age”
(Attias-Donfut, Ogg and Wolff, 2005: 174).
Percentage of the population aged 15+ providing informal care to a relative aged 60+, 1999
Caring for an elderly parent is
more frequent in Northern
Europe than in Southern
Europe but care provided
is far more intensive in
Southern Europe.
Figure 1:
United in diversity:
care-giving in EU15 countries
Source:
Huber, Rodrigues, Hoffmann,
Gasior and Marin (2009): 57,
based on Walker (1999).
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
3
Family carers across the EU provide over 80% of all care, with women
providing approximately two thirds of care mainly as daughters (in law)
and wives/partners. Generalisations with regard to the North/South
divide of care intensity in Europe should be avoided as they oversimplify a
very complex picture. Indeed Italy has seen the number of domestic car-
ers quadruple in the last 15 years while the proportion of foreign carers
has risen from around 15% in 1990 to approximately 85% in 2005 (La-
mura, Mnich and Döhner, 2006). This phenomenon has occurred mainly
as a result of the lack of available professional long-term care services
which have forced families to seek affordable alternatives to care for their
dependent relatives (including migrant carers). Thus Italy (as well as Spain)
have shifted over the last decade from the extended family-based type of
care towards a model that still relies heavily on informal care, but less so
on family care-givers.
Relationship between the carer and the care recipient in percentage
Men also care
Aside from sons and daughters as primary care-givers, spouses/partners
also provide a critical safety net for the dependent elderly, allowing them
to delay entry into institutional care. As regards the type of care, women
provide a substantial amount of personal care to their elderly relatives,
namely assisting with bathing, washing, feeding etc., while men are more
active providing help with Instrumental Activities of Daily Living (IADL)
2
,
particularly during their working life. One exception is care provided to
Figure 2:
Family affair: who cares?
Source:
Huber, Rodrigues, Hoffmann,
Gasior and Marin (2009): 57,
based on OECD (2005), national
sources and EUROFAMCARE.
Notes:
Definitions of carers and care recipients
may differ between countries.
For Austria the figure for children carers
represents only those taking care of their
parents; however, if one also includes
parents-in-law this would bring up the
figure to approximately 50%; for the
Slovak Republic the gender breakdown
figures represent only care-givers
aged 65+; for Hungary data were only
available for children providing care
to their parents.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
4
one’s partner/spouse which is more at a gender balance as both men
(usually once they are retired) and women provide labour-intensive care.
As male life expectancy increases this could translate into an increased
availability of informal care since presently men provide as much informal
care in older age groups as their female counterparts as they tend to
provide care to their elderly spouse. However this hypothesis rests on
men and women living together in old age.
Women provide more care to older people but men catch up in later years
2) Is informal care in its present form
sustainable?
Recent demographic, social and policy developments have raised the
question of whether “care gaps” are increasingly likely to occur as
informal care may become less available, which in turn could lead to an
increase in demand for formal long-term care.
Currently informal carers are most likely to be women of working age.
However, with population ageing, this portrait is likely to change as de-
picted in Figure 4. The projected “support ratio”, i.e. the ratio of women
aged 45-64 (those more likely to provide informal care) for each person
aged 80 and older (those more likely to be in need of care), has already
diminished in the past 15 years for many of the Western European
countries. This trend is likely to continue in the future and to extend to
Eastern European countries.
Men tend to provide care in
their later years and mainly
provide care to their spouse
including assistance with ADL.
Figure 3:
Sharing the burden:
men’s late catching-up
Source:
Huber, Rodrigues, Hoffmann,
Gasior and Marin (2009): 58.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
5
“Support ratio”: number of women aged 45-64 for each 80 year-old (2005/2006)
Given the prospect of a potentially reduced number of informal car-
ers of working age, spouses may find themselves as the main carers in
the future. This depends, however, on the future living arrangements of
older people, as well as on their health status. The most recent round
of Census data shows an increasing trend of older people living alone,
particularly women once they reach the age of 80. Although partners can
potentially take over some of the care tasks from their children, elderly
women living alone seem more likely to have to rely on professional care
services if they live far from their children, or the latter are unwilling to
leave gainful employment for care-giving purposes.
Although living with a child is still extremely common in many regions of
the world, it is the couple-only arrangement which is the most common
for older people in Europe and North America. Therefore children who
are not living in the vicinity of their elderly parents may not be available
to provide informal care even if they are in principle willing to do so.
Furthermore, as fertility rates decline, the number of available children
able to share care duties among them will be smaller in the future. In light
of these trends, non-family members are increasingly taking on a caring
role albeit more for assisting with IADL. Nonetheless involvement in the
organisation and coordination of care as well as in the care itself remains
very much a family business so care gaps in this sense are unlikely to oc-
cur.
An increasing trend of older
people living alone could suggest
a rise in the demand for formal
care services in the future.
Figure 4:
Demographics alone may
change the current profile
of informal carers
Source:
Eurostat.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
6
The goals of the Lisbon Agenda
could challenge the availability
of informal carers,
particularly women.
Living alone for people aged 60-79 and those aged 80+, Eurostat 2001 Census data
Approximately 40% of informal carers are in gainful employment across
Europe, and this number is likely to rise in the future as more women
across the UN-European Region are entering the labour force. This leads
to the key policy question as to whether informal care in its present
form (i.e. with a large share of women out of the labour force providing
care between 45 and 64 years of age) is likely to hold in the future. On
a macro-level, combining the goals of the so-called “Lisbon Agenda” (i.e.
increasing employment rates for women and older workers, postponing
retirement) while trying to avoid a “drying out” of the family care pool is
a key policy challenge.
Finally, many relatives still prefer informal carers to take care of their eld-
erly family members, but there is a growing sense of conflicting expecta-
tions that elderly people are too dependent on their family carers (see
Figure 6). Moreover a preference for family care may also partly be due
to the lack of suitable alternatives in the formal sector. As employment
and education rates of women have dramatically risen in recent decades,
carers may be more reluctant to give up on employment opportunities
for a caring role. This feeling of over-reliance is particularly felt in coun-
tries which also favour more family care (mainly transition countries and
Southern Europe) which could suggest a change in the identity of women
concerning their role in society.
Figure 5:
Home alone ...
even more so for the 80+
Source:
Eurostat 2001 Census data;
National sources for Israel.
Notes:
* EU 27 minus Belgium, Bulgaria, Latvia,
Luxembourg, Malta and Sweden.
** Data for Israel refer to
the 60+ age group.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
7
Answers to Eurobarometer survey regarding health and long-term care in the EU, 2007
3) Policies in place: how far do they go to meet
the challenge?
Recognising the importance of informal care and the present and future
challenges that it faces, some countries have sought to put in place poli-
cies to support carers. In fact, addressing the needs of carers and recog-
nising them as key stakeholders has been one of the defining characteris-
tics of recent policy developments in long-term care. These policies have
been developed either by providing cash benefits to carers, thus compen-
sating for lost income or recognising their role as carers, or by setting
up services aimed at facilitating their caring tasks (e.g. counselling, respite
care, etc.).
3a) Providing cash to carers
One set of policies aimed at supporting carers that has gained momen-
tum in recent years has been cash-for-care benefits. These cash benefits
are paid directly to carers (care allowances) or to those in need of care
(attendance allowances), which may then be used to compensate informal
carers. The increasing role played by these benefits goes hand in hand
with the development of policies aimed at increasing user choice in ac-
cess to long-term care, as informal care becomes one of the “options”
available for those in need of care. But this development also has a clear
Figure 6:
What appears to be the best
option for dependent parents
may not necessarily be the best
option for their daughter/son
Source:
Eurobarometer (2007),
question: 7a and 29.1.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
8
“cost containment” motivation, as supporting informal care may be seen
as a cheaper option for the public purse, even if from a societal point of
view it may be more expensive to have people out of the labour market.
The amount of social benefits available to informal carers is usually small
in relation to the cost of providing professional care services – as Fig-
ure 7 depicts, the average amount of these benefits in many countries is
inferior to 30% of the average wage. Yet small as they may be, they might
still be enough to maintain dependent people in their homes (at least up
to a point) and thus avoid more expensive institutional care – an objec-
tive termed “ageing in place” (OECD, 2005). Some of the cash benefits
available to those in need of care provide lower amounts if informal care
is the chosen option (e.g. in the case of Germany or the Dutch Personal
Budget), thus discounting for overhead costs.
Relative generosity of cash benefits (care allowances and attendance allowances)
from which carers may benefit
However clear the trend towards providing cash for care may be, these
policies come with trade-offs that policy-makers ought to bear in mind
when weighing-in their options. The allure of cost-containment is a pow-
erful one, but providing cash for care may have potential side-effects on
the labour supply of carers, acting as a disincentive to gainful employment.
Balancing the goals of the Lisbon Agenda on employment and support-
ing informal carers need not be conflicting goals of social policy, but their
conciliation may prove challenging. In countries where care allowances
are in place, these usually come with the condition that caring becomes a
full-time activity or close to one.
Figure 7:
Providing cash to carers
Source:
Adapted from Huber, Rodrigues,
Hoffmann, Gasior and Marin (2009),
Eurostat and OECD.
Notes:
– Figures for Austria and Germany as to
the number of beneficiaries using their
attendance allowance to pay for
informal carers are an estimate.
– Figures for England (direct payments),
Italy and the Netherlands may include
beneficiaries of formal home services.
The provision of cash benefits
to carers comes with trade-offs,
notably in terms of employment.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
9
Providing relatively unregulated cash benefits (i.e. where little proof is
required on how the money is spent) may be seen as an empowerment
tool for users and have administrative advantages, saving on paperwork
and inspections. However, it can also lead to the creation of informal
markets for the provision of care. This seems to have been the case
in Italy, Austria and to a certain extent Germany which rely to a great
degree on undocumented migrant carers. Even though the benefits may
be small in value in their national context, existing wage gaps may make
them attractive to migrant carers. On the other hand, introducing too
many constraints on who may receive the benefit may result in a reduced
benefit take-up as preferred care options such as care provided by the
spouse or close relatives are excluded (this might be the reason for the
low take-up of Direct Payments by older people in England).
Cash benefits may also risk trapping informal carers, most notably
women, in a socially precarious and many times unwanted care role. Crit-
ics of the implementation of cash for care argue against these policies as
a move towards a “refamiliarisation” of care (see Kröger and Silipa, 2005),
i.e. a move towards a retrenchment of the role of the State in disfavour
Table 1:
Hurdles in the conciliation
of care allowances
with employment
!""#$!%&$'"$(%!)*+(&+!,$,%-*.$%)$.%(+-*$/%*+(01$'2&$&3"+4$(%!(+*+-&+%!$5-0$/4%6"$(3-**"!,+!,7$8!$
(%2!&4+".$ 93"4"$(-4"$-**%9-!(".$ -4"$+!$ /*-("1$&3"." $ 2.2-**0$ (%5"$ 9+&3$ &3"$ (%!#+&+%!$ &3-&$
(-4+!,$'"(%5".$-$)2**:&+5"$-(&+6+&0$%4$(*%."$&%$%!"7$
!"#$%&'(& )*+,$%-&./&01%&23/2.$."0.3/&34&2"+%&"$$35"/2%-&5.01&%67$386%/0
&
;%2!&40$
<"!")+&$
="-!.:
&".&+!,$
>&3"4$'"!")+&.$
84"*-!#$
;-4"4@.$-**%9-!("$
A".$
$
84"*-!#$
;-4"4@.$'"!")+&$
J%$
K2//*"5"!&$'"!")+&$)%4$
(3+*#4"!7$
B+!*-!#$
;-4"$-**%9-!("$%4$
+!)%45-*$(-4"$
-**%9-!("G$.2//%4&$
)%4$+!)%4 5-*$(-4"$
J%$
?"-6"$-!#$.2//%4&$."46+(".$&%$
4"*-&+6".7$
O"./+&" $(-4"$DP$#-0.$/"4$
5%!&3I7$
Q"!.+%!$(4"#+&.$D*+5+&"#I$-!#$
-((+#"!&$+!.24-!(" 7$
R2-.+:(%!&4-(&7$
?2L"5'%24,$
;-4"4@.$-**%9-!("$
J%$
Q"!.+%!$(4"#+&.$D'-."#$%!$
5+!+525$9-,"I7$
Q-+#$.%(+-*$(%!&4+'2&+%!.7$
O"./+&" $(-4"7$
J%49-0$
;-4"$9-,"$
D!"#$%&#'()**I$
J%$
<"*%9$-6"4-,"$/"!.+%!$
(4"#+&.7$
Q%.&:(-4":,+6+!,$/"!. +% !7$
;%!&4-(&7$
K*%6"!+-$
V%5"$(-4"$
-..+.&-!("$%4$)-5+ *0$
-&&"!#-!&$
J%$
Q"!.+%!$(4"#+&.7$
S!"5/*%05"!&$'"!")+&7$
Q-4"!&-*$+!.24-!("7$
Q-+#$.%(+-*$(%!&4+'2&+%!.$
K*%6-H$
O"/2'*+($
;-4"$-**%9-!("$
A".$
$
K9"#"!$
;-4"4@.$.-*-40$
D+*#,-(./0/*1)%2&3I$
J%$
B2**$.%(+-*$/4%&"(&+%!7$
;%!&4-(&7$
SW$
;-4"4@.$-**%9-!("$
A".$
Q"!.+%!$(4"#+&.7$
K2//*"5"!&$'"!")+&$)%4$
(3+*#4"!7$
8!(4"-."#$.%(+-*$'"!")+&.7$
K%24("X$Y#-/&"#$)4%5$V2'"41$O%#4+,2".1$V%))5- !!1$Z-.+%41$=-4+!$DPFF[IX$\T7$
Q4%6+#+!,$4"*-&+6"*0$2!4",2*-&"#$(-.3$'"!")+&.$D+7"71$93"4"$*+&&*"$/4%%)$+.$4"C2+4"#$%!$3%9$&3"$
5%!"0$ +.$ ./"!&I$5- 0$'"$.""!$ -.$ -!$ "5/%9"45"!&$&%%*$ )%4$ 2."4.$ -!#$ 3-6"$-#5+!+.&4-&+6"$
-#6-!&-,".1$.-6+!,$%!$/-/"49%4H$-!#$+!./"(&+%!.7$V%9"6"41$+&$(-!$-*.%$*"-#$&%$&3"$(4"-&+%!$
%)$ +!)%45-*$ 5-4H"&.$ )%4$ &3"$ /4%6+.+%!$ %)$ (-4"7$ ]3+.$ .""5.$ &%$ 3-6"$ '""!$ &3"$ (-."$ +!$ 8&-*01$
Y2.&4+-$ -!#$ &%$ -$ ("4&-+!$ "L&"!&$ Z"45-!0$ 93+(3$ 4"*0$ &%$ -$ ,4"-&$ #",4""$ %!$ 5+,4-!&$
2!#%(25"!&"#$ (-4"4.7$ U6"!$ &3%2,3$ &3"$ '"!")+&.$ 5-0$ '"$ .5-**$ +!$ 6-*2"$ +!$ &3"+4$ !-&+%!-*$
(%!&"L&1$"L+.&+!,$9-,"$,-/.$5-0$5-H"$&3"5$-&&4-(&+6"$&%$5+,4-!&$(-4"4.7$>!$&3"$%&3"4$3-!#1$
+!&4%#2(+!,$&%%$5-!0$(%!.&4-+!&.$%!$ 93%$5-0$ 4"("+6"$&3"$'"!")+&$5 - 0$4".2*&$+!$-$4"#2("#$
'"!")+&$ &-H":2/$ -.$ /4")"44"#$ (-4"$ %/&+%!.$ .2(3$ -.$ (-4"$ /4%6+#"#$ '0$ &3"$ ./%2."$ %4$ (*%."$
Source:
Adapted from Huber, Rodrigues,
Hoffmann, Gasior, Marin (2009): 83.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
10
of families and in particular women. It is however a difficult issue, since
cash for care benefits also represent the recognition of the role and
importance of informal carers and may contribute to the improvement
of their social status and well-being, as some of these benefits also entitle
informal carers to pension credits or sickness insurance. However, given
the strong gender dimension attached to the issue of cash for care, gen-
der mainstreaming concerns seem to be conspicuously absent from the
design of these benefits.
Another point against the provision of cash benefits to family carers re-
lies on a much more near-sighted argument: that of (supposed) economic
efficiency. Under this reasoning, close relatives should be precluded from
receiving cash benefits since this would mean paying for services that
they would likely do anyway. This policy stance, however, risks overbur-
dening carers even more and may lead to reduced availability of carers in
the future.
3b) The importance of providing services to carers
Carers often enjoy little leisure time due to the intensity of their caring
duties, which require a large amount of time to be spent in the home of
the care recipient. Family carers are as a result likely to experience to
some degree feelings of isolation, psychological distress including anxiety
(which incidentally can also affect their “presenteeism” for those who
work), depression and loss of self-esteem. They may also be more prone
to risky behaviour (e.g. smoking), or to neglect their own health. Taking
up preventive health measures is even more important as informal carers
are themselves ageing: e.g. according to a study carried out in the UK
(Doran, Drever and Whitehead, 2003), a substantial number of carers
were aged 85 or older; more than half of these were providing at least
50 hours of care a week; and one third of these heavily burdened carers
rated their health as “not good”. Middle-aged carers on the other hand
might simultaneously be shouldering the responsibility to care for their
own (grand)-children – the so-called “pivot generation”.
Consequently, important as cash benefits may be for informal carers, this
is not the only way to support informal care-giving and it may even be
argued that it is not the best way to alleviate their burden. Care services
aimed at informal carers themselves are equally important if many times
overlooked.
Respite care allows informal carers to take a break from their care duties
and may prove fundamental for their psychological well-being by pre-
While cash benefits may go
some way to support the
informal carers financially, it still
requires the latter to be heavily
involved in care duties.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
11
venting burnout. However, available places in respite care remain scarce
across Europe, even in countries with a relatively wide coverage of care
services (e.g. Denmark) – see Table 2. Providing respite care, or short-
term stays in institutional settings or at home, may pose some delivery
constraints and require greater flexibility in the provision of care (e.g. if
respite is provided at home by service providers). Take-up services are
fairly low for a variety of reasons, one being that family members find
that it disrupts the care recipient too much to be placed in a short-term
institution with new carers, particularly those with dementia. Another
obstacle is the cost of respite care, especially for those carers who have
had to give up gainful employment.
Even when it is available, take-up of respite or other services available to
carers may be low as they might not be aware that such services exist.
Certain countries have sought to improve the information available for
people with care needs and their families, an issue that has been well-
documented as one of the major problems for family carers. In Austria
as recently as 2006, applicants for the LTC allowance have been provided
with so-called “counselling vouchers”, which enable them to receive a
visit by a nurse to get information, advice and practical hints about the
formal care system and benefits available (Leichsenring, Ruppe, Rodrigues
and Huber, 2009). In other countries, carers’ associations have themselves
established websites and hotlines that help carers navigate through the
complexity of care systems.
Respite care is not the only service likely to impact positively on infor-
mal carers. Day-care centres may also ease the burden of care on family
Table 2:
Limited availability of
respite care across Europe
Availability of respite services
is improving but more
systematic support to
informal carers is needed.
Source:
Statistics Denmark (StatBank), Statistics
Norway (StatBank), IMSERSO, CBS
(Statline), Federal Ministry of Health
(Germany), The Information Centre
(Social Care Statistics), Department for
Health and Children (Ireland), Swiss
Federal Statistical Office and the National
Board of Health and Welfare (Sweden).
Notes:
(a) Number of places.
(b) Beneficiaries younger
than 65 may be included.
(c) Age group is 67 and older.
(d) Underestimation, as data is not
available for all regions.
!"#$%&'$( ")(!&%$(*$%#+!$*(,$-'-.(/$01&%23(4(*$$(5&67$(8-(9%"#+:+0'(%$*;+5$(!&%$.("%(*<"%5=5$%1(
*5&>*( +0( +0*5+5?5+"0&7( *$55+0'*( "%(&5( <"1$.(1 & >( ;"*$( *"1$(:$7+#$%>( !"0*5%&+05*( &0:(%$@?+%$(
'%$&5$%( )7$A+6+7+5>( +0( 5<$( ;%"#+*+"0( ")( !&%$( ,$-'-.( +)( %$*;+5$( +*( ;%"#+:$:( &5( <"1$( 6>( *$%#+!$(
;%"#+:$%*3-( B&2$=?;( *$%#+!$*( &%$( )&+%7>( 7"C( )"%( &( #&%+$5>( ")( %$&*"0*.( "0$( 6$+0'( 5<&5( )&1+7>(
1$16$%*( )+0:( 5 <&5 ( +5( :+*%?;5*( 5<$( !&%$( %$!+;+$05( 5""( 1?!<( 5"( 6$( ;7&!$:( +0( &( *<"%5=5$%1(
+0*5+5?5+"0( C+5<(0$C(!&%$%*.(;&%5+!?7&%7>(5<"*$(C+5<(:$1$05+&-(D0"5<$%("6*5&!7$(+*( 5<$(!"*5(")(
%$*;+5$(!&%$. ($*;$!+&7 7>()"%(5<"*$(!& %$%*(C<"(<&#$(<&:(5"('+#$(?;('&+0)?7($1;7">1$05-((
!"#$%&'(& )*+*,%-&"."*$"#*$*,/&01&2% 3 4*,%&5"2%&"52033&67204%&
E"?05%>(
(
F$&%(
D#&+7&67$(6$:*("%(6$0$)+!+&%+$*(+0(
;$%!$05&'$(")(5<$(GHI(;";?7&5+"0(
/$01&%2(
,&3(
8JJK(
J.LM(
N$%1&0>(
,63(
8JJK(
J.OM(
P%$7&0:(
,&3.(,63(
8JJQ(
J.8M(
R$5<$%7&0 :*(
(
8JJL(
O.QM(
R"%C&>(
,!3(
8JJG(
J.OM(
S;&+0(
,&3.(,63.(,:3(
8JJG(
J.OM(
SC$:$0(
(
8JJG(
J.GM(
SC+ 5T$%7&0:(
,63(
8JJG(
O.QM(
UV(
((
8JJHW8JJG(
J.GM(
S"?%!$X(S5& 5+*5+!*(/$01&%2(,S5&5Y&0 23.(S5&5+*5+!*(R"%C&>(,S5&5Y&023.(PZS[\S].(EYS(
,S5&57+0$3.( ^$:$%&7( Z+0+*5%>(") ( _$&75<( ,N$%1&0>3.(B<$( P0)"% 1&5+"0 ( E$05%$(
,S"!+&7( E&%$( S5&5+*5+!*3.( /$;&%51$05( )"%( _$&75<( &0:( E<+7:%$0( ,P%$7&0:3.(
SC+**( ^$:$%&7( S5&5+*5+!&7( ]))+!$( &0:( 5<$( R&5 +" 0&7( Y"&%:( ")( _$&75<( &0:(
`$7)&%$(,SC$:$03-(
R"5$*X(,&3(R?16$%(")(;7&!$*-(
,63(Y$0$)+!+&%+$*(>" ?0'$%(5<&0(GH(1&>(6$(+0!7?:$:-(
,!3(D '$('%"?;(+*(GK(&0:("7:$%-(
,:3(U0:$%$*5+1&5+"0.(&*(:&5&(+*(0"5(&#&+7&67 $()"%(&77(%$'+"0*-(
[#$0(C<$0(+5(+*(&#&+7&67$.(5&2$=?;(")(%$*;+5$("%("5<$%(*$%#+!$*(& #&+7&67$(5"(!&%$%*(1&>(6$(7"C(
&*( 5<$>( 1+'<5( 0"5( 6$( &C&%$( 5<&5( *?!<( *$%#+!$*( $A+*5-( E$%5&+0( !"?05%+$*( <&#$( *"?'<5( 5"(
+1;%"#$( 5<$( +0)"%1&5+"0( &#&+7&67$( )"%( ;$";7$( C+5<( !&%$( 0$$:*( &0:( 5<$+%( )&1+7+$*.( &0( +**?$(
5<&5(<&*(6$$0(C$77=:"!?1$05$:(&*("0$(")(5<$(1&a"%(;%"67$1*()"%()&1+7>(!&%$%*-(P0(D?*5%+&( & *(
%$!$057> ( &*( 8JJG.( &;;7+!&05*( )"%( 5<$( bBE( &77"C&0!$( <&#$( 6$$0( ;%"#+:$:( C+5<( *"=!&77$:(
c!"?0*$77+0'(#"?!<$%*d.(C<+!<($0&67$(5<$1(5"(%$!$+#$(&(#+*+5(6>(&(0?%*$(5"('$5(+0)"%1&5+"0 .(
&:#+!$(&0:(;%&!5+!&7(<+05*(&6"?5(5<$()"%1&7(!&%$(*>*5$1(&0:(6$0$)+5*(&#&+7&67$(,b$+!<*$0%+0'.(
\?;;$.(\":%+'?$*(&0:(_?6$%.(8JJe3-(P0("5<$%(!"?05%+$*.(!&%$%*f(&**"!+&5+"0*(<&#$ (5<$1*$7#$*(
$*5& 67+*<$:(C$6*+5$*(&0:(<"57+0$*(5<&5(<$7;(!&%$%*(0&#+'&5$(5<%"?'<(5<$(!"1;7$A+5>(")(!&%$(
*>*5$1*-(
\$*;+5$(!&%$(+*(0"5(5<$("07>(*$%#+!$(7+2$7>(5"(+1;&!5(;"*+5+#$7>("0(+0)"%1&7(!&%$%*-(/&>=!&%$(
!$05%$*(1&>(&7*"($&*$(5<$(6?%:$0(")(!&%$("0()&1+7>(1$1 6$%*(&0:(*"(!&0("5<$%(<"1$(!&%$(
*$%#+!$*- (D75<"?'<(5<$(a?%>(+*(*5+77("?5("0(5<$($A&!5(%$7&5+"0*<+;(6$5C$$0(*?;;7>(")(+0)"%1&7(
!&%$( &0:( $A+*5+0'( )"%1&7( !&%$( *$%#+!$*.( 5<$( 1"*5( %$!$05( $1;+%+!&7( $#+:$0!$( ,!)-( Y"0*&0'.(
8JJe3(*?''$*5(5<&5(&#& +7&6+7+5>(")(<"1$(!&%$(* $%#+!$*(1 & >(%$*<&;$(5<$(5>;$(")(+0)"%1&7(!&%$(
flamontagne! 20.4.10 10:52
Kommentar: SUZZD\F(YUYYb[X(D#&+7&6+7+5>(")(
%$*;+5$(*$%#+!$*(+*(+1;%"#+0'(6?5(1"%$(*>*5$1&5+!(
*?;;"%5(5"(+0)"%1&7(!&%$%*(+* (0$$:$:(
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
12
members and so can other home care services. Although the jury is still
out on the exact relationship between supply of informal care and exist-
ing formal care services, the most recent empirical evidence suggest that
availability of home care services may reshape the type of informal care
provided towards less burdensome domestic help (Bonsang, 2009). In
Northern European countries, where provision of home care services is
higher, more persons seem to be able to provide informal care by limiting
it to less demanding tasks (household chores) and thus limiting the feeling
of overdependence of older relatives on their family for care – Figure 8.
There is a strong case for conciliating support for informal carers while
investing in formal care services, for “if anything the evidence points to
family carers providing rather more hours of care when formal services
are provided as well” (OECD, 2005: 45). However, recent policy develop-
ments show contradicting signs on this matter. In the Netherlands, the
concept of “usual care” has been introduced in the assessment of eligibil-
ity for home care services, which effectively implies that those closest to
the person affected – most likely the partner and/or children of the de-
pendent – are expected to provide the necessary care. The policy trend
observed in some countries towards targeting services to those more in
need of care (e.g. in England and Sweden) may also leave some tasks to
be carried out by informal carers alone.
Less burdensome care could also help mitigate the possible trade-off
between care and employment faced by informal carers. Supplementing
Figure 8:
Over-reliance on relatives ...
does it signal overburdening
of carers?
Source:
Huber, Rodrigues, Hoffmann,
Gasior and Marin (2009)
and Eurobarometer (2007).
Notes:
Figures for the share of 65+ receiving
formal care only for Austria
and Germany are an estimate.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
13
informal care with formal care services at home could thus prove to be
the best way of striking a balance between fulfilling the employment goals
of the Lisbon Agenda, while ensuring that informal care remains available.
The data presented in Figure 9 suggest that formal care services may
contribute to improve the labour market situation of older women of
working age. While juggling employment with caring responsibilities can
be daunting, remaining in paid work can also have a positive impact on
carers as it provides income and pension rights, helps to maintain social
networks, offers a temporary relief from their caring role, enhances self-
esteem and offers the opportunity to share concerns with colleagues in a
similar situation.
Availability of formal care services and female employment rate (55-64 years)
4) Conclusion
Informal care-giving remains the backbone of care provision in Europe
and for many dependent older people it is their preferred care option.
Complete replacement of informal care by formal care services is neither
financially feasible nor socially desirable. Policy-makers should therefore
ensure that the carers’ own needs as much as those of the care recipi-
ents are taken into consideration and met. Some countries have already
taken steps in this direction, namely by providing carers with a statutory
right to receive an assessment of their needs for services in addition to
services for older people (as is the case of the UK).
Figure 9:
Care services may improve
the conciliation of employment
and care duties
Combining informal with formal
care at home could provide
a better framework to allow
women in particular not to
leave the workforce early which
could put them at risk of
financial hardship.
Source:
Huber, Rodrigues, Hoffmann,
Gasior and Marin (2009),
Eurostat and OECD.
Notes:
– Figures for the share of 65+ receiving
formal care only for Austria
and Germany are an estimate.
– Figures for Canada, USA and Israel refer
to the employment/population ratio.
– Figures for the USA are for 2004.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
14
As this Policy Brief has shown, some of the policies aimed at supporting
carers come with trade-offs (balancing employment goals with financial
support for carers as an example) and these should be borne in mind
when setting-up those measures. This is not to say that an attitude of
“laissez-faire” on the part of policy-makers is the adequate course of ac-
tion as this paper has shown that too many issues remain unresolved or
even unaddressed by current social policies aimed at carers.
Thus, despite the obvious gender dimension associated with informal
care-giving this issue has yet to be tackled by current policies. Concilia-
tion of care duties and work seems to take place despite and not because
of current social policies, which are still a long way from fostering that
conciliation as far as care for dependent elderly is concerned. Respite
care is not yet widespread or made attractive to carers and those in
need of care. While the advantages of conciliating home care services
with informal care seem to have been proven, there are some contradic-
tory policy developments in this respect. Finally, budgetary constraints
made worse by the current economic crisis may push towards delaying
or not providing support measures to carers under the erroneous argu-
ment that care will be provided by them anyway.
This Policy Brief has highlighted a series of societal, demographic and pol-
icy developments that are likely to change informal care as it is currently
provided (i.e. mostly by female relatives of working age). This should not
necessarily be perceived as a potentially harmful evolution as the cur-
rent arrangement probably does not suit many of today’s carers who are
overburdened with demanding care tasks.
The key issue that public policies should therefore address is not to try
to crystallise the current informal care arrangements, but rather to adapt
to the changing conditions. It is not the same if care is provided by daugh-
ters, spouses, people of working age, retired or migrant carers as each
comes with different challenges, but the main point should be that condi-
tions are created for adequate informal care to be available in the future.
While the “disappearance of informal care” may well be an exaggeration,
perhaps the future carer will take on a role more focused on assisting
with Instrumental Activities of Daily Living and emotional support, which
is the area where elderly dependent people feel their needs are the least
met. This would allow the family carer not to have to pay too high a price
on his/her career and well-being by being relieved from some of the
burden of heavy care.
&RÏDÏRIQUE(OFFMANN2ICARDO2ODRIGUESs CARE OF INFORMAL CARERS
POLICY BRIEF APRIL 2010
15
Notes
1 Our definition of informal care refers to help provided to old-age
persons (aged 65 or older) who need permanent (for more than 6
months) assistance in carrying out Activities of Daily Living (ADL) or
Instrumental Activities of Daily Living (IADL), by informal carers that
may be partners/spouses, children or other relatives, neighbours or
friends, although a pre-existing social relationship with the person
cared for is not required.
2 Comprising tasks such as cooking, laundering, housecleaning or manag-
ing one’s medications.
References
Attias-Donfut, C./ Ogg, J./ Wolff, F. (2005) ‘Family Support’, in: Börsch-
Supan, A./ Brugiavini, A./ Jürges, H./ Mackenbach, J./ Siegrist, J./ Weber, G.
(eds.) Health, Ageing and Retirement in Europe – First Results from the
Survey of Health, Ageing and Retirement in Europe. Mannheim: MEA.
Available at: http://www.share-project.org/t3/share/fileadmin/
pdf_documentation/FRB1/CH4.pdf.
Bonsang, E. (2009) ‘Does Informal Care from Children to Their Elderly
Parents Substitute for Formal Care in Europe?’, Journal of Health
Economics, 28 (1): 143-154.
Doran, T./ Drever, F./ Whitehead, M. (2003) ‘Health of Young and Elderly
Informal Carers: Analysis of UK Census Data’, British Medical Journal,
327: 1388. Available at: http://www.bmj.com/cgi/reprint/327/7428/1388.
Eurobarometer (2007) Health and Long-term Care in the European Union,
Special Eurobarometer 283, European Commission. Available at:
http://ec.europa.eu/public_opinion/archives/ebs/ebs_283_en.pdf.
Huber, M./ Rodrigues, R./ Hoffmann, F./ Gasior, K./ Marin, B. (2009)
Facts and Figures on Long-Term Care – Europe and North America. Vienna:
European Centre for Social Welfare Policy and Research.
Kröger, T./ Silipa, J. (2005) Overstretched European Families Up Against the
Demands of Work and Care. Oxford: Blackwell.
Lamura, G./ Mnich, E./ Döhner, H. (2006) “Future of Informal Care of
Older People in Europe: Trends and Challenges”, paper presented at
the International Workshop on the Contribution of ICTs to Equal Op-
portunities and Work-life Balance of Informal Carers for Older People,
Brussels, November 30, 2006. Available at: http://www.einclusion-eu.
org/ShowDocument.asp?CaseDocumentID=98.
Leichsenring, K./ Ruppe, G./ Rodrigues, R./ Huber, M. (2009) “Long-Term
Care and Social Services in Austria”, paper prepared for the Workshop
on Social and Long-term Care at the World Bank Office in Vienna.
Vienna: European Centre for Social Welfare Policy and Research.
OECD (2005) Long-term Care for Older People. Paris: OECD.
Walker, A. (1999) Attitudes To Population Ageing In Europe, A Compari-
son of the 1992 and 1999 Eurobarometer Surveys. Sheffield: University
of Sheffield, UK. Available at: http://ec.europa.eu/public_opinion/
archives/ebs/ebs_129_en.pdf.
POLICY BRIEF APRIL 2010
EUROPEAN CENTRE
s
EUROISCHES ZENTRUM
s
CENTRE EUROPÉEN
FOR SOCIAL WELFARE POLICY AND RESEARCH FÜR WOHLFAHRTS POLITIK U N D SOZIALF ORSCHUNG DE R EC H E RCHE E N PO L ITIQU E SOCIAL
About the European Centre
for Social Welfare Policy and Research
Core Functions
s !NINTERNATIONALCENTREOFAPPLIEDSOCIALSCIENCEANDCOMPARATIVE
empirical research on social policy and welfare
s !NINFORMATIONANDKNOWLEDGECENTREPROVIDINGSOCIALSCIENCE
supported social policy intelligence through a think-net
s !PLATFORMINITIATINGFUTUREORIENTEDPUBLICPOLICYDEBATESONSOCIALWELFARE
issues within the UN-European Region
Research Focus
The European Centre provides expertise in the fields of welfare and social
policy development in a broad sense – in particular in areas where multi-or
interdisciplinary approaches, integrated policies and inter-sectoral action
are called for.
European Centre expertise includes issues of demographic development,
work and employment, incomes, poverty and social exclusion, social
security, migration and social integration, human security, care, health and
well-being through the provision of public goods and personal services. The
focus is on the interplay of socio-economic developments with institutions,
public policies, monetary transfers and in-kind benefits, population needs
and the balance of rights and obligations.
European Centre Publications
s "OOK3ERIESh0UBLIC0OLICYAND3OCIAL7ELFAREv!SHGATE!LDERSHOT
in English
s "OOK3ERIESh7OHLFAHRTSPOLITIKUND3OZIALFORSCHUNGv#AMPUS6ERLAG&RANK-
furt/New York), in German
s /THER"OOK0UBLICATIONSBOOKSORSPECIALREPORTSPUBLISHEDOUTSIDETHEABOVE
series, with a variety of established publishing houses and in various languages.
s h/CCASIONAL2EPORTSvCONTAINCONFERENCEOREXPERTMEETINGSYNTHESESRE-
ports resulting from projects, etc. , in English / French / German
s 4HE%UROPEAN#ENTRE.EWSLETTERIN%NGLISH
Geographical Domain
All governments of States that are members of the United Nations, in particular
those of countries of the UN-European Region, are invited to participate in and
contribute to the activities of the European Centre. This results in a geographi-
cal domain of potential Member Countries of more than 50 European nations as
well as the United States of America, Canada and Israel.
The European Centre is a
UN-affiliated intergovernmental
organization concerned with all
aspects of social welfare policy and
research.
More information:
http://www.euro.centre.org
European Centre
for Social Welfare
Policy and Research
Berggasse 17
A – 1090 Vienna
Tel: +43 / 1 / 319 45 05 - 0
Fax: +43 / 1 / 319 45 05 - 19
Email: ec@euro.centre.org
... Other dimensions in uencing the link between care and social participation concern individual and contextual factors. Evidence on inequalities in care found that lower socioeconomic resources are associated with a higher incidence of older adults' care provision within the household, and that approximately two thirds of care is performed by women (Hoffmann & Rodrigues, 2010;Hong Ong et al., 2024;Quashie et al., 2022). Furthermore, a recent systematic review which included 15 studies investigating care and various health outcomes revealed that female carers were more negatively affected by the care tasks than male carers (Bom et al., 2019). ...
Preprint
Full-text available
Providing care in older age to family members and friends is common but this could impact the carers’ time and energy for social participation. This study explores the relationship between care and social participation in 16 European countries, considering factors like care intensity, relationship to the care recipient, gender, and socioeconomic status. The study utilised pooled data from the Survey of Health Ageing and Retirement in Europe and the English Longitudinal Study of Ageing. Multiple regression models assessed the association between care status (non-carer, carer, and former carer) and social participation measured through volunteering frequency and group membership. The models adjusted for various demographic and socioeconomic covariates. The study found that carers, especially those doing so less intensely, were more likely to volunteer and belong to groups compared to non-carers. The association between care and volunteering was stronger for carers in low support countries. The association between care and group membership was found to be stronger for carers in the highest wealth quintiles, as well as for female carers in low support countries and for male carers in low and medium support counties. The study suggests that caring is not necessarily associated with negative outcomes such as lower social participation but underscores the impact of care strain and burden resulting from high intensity of care as risk factors for reduced social participation. Furthermore, the study highlights the importance of considering the individual and contextual socioeconomic resources in understanding carers' social participation outcomes.
... Since informal care within the familial context is primarily provided by women (Hoffmann and Rodrigues, 2010;Lee and Tang, 2015;Marrades-Puig, 2024), the degree of (de)familialism promoted by long-term care policies has gendered implications. Frequently, long-term care measures that foster extra-familial care are discussed as increasing gender equality, as they liberate women from caregiving responsibilities (Lister, 1994;McLaughlin and Glendinning, 1994). ...
Article
Full-text available
The formal employment of family caregivers represents a rather uncommon form of organising long-term care but exists in diverse welfare states. Against this background, we examine how family carers experience a formalisation of previously unpaid care by drawing on two Austrian employment programmes and discuss their larger implications with regard to the (de)familialisation of long-term care responsibilities. Depending on the welfare state context, employment models might either provide freedom of choice with regard to the preferred care arrangement and strengthen a right to care or contribute to the enforcement of family care and thereby reinforce pressures on caregiving relatives.
... Rodrigues, 2010). Working in such a complex and unpredictable environment can be challenging for informal caregivers, affecting their personal, professional, financial, and social life (e.g., poverty, and social isolation), which is reflected in their health and wellbeing (e.g., anxiety, depression, and burnout) (Schulz et al., 2020, for a review).Moreover, some studies (e.g., Abojabel & Werner, 2019;Kinnear et al., 2016;McGown & Braithwaite, 1992;Yip & Chan, 2022;Zwar et al., 2020) have recognized informal caregivers as targets of courtesy stigma (i.e., negative stereotypes, prejudice, and discrimination from the general public due to their association with a stigmatized individual or group) (Goffman, 1963). ...
Article
Informal caregivers, who provide unpaid care work to individuals with disabilities, are devalued despite their important contributions to society. Identifying the factors contributing to their devaluation is crucial for recognizing and valuing their work. In two experimental studies, we examined (a) whether informal caregivers are dehumanized; (b) the moderating impact of belief in a just world (BJW) on this process; and (c) the predictive impact of BJW and the dehumanization of informal caregivers on the perception of informal caregivers’ suffering. In Study 1 (N = 180), a 2 (informal caregiver vs. non-caregiver) X 2 (female vs. male) between-participants design was used; in Study 2 (N = 205), there were two experimental conditions: Female informal caregiver vs. male informal caregiver. Participants were randomly assigned to one description of a target and were asked to complete measures assessing the dehumanization of the target (Studies 1 and 2), the perception of the suffering of the target (Study 2), and a measure of BJW referring to them (Study 2). Results showed the expected dehumanization effect, such that participants attributed fewer uniquely human emotions to informal caregivers compared to non-caregivers, regardless of their gender (Studies 1 and 2). However, this effect was observed only among participants with higher BJW (Study 2). Furthermore, BJW and the dehumanization of informal caregivers predicted the minimization of the perception of informal caregivers’ suffering (Study 2). These results establish a theoretical relationship between these research areas and offer insights for practical implications and future research.
... However, our current review indicates a gap in the research regarding the detection of bodily responses to stimuli on outdoor walking paths using wearable sensors, specifically among informal carers. Future research should focus on this target population, as they play a significant role in providing health and social care services to elderly or disabled individuals [22]. ...
... For family members of both COVID-19 patients and other hospitalised patients, worry, anxiety, and uncertainty are common, and they have reported an increased need for information from care providers during the pandemic [8]. Relatives play an important role for individuals sufering from acute or chronic illness for shorter or longer periods of time, and the informal caregiving provided by relatives has been described as the backbone of care provision [9]. In addition to ofering their afection and support, relatives sometimes take on more demanding tasks or responsibilities related to the nursing care, treatment, or rehabilitation of their loved one [10,11], highlighting relatives' roles as important partners in many areas of patient care. ...
Article
Full-text available
Introduction. Little is known about how shifting hospital visitor restrictions issued by national health authorities were communicated, managed, and adapted by hospital charge nurses during the COVID-19 pandemic. Aims. To describe the shifting visitor restrictions and the passing on of restrictions from the national authority level to charge nurses and secondly describe charge nurses’ management of the restrictions and their challenges when enforcing them. Methods. The study consisted of a document analysis and a cross-sectional survey including open-ended questions. Descriptive statistics and qualitative content analysis were used. The survey was distributed online to 88 charge nurses in somatic units in a Danish university hospital from March 2020 to April 2021. Results. Restrictions were communicated from national authority level in an effective administrative cascade. The charge nurses led their enforcement in each unit. In total, 71 charge nurses (81%) responded to the survey. For 70%, the wording of the restrictions was clear, while 31% found them challenging to handle. On a weekly or daily basis, 68% of the charge nurses deviated from the restrictions. They identified both upsides and downsides to the absence of relatives. Communication, collaboration, and leadership were experienced as key tools in the ongoing processes of adapting to shifting restrictions. Conclusion. During this severe health crisis, essential information was passed on through well-defined management levels in an effective communication pathway. Charge nurses and their professional values were challenged when balancing shifting national restrictions against individual needs of patients and relatives. Implications for Nursing Management. Charge nurses serve as vital intermediaries between national authorities and frontline nursing practice in managing shifting visitor restrictions during a pandemic. Their experiences can contribute to further qualifying nurse managers’ considerations when designing family-centred hospital visitor policies for the future. Also, they may strengthen the handling of future sudden major organizational changes.
Article
This article aims to describe support services for informal carers and identify the characteristics of the care recipient and municipality that are associated with the allocation of these services. Care recipients were selected from the Norwegian Registry for Primary Health Care on 31 December 2019. Cases received care benefits ( N = 9,816), respite care in institutions ( N = 2,594) or respite care at home ( N = 7,346); controls received home-based services only ( N = 193,402). Municipal data were retrieved from the Municipality-State-Reporting register. Child and adolescent care recipients most often received support services, but allocation to this age group differed extensively between municipalities. Greater cognitive disability and cohabiting increased the odds of support services.
Preprint
Informal or unpaid caregivers, commonly known as family caregivers, are responsible for providing the 80% of long-term care in Europe, which constitutes a significant portion of health and social care services offered to elderly or disabled individuals. However, the demand for informal care among the elderly is expected to outnumber available supply by 2060. The increasing decline in the caregiver-to-patient ratio is expected to lead to a substantial expansion in the integration of intelligent assistance within general care. The aim of this systematic review was to thoroughly investigate the most recent advancements in AI-enabled technologies, as well as those encompassed within the broader category of assistive technology (AT), which are designed with the primary or secondary goal to assist informal carers. The review sought to identify the specific needs that these technologies fulfill in the caregiver’s activities related to the care of older individuals, the identification of caregivers’ needs domains that are currently neglected by the existing AI-supporting technologies and ATs, as well as shedding light on the informal caregiver groups that are primarily targeted by those currently available. Three databases (Scopus, IEEE Xplore, ACM Digital Libraries) were searched. The search yielded 1002 articles, with 24 articles that met the inclusion and exclusion criteria. Our results showed that AI-powered technologies significantly facilitate ambient assisted living (AAL) applications, wherein the integration of home sensors serves to improve remote monitoring for informal caregivers. Additionally, AI solutions contribute to improve care coordination between formal and informal caregivers, that could lead to advanced telehealth assistance. However, limited research on assistive technologies like robots and mHealth apps suggests further exploration. Future AI-based solutions and assistive technologies (ATs) may benefit from a more targeted approach to appeasing specific user groups based on their informal care type. Potential areas for future research also include the integration of novel methodological approaches to improve the screening process of conventional systematic reviews through the automation of tasks using AI-powered technologies based on active learning approach.
Article
Informal or unpaid caregivers, commonly known as family caregivers, are responsible for providing the 80% of long-term care in Europe, which constitutes a significant portion of health and social care services offered to elderly or disabled individuals. However, the demand for informal care among the elderly is expected to outnumber available supply by 2060. The increasing decline in the caregiver-to-patient ratio is expected to lead to a substantial expansion in the integration of intelligent assistance within general care. The aim of this systematic review was to thoroughly investigate the most recent advancements in AI-enabled technologies, as well as those encompassed within the broader category of assistive technology (AT), which are designed with the primary or secondary goal to assist informal carers. The review sought to identify the specific needs that these technologies fulfill in the caregiver’s activities related to the care of older individuals, the identification of caregivers’ needs domains that are currently neglected by the existing AI-supporting technologies and ATs, as well as shedding light on the informal caregiver groups that are primarily targeted by those currently available. Three databases (Scopus, IEEE Xplore, ACM Digital Libraries) were searched. The search yielded 1002 articles, with 24 articles that met the inclusion and exclusion criteria. Our results showed that AI-powered technologies significantly facilitate ambient assisted living (AAL) applications, wherein the integration of home sensors serves to improve remote monitoring for informal caregivers. Additionally, AI solutions contribute to improve care coordination between formal and informal caregivers, that could lead to advanced telehealth assistance. However, limited research on assistive technologies like robots and mHealth apps suggests further exploration. Future AI-based solutions and assistive technologies (ATs) may benefit from a more targeted approach to appeasing specific user groups based on their informal care type. Potential areas for future research also include the integration of novel methodological approaches to improve the screening process of conventional systematic reviews through the automation of tasks using AI-powered technologies based on active learning approach.
Article
Full-text available
Family caregivers take on a variety of tasks when caring for relatives in need of care. Depending on the situation and the intensity of care, they may experience multidimensional burdens, such as physical, psychological, social, or financial stress. The aim of the present study was to identify and appraise self-assessment instruments (SAIs) that capture the dimensions of family caregivers’ burdens and that support family caregivers in easily identifying their caregiving role, activities, burden, and needs. We performed an integrative review with a broad-based strategy. A literature search was conducted on PubMed, Google Scholar, Google, and mobile app stores in March 2020. After screening the records based on the eligibility criteria, we appraised the tools we found for their usefulness for family care and nursing practice. From a total of 2654 hits, 45 suitable SAIs from 274 records were identified and analyzed in this way. Finally, nine SAIs were identified and analyzed in detail based on further criteria such as their psychometric properties, advantages, and disadvantages. They are presented in multi-page vignettes with additional information for healthcare professionals. These SAIs have proven useful in assessing the dimensions of caregiver burden and can be recommended for application in family care and nursing practice.
Article
Full-text available
Neformalni negovatelj je svaka osoba koja pruža negu – obično bez naknade – drugoj osobi sa hroničnom bolešću, invaliditetom ili drugom potrebom za dugotrajnom negom. Neformalni negovatelji su potpuno neprepoznati u pravnom sistemu Republike Srbije. Shodno tome, u Srbiji ne postoje zvanični podaci o broju neformalnih negovatelja. Postoje brojni aspekti neformalne brige koji predstavljaju izazov. Narušena ravnoteža između poslovnog i privatnog života može uticati na sposobnost neformalnih negovatelja da učestvuju na tržištu rada i održavaju društvene kontakte. Ovo može dalje dovesti do socijalne isključenosti i rizika od siromaštva. Konačno, zdravlje i dobrobit neformalnih negovatelja takođe mogu biti pogođeni. COVID-19 kriza dodatno je razotkrila fundamentalne nedostatke u sistemu zbrinjavanja starijih osoba i slabosti u regulisanju pružanja neformalne nege. Koristeći ograničene raspoložive podatke o neformalnoj nezi u Srbiji, komparativne podatke i primere o položaju neformalnih negovatelja, članak nastoji da prevashodno doprinese otvaranju društvene debate o položaju neformalnih negovatelja, potencijalnoj formalizaciji njihovog položaja i ponudi preporuke za unapređenje položaja, a pre svega kada se radi o nezi starije populacije.
Article
Full-text available
Concern has been mounting about the health and welfare of people who provide informal care for family or friends with chronic illness. In particular, young and elderly people—vulnerable groups in their own right—may be carrying a heavy burden. The extent of the problem is not well known because estimates have been pieced together from ad hoc local studies and household sample surveys. These estimated that young carers in the United Kingdom numbered between 10 000 and 50 000,1 and that about one in 20 older people in Great Britain spent long hours caring for sick family members.2 In 2001, for the first time, the decennial UK census asked the entire population about caring responsibilities and general self rated health. We analysed the answers to these …
Book
Overstretched provides fresh perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis, offering an opportunity to discuss and evaluate care policies in a new light. - A collection of essays providing new perspectives on the reality of European family life where care and paid work need to be woven together on a daily basis. - Focuses on families who live under strained conditions, such as lone parent families, immigrant families, and families who care simultaneously for both their children and an elderly family member. - Based on interviews with families from Finland, France, Italy, Portugal and the UK. - Develops methods for doing comparative qualitative analysis in practice. - Offers new insights into the problems of gender balance in caring, and the significance of cultural notions and working hours. - Offers an opportunity to discuss and evaluate care policies in a new light.
Article
This paper analyzes the impact of informal care by adult children on the use of long-term care among the elderly in Europe and the effect of the level of the parent's disability on this relationship. We focus on two types of formal home care that are the most likely to interact with informal care: paid domestic help and nursing care. Using recent European data emerging from the Survey on Health, Ageing and Retirement in Europe (SHARE), we build a two-part utilization model analyzing both the decision to use each type of formal care or not and the amount of formal care received by the elderly. Instrumental variables estimations are used to control for the potential endogeneity existing between formal and informal care. We find endogeneity of informal care in the decision to receive paid domestic help. Estimation results indicate that informal care substitutes for this type of formal home care. However, we find that this substitution effect tends to disappear as the level of disability of the elderly person increases. Finally, informal care is a weak complement to nursing care, independently of the level of disability. These results highlight the heterogeneous effects of informal care on formal care use and suggest that informal care is an effective substitute for long-term care as long as the needs of the elderly are low and require unskilled type of care. Any policy encouraging informal care to decrease long-term care expenditures should take it into account to assess its effectiveness.
Health and Long-term Care in the European Union, Special Eurobarometer 283, European Commission Available at
Eurobarometer (2007) Health and Long-term Care in the European Union, Special Eurobarometer 283, European Commission. Available at: http://ec.europa.eu/public_opinion/archives/ebs/ebs_283_en.pdf.
Long-term Care for Older People
  • Oecd
OECD (2005) Long-term Care for Older People. Paris: OECD.
Attitudes To Population Ageing In Europe, A Comparison of the 1992 and
  • A Walker
Walker, A. (1999) Attitudes To Population Ageing In Europe, A Comparison of the 1992 and 1999 Eurobarometer Surveys. Sheffield: University of Sheffield, UK. Available at: http://ec.europa.eu/public_opinion/ archives/ebs/ebs_129_en.pdf.
Long-Term Care and Social Services in Austria", paper prepared for the Workshop on Social and Long-term Care at the World Bank Office in Vienna
  • K Leichsenring
  • G Ruppe
  • R Rodrigues
  • M Huber
Leichsenring, K./ Ruppe, G./ Rodrigues, R./ Huber, M. (2009) "Long-Term Care and Social Services in Austria", paper prepared for the Workshop on Social and Long-term Care at the World Bank Office in Vienna. Vienna: European Centre for Social Welfare Policy and Research.
Future of Informal Care of Older People in Europe: Trends and Challenges", paper presented at the International Workshop on the Contribution of ICTs to Equal Opportunities and Work-life Balance of Informal Carers for Older People
  • G Lamura
  • E Mnich
  • H Döhner
Lamura, G./ Mnich, E./ Döhner, H. (2006) "Future of Informal Care of Older People in Europe: Trends and Challenges", paper presented at the International Workshop on the Contribution of ICTs to Equal Opportunities and Work-life Balance of Informal Carers for Older People, Brussels, November 30, 2006. Available at: http://www.einclusion-eu. org/ShowDocument.asp?CaseDocumentID=98.
Ageing and Retirement in Europe-First Results from the Survey of Health, Ageing and Retirement in Europe
  • C Attias-Donfut
  • J Ogg
  • F Wolff
Attias-Donfut, C./ Ogg, J./ Wolff, F. (2005) 'Family Support', in: BörschSupan, A./ Brugiavini, A./ Jürges, H./ Mackenbach, J./ Siegrist, J./ Weber, G. (eds.) Health, Ageing and Retirement in Europe-First Results from the Survey of Health, Ageing and Retirement in Europe. Mannheim: MEA. Available at: http://www.share-project.org/t3/share/fileadmin/ pdf_documentation/FRB1/CH4.pdf.