European Parliament Interest Group on Carers
Exploring the potential of an EU-level carers strategy
European Parliament - Brussels, 15 October 2013
The need for a EU-level carers strategy:
facts and figures
Giovanni Lamura
(researcher at INRCA & Eurocarers vice-president for research)
INRCA - Italian National Institute of Health and Science on Ageing
Centre for Socio-Economic Research on Ageing, Ancona, Italy;
e-mail: g.lamura@inrca.it
Contents of presentation
1.
Definition of carer
2.
Carers are the backbone of long-term care…
3.
… but are increasingly “under pressure”!
4.
Impact of such “pressure”
5.
Are we currently doing enough?
6.
Final remarks
Who is an (informal) “carer”?
A carer is any person who provides care
- usually unpaid - to someone with a
chronic illness, disability or other long
lasting health or care need, outside a
professional or formal employment
framework.
“Carers are the backbone of our
(long-term) care systems”
“About 80% of care across the EU is provided
by spouses, daughters, other relatives and
friends...”
People aged 65 and older receiving care (cash or
in-kind), by care setting (2009)
Fonte: Rodrigues et al 2012
Areas of need for which older people are
completely dependent on others for help (in %)
domestic care
care organisation
emotional support
health care
transportation
personal care
financial support
0
10
20
30
40
50
60
70
Provision-mix in domestic care (in %)
Sweden
Italy
UK
Germany
Greece
Poland
0
10
20
30
formal only
40
50
both
60
70
80
90
family only
100
Provision-mix in emotional/psychological care (%)
Sweden
Italy
Germany
UK
Greece
Poland
0
10
20
30
formal only
40
50
both
60
70
80
90
family only
100
Provision-mix in transportation services (%)
Sweden
Germany
Italy
UK
Greece
Poland
0
10
20
30
formal only
40
50
both
60
70
80
90
family only
100
Over 50 population providing informal care
Source: Rodrigues et al. 2012
CLICK TO
EDITon
MASTER
Female
carers
total TITLE
carersSTYLE
of older people (%)
GREECE
ITALY
GERMANY
POLAND
UK
SWEDEN
60
© 2012 Ipsos
65
70
75
80 %
FOR INTERNAL USE ONLY
85
11
Population
forTITLE
an STYLE
older or disabled
CLICK TO EDITcaring
MASTER
relative at least once or twice a week (EU-28)
Age:
18-24
Male
11
Female
10
All
10
25-34
8
11
9
35-49
13
20
17
50-64
16
23
20
65+
8
10
9
12
16
14
12
Source: Anderson 2013
© 2012 Ipsos
FOR INTERNAL USE ONLY
12
The “economic” value of informal care
Estimates on the economic value of unpaid
informal care in EU Member States range
from 50 to 90 percent of the overall costs of
formal long-term care provision.
Estimated value of contribution made by
carers in the UK: 140 Mrd € per year.
Estimated value of contribution made by
carers in Ireland: 5,3 Mrd € per year (27% of
Dept. of social protection’s budget)
Source: www.carersuk.org/media/k2/attachments/Valuing_carers_2011___Carers_UK.pdf
Informal carers: an indispensable component
of sustainable care systems…
Carers are currently an indispensable component
of the provision, organisation and sustainability of
our health and social care systems;
➜ without informal carers, formal care provision
would simply be unsustainable, and many care
needs neglected!
… and even more so in the next future!
Carers will become even more important in
view of growing health and long-term care
needs, due to population ageing and the
increasing prevalence of frailty and chronic
disease.
… and even more so in the next future!
But availability of informal care
is under pressure, too!
This is due to a number of demographic and
socio-economic developments:
1. lower birth rates
2. smaller families
3. greater physical distances between relatives
4. rising number of women entering the labour
market
5. a prolonged working life.
Old-age support ratio
(15-64 year old / over 65 year old) (2012)
15
10
5
0
Source: United Nations 2012
Latin America
Oceania
20
Europe
25
North America
30
Africa
Asia
Age structure of EU-27 population
Source: Pearce et al 1999
Over 65 year old population living in multigenerational
households (3 or more generations) (2010)
Living distance from parents in some EU countries
Source: Isengard 2013
Employment status of family carers by country
Greece
Italy
Germany
Employed
Not employed
UK
Poland
Sweden
0
10
20
30
40
50
60
70
80
90 100
Change in labour-force participation by European women
aged 55-64 years between 2000 and 2010
Source: Rachel et al. 2013
2.5
Change in employment rate in 55-64 year old
population in 2009-2011
2.3
2.2
1.9
1.5
1
2
3
4
5
6
7
8
9
10
1.3
1.1
1
0.9
0.8
0.4
0.4
-0.8
-0.8
-1
11
-1.1
12
-1.3
Source: Pearce et al 1999
EU27
EU25
EU15
Poland
Malta
Germany
Belgium
Hungary
France
Sweden
Italy
Slovakia
Finland
Denmark
Luxembourg
Estimated shortages in some health care
professions in the EU by 2020
Source: European Commmission 2012
Impact of such pressure
1. At the micro-individual level: for carers
themselves
2. At the macro-societal level: for the labour
market and for the health and social care
systems.
Carers’ main motivations to provide care
All
emotional bonds / love
96,8
96,3
90,5
96,6
94,1
92,6
94,5
a sense of duty
89,3
73,3
79,5
67,7
91,6
85,8
81,4
sense of obligation towards
elder as a family member
91,4
57,4
75,6
73,6
93,7
90,9
80,6
caring for elder makes me feel
good
81,5
56,4
61,9
83,4
77,2
84,2
74,0
elder would not wish anyone
else to care for them
43,5
45,4
62,9
46,1
53,6
62,1
52,3
there was no alternative
53,2
30,3
46,0
45,5
45,4
64,4
47,6
I found myself caring by chance
without a decision
37,8
31,5
61,5
65,3
32,3
29,5
42,7
my religious beliefs
40,0
38,0
22,6
8,2
67,7
24,7
33,9
high cost of formal care
43,8
31,1
30,2
14,8
34,4
45,1
33,5
economic benefits
8,0
4,3
8,7
13,2
8,1
12,3
9,1
What factors influence carers’ decision to care?
All
emotional bonds / love
96,8
96,3
90,5
96,6
94,1
92,6
94,5
a sense of duty
89,3
73,3
79,5
67,7
91,6
85,8
81,4
sense of obligation towards
elder as a family member
91,4
57,4
75,6
73,6
93,7
90,9
80,6
caring for elder makes me feel
good
81,5
56,4
61,9
83,4
77,2
84,2
74,0
elder would not wish anyone
else to care for them
43,5
45,4
62,9
46,1
53,6
62,1
52,3
there was no alternative
53,2
30,3
46,0
45,5
45,4
64,4
47,6
I found myself caring by chance
without a decision
37,8
31,5
61,5
65,3
32,3
29,5
42,7
my religious beliefs
40,0
38,0
22,6
8,2
67,7
24,7
33,9
high cost of formal care
43,8
31,1
30,2
14,8
34,4
45,1
33,5
economic benefits
8,0
4,3
8,7
13,2
8,1
12,3
9,1
Frequency of negative effects due to caregiving
caregiving is too demanding
worse emotional well-being
feeling "trapped" in carer role
difficulties with friends
worse physical health
difficulties with own family
financial difficulties
0
10
Always
20
30
Often
40
50
60
Sometimes
70
Frequency of elder abuse by family carers
Different definitions and methodologies in collecting
data lead to divergent findings in terms of
prevalence of elder abuse perpetrated by family
caregivers (NCEA 2002). Taking for instance physical
abuse:
•5% (Paveza et al 1992);
•6% (Pillemer & Suiter 1992);
•11% (Compton et al. 1997);
•12% of all callers to a help line for caregivers (Coyne et
al 1993);
•23% of non-spousal carers (Wolf 1996).
Risk factors for carer’s burden
(odds-ratio=probability for carer to experience high burden)
Carer's poor health status
Reduced working hours
Carer's lack of support network
Carer's age
Hours of care/week
Hours of care on week-ends
Nights of care/week
Elder behavioural disturbances
Elder physical disability
0
1
2
3
4
5
6
7
Potential risk factors for “neglect”
(% of carers’ willingness to continue caregiving)
reduced working hours
poor health
3-5 nights of care/week
economic motivation to care
elder behavioural disturbances
carer's lack of support network
0
2
only with more support
4
6
8
10 12 14
no, in no case
% of households suffering financial
catastrophe from health related expenditures
Source: Scheil-Adlung & Kuhl 2011
34
Restrictions reported by employed carers
Germany
Greece
Sweden
UK
reduced working hours
occasional work
Italy
career problems
Poland
0
N = 4427; only carers <= 65 years
5
10
15
20
%
25
35
Restrictions reported by not employed carers (in %)
UK
Greece
Germany
Italy
cannot work at all
had to give up work
Poland
can't develop professionally
can work only occasionally
Sweden
0
Source: Lamura et al. 2008
5
10
15
20
25
N = 2093; only carers <= 65 years
Are we currently doing
enough
for carers in Europe?
Use of specific support services for carers (%)
Socio-psychological support
Information
Respite care
Training for carers
Assessment of caring situation
Other specific services for carers
0
2
4
6
8
10
Carers using support services, by country
Germany
UK
Sweden
Poland
Italy
Greece
0
5
10
15
20
25
30
35
40 % 45
Cycle of QoL in carers of relatives with incontinence:
powerlessness ➜ acceptance ➜ burden
QoLQoL
for for
carers
ofofrelatives
withincontinent
incontinence
over time
carers
relatives with
over time
Powerlessness
(13.02) (n=87)
Acceptance
(14.27) (n=122) **
Q1. For how long have you been taking care of [INSERT RELATIVE FROM S5D]? Base n=304
Burden
(12.12) (n=95)
Statistical significance: **: p<.05
Service characteristics considered most important
0
%
Help arrives when it is needed
Respect of elder's dignity
Improving elder's QoL
Care workers' skills
Help at promised time
Help not too expensive
Help focuses on both
Dignity of carer
Help fits in carer's routine
Same care worker
Carer is listened to
Improving carers' QoL
5 10 15 20 25 30 35 40 45 50 55
Migrant care workers in selected countries
•
•
•
Austria: two thirds of home care workers with migration background
Germany: estimates of 100.000 care migrants
Denmark: 11% of all LTC workers have a migration background
UK: 19% of care workers are foreign-born
• Israel: Currently about 1out of 3 frail elderly persons employ a
migrant live-in homecare worker, hired through the LTCI scheme
• Italy: 13% of households older people employ migrant LTC workers
• Greece: 26% of migrants (80% of women) are employed in
households
• Spain: permits for domestic work to foreigners: from 32% in 2000 to
over 61% in 2009;
• Turkey: “it’s normal to employ Moldovan [& Bulgarian] domestic
workers in private households”.
• Canada & US: foreign workers: one fifth of total LTC workforce
•
Migrant home carers in Italy by contractual conditions
other
2%
no answer
4%
unlimited
contract
22%
short-term
contract
11%
Without
regular
contract
61%
Most burdening difficulties experienced by
migrant care workers
emotional and psychological tension
fear that something might happen
physical burden
to see the older person in this (bad) condition
lack/reduction of spare time
cannot get out of home
lack of rest
lack/reduction of friendships
Lucchetti et al. 2005
0
5
10 15 20 25 30 35% 40
Migrant care workers: opportunities & challenges
Opportunities:
– economic convenience: to both recipients and migrants (low
housing costs, wage differentials & “black market”)
– publicly incentivated by increasing cash-for-care schemes
– tailored care: personalised response to elders and carers
– delayed or lower institutionalisation rates
Challenges:
– quality of care: qualification of migrant care workers
– labour market: control of undeclared work
– exploitation of migrant care workers: overlap with gender
– care drain in sending countries: who provides care there?
Final remarks
1. While carers are crucial to ensure a socially and
economically sustainable support to people in need of care...
2. … carers get little recognition for the valuable work they
do…
3. … and their interests are rarely considered in policies that
can actually heavily impact on them (health, social care,
education, employment, social security, transportation,
housing, new techonologies etc.)
4. At the macro level, if informal care provision is not properly
supported, it can result in lower productivity for those carers
that combine care and work…\
5. … and lead to increasing health and welfare costs, due to
carers’ physical and mental health problems related to
unmonitored caregiving constraints.
That’s why it’s necessary...
• to continue raising awareness on the significant
contribution made by carers to our welfare systems and the
economy as a whole, and the need to safeguard this
contribution
• to ensure that EU and national policies take account of
carers (e.g. by promoting their social inclusion)
• to further develop support services for carers and to
enable carers to remain in paid employment...
In one word: to urgently adopt a coherent, integrated
approach – that is, a STRATEGY – to mainstream
caregiving across all major policy areas, starting at EU
level, to ensure that all Member States are made equally
aware about the necessity of such a crucial commitment!
Thank you!
References
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