Transcript Future of informal carer of older people in Europe: trends

Presentation for the meeting of the FERPA Executive Committee,
Brussels, 28-29 October 2008
Elder abuse and family care of older people in Europe:
some reflections based on EUROFAMCARE and related findings
Lamura G.*, Mnich E., Wojszel B., Krevers B., McKee K., Mestheneos L.,
Melchiorre M.G., Principi A., Fabbietti P. & Döhner H.
on behalf of the EUROFAMCARE research group
*: Address for correspondence: I.N.R.C.A., Department of Gerontological Research,
Via S. Margherita 5, 60124, Ancona, Italy; e-mail: [email protected]
The EUROFAMCARE (EFC) group
Germany: Döhner H. (Co-ordinator), Kofahl C., Lüdecke D., Mnich E., Kohler S., Lange N.,
Seidl K., Meyer M. (Hamburg) and Rothgang H., Becker R., Timm A., Knorr K.,
Lessmann O. (Bremen);
Greece: Mestheneos E., Triantafillou J., Prouskas C., Kontouka S., Goltsi V., Loukissis A.,
Mestheneou K.;
Italy:
Lamura G., Balducci C., Melchiorre M.G., Quattrini S., Spazzafumo L., Polverini
F., Principi A., Gianelli M.V.;
Poland: Bien B., Wojszel B., Synak B., Czekanowski P., Bledowski P., Pedich W.;
Sweden: Öberg B., Krevers B., Johansson S.L., Davidson T.;
UK:
McKee K., Nolan M., Barber L., Brown J.;
AGE-European Older People's Platform: Parent A.-S., Patel J., Daurèle C., Pflüger K.,
Thorpe E.
The EUROFAMCARE study (2004-2005):
- topic: situation of supports for family carers of older people in EU
- methodology: survey based on 6.000 face-to-face interviews
- web-site: www.uke.uni-hamburg.de/eurofamcare
Contents of presentation
1. Family carer’s burden and elder abuse: introduction
2. Risk factors for carer’s burden and potential
situations of neglect
3. Final remarks
Family carer’s burden and elder abuse: introduction
1. Family care is the most relevant form of support
provided to dependent older people in the community
(often continuing even after institutionalisation).
Family carer’s burden and elder abuse: introduction
1. Family care is the most relevant form of support provided to
dependent older people in the community (often continuing
even after institutionalisation).
2. Most people provide family care for positive
motivations, such as love, affection and emotional
bonds, and derive from it positive feelings.
What factors influence families’ 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
43,5 45,4 62,9 46,1 53,6 62,1
else to care for them
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
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
8,2
13,2
8,1
12,3
9,1
Family carer’s burden and elder abuse
1. Family care represents the most relevant form of support
provided to dependent older people living in the community
(often continuing when the older person is institutionalised).
2. Most people provide family care for positive motivations,
such as love, affection and emotional bonds, and derive
from it positive feelings.
3. Sometimes, however, family care becomes the only
solution available, i.e. no longer a “free choice”…
What factors influence families’ 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
43,5 45,4 62,9 46,1 53,6 62,1
else to care for them
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
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
8,2
13,2
8,1
12,3
9,1
Family carer’s burden and elder abuse
1. Family care represents the most relevant form of support
provided to dependent older people living in the community
(often continuing when the older person is institutionalised).
2. Most people provide family care for positive motivations,
such as love, affection and emotional bonds, and derive
from it positive feelings.
3. Sometimes, however, family care becomes the only solution
available, due to a feeling of duty/obligation towards the
older person or the lack of care alternatives.
4. For these and other reasons, family care might become
then also a stressful, burdening experience…
Carers’ burden in the EUROFAMCARE study
Components identified by carers as responsible
for a “negative impact” of caregiving:
 negative effects on physical health and
emotional well-being;
 difficulties in relations with family and friends;
 financial difficulties;
 sensation that caregiving is “too demanding”
and makes carers “feel trapped”.
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
Family carer’s burden and elder abuse
1. Family care represents the most relevant form of support
provided to dependent older people living in the community
(often continuing when the older person is institutionalised).
2. Most people provide family care for positive motivations,
such as love, affection and emotional bonds, and derive
from it positive feelings.
3. Sometimes, however, family care becomes the only solution
available, due to a feeling of duty/obligation towards the
older person or the lack of care alternatives.
4. For these and other reasons, family care might become then
a stressful, burdening experience…
5. … leading to the abuse of the older person who is
actually supposed to be cared for.
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).
Elder abuse and caregiver’s burden: risk factors
1. Risk factors for elder abuse often represent predictors
of caregiver’s stress and burden as well.
Caregiver burden and elder abuse: risk factors
Different studies suggest that risk factors for carer’s
burden and stress also predict elder abuse (Anetzberger
1987; Compton et al. 1997; Paveza et al 1992; Coyne et
al 1993; Pillemer & Suiter 1992), with regard to:
• cohabitation;
• amount of care provided;
• care recipient’s behavioural disturbances;
• carer’s depression & low self-esteem;
• carers’ subjective perception of (past) relationship with
care recipient (including situations of “mutual abuse”);
• carer’s feeling about help received from support
networks.
Elder abuse and caregiver’s burden: risk factors
1. Risk factors for elder abuse often represent predictors of
caregiver’s burden and stress.
2. Interventions able to reduce carer’s burden are likely to
have a preventive effect on elder abuse, too.
The framework of elder abuse and carer’s burden
Risk
factors
(+)
Carer’s
burden
Preventing (-)
factors
Carer’s
stress
Elder
abuse
Elder abuse and caregiver’s burden: risk factors
1. Risk factors for elder abuse often represent predictors of
caregiver’s burden as well.
2. Interventions able to reduce carer’s burden are likely to have
a preventive effect on elder abuse, too.
3. By means of a scale measuring the frequency of
negative caregiving aspects, we could identify some
factors which increase the probability for carers to
experience high burden.
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
average
0
only with more support
2
4
6
8
10 12 14
no, in no case
Potential risk for “neglect” by country
(% of carers unwilling to continue caregiving)
Sweden
Greece
Germany
UK
Italy
Poland
0
2
4
only with more support
6
8
no, in no case
10
22
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
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 10
24
Restrictions reported by not employed carers
UK
Greece
Germany
Italy
cannot work at all
had to give up work
Poland
can't develop professionally
can work only occasionally
Sweden
0
N = 2093; only carers <= 65 years
5
10
15
20
% 25
Carers using support services, by country
Germany
UK
Sweden
Poland
Italy
Greece
0
5
10
15
20
25
30
35
40 % 45
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
Households employing
privately paid migrant home care workers
ITALY
GREECE
UK
GERMANY
POLAND
SWEDEN
0
2
4
6
8
10
12 % 14
Migrant home carers in Italy by kind of employment contract
other
2%
no answer
4%
unlimited
contract
22%
short-term
contract
11%
Lucchetti et al. 2005
Without
regular
contract
61%
Thank you!