Transcript Work Package „Translation“

1
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
7th International
E U R Long-Term
O F A M CCare
A RConference
E
Torun, 21-23 September 2004
EUROFAMCARE
Core
Group
Usage of services supporting family
carers in Europe
PanEuropean
Network
Uni HH-IMS-CKo
G. Lamura, C. Balducci, M.G. Melchiorre, S. Quattrini and L.
Spazzafumo for the EUROFAMCARE group
The EUROFAMCARE group: Germany: Döhner H. (project coordinator), Kofahl C.,
Luedecke D., Mnich E. (Hamburg) and Rothgang H., Becker R. (Bremen); Greece:
Mestheneos E. (PI), Triantafillou J. (PI), Prouskas C., Mestheneos K.; Italy: Lamura G. (PI),
Balducci C., Melchiorre M.G., Quattrini S., Spazzafumo L.; Poland: Bien B. (PI), Wojszel B.,
Synak B., Czekanowski P., Bledowski P.; Sweden: Öberg B. (PI), Krevers B., Johansson S.L.;
United Kingdom: McKee K. (PI), Barber L., Brown J., Nolan M.
2
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
EUROFAMCARE
Contents
• the conceptual framework
Core
Group
• methodology
PanEuropean
Network
• findings (preliminary and descriptive)
• final remarks
Uni HH-IMS-CKo
3
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
EUROFAMCARE
Conceptual framework: main questions
• which services do Older Persons (OP) and their carers
mainly use in Europe?
• do these services meet their needs?
• which services have OP/carers stopped to use, and
why?
• which services do OP/carers need but have never
used, and why?
• what are the main difficulties in accessing services?
• what can be of help in accessing services?
• which types of support are most important for carers?
• which service characteristics are most important to
carers?
Core
Group
PanEuropean
Network
Uni HH-IMS-CKo
4
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Conceptual framework:
the
actors
EUROFA
M Cinvolved
ARE
Voluntary services
Core
Group
Other informal carers
Older Person in need
(needs > resources)
PanEuropean
Network
Uni HH-IMS-CKo
Family carer
(resources etc.)
Public services
Private services
Support
services
to carers
5
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Conceptual framework:
model
E U R O F Athe
M C “causal”
ARE
feedback
Older Person‘s
need
Core
Group
Situation of carer
(employed,
willing to care
etc.
PanEuropean
Network
(Non-)Use of
Services
Carer‘s
“burden“
Financial
resources
Availability and
quality of
services
Uni HH-IMS-CKo
Informal support network
of OP and carer
Carer‘s wellbeing
6
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Conceptual
E U R O framework:
FAMCARE
the welfare state context
Core
Group
SWEDEN:
SOCIAL DEMOCRATIC
MODEL
UK:
MARKET LIBERAL
MODEL
GERMANY:
BISMARKIAN
MODEL
PanEuropean
Network
Uni HH-IMS-CKo
POLAND:
TRANSITION ECONOMY
ITALY:
MEDITERRANEAN
MODEL
GREECE:
MEDITERRANEAN
MODEL
7
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Methodology: Eindicators
for
use
UROFAMC
A Rservice
E
Domains
Indicators
Types of services used
National lists of services
Satisfaction with used services
Has this service met OP/your needs? Mostly yes/no
Core
Group
Costs of services or related to
care
How much do you pay for this service? Any costs for
home adaptation, travel or special medicines?
Frequency and amount of
service use
How often do you use this service? Haw many times
have you used it in the last 6months?
PanEuropean
Network
Needed services stopped to be
used: type and reasons
Possible reasons: too expensive, too distant, low
quality, not available anymore, no longet entitled
Needed but never used services:
type and reasons
Possible reasons: too expensive, too distant, low
quality, didn’t know, not entitled to use it
No use of services: reasons
Open questions recoded
Factors facilitating/hindering service access
Open questions recoded
Importance and availability of different support types
3 levels; mostly yes/no
Importance and availability of different service characteristics
3 levels; mostly yes/no
Uni HH-IMS-CKo
8
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Methodology: EEuropean
list
UROFAMC
A Rof
E services
Services used by Older person
11 Permanent Residential Services (nursing homes, sheltered housing, old people’s home etc.)
21 Temporary residential Medical and Nursing (admission to hospital, etc)
22 Temporary residential Rehabilitation (rehabilitation centres, etc)
23 Temporary residential Social (respite care)
Core
Group
24 Temporary residential Privately paid assistance in temporary residential institutions
31 Ambulatory services Medical and Nursing (nurse, GP, medical specialists, day care centre, diagnostic tests)
32 Ambulatory services Rehabilitation (physiotherapy, occupational therapy, day hospital)
33 Ambulatory services Social/ emotional (social work, help in organising care, counselling, psychologist etc.)
34 Day care centre with either health and social care purposes or both
41 Home based services Medical and Nursing (doctor at home, medical specialists at home, nurse at home etc)
42 Home based services Rehabilitation (physiotherapy at home, occupational therapy at home)
43 Home based services Social/ emotional (social worker visits at home, companionship, care attendant, help lines, etc)
44 Home based services Domestic (help with cooking, cleaning, shopping, laundry, meals on wheels etc)
45 Home based services Personal Care (help with bathing, toileting, hairdressing, nail care etc)
46 Home based services Technical equipment/ aids/ building adaptation (telemedicine, stair lifts, security systems etc)
47 Cohabitant non-family carer
50 Transport services
PanEuropean
Network
Services for carers plus additional services
71 Emotional Support (counselling, social work, family support or self help groups, crisis management)
72 Respite care, Supervision of elder at home
73 Information about the disease, caring, available services and benefits, Help lines, Internet services
74 Training for caring
75 Assessment of caring situation
76 Dedicated services for family carers of different ethnic groups
Uni HH-IMS-CKo
9
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Methodology: from Enational
services
U R O F A to
M CEuropean
ARE
National List of Services for Elderly People
National
Number
European
Category
Core
Group
Ambulatoryjne porady LEKARZA RODZINNEGO [ambulatory
consultations of GP]
Domowe porady LEKARZA RODZINNEGO [consultations of GP at
home]
Usługi pralnicze [laundry service]
PanEuropean
Network
Opłacanie rachunków i innych opłat [paying bills]
Posiłki dostarczane do domu [meals on wheels]
Usługi fryzjera w domu [hairdresser at home]
Usługi transportowe dla osób starszych [Transport services for older
people]
Opiekun spoza rodziny mieszkający z podopiecznym [Cohabitant nonfamily carer]
Dochodzący opiekun spoza rodziny [private carer non-cohabitant]
Uni HH-IMS-CKo
1
31
2
41
29
44
30
44
31
44
32
45
33
50
34
47
35
43
10
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
E U R Oto
FA
MCARE
“Prologue”
findings:
need to differentiate carers
Core
Group
To understand how services can better
address the carers‘ needs, it is necessary to
identify what are the main differences among
carers themselves
PanEuropean
Network
 Need to distinguish carers according to
their well-being and quality of life (see
Barbro Krever‘s presentation)
Uni HH-IMS-CKo
11
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
“Prologue”
to findings / 2:
EUROFAMCARE
3 clusters of carers with different well-being levels
Cluster analysis on national samples based on:
• COPE Index - negative impact sub-scale;
• COPE Index - positive value sub-scale;
• carer’s perceived health status;
• carer’s perceived quality of life (QOL-5);
• carer’s overall rating of quality of life;
Core
Group
PanEuropean
Network
 identified three clusters of carers (total n. = 5.649; missing: 298)
Uni HH-IMS-CKo
• 35,7% carers with higher well-being (n = 2.014);
• 41,3% carers with intermediate well-being (n = 2.333);
• 23,0% carers with lower well-being (n = 1.302).
12
“Prologue” to findings / 3:
EUROFAMCARE
carers clusters by well-being indicators
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Overall QOL (-)
Core
Group
Health status (-)
PanEuropean
Network
1,9
High well-being cluster
ALL
Low well-being cluster
3,1
2,5
3,7
17,6
QOL - 5 (+)
8,8
17,7
Positive value (+)
14,3
8,7
Negative impact
(-)
Uni HH-IMS-CKo
0,0
14,5
5,0
10,0
15,0
20,0
13
“Prologue” to findings / 4:
EUROFAMCARE
carers clusters by country
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Germany
38,3
Sweden
44,2
26,6
17,5
45,2
28,2
Core
Group
Greece
PanEuropean
Network
23,4
UK
20,7
Italy
41,4
44,2
12,4
0%
37,6
37,9
17,4
Poland
Uni HH-IMS-CKo
39,1
38,4
37,8
20%
Low well-being
49,8
40%
60%
ALL
80%
High well-being
100%
14
“Prologue” to findings / 5:
EUROFAMCARE
carers clusters by main characteristics/differences
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
0
10
20
30
40
50
60
70
80
80
80
OP's age
49
OP is severly dependent (%)
Core
Group
21
51
OP has behavioural problems (%)
25
59
Carer's age
51
32
Spouses of elder (%)
PanEuropean
Network
14
58
Cohabitation (%)
43
62
Hours of care per week
35
27
Help from services (%)
23
76
No help from other informal carers (%)
65
32
Carer cannot find help, if ill (%)
Uni HH-IMS-CKo
13
31
Employed (%)
Had to reduce work (%)
90
50
31
9
Low well-being
ALL
High well-being
15
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Findings:
UROFAMCARE
how many careEservices
do OP use? (%)
20
18
16
14
12
10
8
6
4
2
0
Core
Group
PanEuropean
Network
Uni HH-IMS-CKo
0
1
2
3
4
5
6
7
8
9
16
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Findings:
EUROFAMCARE
how many care
services do OP use?
25,0
HIGH WELL-BEING
LOW WELL-BEING
20,0
trend "high"
trend "low"
Core
Group
15,0
PanEuropean
Network
10,0
5,0
0,0
Uni HH-IMS-CKo
0
1
2
3
4
5
6
7
8
9+
17
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Carers (%) by well-being level, country & number of services used
EUROFAMCARE
35,0
CARERS
with LOWER WELL-BEING
30,0
CARERS
with HIGHER WELL-BEING
S
25,0
Core
Group
UK
20,0
All
15,0
PanEuropean
Network
D
10,0
I
5,0
PL
0,0
0
Uni HH-IMS-CKo
1
2
3
4
5
6
7
8 9+
0
1
2
3
4
5
6
7
8 9+
18
EUROFAMCARE: carers (%) in Italy, Sweden and Germany by level of well-being and number of services used by older
person People
Carers (%)
in Italy,
Sweden
byin well-being
levelCoverage
and number
“Services
for Supporting
Familyand
CarersGermany
of Elderly
Europe: Characteristics,
and Usage”
ofEservices
used
UROFA
MCARE
GERMANY
ITALY
25,0
25,0
20,0
20,0
15,0
15,0
10,0
Core
Group
10,0
5,0
5,0
0,0
0,0
0
PanEuropean
Network
1
Uni HH-IMS-CKo
2
3
4
5
6
7
8
0
SWEDEN
9+
1
2
3
4
25,0
20,0
15,0
10,0
5,0
0,0
0
1
2
3
4
5
6
7
8
9+
5
6
7
8
9+
19
“Services (%)
for Supporting
Family
Carers of Elderly
People
Europe: Characteristics,
Carers
in ITALY
by well-being
level
& in
number
of servicesCoverage
used and Usage”
EUROFAMCARE
25,0
HIGH WELL-BEING
LOW WELL-BEING
20,0
trend "low"
trend "high"
Core
Group
15,0
PanEuropean
Network
10,0
5,0
0,0
Uni HH-IMS-CKo
0
1
2
3
4
5
6
7
8
9+
20
“Services(%)
for Supporting
Family Carers
of Elderly
People in Europe:
Characteristics,
Coverage and Usage”
Carers
in GERMANY
by level
of well-being
& number
of services
E U Rused
OFAMCARE
25,0
HIGH WELL-BEING
LOW WELL-BEING
20,0
trend "high"
trend "low"
Core
Group
15,0
PanEuropean
Network
10,0
5,0
0,0
Uni HH-IMS-CKo
0
1
2
3
4
5
6
7
8
9+
21
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Carers
(%) in SWEDEN by well-being level & number of services used
EUROFAMCARE
25,0
HIGH WELL-BEING
LOW WELL-BEING
20,0
trend "high"
trend "low"
Core
Group
15,0
PanEuropean
Network
10,0
5,0
0,0
Uni HH-IMS-CKo
0
1
2
3
4
5
6
7
8
9+
22
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Are there any services
you/OP
E U R Othat
FAM
C A R E still need,
but have STOPPED USING? (% of “YES”)
20,7
Sweden
Core
Group
28,6
8,3
UK
31,1
16,1
Germany
13,1
PanEuropean
Network
10,2
Poland
19,7
Italy
ALL
LOW
14,7
6,2
Greece
Uni HH-IMS-CKo
HIGH
5,3
13,9
0
5
10
15
20
25
30
35
23
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Reasons for stoppingE using
services
(n=723)
U R O Fneeded
AMCAR
E
Poland
51,6
Germany
20,0
46,4
3,1
10,5
20,6
12,6
11,3
5,3
18,6
Core
Group
Greece
37,5
Italy
15,3
33,3
6,1
26,4
22,7
13,9
22,7
6,9
15,2
PanEuropean
Network
Sweden
UK
21,1
15,3
0%
Too expensive
2,8
7,1
20%
Not available any more
Uni HH-IMS-CKo
39,4
23,9
32,7
40%
Too distant
36,7
60%
No longer entitled to use it
80%
Low quality
12,7
8,2
100%
24
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Are there any services that you/OP need,
UROFAMCARE
but have NEVEREUSED
so far? (% of “YES”)
44,0
Germany
31,1
21,7
Poland
Core
Group
37,7
18,7
HIGH
Sweden
PanEuropean
Network
34,4
12,7
ALL
LOW
UK
43,0
22,2
Italy
42,3
17,6
Greece
Uni HH-IMS-CKo
41,7
0,0
5,0
10,0
15,0
20,0
25,0
30,0
35,0
40,0
45,0
25
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
If you use NO SERVICES at all,
EUROFAMCARE
what are the reason
for not accessing them?
Poland (n=304)
65,5
Sweden (n=263)
7,9
60,8
20,9
10,2
4,6 3,6
3,81,9
0
7,5
11,8
Core
Group
Germany (n=345)
61,2
UK (n=192)
13,9
52,6
17,2
13,9
3,6 7,8 2,6
2,9
0,6 7,2
15,7
PanEuropean
Network
Italy (n=177)
47,5
Greece (n=92
27,2
0%
NOT NEEDED
HIGH COSTS
NOT AVAILABLE
OTHER
Uni HH-IMS-CKo
10%
8,5
2,2
20%
30%
13,0
8,7
40%
50%
7,3
10,2 1,1
22,6
21,7
60%
21,8
70%
80%
90%
100%
OP's ATTITUDE
LACK OF INFORMATION
MOBILITY PROBLEMS / BARRIERS
26
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
In your experience, who or what has been the
UROFAMCARE
GREATEST HELP inE accessing
services/support?
Poland
23
Greece
2,6
26,5
8,6 0,9
0,9
13,7
2,7
50,3
33,3
0,3
0
11,1
26,1
Core
Group
Sweden
32,5
UK
4,80,7 6,5 1,4
39,5
34,9
15,1
6,1
5,9
4,5
13,3
14,6
20,2
PanEuropean
Network
Italy
43,7
Germany
43,4
0%
10%
20%
7
4,4
30%
40%
Health care staff
Family, friends and neighbours
Personal experience & knowledge
Other (including "nothing")
Uni HH-IMS-CKo
21,6
11,8
50%
2,7 6,4
60%
2,6
6 0,7
5
70%
18,4
26,3
80%
90%
Social services
Voluntary organisations
Never tried to access services
100%
27
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
In your experience, who or what has caused the
EUROFAMCARE
GREATEST DIFFICULTIES
in accessing services/support?
0%
10%
20%
19,8
2,7
Poland
Core
Group
Greece
Italy
PanEuropean
Network
Germany
17
11,9
2,6
23,4
14,2
40%
8,4
11,4
4,4
4,1
30%
1,7
1,5
12,9
11,4
50%
70%
80%
90%
100%
10,3
15,5
8,1
60%
6,8 0
3,2 4,7 1,8
4,60,33,21,73,6
UK
3,6 4,4
10,3 0,34,4
Sweden
3,1 6,5
6,5 3,31,4 4,9 2
6
9,5
High costs
Lack of information on services
Not accepted by OP
Never tried to access services
Uni HH-IMS-CKo
Bureaucratic/complicated procedures
Long waiting lists
Poor quality of services
Other (including “nothing”)
28
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Has caring resulted in
any
costs?
EU
R Oadditional
F A M C A Rfinancial
E
0%
10%
20%
30%
40%
50%
60%
70%
Greece
Poland
Core
Group
Germany
Italy
PanEuropean
Network
Sweden
UK
Medicines
Travel costs
Adaptation of home environment
Special food
Other costs
Uni HH-IMS-CKo
80%
90%
100%
29
Kind of support retained as "most important" (%)
EUROFAMCARE
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
0
5
10
15
20
25
30
information about support available
advice about disease of elder
activities for elder
holiday break from caring
Core
Group
ALL
less
more money for care
low
changes at home environment
help with planning for the future care
PanEuropean
Network
activities outside caring
combine employment with caregiving
more time with my family
training to develop skills for caring
talk over problems
help to deal with family disagreements
Uni HH-IMS-CKo
attend care support group
high
more
30
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Are these supports currently meeting your needs?
EUROFAMCARE
(% of
“mostly yes”)
0,0
10,0
20,0
30,0
40,0
50,0
60,0
51,8
Germany
40,3
Core
Group
Greece
67,9
36,5
28,8
16,0
35,4
Italy
12,6
55,9
29,9
16,3
39,6
PanEuropean
Network
Poland
80,8
41,8
58,2
25,3
49,9
Sweden
39,6
8,5
70,3
46,4
54,9
UK
35,6
52,2
56,1
70,0
information about support available
advice about disease of elder
holiday break from caring
more money
activities for elder
Uni HH-IMS-CKo
80,0
70,4
48,0
48,9
19,5
70,0
31
Service characteristics retained "most important" (%)
EUROFAMCARE
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
help is available at the time carer needs it most
care workers treat elder with respect
care workers are skilled
help arrives at the time it is promised
Core
Group
ALL
help provided improves elder's quality of life
HIGH WELL BEING
LOW WELL-BEING
help provided is not too expensive
help fits in with the carer's routines
PanEuropean
Network
help focuses on needs of both carer and elder
help is provided by the same care worker each time
care worker treat carer with respect
carer's opinion are listened
help provided improves carer's quality of life
Uni HH-IMS-CKo
0
5
10
15
20
25
30
35
40
32
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Are these supports currently meeting your needs?
EUROFAMCARE
(% of
“mostly yes”)
30,0
40,0
50,0
60,0
70,0
80,0
75,1
90,0
82,9
82,6
Germany
88,5
57,1
49,3
50,0
48,1
Greece
Core
Group
35,6
60,5
63,3
Italy
66,8
75,1
47,2
78,1
78,3
Poland
PanEuropean
Network
83,6
78,3
86,5
59,0
76,8
Sweden
81,0
84,6
91,6
63,7
69,7
UK
Uni HH-IMS-CKo
73,7
72,5
71,3
help is available at the time carer needs it most
help arrives at promised time
care worker are skilled and trained
care worker treat elder with respect
help provided is not too expensive
86,4
33
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
Final
E U Rremarks
OFAMCARE
•
•
analysis related to specific services is required to provide
useful insights for each single country
monetary transfers (care payments and allowances) need to
be taken into account to provide an integrated picture
cross-national variations in service use and preferences
reflect also cultural, legal and economic differences in the
various types of welfare systems
in-depth analysis on determinats of services use and impact
should control for co-existing effects exerted by relevant
variables (such as carer‘s main socio-economic
characteristics, dependency level of cared-for OP, strength of
support netw, regional differences etc.)
one-year follow-up and feed-back discussion with service
providers will provide insights on how to improve the system.
Core
Group
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PanEuropean
Network
Uni HH-IMS-CKo
34
“Services for Supporting Family Carers of Elderly People in Europe: Characteristics, Coverage and Usage”
EUROFAMCARE
Core
Group
DZIĘKUJĘ !
PanEuropean
Network
Uni HH-IMS-CKo