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Erschienen in: Zeitschrift für Gerontologie und Geriatrie 5/2018

14.06.2017 | Original Contribution

Access to community care for people with dementia and their informal carers

Case vignettes for a European comparison of structures and common pathways to formal care

verfasst von: A. Bieber, A. Stephan, H. Verbeek, F. Verhey, L. Kerpershoek, C. Wolfs, M. de Vugt, R. T. Woods, J. Røsvik, G. Selbaek, B. M. Sjölund, A. Wimo, L. Hopper, K. Irving, M. J. Marques, M. Gonçalves-Pereira, E. Portolani, O. Zanetti, Prof. Dr. G. Meyer

Erschienen in: Zeitschrift für Gerontologie und Geriatrie | Ausgabe 5/2018

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Abstract

Background

People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.

Objectives

Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.

Materials and methods

The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.

Results

A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.

Conclusion

Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.
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Literatur
1.
Zurück zum Zitat Alexander CS, Becker HJ (1978) The use of vignettes in survey research. Public Opin Qart 42(1):93–104CrossRef Alexander CS, Becker HJ (1978) The use of vignettes in survey research. Public Opin Qart 42(1):93–104CrossRef
3.
Zurück zum Zitat Andersen RM, Newman JF (2005) Societal and individual determinants of medical care utilization in the United States. Milbank Q 83(4):1–28CrossRef Andersen RM, Newman JF (2005) Societal and individual determinants of medical care utilization in the United States. Milbank Q 83(4):1–28CrossRef
4.
Zurück zum Zitat Baumgardt J, Radisch J, Touil E, Moock J, Plewig HJ, Kawohl W, Rössler W (2014) Aspekte der Nachhaltigkeit in der ambulanten Versorgung von Menschen mit Demenz. Psychiatr Prax 41(8):424–431CrossRefPubMed Baumgardt J, Radisch J, Touil E, Moock J, Plewig HJ, Kawohl W, Rössler W (2014) Aspekte der Nachhaltigkeit in der ambulanten Versorgung von Menschen mit Demenz. Psychiatr Prax 41(8):424–431CrossRefPubMed
5.
Zurück zum Zitat Bökberg C, Ahlström G, Leino-Kilpi H, Soto-Martin ME, Cabrera E, Verbeek H, Saks K, Stephan A, Sutcliffe C, Karlsson S (2015) Care and service at home for persons with dementia in Europe. J Nurs Scholarsh 47(5):407–416CrossRefPubMed Bökberg C, Ahlström G, Leino-Kilpi H, Soto-Martin ME, Cabrera E, Verbeek H, Saks K, Stephan A, Sutcliffe C, Karlsson S (2015) Care and service at home for persons with dementia in Europe. J Nurs Scholarsh 47(5):407–416CrossRefPubMed
6.
Zurück zum Zitat Brodaty H, Thomson C, Thompson C, Fine M (2005) Why caregivers of people with dementia and memory loss don’t use services. Int J Geriatr Psychiatry 20(6):537–546CrossRefPubMed Brodaty H, Thomson C, Thompson C, Fine M (2005) Why caregivers of people with dementia and memory loss don’t use services. Int J Geriatr Psychiatry 20(6):537–546CrossRefPubMed
7.
Zurück zum Zitat Carpentier N, Pomey MP, Contreras R, Olazabel I (2008) Social care interface in early-stage dementia: practitioners’ perspectives on the links between formal and informal networks. J Aging Health 20(6):710–738CrossRefPubMed Carpentier N, Pomey MP, Contreras R, Olazabel I (2008) Social care interface in early-stage dementia: practitioners’ perspectives on the links between formal and informal networks. J Aging Health 20(6):710–738CrossRefPubMed
8.
Zurück zum Zitat Carpentier N, Grenier A (2012) Successful linkage between formal and informal care systems: the mobilization of outside help by caregivers of persons with Alzheimer’s disease. Qual Health Res 22(10):1330–1344CrossRefPubMed Carpentier N, Grenier A (2012) Successful linkage between formal and informal care systems: the mobilization of outside help by caregivers of persons with Alzheimer’s disease. Qual Health Res 22(10):1330–1344CrossRefPubMed
9.
Zurück zum Zitat Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) Early community-based service utilization and its effects on institutionalization in dementia caregiving. Gerontologist 45(2):177–185CrossRefPubMed Gaugler JE, Kane RL, Kane RA, Newcomer R (2005) Early community-based service utilization and its effects on institutionalization in dementia caregiving. Gerontologist 45(2):177–185CrossRefPubMed
10.
Zurück zum Zitat Hallberg IR, Leino-Kilpi H, Meyer G, Raamat K, Martin MS, Sutcliffe C, Zabalegui A, Zwakhalen S, Karlsson S (2013) Dementia care in eight european countries: developing a mapping system to explore systems. J Nurs Scholarsh 45(4):412–424CrossRefPubMed Hallberg IR, Leino-Kilpi H, Meyer G, Raamat K, Martin MS, Sutcliffe C, Zabalegui A, Zwakhalen S, Karlsson S (2013) Dementia care in eight european countries: developing a mapping system to explore systems. J Nurs Scholarsh 45(4):412–424CrossRefPubMed
11.
Zurück zum Zitat Hofmann W (2013) Demenz im Akutkrankenhaus: Was war neu 2012? Eine Literaturübersicht. Z Gerontol Geriatr 46(3):198–202CrossRefPubMed Hofmann W (2013) Demenz im Akutkrankenhaus: Was war neu 2012? Eine Literaturübersicht. Z Gerontol Geriatr 46(3):198–202CrossRefPubMed
12.
Zurück zum Zitat Karlsson S, Bleijlevens M, Roe B, Saks K, Martin MS, Stephan A, Suhonen R, Zabalequi A, Hallberg IR, RightTimePlaceCare Consortium (2014) Dementia care in European countries, from the perspective of people with dementia and their caregivers. J Adv Nurs 71(6):1405–1416CrossRefPubMed Karlsson S, Bleijlevens M, Roe B, Saks K, Martin MS, Stephan A, Suhonen R, Zabalequi A, Hallberg IR, RightTimePlaceCare Consortium (2014) Dementia care in European countries, from the perspective of people with dementia and their caregivers. J Adv Nurs 71(6):1405–1416CrossRefPubMed
13.
Zurück zum Zitat Kerpershoek L, de Vugt M, Wolfs C, Jelley H, Orrel M, Woods B, Stephan A, Bieber A, Meyer G, Engedal K, Selbaek G, Handels R, Wimo A, Hopper L, Irving K, Marques M, Gonçalves-Pereira M, Portolani E, Zanetti O, Verhey F, Actifcare Consortium (2016) Access to timely formal dementia care in Europe: protocol of the Acticare (ACess to Timely Formal Care) study. BMC Health Serv Res 16(1):423CrossRefPubMedPubMedCentral Kerpershoek L, de Vugt M, Wolfs C, Jelley H, Orrel M, Woods B, Stephan A, Bieber A, Meyer G, Engedal K, Selbaek G, Handels R, Wimo A, Hopper L, Irving K, Marques M, Gonçalves-Pereira M, Portolani E, Zanetti O, Verhey F, Actifcare Consortium (2016) Access to timely formal dementia care in Europe: protocol of the Acticare (ACess to Timely Formal Care) study. BMC Health Serv Res 16(1):423CrossRefPubMedPubMedCentral
14.
Zurück zum Zitat Khanassov V, Vedel I (2016) Family physician-case manager collaboration and needs of patients with dementia and their Caregivers: a systematic mixed studies review. Ann Fam Med 14(2):166–177CrossRefPubMedPubMedCentral Khanassov V, Vedel I (2016) Family physician-case manager collaboration and needs of patients with dementia and their Caregivers: a systematic mixed studies review. Ann Fam Med 14(2):166–177CrossRefPubMedPubMedCentral
16.
Zurück zum Zitat Low LF, White F, Jeon YH, Gresham M, Brodaty H (2013) Desired characteristics and outcomes of community care services for persons with dementia: What is important according to clients, service providers and policy? Australas J Ageing 32(2):91–96CrossRefPubMed Low LF, White F, Jeon YH, Gresham M, Brodaty H (2013) Desired characteristics and outcomes of community care services for persons with dementia: What is important according to clients, service providers and policy? Australas J Ageing 32(2):91–96CrossRefPubMed
17.
Zurück zum Zitat Mayring P (2014) Qualitative Content Analysis: theoretical foundation, basic procedures and software solutions. Beltz, Klagenfurt Mayring P (2014) Qualitative Content Analysis: theoretical foundation, basic procedures and software solutions. Beltz, Klagenfurt
18.
Zurück zum Zitat Morgan DG, Walls-Ingram S, Cammer A, O’Connell ME, Crossley M, Dal Bello-Haas V, Forbes D, Innes A, Kirk A, Stewart N (2014) Informal caregivers’ hope and expectations of a referral to a memory clinic. Soc Sci Med 102:111–118CrossRefPubMed Morgan DG, Walls-Ingram S, Cammer A, O’Connell ME, Crossley M, Dal Bello-Haas V, Forbes D, Innes A, Kirk A, Stewart N (2014) Informal caregivers’ hope and expectations of a referral to a memory clinic. Soc Sci Med 102:111–118CrossRefPubMed
19.
Zurück zum Zitat Nakanishi M, Nakashima T (2014) Features of the Japanese national dementia strategy in comparison with international dementia policies: How: should a national dementia policy interact with the public health- and social care system. Alzheimers Dement 10(4):468–476CrossRefPubMed Nakanishi M, Nakashima T (2014) Features of the Japanese national dementia strategy in comparison with international dementia policies: How: should a national dementia policy interact with the public health- and social care system. Alzheimers Dement 10(4):468–476CrossRefPubMed
20.
Zurück zum Zitat Phillips KA, Morrison KR, Andersen R, Aday LA (1998) Understanding the context of healthcare utilization: assessing environmental and provider-related variables in the behavioral model of utilization. Health Serv Res 33(3):571–596PubMedPubMedCentral Phillips KA, Morrison KR, Andersen R, Aday LA (1998) Understanding the context of healthcare utilization: assessing environmental and provider-related variables in the behavioral model of utilization. Health Serv Res 33(3):571–596PubMedPubMedCentral
22.
Zurück zum Zitat Rimmer E, Wojciechowska M, Sgana A, O’Connell B (2005) Implications of The Facing Dementia Survey for the general population, patients and caregivers across Europe. International J Clin Pract 59(146):17–24CrossRef Rimmer E, Wojciechowska M, Sgana A, O’Connell B (2005) Implications of The Facing Dementia Survey for the general population, patients and caregivers across Europe. International J Clin Pract 59(146):17–24CrossRef
23.
Zurück zum Zitat Robinson KM, Buckwalter KC, Reed D (2005) Predictors of use of services among dementia caregivers. West J Nurs Res 27(2):126–140CrossRefPubMed Robinson KM, Buckwalter KC, Reed D (2005) Predictors of use of services among dementia caregivers. West J Nurs Res 27(2):126–140CrossRefPubMed
24.
Zurück zum Zitat Saks K, Tiit EM, Verbeek H, Raamal K, Armolik A, Leibur J, Meyer G, Zabalegui A, Leino-Kilpi H, Karlsson S, Soto M, Tuckler S (2015) Most appropriate placement for people with dementia: individual experts vs. expert groups’ decisions in eight European countries. J Adv Nur 71(6):1363–1377CrossRef Saks K, Tiit EM, Verbeek H, Raamal K, Armolik A, Leibur J, Meyer G, Zabalegui A, Leino-Kilpi H, Karlsson S, Soto M, Tuckler S (2015) Most appropriate placement for people with dementia: individual experts vs. expert groups’ decisions in eight European countries. J Adv Nur 71(6):1363–1377CrossRef
25.
Zurück zum Zitat Schoenmakers B, Buntinx F, Delepeleire J (2009) What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative? Scand J Prim Health Care 27(1):31–40CrossRefPubMedPubMedCentral Schoenmakers B, Buntinx F, Delepeleire J (2009) What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative? Scand J Prim Health Care 27(1):31–40CrossRefPubMedPubMedCentral
27.
Zurück zum Zitat Thyrian JR, Hoffmann W (2012) Dementia care and general physicians – a survey on prevalence, means, attitudes and recommendations. Cent Eur J Public Health 20(4):270–275PubMedCrossRef Thyrian JR, Hoffmann W (2012) Dementia care and general physicians – a survey on prevalence, means, attitudes and recommendations. Cent Eur J Public Health 20(4):270–275PubMedCrossRef
28.
Zurück zum Zitat Thyrian JR, Eichler T, Pooch A, Albuerne K, Dreier A, Michalowsky B, Wucherer D, Hoffmann W (2016) Systematic, early identification of dementia and dementia care management are highly appreciated by general physicians in primary care – results within a cluster-randomized-controlled trial (DelpHi). J Multidiscip Healthc 19(9):183–190CrossRef Thyrian JR, Eichler T, Pooch A, Albuerne K, Dreier A, Michalowsky B, Wucherer D, Hoffmann W (2016) Systematic, early identification of dementia and dementia care management are highly appreciated by general physicians in primary care – results within a cluster-randomized-controlled trial (DelpHi). J Multidiscip Healthc 19(9):183–190CrossRef
29.
Zurück zum Zitat Toseland RW, McCallion P, Gerber T, Banks S (2002) Predictors of health and human services use by persons with dementia and their family caregivers. Soc Sci Med 55(7):1255–1266CrossRefPubMed Toseland RW, McCallion P, Gerber T, Banks S (2002) Predictors of health and human services use by persons with dementia and their family caregivers. Soc Sci Med 55(7):1255–1266CrossRefPubMed
30.
Zurück zum Zitat Turner S, Iliffe S, Downs M, Wilcock J, Bryans M, Levin E, Keady J, O’Carrol R (2004) General practitioners’ knowledge, confidence and attitudes in the diagnosis and management of dementia. Age Ageing 33(5):461–467CrossRefPubMed Turner S, Iliffe S, Downs M, Wilcock J, Bryans M, Levin E, Keady J, O’Carrol R (2004) General practitioners’ knowledge, confidence and attitudes in the diagnosis and management of dementia. Age Ageing 33(5):461–467CrossRefPubMed
Metadaten
Titel
Access to community care for people with dementia and their informal carers
Case vignettes for a European comparison of structures and common pathways to formal care
verfasst von
A. Bieber
A. Stephan
H. Verbeek
F. Verhey
L. Kerpershoek
C. Wolfs
M. de Vugt
R. T. Woods
J. Røsvik
G. Selbaek
B. M. Sjölund
A. Wimo
L. Hopper
K. Irving
M. J. Marques
M. Gonçalves-Pereira
E. Portolani
O. Zanetti
Prof. Dr. G. Meyer
Publikationsdatum
14.06.2017
Verlag
Springer Medizin
Erschienen in
Zeitschrift für Gerontologie und Geriatrie / Ausgabe 5/2018
Print ISSN: 0948-6704
Elektronische ISSN: 1435-1269
DOI
https://doi.org/10.1007/s00391-017-1266-7

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