Barriers and facilitators to the access to and use of formal dementia care: Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

Astrid Stephan, Anja Bieber, Louise Hopper, Rachael Joyce, Kate Irving, Orazio Zanetti, Elisa Portolani, Liselot Kerpershoek, Frans Verhey, Marjolein De Vugt, Claire Wolfs, Siren Eriksen, Janne Røsvik, Maria J. Marques, Manuel Gonçalves-Pereira, Britt Marie Sjölund, Hannah Jelley, Bob Woods, Gabriele Meyer, Ron Handels & 12 others Anja Broda, Gabriele Bartoszek, Bob T. Woods, Martin Orrell, Anders Wimo, Anders Sköldunger, Knut Engedal, Geir Selbæk, Mona Michelet, M. Conceição Balsinha, Helena Bárrios, Ana Machado

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Abstract

Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Original languageEnglish
Article number131
JournalBMC Geriatrics
Volume18
Issue number1
DOIs
Publication statusPublished - 4 Jun 2018

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Focus Groups
Caregivers
Dementia
Delivery of Health Care
Case Management

Keywords

  • Dementia
  • Focus groups
  • Formal care
  • Informal carer
  • Person with dementia
  • Utilisation

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Stephan, Astrid ; Bieber, Anja ; Hopper, Louise ; Joyce, Rachael ; Irving, Kate ; Zanetti, Orazio ; Portolani, Elisa ; Kerpershoek, Liselot ; Verhey, Frans ; De Vugt, Marjolein ; Wolfs, Claire ; Eriksen, Siren ; Røsvik, Janne ; Marques, Maria J. ; Gonçalves-Pereira, Manuel ; Sjölund, Britt Marie ; Jelley, Hannah ; Woods, Bob ; Meyer, Gabriele ; Handels, Ron ; Broda, Anja ; Bartoszek, Gabriele ; Woods, Bob T. ; Orrell, Martin ; Wimo, Anders ; Sköldunger, Anders ; Engedal, Knut ; Selbæk, Geir ; Michelet, Mona ; Conceição Balsinha, M. ; Bárrios, Helena ; Machado, Ana. / Barriers and facilitators to the access to and use of formal dementia care : Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. In: BMC Geriatrics. 2018 ; Vol. 18, No. 1.
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abstract = "Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.",
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author = "Astrid Stephan and Anja Bieber and Louise Hopper and Rachael Joyce and Kate Irving and Orazio Zanetti and Elisa Portolani and Liselot Kerpershoek and Frans Verhey and {De Vugt}, Marjolein and Claire Wolfs and Siren Eriksen and Janne R{\o}svik and Marques, {Maria J.} and Manuel Gon{\cc}alves-Pereira and Sj{\"o}lund, {Britt Marie} and Hannah Jelley and Bob Woods and Gabriele Meyer and Ron Handels and Anja Broda and Gabriele Bartoszek and Woods, {Bob T.} and Martin Orrell and Anders Wimo and Anders Sk{\"o}ldunger and Knut Engedal and Geir Selb{\ae}k and Mona Michelet and {Concei{\cc}{\~a}o Balsinha}, M. and Helena B{\'a}rrios and Ana Machado",
note = "info:eu-repo/grantAgreement/FCT/3599-PPCDT/135840/PT# This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).",
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Stephan, A, Bieber, A, Hopper, L, Joyce, R, Irving, K, Zanetti, O, Portolani, E, Kerpershoek, L, Verhey, F, De Vugt, M, Wolfs, C, Eriksen, S, Røsvik, J, Marques, MJ, Gonçalves-Pereira, M, Sjölund, BM, Jelley, H, Woods, B, Meyer, G, Handels, R, Broda, A, Bartoszek, G, Woods, BT, Orrell, M, Wimo, A, Sköldunger, A, Engedal, K, Selbæk, G, Michelet, M, Conceição Balsinha, M, Bárrios, H & Machado, A 2018, 'Barriers and facilitators to the access to and use of formal dementia care: Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries' BMC Geriatrics, vol. 18, no. 1, 131. https://doi.org/10.1186/s12877-018-0816-1

Barriers and facilitators to the access to and use of formal dementia care : Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries. / Stephan, Astrid; Bieber, Anja; Hopper, Louise; Joyce, Rachael; Irving, Kate; Zanetti, Orazio; Portolani, Elisa; Kerpershoek, Liselot; Verhey, Frans; De Vugt, Marjolein; Wolfs, Claire; Eriksen, Siren; Røsvik, Janne; Marques, Maria J.; Gonçalves-Pereira, Manuel; Sjölund, Britt Marie; Jelley, Hannah; Woods, Bob; Meyer, Gabriele; Handels, Ron; Broda, Anja; Bartoszek, Gabriele; Woods, Bob T.; Orrell, Martin; Wimo, Anders; Sköldunger, Anders; Engedal, Knut; Selbæk, Geir; Michelet, Mona; Conceição Balsinha, M.; Bárrios, Helena; Machado, Ana.

In: BMC Geriatrics, Vol. 18, No. 1, 131, 04.06.2018.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Barriers and facilitators to the access to and use of formal dementia care

T2 - Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

AU - Stephan, Astrid

AU - Bieber, Anja

AU - Hopper, Louise

AU - Joyce, Rachael

AU - Irving, Kate

AU - Zanetti, Orazio

AU - Portolani, Elisa

AU - Kerpershoek, Liselot

AU - Verhey, Frans

AU - De Vugt, Marjolein

AU - Wolfs, Claire

AU - Eriksen, Siren

AU - Røsvik, Janne

AU - Marques, Maria J.

AU - Gonçalves-Pereira, Manuel

AU - Sjölund, Britt Marie

AU - Jelley, Hannah

AU - Woods, Bob

AU - Meyer, Gabriele

AU - Handels, Ron

AU - Broda, Anja

AU - Bartoszek, Gabriele

AU - Woods, Bob T.

AU - Orrell, Martin

AU - Wimo, Anders

AU - Sköldunger, Anders

AU - Engedal, Knut

AU - Selbæk, Geir

AU - Michelet, Mona

AU - Conceição Balsinha, M.

AU - Bárrios, Helena

AU - Machado, Ana

N1 - info:eu-repo/grantAgreement/FCT/3599-PPCDT/135840/PT# This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG).

PY - 2018/6/4

Y1 - 2018/6/4

N2 - Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

AB - Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

KW - Dementia

KW - Focus groups

KW - Formal care

KW - Informal carer

KW - Person with dementia

KW - Utilisation

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U2 - 10.1186/s12877-018-0816-1

DO - 10.1186/s12877-018-0816-1

M3 - Article

VL - 18

JO - BMC Geriatrics

JF - BMC Geriatrics

SN - 1471-2318

IS - 1

M1 - 131

ER -