Optimizing access to and use of formal dementia care

Qualitative findings from the European Actifcare study

Liselot Kerpershoek, Claire Wolfs, Frans Verhey, Hannah Jelley, Bob Woods, Anja Bieber, Gabriele Bartoszek, Astrid Stephan, Geir Selbaek, Siren Eriksen, Britt Marie Sjölund, Louise Hopper, Kate Irving, Maria J. Marques, Manuel Gonçalves-Pereira, Daniel Portolani, Orazio Zanetti, Marjolein Vugt

Research output: Contribution to journalArticle

Abstract

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

Original languageEnglish
Pages (from-to)e814-e823
JournalHealth and Social Care in the Community
Volume27
Issue number5
DOIs
Publication statusPublished - Sep 2019

Fingerprint

dementia
Dementia
Interviews
Social Support
Decision Making
human being
Disease
interview
content analysis
social network
contact
monitoring
decision making
experience

Keywords

  • access to care
  • dementia
  • in-depth interviews
  • informal care
  • service use

Cite this

Kerpershoek, Liselot ; Wolfs, Claire ; Verhey, Frans ; Jelley, Hannah ; Woods, Bob ; Bieber, Anja ; Bartoszek, Gabriele ; Stephan, Astrid ; Selbaek, Geir ; Eriksen, Siren ; Sjölund, Britt Marie ; Hopper, Louise ; Irving, Kate ; Marques, Maria J. ; Gonçalves-Pereira, Manuel ; Portolani, Daniel ; Zanetti, Orazio ; Vugt, Marjolein. / Optimizing access to and use of formal dementia care : Qualitative findings from the European Actifcare study. In: Health and Social Care in the Community. 2019 ; Vol. 27, No. 5. pp. e814-e823.
@article{cc616a382dcc47709815c22768d8ddd8,
title = "Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study",
abstract = "This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.",
keywords = "access to care, dementia, in-depth interviews, informal care, service use",
author = "Liselot Kerpershoek and Claire Wolfs and Frans Verhey and Hannah Jelley and Bob Woods and Anja Bieber and Gabriele Bartoszek and Astrid Stephan and Geir Selbaek and Siren Eriksen and Sj{\"o}lund, {Britt Marie} and Louise Hopper and Kate Irving and Marques, {Maria J.} and Manuel Gon{\cc}alves-Pereira and Daniel Portolani and Orazio Zanetti and Marjolein Vugt",
year = "2019",
month = "9",
doi = "10.1111/hsc.12804",
language = "English",
volume = "27",
pages = "e814--e823",
journal = "Health & Social Care In The Community",
issn = "0966-0410",
publisher = "Blackwell Publishing Ltd",
number = "5",

}

Kerpershoek, L, Wolfs, C, Verhey, F, Jelley, H, Woods, B, Bieber, A, Bartoszek, G, Stephan, A, Selbaek, G, Eriksen, S, Sjölund, BM, Hopper, L, Irving, K, Marques, MJ, Gonçalves-Pereira, M, Portolani, D, Zanetti, O & Vugt, M 2019, 'Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study', Health and Social Care in the Community, vol. 27, no. 5, pp. e814-e823. https://doi.org/10.1111/hsc.12804

Optimizing access to and use of formal dementia care : Qualitative findings from the European Actifcare study. / Kerpershoek, Liselot; Wolfs, Claire; Verhey, Frans; Jelley, Hannah; Woods, Bob; Bieber, Anja; Bartoszek, Gabriele; Stephan, Astrid; Selbaek, Geir; Eriksen, Siren; Sjölund, Britt Marie; Hopper, Louise; Irving, Kate; Marques, Maria J.; Gonçalves-Pereira, Manuel; Portolani, Daniel; Zanetti, Orazio; Vugt, Marjolein.

In: Health and Social Care in the Community, Vol. 27, No. 5, 09.2019, p. e814-e823.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Optimizing access to and use of formal dementia care

T2 - Qualitative findings from the European Actifcare study

AU - Kerpershoek, Liselot

AU - Wolfs, Claire

AU - Verhey, Frans

AU - Jelley, Hannah

AU - Woods, Bob

AU - Bieber, Anja

AU - Bartoszek, Gabriele

AU - Stephan, Astrid

AU - Selbaek, Geir

AU - Eriksen, Siren

AU - Sjölund, Britt Marie

AU - Hopper, Louise

AU - Irving, Kate

AU - Marques, Maria J.

AU - Gonçalves-Pereira, Manuel

AU - Portolani, Daniel

AU - Zanetti, Orazio

AU - Vugt, Marjolein

PY - 2019/9

Y1 - 2019/9

N2 - This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

AB - This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi-structured in-depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross-national analysis. Overall, analysis of the in-depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease-related factors and system-related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care-giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision-making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

KW - access to care

KW - dementia

KW - in-depth interviews

KW - informal care

KW - service use

UR - http://www.scopus.com/inward/record.url?scp=85070981041&partnerID=8YFLogxK

U2 - 10.1111/hsc.12804

DO - 10.1111/hsc.12804

M3 - Article

VL - 27

SP - e814-e823

JO - Health & Social Care In The Community

JF - Health & Social Care In The Community

SN - 0966-0410

IS - 5

ER -