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

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Keywords

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

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