“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

Clarissa Giebel, Sarah Robertson, Audrey Beaulen, Sandra Zwakhalen, Dawn Allen and Hilde Verbeek
Additional contact information
Clarissa Giebel: Institute of Population Health Sciences, University of Liverpool, Liverpool L69 3GL, UK
Sarah Robertson: Alderhey NHS Foundation Trust, Liverpool L14 5AB, UK
Audrey Beaulen: Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, 6200 MD Maastricht, The Netherlands
Sandra Zwakhalen: Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, 6200 MD Maastricht, The Netherlands
Dawn Allen: NIHR ARC NWC, Liverpool L69 3GL, UK
Hilde Verbeek: Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, 6200 MD Maastricht, The Netherlands

IJERPH, 2021, vol. 18, issue 22, 1-16

Abstract: Background: Accessing post-diagnostic care can be difficult for people with dementia and their informal carers. Little is known, however, about the determinants of barriers to access, and how these might vary between countries. The aim of this study was to explore potential inequalities in access to formal dementia care services between England and the Netherlands, specifically from more disadvantaged areas. Methods: This was a mixed-methods study, involving semi-structured qualitative interviews and a carer questionnaire. People with dementia and informal carers were recruited by clinicians. The postal survey was co-produced with people with dementia, informal carers, and health care professionals. The survey asked carers about their own and their relatives with dementia’s, social support service usage and financing; as well as how they were made aware of services and whether they required more support. Qualitative transcripts were analysed by two researchers in each country using thematic analysis. Results: A total of 103 carer questionnaires were received by post and 13 interviews were conducted with people with dementia and family carers between January 2020 and April 2020. Many services were accessed via self-funding. Thematic analysis generated five core themes: Health literacy; Having faith and lack of faith; Service suitability; Structural issues surrounding service provision; and Financing care. One major difference between both country’s systems of care were the case manager and network support which people with dementia and carers benefitted from in the Netherlands, which was rarely the case in the UK. Conclusions: People with dementia and informal carers need to be supported better in accessing formal dementia care services in both the UK and the Netherlands, whilst some learning can be taken to improve access.

Keywords: dementia; health inequalities; social support services; social care (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (4)

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Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:18:y:2021:i:22:p:12233-:d:684592

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