"Nobody seems to know where to even turn to": Barriers in accessing and utilising dementia care services in England and The Netherlands

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.