Mapping post-diagnostic dementia care in England: an e-survey

Abstract

Purpose: Post-diagnostic dementia care is often fragmented in the UK, with great variation in provision. Recent policies suggest moving towards better community-based care for dementia, however we know little on how this care is delivered. This study aimed to map the post-diagnostic dementia support provided in England a decade after the introduction of a National Dementia Strategy. Design: A mixed-methods e-survey (open Nov 2018-Mar 2019) of dementia commissioners in England, recruited through mailing lists of relevant organisations. We descriptively summarised quantitative data and carried out thematic analysis of open-ended survey responses. Findings: 52 completed responses were received, which covered 82 commissioning bodies, with representation from each region in England. Respondents reported great variation in the types of services provided. Information, caregiver assessments and dementia navigation were commonly reported and usually delivered by the voluntary sector or local authorities. Integrated pathways of care were seen as important to avoid overlap or gaps in service coverage. Despite an increasingly diverse population, few areas reported providing dementia health services specifically for BME populations. Over half of providers planned to change services further within five years. Practical implications: There is a need for greater availability of and consistency in services in post-diagnostic dementia care across England. Originality/value: Post-diagnostic dementia care remains fragmented and provided by a wide range of providers in England.