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

Rachael Frost (Department of Primary Care and Population Health, University College London, London, UK) (University College London, London, UK)
Kate Walters (University College London, London, UK)
Jane Wilcock (University College London, London, UK)
Louise Robinson (Newcastle University, Newcastle upon Tyne, UK)
Karen Harrison Dening (Dementia UK, London, UK)
Martin Knapp (LSE, London, UK)
Louise Allan (University of Exeter, Exeter, UK)
Greta Rait (University College London, London, UK)

Journal of Integrated Care

ISSN: 1476-9018

Article publication date: 30 May 2020

Issue publication date: 5 February 2021

299

Abstract

Purpose

Post-diagnostic dementia care is often fragmented in the United Kingdom, with great variation in provision. Recent policies suggest moving towards better community-based care for dementia; however, little is known 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/methodology/approach

A mixed-methods e-survey (open Nov 2018–Mar 2019) of dementia commissioners in England recruited through mailing lists of relevant organisations was conducted. The authors 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.

Keywords

Acknowledgements

This research was supported by funding from Alzheimer's Society (grant number 331).This review was carried out as part of the Pridem Project. The PriDem Project Team includes co-authors LR, GR, KW, JW, MK, LA and KHD; and also includes Alistair Burns, Claire Bamford, Derek King, Donna Buxton, Greta Brunskill, Jill Manthorpe, Joy Adamson, Laura Booi, Lynne Corner, Raphael Wittenberg, Revd Doug Lewins, Sube Banerjee and Sue Tucker.

Citation

Frost, R., Walters, K., Wilcock, J., Robinson, L., Harrison Dening, K., Knapp, M., Allan, L. and Rait, G. (2021), "Mapping post-diagnostic dementia care in England: an e-survey", Journal of Integrated Care, Vol. 29 No. 1, pp. 22-36. https://doi.org/10.1108/JICA-02-2020-0005

Publisher

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Emerald Publishing Limited

Copyright © 2020, Emerald Publishing Limited

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