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Health services research
Research
Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals
  1. Frances Bunn1,
  2. Anne-Marie Burn1,
  3. Louise Robinson2,
  4. Marie Poole2,
  5. Greta Rait3,
  6. Carol Brayne4,
  7. Johan Schoeman5,
  8. Sam Norton6,
  9. Claire Goodman1
  1. 1Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, Hertfordshire, UK
  2. 2Institute for Health and Society, Newcastle University, Newcastle, UK
  3. 3Research Department of Primary Care and Population Health, UCL Medical School (Royal Free Campus), London, UK
  4. 4Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
  5. 5Department of Psychology, Institute of Psychiatry, King's College London, London, UK
  6. 6East London Foundation Trust, London, UK
  1. Correspondence to Dr Frances Bunn; f.bunn{at}herts.ac.uk

Abstract

Objectives People living with dementia (PLWD) have a high prevalence of comorbidty. The aim of this study was to explore the impact of dementia on access to non-dementia services and identify ways of improving service delivery for this population.

Design Qualitative study involving interviews and focus groups. Thematic content analysis was informed by theories of continuity of care and access to care.

Setting Primary and secondary care in the South and North East of England.

Participants PLWD who had 1 of the following comorbidities—diabetes, stroke, vision impairment, their family carers and healthcare professionals (HCPs) in the 3 conditions.

Results We recruited 28 community-dwelling PLWD, 33 family carers and 56 HCPs. Analysis resulted in 3 overarching themes: (1) family carers facilitate access to care and continuity of care, (2) the impact of the severity and presentation of dementia on management of comorbid conditions, (3) communication and collaboration across specialities and services is not dementia aware. We found examples of good practice, but these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD.

Conclusions This study suggests that, in order to improve access and continuity for PLWD and comorbidity, a significant change in the organisation of care is required which involves: coproduction of care where professionals, PLWD and family carers work in partnership; recognition of the way a patient's diagnosis of dementia affects the management of other long-term conditions; flexibility in services to ensure they are sensitive to the changing needs of PLWD and their family carers over time; and improved collaboration across specialities and organisations. Research is needed to develop interventions that support partnership working and tailoring of care for PLWD and comorbidity.

  • QUALITATIVE RESEARCH
  • DIABETES & ENDOCRINOLOGY
  • comorbidity
  • vision impairment

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/bmjopen-2016-013067

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    Footnotes

    • Twitter Follow Frances Bunn @bunn_f

    • Contributors FB, CG, CB, GR, LR, JS and SN wrote the protocol. A-MB, FB and MP collected and analysed the data. JS recruited patients. FB wrote the first draft of the manuscript. All authors contributed to the writing of the manuscript and approved its content. FB (the manuscript's guarantor) affirms that the manuscript is a honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

    • Funding This article presents independent research commissioned by the National Institute for Health Research (NIHR) under HS&DR (grant reference number 11/1017/07).

    • Disclaimer The views expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

    • Competing interests FB reports grants from the UK National Institute of Health Research during the conduct of the study. CG reports personal fees from the National Institute for Health Research (NIHR) during the conduct of the study.

    • Ethics approval Ethical approval was obtained from NRES Committee East of England. REC reference 13/EE/0091.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional data are available.