UCL Discovery
UCL home » Library Services » Electronic resources » UCL Discovery

Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives

Rees, JL; Burton, A; Walters, KR; Leverton, M; Rapaport, P; Herat Gunaratne, R; Beresford-Dent, J; (2020) Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives. BMJ Open , 10 (10) , Article e041873. 10.1136/bmjopen-2020-041873. Green open access

[img]
Preview
Text
e041873.full.pdf - Published version

Download (699kB) | Preview

Abstract

OBJECTIVES: To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers. DESIGN: Secondary thematic analysis of 82 semi-structured interviews. SETTING: Community settings across the United Kingdom. PARTICIPANTS: 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff. RESULTS: We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit. CONCLUSION: The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.

Type: Article
Title: Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmjopen-2020-041873
Publisher version: https://doi.org/10.1136/bmjopen-2020-041873
Language: English
Additional information: This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
Keywords: dementia, primary care, qualitative research
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Behavioural Science and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/10112183
Downloads since deposit
12Downloads
Download activity - last month
Download activity - last 12 months
Downloads by country - last 12 months

Archive Staff Only

View Item View Item