Hynes, C., Hodges, V., Wyld, L. orcid.org/0000-0002-4046-5940 et al. (1 more author) (2022) Cancer treatment decisions for people living with dementia: experiences of family carers, a qualitative interview study. Health Expectations, 25 (3). pp. 1131-1139. ISSN 1369-7625
Abstract
Background
As the UK population ages, the prevalence of both dementia and cancer will increase. Family carers of people with dementia who are subsequently diagnosed with cancer are often involved in treatment decisions about cancer. These decisions are uniquely challenging.
Objectives
To explore the experience of carers involved in cancer treatment decisions for people with dementia.
Design
A cross-sectional qualitative interview study with inductive thematic analysis.
Setting and Participants
Sixteen carers of people with dementia were identified via Primary Care Research Networks and the Join Dementia Research database.
Results
Three main themes were derived: ‘already at breaking point’, which describes the extreme strain that carers were already under when the cancer diagnosis was made; ‘maintaining the status quo’, which describes how despite the gravity of a cancer diagnosis, avoiding further dementia-related deterioration was of prime importance; and ‘LPA’, which explores the benefits and frustrations of the use of lasting powers of attorney.
Discussion
Current services are ill-equipped to deal with people who have a combination of dementia and cancer. Proxy decisions about cancer care are made in the context of carer stress and exhaustion, which is exacerbated by shortcomings in service provision.
Conclusions
As the prevalence of comorbid cancer and dementia rises, there is an urgent need to improve services that support carers with proxy health care decision-making.
Patient or Public Contribution
The study design was codeveloped with a local dementia-specific patient and public involvement (PPI) group. A project-specific PPI group was formed with support from the Alzheimer's Society Research Partnership scheme to provide further bespoke input.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, (http://creativecommons.org/licenses/by/4.0/) which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
Keywords: | cancer; carers; comorbidity; dementia; proxy decision making; shared decision making |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Human Metabolism (Sheffield) The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Oncology (Sheffield) |
Funding Information: | Funder Grant number ROYAL COLLEGE OF GENERAL PRACTITIONERS nan |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 18 Mar 2022 13:51 |
Last Modified: | 08 Jun 2022 01:33 |
Status: | Published |
Publisher: | Wiley Open Access |
Refereed: | Yes |
Identification Number: | 10.1111/hex.13466 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:184949 |