Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study

Ashley, Laura and Kelley, Rachael and Griffiths, Alys and Cowdell, Fiona and Henry, Ann and Inman, Hayley and Hennell, June and Ogden, Margaret and Walsh, Maria and Jones, Liz and Mason, Ellen and Collinson, Michelle and Farrin, Amanda and Surr, Claire (2020) Understanding and identifying ways to improve hospital-based cancer care and treatment for people with dementia: an ethnographic study. Age and Ageing. ISSN 0002-0729

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Background: Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these.
Methods: Two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical-record review. Participants (N=58) were people with dementia and comorbid cancer (n=17), informal caregivers (n=22) and hospital staff (n=19). Ethnographically informed thematic analysis was conducted.
Results: There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical-records; dementia training was limited; and time and resource pressures impeded the highly-individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care
Conclusions: Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

Item Type: Article
Identification Number: https://doi.org/10.1093/ageing/afaa210
10 August 2020Accepted
6 November 2020Published Online
Uncontrolled Keywords: Older people, dementia, cancer, multimorbidity, hospital, qualitative research
Subjects: CAH02 - subjects allied to medicine > CAH02-04 - nursing and midwifery > CAH02-04-01 - nursing (non-specific)
Divisions: Faculty of Health, Education and Life Sciences > School of Nursing and Midwifery
Depositing User: Fiona Cowdell
Date Deposited: 11 Aug 2020 10:48
Last Modified: 03 Mar 2022 15:37
URI: https://www.open-access.bcu.ac.uk/id/eprint/9637

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