Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks

Claire A Surr,Rachael Kelley,Alys W Griffiths,Laura Ashley,Fiona Cowdell,Ann Henry,Michelle Collinson,Ellen Mason,Amanda J Farrin

doi:10.1016/j.jgo.2020.03.015

Claire A Surr, Rachael Kelley + Show 7 more

Open Access

https://doi.org/10.1016/j.jgo.2020.03.015

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Abstract

ObjectivesDespite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care. Materials and methodsAn ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 h) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis. ResultsPatients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient's willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment. ConclusionsPeople with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.

Highlights

Cancer and dementia can both lead to complex health and care needs and have increasing prevalence with age [1,2]
This paper explores the role of supportive networks in assisting and enabling people with cancer and dementia (CCD) to receive hospital-based cancer treatment and care
Interview topic guides, developed by the research team in collaboration with the study's Lay Advisory Group, asked about participants' experiences of cancer treatment and care for people with CCD. This group was comprised of four people affected by cancer and dementia; three were carers/former carers and one was a person living with both conditions

Summary

Introduction

Cancer and dementia can both lead to complex health and care needs and have increasing prevalence with age [1,2]. Little research has focused on this dual-diagnosis population. International literature provides varying estimates of dementia prevalence in cancer populations [3]. A recent UK large dataset study concluded one in thirteen (7.5%) people aged 75+ with a cancer diagnosis have a. ⁎ Corresponding author at: Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds LS1 3HE, UK. People with comorbid cancer and dementia (CCD) have complex needs, may experience worse outcomes, receive less treatment, and are more likely to experience complications from cancer treatment [5]

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