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

Abstract

Objectives Despite 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 methods An 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. Results Patients 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. Conclusions People 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.

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

“…The data were analysed as a whole, with interview and observational data from the different participant groups and sites contributing to the development of all themes. This paper presents a summary of all themes and focusses in detail on the resulting recommendations for practice; separate papers provide a thorough exploration of selected individual themes with broader illustrative data [ 15 , 16 ].…”

Providing cancer treatment and care to people living with cancer and dementia: challenges and research-based recommendations

“…• Conversations should involve the person living with dementia as much as is possible, with careful attention to non-verbal body language and a warm, relaxing approach (McWilliams, 2020). • Careful balancing of views of people with dementia and their family, and differing perspectives within families, may be required to ensure all perspectives are heard and considered (Harrison-Dening et al, 2016;Griffiths et al, 2020;Surr et al, 2020a). • Consideration of treatment options within the 'bigger picture' context of the person's dementia and any co-morbidities and how these may, or may not, impact responses to cancer treatment and side-effects (Griffiths et al, 2020).…”

“…Providing the individualised, person-centred care that people with dementia need during appointments in oncology services can be difficult due to the involvement of multiple departments and staff (often located at different sites), a large volume of patients, and tight, protocol-driven treatment schedules (Ashley et al, 2020). People with dementia may struggle with the practicalities involved during appointments and treatments, such as dressing and un-dressing (Surr et al, 2020a), undertaking pre-treatment tasks such as drinking sufficient fluids or self-administering enemas, and understanding complex treatment instructions (Ashley et al, 2020). Recognising and reporting pain may also be more difficult; people with dementia and cancer are less likely to proactively report any pain they were experiencing, and were less likely to receive analgesia (Hopkinson et al, 2016).…”

Decision‐making in cancer care for people living with dementia

“…6 Few studies have specifically considered the role of decision-making in cancer care for people with dementia 7 and their limitations include single site studies 4,6,8 small-scale samples, 6,8 inclusion of people with Mild Cognitive Impairment as well as dementia 4 and only including staff perspectives. 6 The studies to date identify the central role of families in decision-making, 9 with people with dementia often depending on them to speak and make decisions on their behalf. 5,8 Clinicians who support decision-making may have different priorities to the person with CCD, and their beliefs and understanding about dementia can impact advice given and the treatments offered, meaning people with CCD can experience a power imbalance and lack of autonomy around treatment decisions.…”

“…2 This paper explores cancer treatment decision-making in CCD as one theme identified within a larger UK study exploring cancer care experiences of people with CCD, their families, and healthcare staff. 9 2 | METHODS…”