Cancer treatment decision-making with/ for older adults with dementia: the intersections of autonomy, capital, and power

Cook, PS; McCarthy, Alexandra

doi:10.1080/14461242.2018.1466187

Cited by 15 publications

(26 citation statements)

References 22 publications

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“…This is despite the importance of the topic area seen in this and in recent studies and the need to enhance clinical practice and patient outcomes ( see e.g. Courtier et al , 2016; Cook and McCarthy, 2018).…”

Section: Discussionmentioning

confidence: 88%

Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

et al. 2018

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The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

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Section: Discussionmentioning

confidence: 88%

Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

et al. 2018

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“…19 We found relatives were integral to treatment decision-making, supporting reiteration and explanation of key information and discussion of treatment options. Previous research has highlighted their important role in facilitating inclusion of the person with CCD in decision-making 6 but has also indicated there may be deference to relatives in this process. 4,8 Our study confirmed these findings and identified the considerable burden caused by reliance on families for decision-making.…”

Section: Discussionmentioning

confidence: 99%

“…5 However, comprehension and decision-making abilities may be further decreased in people 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.…”

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confidence: 99%

“…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.…”

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confidence: 99%

“…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. 6 Treatment decision-making for people with CCD is complex, particularly for those lacking capacity. 8 Relatives are integral in supporting decision-making, but often have unmet information needs and feel excluded from the process.…”

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confidence: 99%

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Decision‐making in cancer care for people living with dementia

et al. 2020

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Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. Methods: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Results: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. Conclusions: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.

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Navigating cancer treatment and care when living with comorbid dementia: an ethnographic study

Surr

Griffiths

Kelley

et al. 2020

Support Care Cancer

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Objectives The risks of developing cancer and dementia increase as we age; however, this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. Materials and methods An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 h) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. Results People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia-friendly hospital outpatient environments alongside the cognitive problems associated with dementia. Conclusions Dementia impacts patients’ abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from the hospital, alongside extending the ongoing efforts to develop ‘dementia-friendly’ hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.

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Cancer treatment decision-making with/ for older adults with dementia: the intersections of autonomy, capital, and power

Cited by 15 publications

References 22 publications

Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

Decision‐making in cancer care for people living with dementia

Navigating cancer treatment and care when living with comorbid dementia: an ethnographic study

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