Balancing the needs of individuals and services in cancer treatment for people with dementia: an ethnographic study

Abstract 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 decisions for people living with dementia: experiences of family carers

British Journal of General Practice ◽

10.3399/bjgp20x711545 ◽

2020 ◽

Vol 70 (suppl 1) ◽

pp. bjgp20X711545

Author(s):

Catherine Hynes ◽

Caroline Mitchell ◽

Lynda Wyld

Keyword(s):

Cancer Treatment ◽

Healthcare Professionals ◽

Cancer Recurrence ◽

Treatment Decisions ◽

Support Needs ◽

Family Carers ◽

Structured Interviews ◽

Power Of Attorney ◽

Cancer Data ◽

People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

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Mealtime Care for People With Dementia: What Do Nursing Home Staff Think?

Innovation in Aging ◽

10.1093/geroni/igaa057.591 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 182-183

Author(s):

James Faraday ◽

Clare Abley ◽

Catherine Exley ◽

Joanne Patterson

Keyword(s):

Nursing Homes ◽

Ethnographic Study ◽

Direct Care ◽

Care Staff ◽

Direct Care Staff ◽

Structured Interviews ◽

Staff Members ◽

People With Dementia ◽

Comparison Approach ◽

The Right

Abstract More and more people with dementia are living in nursing homes (NH). Often, they depend on NH staff for help with eating and drinking. It is important that staff have the skills and support they need to provide good care at mealtimes. This qualitative study explores mealtime care for people with dementia, from the perspective of NH staff. Semi-structured interviews with NH staff (n=16) were carried out in two nursing homes. The homes were chosen to have diverse characteristics: one home had a large number of beds and was part of a small local organization; the other had a small number of beds and was part of a large national organization. Various staff members were interviewed, including direct care staff, senior carers, nurses, managers, and kitchen staff. Interviews were audio-recorded and transcribed verbatim. A constant comparison approach was taken, so that data from early interviews were explored in more depth subsequently. From the analysis, five themes emerged as important in mealtime care for people with dementia living in nursing homes: Setting the right tone; Working well as a team; Knowing the residents; Promoting autonomy and independence; Gently persevering. This work forms part of a larger ethnographic study on the topic, which includes data from residents with dementia, and family carers. Results will inform the development of a staff training intervention to optimize mealtime care for this population.

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Seeing the collective: family arrangements for care at home for older people with dementia

Ageing and Society ◽

10.1017/s0144686x17001477 ◽

2018 ◽

Vol 39 (06) ◽

pp. 1200-1218 ◽

Cited By ~ 2

Author(s):

CHRISTINE CECI ◽

HOLLY SYMONDS BROWN ◽

MARY ELLEN PURKIS

Keyword(s):

Family Care ◽

High Volume ◽

Ethnographic Study ◽

Family Carers ◽

Care Giving ◽

People With Dementia ◽

Home Based ◽

Health And Social Care ◽

Care At Home ◽

At Home

ABSTRACTWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.

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Abstract A047: An ethnographic study of African American men's prostate cancer treatment decision-making

10.1158/1538-7755.disp18-a047 ◽

2020 ◽

Author(s):

Nynikka R. Palmer ◽

Richard L. Street ◽

Dean Schillinger ◽

Janet K. Shim ◽

Sarah D. Blaschko ◽

...

Keyword(s):

Prostate Cancer ◽

Decision Making ◽

African American ◽

Cancer Treatment ◽

Treatment Decision ◽

Ethnographic Study ◽

Prostate Cancer Treatment ◽

Treatment Decision Making

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6 The hidden co-worker: research revealing unmet support needs in carers of people with dementia who receive cancer treatment

10.1136/bmjspcare-2018-aspabstracts.33 ◽

2018 ◽

Author(s):

J Hopkinson ◽

M King ◽

R Milton

Keyword(s):

Cancer Treatment ◽

Support Needs ◽

People With Dementia

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Going home? An ethnographic study of assessment of capacity and best interests in people with dementia being discharged from hospital

BMC Geriatrics ◽

10.1186/1471-2318-14-56 ◽

2014 ◽

Vol 14 (1) ◽

Cited By ~ 19

Author(s):

Marie Poole ◽

John Bond ◽

Charlotte Emmett ◽

Helen Greener ◽

Stephen J Louw ◽

...

Keyword(s):

Ethnographic Study ◽

Best Interests ◽

People With Dementia

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An exploration into the relationships people with dementia have with physical objects: An ethnographic study

Dementia ◽

10.1177/1471301212442585 ◽

2012 ◽

Vol 12 (6) ◽

pp. 697-712 ◽

Cited By ~ 16

Author(s):

Alex Stephens ◽

Richard Cheston ◽

Kate Gleeson

Keyword(s):

Ethnographic Study ◽

People With Dementia ◽

Physical Objects

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

Age and Ageing ◽

10.1093/ageing/afaa210 ◽

2020 ◽

Author(s):

Laura Ashley ◽

Rachael Kelley ◽

Alys Griffiths ◽

Fiona Cowdell ◽

Ann Henry ◽

...

Keyword(s):

Cancer Care ◽

Treatment Decision ◽

Hospital Staff ◽

Ethnographic Study ◽

Cancer Information ◽

Structured Interviews ◽

Global Challenge ◽

Treatment Decision Making ◽

People With Dementia ◽

Care And Treatment

Abstract 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 A 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.

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