Understanding Cancer Care for Nursing Home Residents Living With Dementia: An Ethnographic Study.

Abstract

Objective: In the United Kingdom (UK), 1 in 13 people living with dementia also have cancer. At some point, 41.3% of this population group will require care home support. Limited research has examined the care and support needs of people with dementia and comorbid cancer (DCC) in nursing homes (NHs). This study aimed to explore the care experiences of NH residents with DCC, their families, nursing home staff (NHS) and healthcare professionals (HCPs), and to identify challenges and good practices, to develop recommendations for practice improvement.

Methods: A focussed ethnography using interviews, observations, informal conversations, and review of care plan documentation. Data were analysed using ethnographically informed reflexive thematic analysis.

Results: Eight HCPs, Six NHS, 5 family caregivers and 7 residents with DCC were recruited from five NHs in Northern England. Two themes were developed: Complexities around cancer referral and treatment decision-making and Relative invisibility of a resident's clinical cancer diagnosis. Findings suggested residents with DCC were not included in best interest decision-making due to the potential distress knowing about a cancer diagnosis would cause. Families, HCPs and NH staff made collective decisions on the behalf of residents. Often cancer referral was deemed not appropriate. Thus, people with dementia had a clinical-only cancer diagnosis, resulting in limited formal information about the cancer in care documentation and staff knowledge. Potential consequences of having a clinical-only cancer diagnosis included: misattributing cancer symptoms to dementia, reactive care responses to cancer symptoms and the possibility of inadequately managed cancer symptoms.

Conclusions: Implementing earlier discussions about feasible care outcomes is crucial. These conversations should include considerations around hospital referral for oncology care or care through palliation in the NH. Without appropriate recognition of a clinical-only cancer diagnosis and support for staff it could lead to advancement of symptoms that might be challenging and less well managed. We outline several recommendations to support NHS to deliver person-centred care to residents with DCC.