Abstract
ObjectivesThe 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 methodsAn 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.ResultsPeople 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.ConclusionsDementia 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.
Highlights
Cancer and dementia have increasing prevalence with age [1, 2] and lead to complex health and care needs and poorer outcomes for those with this comorbidity [3]
Few studies have explored direct experiences of cancer treatment in this population. Those conducted found that dementia is poorly identified in oncology services, often limits available treatment options, that oncology staff feel unsure of how to care for this population [6], that dementia brings many complexities to cancer treatment decision-making [7,8,9,10] and highlights the important but stressful role family carers play in facilitating successful cancer treatment and management [6, 11, 12]
While multimorbidity is recognised as an important consideration within cancer treatment decisionmaking [26], in older people, few oncology interventions target this area and in particular, dementia as a comorbidity [27], and often people with dementia are excluded from taking part in research based on their diagnosis [28]
Summary
Cancer and dementia have increasing prevalence with age [1, 2] and lead to complex health and care needs and poorer outcomes for those with this comorbidity [3]. The limited research conducted in CCD indicates [3, 4] that people with this dual diagnosis experience reduced likelihood of receiving: cancer screening, staging information, curative treatment and adequate pain management, than those without dementia. They have later diagnosis, lower survival rates [4] and are medically complex, having more comorbid conditions than those with cancer or dementia alone [5]. Further research on the care needs of this population is needed
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