Cancer and dementia: an exploratory study of the experience of cancer treatment in people with dementia

Abstract

Objective Patients with comorbid cancer and dementia have poorer outcomes than those without dementia. We observe oncology teams managing patients with dementia and memory loss and explore these patients' needs and experiences of out-patient cancer services. MethodsA single site investigation of case study design to examine practices in four clinics using multi-methods of data collection; retrospective note review, observation, interviews and recorded consultations. A framework analytic approach identifies themes within and across cases. ResultsThirty-three clinical encounters with patients with memory loss were observed. Ten consultations were audio-recorded and 16 individuals interviewed (n=6 patients-carer dyads, n=1 lone patient, n=5 staff). Medical records were reviewed for 338 cases. Cancer referrals did not document memory health, so clinicians rely on patient/carer disclosure to identify patients with memory problems. In practice the problem often remains hidden. Treating teams who do become aware of memory difficulties are unsure how to support patients, but marked memory loss can limit treatment options and preclude radical intent. Carers are key facilitators of successful cancer consultations and management. Their support needs are largely unrecognised. ConclusionsTraining that educates cancer teams on how to identify and support individuals with memory problems before and during treatment and recognise the carer role may facilitate complex cancer care and help reduce inequalities of outcomes.

How are caregivers involved in treatment decision making for older people with dementia and a new diagnosis of cancer?

“…Of the six studies included (Table ), five were conducted in the United Kingdom and one in the United States. One study used a quantitative cross sectional design, and five studies used a qualitative design . Two studies explored treatment decision making in the context of hypothetical treatment scenarios, three studies observed prospective treatment decision making in clinical scenarios, and one study interviewed patients and caregivers who were reflecting retrospectively on the cancer diagnosis and treatment decision making …”

“…Following screening, clinical investigation, and diagnosis, the initial cancer consultation was often the first point in the cancer treatment pathway where HCPs met with patients and their caregivers to discuss treatment options. Four studies explored the experiences of caregivers and HCPs in the cancer setting through observation of consultations and semi‐structured interviews . Caregivers in one study reflected back on the consultation where the person living with dementia received their cancer diagnosis …”

“…Having access to detailed patient information, such as past medical history, comorbidities, and cognition level enabled HCP's to plan sufficient time for discussion in the consultation . McWilliams and colleagues noted that cognition status was not always known to the HCP in advance of the consultation, and dementia was also infrequently documented in the patient's referral information or medical records in the study led by Courtier and colleagues . In both studies, the identification of memory problems was often reliant on caregiver disclosures .…”

“…Caregivers in the study led by Courtier and colleagues noted that the cancer consultation had a tendency to focus primarily on cancer treatments, rather than cognition‐related problems . This subsequently led to memory problems remaining undiscovered.…”

“…This subsequently led to memory problems remaining undiscovered. In two studies, it was noted that patients would often underplay memory problems and dispute their inability to cope with treatment as a result of their impairment . Cancer diagnostic investigations were often delayed due to the combination of limited HCP awareness of memory problems and a failure to detect the signs associated with dementia .…”