Carer Experience Supporting Someone With Dementia and Cancer: A Narrative Approach

Abstract

In this article, we examine the challenges of informal carers supporting someone with dementia and cancer within the United Kingdom. Interviews were conducted with seven informal carers using a narrative approach to examine the construction of their experiences. Our findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology center, and this can be challenging for carers. They find that they need to coordinate and manage both health professionals and their relative in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges including dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context.

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 …”

“…Three studies reported their sampling method as purposive, while others were unclear . The sample sizes of interviewees reported in the qualitative studies ranged from six to 60 patient‐caregiver dyads, and seven to 23 caregivers interviewed individually . Two studies interviewed patients with dementia individually in their case sample …”

“…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 …”

“…In most studies, the caregiver accompanied the patient in the consultation where treatment options were discussed. In the study led by Witham and colleagues, one caregiver described a series of scenarios that led to missed appointments where the patient attended their appointment unassisted; this was due to unclear signage in the clinic and an absence of staff to guide the patient once in the hospital . The cognitively impaired patient also had a coexisting hearing problem and was unable to hear his name being called.…”

“…A scenario was recalled where the patient's erratic sleep pattern was incompatible with the arranged transport pick‐up time. This meant that without prompts, the patient would miss their transport to the appointment …”