Cancer treatment decisions for people living with dementia: experiences of family carers

Problem

Dementia and cancer are both 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 is asked to make decisions on their behalf. Research examining the impact that making life-altering decisions by proxy has on family carers shows that it can be highly distressing. The specific experience of proxy decision-making regarding cancer treatment for someone with dementia is almost wholly unresearched. This study aimed to 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.

Approach

Semi-structured interviews were conducted with adult carers of people with dementia who had made decisions about cancer treatment on their behalf within the last two years. A purposive sampling strategy recruited participants via CRN-portfolio GP practices and the Join Dementia Research database. Two researchers separately undertook analysis on Nvivo using an inductive, grounded-theory approach to identify themes. A third researcher independently verified these themes to provide a rigorous thematic framework.

Findings

Interviews were conducted with 16 carers (husbands, wives, sons, daughters and grandchildren). Cancer diagnoses included prostate, breast, bowel, renal, melanoma and lung. We identified four main themes. TranslatorsDecisions about cancer treatment were relatively straightforward for carers. They were usually strongly influenced by the medical team who gave a clear best option. Carers viewed their role as translating a frightening situation for their relative and representing their wishes to healthcare professionals. Cancer services ill-equipped for people with dementiaThe biggest challenge for carers was having to navigate healthcare services which are not prepared for people with dementia. Poor communication, lack of person-centred care and inexperienced staff caused carer stress throughout all stages of the cancer journey.LPAs hinder, not helpLasting Power of Attorney should simplify making healthcare decisions on someone’s behalf, but medical staff have a poor understanding of the authority it grants. It was frequently one of the biggest causes of conflict between carers and healthcare professionals. Cancer preferable to dementiaFor most carers managing the person’s dementia remained the biggest challenge and caused the most emotional distress. Many viewed their loved one’s cancer as a possible escape from dementia.

Consequences

Ultimately there remains a huge lack of practical and emotional support for dementia carers, who remain isolated and exhausted. The addition of serious comorbidity in their relative only compounds this and makes it worse. Services across the NHS need to be better equipped to care for people with dementia. Healthcare staff require greater understanding of the authority granted by LPA.