Carer positioning in supporting someone living with cancer and dementia: a narrative approach

Witham, Gary (2017) Carer positioning in supporting someone living with cancer and dementia: a narrative approach. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Background Evidence suggest that for people living with cancer and dementia the exploration of memory loss is superficially based upon patient or carer disclosure. Patients tend to underplay the importance and extent of memory problems in cancer consultations and staff found assessment challenging, avoiding exploring memory without an obvious therapeutic gain. Compared to cancer patients without dementia, people treated for cancer with pre-existing dementia are diagnosed at a later or unknown stage, receiving less treatment with more treatment complications and poorer survival. This highlights the challenge for carers in advocating and negotiating treatment choices with their relative. Aim: To examine the challenges of informal carers supporting someone with cancer and dementia within the United Kingdom Methods: In depth interviews were conducted with 7 informal carers using a narrative approach to examine the construction of their experiences. Recruitment took place at a Psycho-oncology unit at a tertiary cancer centre in the north west of England between July 2014-March 2015. Two participants were recruited external to the NHS through snowballing techniques. Both NHS and University ethical approval was obtained. Results: The 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 centre and this can be challenging for carers. They find that they need to co-ordinate and manage both health professionals and their care recipient(s) 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 include dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context. Issues of decision-making, best interests and quality of life were also of central concern for carers. Conclusions: Carers within this particular context face complex challenges that are not necessarily obvious and appear under reported. Their role is often rendered invisible by the nature of the care recipients’ condition. We suggest health professionals need to respond to and support carers in different ways that do not stigmatise and hence discriminate against them.