Talking to family carers about end of life care for people with dementia can be difficult. Nathan Davies, PhD Student at University College London, shares some thoughts and ideas on how he copes with this important but often challenging area of research.
I am a PhD Student at University College London. My PhD aims to explore what family carers judge to be good quality end of life care for dementia. Alongside this, I work on a European project ‘IMPACT’ which is aimed at finding optimal strategies and quality indicators to improve the organisation of palliative care for people with cancer and for people with dementia.
“I would offer to participate if I thought that my now memories of the loss and experience leading up to it were still valid. I believe I have a happier recollection now ‘in retrospect’ than I did at the time. Also, I find it difficult to see a conversation lasting up to an hour.” (Husband)
Reflecting on my interviews with family carers about end of life care for dementia, it struck me how difficult we find it, as a society, to talk about this topic and even more so in research. What are the best ways to talk to carers about such topics? I don’t think there is an easy answer to this question.
Starting the conversation
I had previously spoken to people about their treatment choice for cancer, but this was different. After conducting a few interviews with family carers, this became apparent and there was no ‘one size fits all’ approach. Some family carers were rather reserved, as we can see from the carer above. I often found that making the effort to get to know more about the person with dementia, maybe through looking at photos and scrapbooks, helped to ease these reservations.
I discovered the easiest and best approach was to start at the beginning of the caregiving trajectory, and talk our way through the course of their ‘journey’, a sort of chronological take if you like. Sometimes we were able to just have an informal chat; however, some carers required a more structured approach, prompted by direct questions. Many interviews started with a discussion about how their relative was diagnosed.
Conversations about diagnosis were a route into a discussion, before getting into the more sensitive topic of end of life. I noticed that some carers felt more comfortable talking about diagnosis, and it was more appropriate to start at the beginning allowing them to reflect upon times when the dementia wasn’t quite as bad as what it eventually became, or was at the time of talking to me. We progressed through their journey discussing various experiences, including admissions to hospital and transitions to care homes, which slowly became more difficult for them to share. This approach helped to build a rapport, making it possible to discuss end of life care. For many this was a slow process; it was particularly more difficult for those who were still caring compared to bereaved carers. As you may expect this was often where the discussion got most emotional.
It was far more complicated with carers of recently diagnosed people. They found it difficult to talk about what they expected from end of life care. Both these families and I were often unable to discuss end of life care in much detail. So when can we begin to talk about end of life care? In the UK, we are currently being encouraged to talk about this as soon as possible, but is this really appropriate for everyone? I don’t think it is; some would rather consider this as needed, when they are ready.
Many carers had previously not discussed their experiences, perhaps because of their distressing nature. Many had other family members who refused to talk about it. I think that through balancing the approach of being a researcher, with sight of the human and compassionate side of me, the carers found these conversations extremely helpful and therapeutic.
I am happy to say that I have enjoyed these interviews and that although they are not easy to conduct, we should not shy away from talking about these issues. We need to learn from people with personal experience of dementia and end of life care.
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