The 2nd Global Congress for Qualitative Health Research has just been held at the Universita Cattolica in Milan in Italy. The congress brought together qualitative researchers from many different backgrounds, including nursing, occupational therapy, nutrition and psychology and from many different countries, including Canada, the US, the UK, Japan, Austria, Spain, Brazil.
I spent my time in the ageing, caregiving and death and dying streams of the conference and presented about communicative challenges in dementia care – ‘Not in our remit’: communication challenges and opportunities in dementia care. In the talk, myself and Rosie Harding were drawing on findings from the dementia projects to argue that communication is fundamentally important in this area – both in, and between, services and advocating on behalf of the person with dementia when they are no longer effectively able to do so for themselves. Exploring caregivers’ perceptions about communication in dementia care is, therefore, an important task for qualitative health researchers.
In the talk we highlighted that navigating ‘the system’ and accessing appropriate care and support for people with dementia was described as a considerable challenge by most of the 185 carers who took part in our study. I discussed three interlinking themes. First, the idea that services are a ‘maze’ – as ‘Jan’ said ‘you’re at your lowest ebb … and you just need it to be easy. … But no, you’ve got to jump through hoops …The system is a nightmare’.
Second, that services are overly limited and compartmentalised, as ‘Viv’ illustrates: ‘I have heard this phrase more often from people in the caring and system than anything, “it is beyond our remit, beyond our remit”. I think I’ve heard that more than anything else’. As well as services being describes as fragmented and not joined up, carers were also concerned by the lack of access to rehabilitative support for people with dementia, as ‘Victoria’ explained about her mother’s experience: ‘nobody like has talked about sort of physiotherapy type stuff, occupational therapy type stuff, nobody’s talked to her about like counselling … talking to her about how she’s psychologically coping with the experience of, you’re disintegrating as a person’.
Thirdly, I talked about the ‘fighting’ and ‘battling’ talk that carers used when they discussed their experiences of accessing services and gaining help for the person they cared for. ‘James’ provided a particularly vivid example of this when he likened his experience to a world war: ‘you’re under immense strain caring for somebody [with dementia] … you’re under that mental, emotional, physical effort and at the same time you’re having to battle the system… it’s like being in World War III’. This conference presentation highlighted that systemic issues in dementia care present communicative challenges, but also opportunities too.
Alzheimer’s Disease International estimated there were 35.6 million people with dementia worldwide in 2010. This is projected to increase to nearly 66 million by 2030. Given the international situation regarding dementia care, this global congress was an important space to talk about some of the challenges UK carers face, and raise the profile of dementia research to the qualitative health research community.