It's not just about the dementia
At least one in four acute hospital beds is now occupied by someone diagnosed with dementia* and thousands more are coming into hospital with undiagnosed dementia or some form of cognitive impairment.
These people are often admitted to general surgical wards with conditions unrelated to their dementia, and where often the staff are not trained to deal with such patients.
Dr Katie Featherstone, a medical sociologist based in the School of Healthcare Sciences, has been awarded £447,000 by the NHS National Institute for Health Research to conduct research into dementia care in hospitals. She is focussing particularly on the behavioural aspects of people with dementia when they are in hospital.
Jackie Askey is a local activist and campaigner working with local hospitals to improve the care of patients with dementia and a member of the carers' steering group for the project. Her husband George passed away in January 2015 and she questioned Dr Featherstone about her work and what it will mean for people with dementia and their carers.
Jackie's husband had dementia and she looked after him for eight years.
JA: It's a subject that's very near to my heart and I'm very interested in the research that you're doing. My husband went into hospital with a virus and was wrongly diagnosed with end stage dementia. He wasn't eating and they said it was due to end stage dementia. I said 'No, there's something wrong with his taste buds'. He actually had oral thrush and it wasn't picked up for a week and a half, and that was by me.
By only looking at the dementia and not listening to me he died. So your research is absolutely vital, why did you decide to do it?
KF: When someone with dementia is in hospital they often have something else wrong with them, they may have fractured their hip, they may have a chest infection or pneumonia.
The behavioural aspects of dementia can really be exacerbated by being in a different and unusual environment and they can go downhill rapidly in that setting. A lot of people with dementia die in hospital or have very extended lengths of stay.
I'm a medical sociologist. I'm interested in how medicine works, classification of medicine, diagnosis, and family experiences as well. My previous work looked at genetics and genetic conditions. I was looking for a new challenge and had read about growing rates of dementia and that it was rising on the public and policy agenda.
JA: What research has been done on dementia in hospital?
KF: There is lots of research on care of people with dementia in community settings, diagnosis, the genetic basis (which is a big area for Cardiff University) and also in long-term care settings. What really surprised me is that there's very little research into the experience on people with dementia in hospital. We can't assume that research in other areas such as long-term care settings is transferable to hospital settings.
JA: I would agree with you there. What did you do next?
KF: I went to quite a few meetings to decide what research we could do and what struck me was that everyone was asking for an intervention. Although I could see the urgency, there isn’t the evidence base yet to inform those sorts of interventions. I think we’ve both got a vision of what needs to happen but we need to take certain steps before we get there.
What are the challenges being faced by hospital staff, what are the experiences of people in wards, what’s the experience of people in hospital with dementia? What’s the experience of their carers? Until we understand what’s happening now we can’t move on to the next phase of developing interventions and changing things. We need the fundamentals first. That’s where I decided to start.
Dr Featherstone has taken an ethnographic approach to her research and Jackie wanted to know what this involved.
Before we start with any other interventions we need to understand what is happening now, how are staff caring for patients, what is the culture in wards? The approach has to match the questions. What are people doing and why? I observe them in their everyday settings. What are the everyday routines and rituals and the mundane work? What does it accomplish?
I go into a ward and stay for a few weeks. I follow shift patterns. I do mornings, afternoons, and nights. I do weekdays, weekends, and bank holidays. I really get a sense of culture and life in that ward. I write detailed notes in a big notebook. Everyone knows that I’m there and can see what I’m doing.
It gives you everybody’s perspective. I can put things into context. What are their everyday practices? Once we know that we can think about how we can change them.
JA: How do you think your research is going to help?
KF: It’s got to have an appropriate impact. That is the challenge. It’s a work in progress. We’re only part way through. We’ve already come up with some preliminary findings and are feeding these into hospitals straightaway. We’ve had a good response. They recognise they need help, an evidence base and direction. They are incredibly keen to take this on at ward level and at hospital and trust level too. I found that a great thing.
Those general surgical wards need the training and the support so that they can eventually know what good care for someone with dementia looks like. Dementia can really overshadow the person and everything else and that becomes a barrier to care.
* Alzheimers Society (2009) Counting the cost: Caring for PWD on hospital wards. Alzheimers Society.
Royal College of Psychiatrists. Who Cares, Wins January 2005.
Goldberg, S. E., Whittamore, K. H., Harwood, R. H., Bradshaw, L. E., Gladman, J. R., & Jones, R. G. (2012). The prevalence of mental health problems among older adults admitted as an emergency to a general hospital. Age and ageing, 41(1), 80-86.
Sampson, E. L., Blanchard, M. R., Jones, L., Tookman, A., & King, M. (2009). Dementia in the acute hospital: prospective cohort study of prevalence and mortality. The British Journal of Psychiatry, 195(1), 61-66.
Read the full interview
This is a shortened version of the full interview that features in the Summer 2016 issue of Challenge Cardiff, our research magazine.