NIHR Blog

Katie Featherstone, Reader within the School of Healthcare Sciences, Cardiff University.

Research must contribute to wider social change

Author:

Katie Featherstone, Reader, School of Healthcare Sciences, Cardiff University.

Date: 08 September 2017

My turning point came three years ago. By chance I found myself at a hospital meeting sitting in on a discussion where I felt people living with dementia were being described as a ‘problem’ to be ‘solved’. I repeated a number of times - Do we know the issue? What’s the evidence? But no one replied. Eventually I turned to my neighbour who told me that almost 50% of their acute patients also had a dementia diagnosis and that she was the only specialist dementia nurse in the hospital.

People living with dementia are one of the largest populations in our hospitals, and as that meeting demonstrated, were being classified by hospitals and ward staff as a ‘problem’ population who do not belong in our hospital beds (Tadd,2011).

However, this group do belong in our hospitals, they are one of the largest populations in our hospitals, with 25-50% of people in each ward living with dementia – and they need to be there, typically because they have a fractured hip or an infection (Alzheimer’s Society, 2009; Alzheimer’s Society, 2016).

Yet concerns persist about poor treatment, neglect, abuse, and discrimination of older people in acute hospital (House of Lords, 2007; Francis report, 2013 Care Quality Commission, 2014; Alzheimer’s Society, 2016). We have made a short film that explores the experience from a carers perspective: I knew this situation had to change. Could a sociological approach help?

My first step was to visit a support group of carers and their partners living with dementia to find out their experiences. Over lots of tea and cake they told me that hospitals were the scariest place for them, and one of the most frightening places for people living with dementia to be. Since then we formed a strong friendship and collaboration.

With their support, I have obtained funding from NIHR HS&DR Researcher-led funding and I have spent 18 months working in acute hospital wards across England and Wales carrying out detailed sociological ethnographic research observing everyday care. Focussing on the interactions between staff and people living with dementia, and examining the organisation of care in wards and how they contribute to poor experiences and outcomes. Talking to people living with dementia, their families and talking to ward staff- nurses and HCAs – about their experiences.

These groups all tell me they feel invisible. Overwhelmingly, staff reported that they felt they are not being given the skills or opportunities to provide the level of care they would like. My observations within hospital wards has identified that ward routines and priorities are not designed to meet the needs of this key population. In response, I am working with nurses, care staff and acute hospitals to develop no-cost ward interventions to support people living with dementia and to support staff and increase their skills.

But to make these changes in our hospitals we also need to confront and challenge the wider social inequalities experienced by people living with dementia and their families. What happens to people living with dementia in acute wards, their invisibility and the poor understandings of their experiences, is not unique to that setting, rather it is a reflection of the wider social inequalities, invisibility, ageism and stigma they experience. We cannot improve their experiences in wards unless we also challenge these wider social inequalities.

In response, I work with an amazing team of film programmers at Chapter and the BFI funded Film Hub Wales (https://www.chapter.org/dementia-friendly-screenings). We started running monthly ‘dementia friendly’ screenings and now include four additional ‘relaxed environment’ screenings a month so that people living with dementia and their families feel welcome at the cinema and can enjoy watching new release films together (follow via @chaptertweets).

This has grown into a series of festivals and in May 2017 over 600 people living with dementia and their families joined us. Our next festival is on the September 22. I have realised the difference we make with our research can only come if we recognise the importance of advocating and promoting wider change in society.

This film project now receives support from a wide range of organisations (Dunhill Medical Trust; The Rayne Foundation; BFI Audience Development fund, Alzheimer’s society) and we have developed a toolkit for other venues to increase access to film. This is already having an impact, with a number of other cinemas now involved. We have made a short film on the importance of access to the cinema and the arts for people living with dementia.

What unites my approach to research and the film programme is the goal of developing evidence-based no cost interventions at the organisational level to improve services for people living with dementia whether at the cinema or an acute hospital admission and using sociology to inform social change.

Further details of Katie’s research can be found on her blog www.storiesofdementia.com and follow Katie @Drkfeatherstone and her research @storiesdementia on Twitter.

*NIHR is running a campaign to mark World Alzheimer’s Month. Find out more on the NIHR website.

Katie Featherstone is a Reader within the School of Healthcare Sciences, Cardiff University.

References

Alzheimers Society (2009) Counting the cost: Caring for people with dementia on hospital wards. Alzheimers Society.
Alzheimer’s Society, 2016. Fix Dementia Care: Hospitals 2016 London : Alzheimer’s Society
Care Quality Commission, 2013. The state of health care and adult social care in England in 2013/14(Vol. 763). London : The Stationery Office.
Francis, R., 2013. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry: Executive Summary Vol. 947. London: The Stationery Office
Tadd, W., Hillman, A., Calnan, S., Calnan, M., Bayer, T., & Read, S. (2011). Right place-wrong person: dignity in the acute care of older people. Quality in Ageing and Older Adults, 12(1), 33-43.

 

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health.
  • Summary:
    Dr Katie Featherstone uses sociology to improve the quality and humanity of care people living with dementia experience in hospital. Her blog is the latest in our World Alzheimer's Month campaign this September.
  • Year:
    2017
  • Author:

    Katie Featherstone, Reader, School of Healthcare Sciences, Cardiff University.