Stories

Working to improve care and support for people living with Dementia

Stories

I am a mental health nurse by background but I’ve worked in health research since 2004, first at the University of Leeds and now in the Centre for Dementia Research at Leeds Beckett University. My research career began in self-harm but moved to my main interest – dementia research – with an NIHR Doctoral Fellowship in 2009. I’m now a senior research fellow. My research focuses predominantly on improving care for people living with dementia in healthcare settings.

Tell us a bit about you and what led you to working with the School of Health

Ever since working as a nurse specialising in dementia care, I’ve been passionate about improving care and support for people living with dementia. When I first moved into research (in self-harm), although it was in an area I was interested in, I always knew my heart lay in dementia research. I was lucky to start my research career working with a really supportive, experienced research group who supported me to undertake research training and to make the move to dementia research by applying for an NIHR Doctoral Fellowship to do my PhD. This was a brilliant experience and cemented my interest in dementia research. So, when the opportunity came up to apply for a research fellow post at the Centre for Dementia Research back in 2017, I jumped at the chance! It has been a great move for me. I work with a team of people who are all focused on the research topic I’m passionate about and we have great links with local NHS services and voluntary organisations working with people with dementia, so we are able to do research that really helps to make a difference to the lives of people with dementia and their families.

What makes you passionate about your work around Dementia and why is it important?

I’m interested in lots of things, but my main research interest is how we can improve care and support for people living with dementia and their families. When working as a nurse I worked with some amazing colleagues who taught me so much about how to support people living with dementia and their families really well. I saw first-hand the many challenges of living with dementia, but also what a difference individualised, well-thought-out support can make to the person and their family. I also saw the negative effects of care that did not meet the person’s needs. This made me passionate about improving the care and support people living with dementia and their families receive. This is important for so many reasons. There are over 900,000 people living with dementia in the UK, many of whom are supported by family and friends, and are frequent users of our health and social care services. The quality of the care and support people with dementia and their families receive when accessing these services directly affects their wellbeing, physical and mental health, and quality of life, and for families how long they feel able to continue supporting someone living with dementia.

How is collaboration integral to your work, and what are one or two collaborations that have been most meaningful to you?

Collaboration is really important to the research that we do, whether that is with colleagues in the university or at other universities, staff in health, social care or voluntary services that we are working with, or with people living with dementia and their families. For example, we will work collaboratively as a team across all these groups to develop research funding applications, which helps us to develop research projects that people living with dementia, their families and the staff supporting them think are important and are likely to make a difference in practice.

Collaborations with people living with dementia and their families are always important because people are giving up their time and are prepared to share their personal experiences with you which you can learn so much from listening to. I also really value collaborations with local health and social care services. The staff we work with are so busy but have been so welcoming of us as researchers, taking an interest in the work we are doing, helping it to happen and helping to translate the findings into changes in practice. We couldn’t do our work without their help.

What achievements in this area have you been most proud of while working in the School of Health?

One of the things I’ve been most proud of is when findings from our research have been used to help improve care for people living with dementia. One example is a recent project on experiences of cancer care for people living with dementia. The local radiotherapy department were really interested in the findings and used them to improve the support they offer to people with dementia by making changes to the environment, identifying staff to act as dementia champions, improving training for staff around dementia and linking up with the Trust’s dementia experts. The findings were also turned into advice leaflets for people living with cancer and dementia, families supporting them and hospital staff [see photo]. The project was also chosen to feature as an NIHR alert – an example of research with valuable findings for clinical practice.

I’m also proud of being chosen last year to sit on the NIHR’s Research for Patient Benefit Funding Panel. This means I get to advise the NIHR on research funding applications and give advice on how applications could be improved and which applications should be funded. It is really interesting work and also led to me reviewing applications for Covid-19 research.

Dr Rachael Kelley

Senior Research Fellow / School of Health & Community Studies

Rachael is a research fellow in the School of Health and Community studies with a focus on developing and conducting research into the care of people with dementia. She also teaches health research methods to undergraduates and postgraduates.

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