Dementia research with the NHS

We are lucky at Leeds Beckett that we have many local NHS Trusts who are engaged with and supportive of dementia research, and we regularly develop and work on research in partnership with them and the clinicians who work there. We are currently leading or partners on research working with the NHS right across the dementia journey from risk reduction, diagnosis and post-diagnostic support through to care for people with dementia who have other health conditions for which they need NHS care – such as cancer. Many of our studies are funded by NHS bodies, such as the National Institute for Health Research, Health Education England, and NHS England.

A particular focus of our work is research that helps to improve experiences of care for people living with dementia and their families. Below are some examples of recent and current projects we are working on collaboratively with NHS Trusts, which will hopefully lead to improved healthcare for people living with dementia and those who support them. Each has been written by one of the researchers working on the study.

Research on the dementia diagnosis experience – Dr Rachael Kelley

One of our research projects currently running in the NHS is the COUNTED Study, which is looking at how information about dementia medication options can be best communicated when people are diagnosed with a type of dementia for which medications might help. The aim of the study is to understand how medication options are currently communicated. We are particularly interested in how the potential benefits and possible side effects of dementia medications are discussed and how this impacts the decisions people make about whether to take them. We are also asking about what people living with dementia, families and NHS staff think are the best ways of communicating this information. The first stage of the study is running in two local NHS Trusts, who are partners on the study and will involve video recording memory assessment clinic appointments and carrying out interviews with people who have recently been diagnosed with dementia, their families and NHS staff. These will feed into later stages of the project, where a survey and workshops will be used to develop best practice recommendations for communicating information about medication options when people are being diagnosed with dementia.

Optimising acute oncology services for people with dementia – Rebecca Platt PhD student

I have just received ethics approval for a study exploring the care needs of people with dementia who access urgent cancer care through NHS acute oncology services. This study, funded by the Alzheimer’s Society and developed in collaboration with cancer and elderly care clinicians, will focus on understanding the care pathways experienced by people with dementia as well as the barriers and facilitators for person-centred care for this patient group. It is planned that this study will take place in two NHS Trusts in Yorkshire, and will include patients with dementia and cancer, their relatives and NHS clinicians involved in their care. Findings will be used to examine patterns of acute oncology care provision for people with dementia and the appropriateness of outcome measures used to evaluate and commission acute oncology services in England.

Understanding the cancer treatment and care needs of people with dementia – Professor Claire Surr

A study we recently completed with two local NHS Trusts, looked at how people with dementia and their family/supporters experienced attending hospital for cancer treatment and care and also staff experiences of providing this. We observed people attending appointments at hospital for consultations and treatments and we interviewed people with cancer and dementia, their family members/supporters and staff working in cancer services. We found that having dementia made cancer care more complicated in the ways shown in the picture below.

We made some suggestions as to how cancer services might help to improve care for people with dementia, shown below. These included making sure dementia is accurately recorded in medical records, being flexible with appointments and timings and considering practical issues like transport to hospital and the environment.

As this project is complete, we have been sharing the findings and supporting the NHS to put them into practice. We have gone back to the NHS Trusts who took part and discussed them with staff who work there. They are doing things like making improvements to the waiting areas and ensuring cancer services staff access dementia training. The research arm of the NHS, The National Institute for Health Research, has featured one of our journal articles as an alert, which is an accessible summary relevant to clinicians, patients and members of the public. The Society and College of Radiographers have recently updated their guidelines for radiographers (who take x-rays or images for diagnosing and monitoring cancer and administer radiotherapy) on working with people with dementia. It includes a range of findings from our study. This project also led us to work with Yorkshire Ambulance Service to develop the PhD study Lesley discusses next.

Understanding the experiences of people with dementia who use Patient Transport Services – Lesley Butterworth PhD student

Yorkshire Ambulance Service (YAS) undertook nearly 1 million Patient Transport Services in 2019/2020. These are journeys to or from hospital by transport provided by the NHS. These journeys may be to attend outpatient appointments or can be on discharge from a stay in hospital. Of these 10% were known to be living with dementia, however the actual number is likely to be much greater. Several studies have looked at the health care needs of those living with dementia, their supporters and staff who care for them. These studies have not specifically focussed on the ambulance service however they have highlighted issues with transport to access health care. The topic also features heavily in a number of reports commissioned by patient voice organisations.

However, there is very limited research into the experiences of those living with dementia who use Patient Transport Services provided by the NHS. I will be undertaking a wide variety of observations and semi-structured interviews with people living with dementia, their supporters and YAS staff/volunteers to enable me to understand in depth the experience of using PTS for someone living with dementia. This study is being undertaken for my PhD however as Lead Nurse – Urgent Care and strategic lead for Dementia at YAS I am hopeful that the results of the study will help improve patient care in the future.