A day in the life of a dementia research nurse
Emily King, is a dementia research nurse at the Royal Hallamshire Hospital in Sheffield. She qualified as a nurse in 2009, having worked on care of the elderly wards, she developed an interest in dementia and did a Masters in dementia studies. Emily has been working as a dementia research nurse for nearly a year at the National Institute for Health Research Clinical Research Network (NIHR CRN) within the Yorkshire and Humber delivery team. What she loves about her job is the variety, meeting interesting people and making a difference to the lives of people with dementia.
Being a dementia research nurse is very varied, no two days are the same. One day, I could be meeting healthcare professionals in different trusts and clinical areas to present and promote studies that could be beneficial for their client group; another day, I could be screening and consenting patients in a neurologist’s or psychiatrist’s outpatients clinic to recruiting studies. My job is to identify patients and review if they are suitable to take part in one of the many research studies that I work on. I receive patient referrals from consultant neurologists, mostly in memory clinics at NHS Trusts. I then provide information on the research study to these patients either in person or by post. I have to ensure patients are appropriate for the study, fully inform them of what is involved and confirm they still want to take part, a process known as gaining informed consent. I then collect key information as identified in the study protocol to gain a baseline assessment that will be compared at any follow up visits as specified in the protocol.
Part of my day involves checking emails and doing any administrative work, such as electronically inputting data that I have collected during study visits. I normally do two to three visits to participants each day, mostly in their homes but I do have participants in care homes too.
One research study that I am currently involved in is called VALID, Valuing Active Life in Dementia, a psychosocial intervention study, which is funded by the NIHR and sponsored by the University of London. The study involves an occupational therapist visiting a person with dementia for one hour once a week for 10 weeks, helping people to keep up their everyday activities and remain independent for as long as possible after they develop dementia. I meet with participants in person after 12 and 26 weeks to collect follow-up data. This involves me visiting participants who have had a visit from an occupational therapist and those that have not. Those who have had visits from an occupational therapist are in what’s known as the ‘interventional arm’ whilst those who haven’t are in the ‘control arm’ as it is a ‘randomised controlled trial’. I am a ‘blinded researcher’ for this study, to reduce the risk of partial information and ensure the results of the study are reliable. This means I am not told whether the participant has had a visit from an occupational therapist or not. I run through a list of questions with the participant identifying whether there has been a difference in their well being as a result of visits from the occupational therapist.
Another study that I am currently finding participants for is ‘Journeying through Dementia’. It is also funded by the NIHR. The study aims to find out whether attending a 12 week community programme has a positive impact on the quality of life for people with early stages of dementia. It involves twelve weekly group sessions with two trained health practitioners and four individual one-to-one sessions with one of those practitioners. Throughout the programme there is an emphasis on participation and putting ideas into action through activities in the local community. The content of sessions is decided by each group, with support from a trained health practitioner, so the precise content of each group varies depending on the members’ interests and goals.
Over the course of the study, everyone who participates, including those not receiving the programme and their supporters (usually a family friend or a relative), will be visited several times by a researcher who will ask them some questions about their general health, wellbeing and lifestyle. The research is conducted with the University of Bradford.
I am involved in 11 different studies, all of which are at various stages from set-up to closure, requiring me to use and develop diverse skills. One of the challenges is that I am the only one that does my role in the CRN nursing team. This means that effective communication with my managers, along with the ability to build good working relationships with other team members in all the different Trusts where I support research studies, is essential.
At the end of the day, I love the interaction with the participants and their families and I think that regular visits from research nurses seem to make people feel brighter and more valued. My job satisfaction is knowing that through these studies, I will be making a positive difference to participants living with dementia.
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