Interview with a researcher: Harry

Feb 12, 2018

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Interview with a researcher: Harry

Interview with a researcher: Harry

Harry

Harry works as a research assistant in a Neurology Clinic. His work is very varied, and involves research on a number of neurodegenerative conditions, including Motor Neurone Disease, and Dementia. One of the Clinics that Harry is involved in is an Early Onset Dementia Clinic, in which specialised neurologists assess people with memory problems that started before they reached the age of 65. The neurologists involved in this clinic also carry out research, and everyone who attends the clinic is asked if they would like to participate in a research register to be contacted about future studies.

Me: Harry, could you explain why everyone who attends the clinic is told about research?

Harry: Research is key for advancing our understanding of neurological conditions. It is crucial for the prospect of developing effective treatments in the future, and for understanding how best to meet the everyday needs of the patients, relatives, and carers who are affected by the condition.    

There are 3 reasons why we recruit people to research at our Clinic:

  1. To allow patients to contribute to research by gifting their healthcare data which has been collected about them in their routine clinical care. We host thousands of patient appointments each year at the clinic, generating a wealth of data about the people we see and the conditions they have. This data is invaluable for many aspects of research. All data which is gifted to research is fully anonymised, meaning no personal information, such as name or date of birth, is used.
  2. To notify patients, relatives and carers about research projects and clinical trials which are relevant to them and that they may be eligible to participate in. For many, the only way to hear about research is through a healthcare professional who is both aware of the current research opportunities and is able to provide information. Being on a research register, such as ours, allows for routine communication of this information.
  3. To work with our patients and their relatives or carers to help shape the design and implementation of our next generation of research projects. Our researchers design and lead world-class clinical research. However, the people best placed to tell us how to do even better research are the people who live with these conditions every day.

We have a research register at the Clinic that people can sign up to if they are interested in being part of research.

Me: It sounds like being part of this register could be quite a lot of work. Could you explain what it means to be part of the research register? Are there any responsibilities?

Harry: Being part of a research register allows an individual with dementia to contribute to research in various ways. Everyone can contribute however much they feel comfortable with. There are no obligations to being a member of a research register, and you are free to withdraw at any time with no questions asked.

Me: For those people participating in research I’m sure it would be interesting to know what questions you are trying to answer with your research?

Harry: We are trying to understand fundamentally why a person develops a neurodegenerative condition such as dementia, and what causes the condition to take such varied trajectories among individuals. Developing our understanding of this will enable the development of patient specific treatments, which meet the need of the individual. This is known as precision medicine. Precision medicine has been employed successfully in cancer medicine, and we are hoping to do the same with neurodegenerative diseases.

Me: As part of your job you often interact with patients who can be severely affected, as well as their families. What are some of the more difficult aspects of your work?

Harry: Understandably, many of our new patients are very anxious during their initial appointments at the clinic – they may be undergoing numerous investigations (cognitive tests, blood tests, lumbar punctures and brain scans, for example), and awaiting a diagnosis, which may have a tremendous impact on both their own and their family’s lives. It is not easy to see a person struggle with uncertainty whilst going through this, and it can be particularly difficult to see a patient and their relatives or carer just after an upsetting diagnosis is made.

In general, patients attending the clinic are at the early, diagnostic stages of their condition. But of course we also have patients come in that are more disabled. Some people can become confused or distressed whilst at the clinic. And, whilst they are usually fully supported by their family or carers, it is still never easy to see. In addition, and although rare, some people with dementia undergo personality or behaviour changes. This means they may lose their inhibition, and act socially inappropriate, which can be difficult to deal with.

Me: If you find yourself in a situation, where someone has just been diagnosed, or is acting inappropriately, how do you deal with that? Have you found any particular strategies that can be helpful?

Harry:  Receiving a diagnosis affects people in different ways; some wish to be with their families or carers, some wish to be alone, others would prefer to talk to another healthcare professional, for example. It is important not to make any assumptions here, and through just a little communication, we can understand the person’s preference. We have a designated ’quiet room’ which can be used for such instances.

In terms of managing patients who are acting socially inappropriate, I believe that staying calm, being empathic and a good communicator are essential. Distraction, by changing the topic of conversation, for example, can be useful at times.  People who have lost their inhibitions typically do not respond well if they are told that their behaviour is inappropriate or wrong, and this could potentially cause a conflict.

Me: That is some good advice, thank you.  As a final question, I wanted to know whether you think working at the clinic has changed your view of dementia?

Harry: I think people are generally empathetic and compassionate to others whom they can see are struggling. But for many with dementia, particularly in its early stages, a person’s challenges may not be so obvious. It is all too easy to get caught up the everyday demands of a busy lifestyle, which can lead to impatience and frustration with others, and this has certainly been a version of me in the past. Prior to working at the clinic, my only exposure to dementia (as far as I was aware) was in visiting my step-father’s grandmother in a care home a few years ago. Looking back, my ignorance of how many individuals were struggling with dementia, whom I must have come across in my everyday life is startling. Now, I think twice before becoming that impatient individual in a busy supermarket!

Me: Harry, thank you very much for your time and your insights.

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