RADAR-AD researchers: Interview series “Behind-the-scenes”, part 3

In order to showcase the variety of work we do in RADAR-AD, we decided to dedicate the following news items to several RADAR-AD researchers. We talked to them about the work they do for the project, what excites and challenges them the most, especially at times of the present COVID-19 pandemic, and how they see the impact of our project for the wider field of Alzheimer’s research.

First we talked to Andrew Owens from King's College London.

What is the focus of your work within the RADAR-AD project?
My work in the RADAR-AD project is primarily focused on the identifying and measuring how Alzheimer’s disease affects the person with dementia’s ability to function in everyday life. Function is usually measured by activities of daily living, such as getting dressed, preparing a meal, driving, going to work, engaging in hobbies or socialising. Currently, activities of daily living are measured subjectively during clinical visits by asking the person with dementia or carer how well they can carry out activities of daily living. In RADAR-AD we are investigating if using remote measurement technologies, such as smart phone apps and wearable and home-based sensors, provide more sensitive, objective and up-to-date measures of function by passively and actively collecting data on activities of daily living during everyday life.

What do you enjoy the most about your work on the project?
My nature of work on the project means that I get to collaborate in equal part with people with dementia and their carers, clinicians and technology experts, providing lots of variety and varying input to integrate into my work.

What is challenging about your work?
The scale and ambition of RADAR-AD means that there are often multiple areas, issues and voices to accommodate but this only serves to strengthen the output of RADAR-AD.

What do you think is the importance of the project for the wider field of Alzheimer research?
I hope that it will support the argument to place more importance on function in Alzheimer’s disease and lead to a reconsideration of how to enhance current diagnostic and treatment approaches.

How has the COVID-19 crisis impacted your work?
The COVID-19 pandemic has made clinical research challenging but in RADAR-AD, we are working with people who are particularly vulnerable to both the virus and to being negatively affected by social distancing measures. This has changed the landscape and provided new challenges but also strengthened the case for employing remote technology to continue to treat and care for the most vulnerable members of society.

Dr. Federica Lucivero works at the University of Oxford and is involved in researching the ethical issues that emerge in RADAR-AD. Her main field of expertise is bioethics and philosophy of technology. In her work for RADAR, Federica provided an overview of the ethical issues relevant to the project. Moreover, she led an interview study which delve into the concerns and hopes about RADAR-AD on part of different members of the Patient Advisory Board (PAB) appointed for the project. Federica shares: “In these interviews we wanted to extrapolate the values and moral attitudes in people’s hopes and concerns about this project.”

What do you enjoy the most about your work on the project?
I really enjoy the fact that I can talk to different researchers as well as potential participants. I enjoy doing interviews and trying to understand what matters to people who could benefit from this project. At the same time,  I am interested in the methodological and ethical challenges that researchers are facing and think about ways to help them address these challenges.

What is challenging about your work?
This is a very technical project and my background is in philosophy and social sciences. In this sense, in order to explore issues in a pertinent way, I really need to understand the science and technology in this project. It is definitely very rewarding and enriching to learn so much but it can also be challenging to fully understand the more technical aspects of the project.

What do you think is the importance of the project for the wider field of Alzheimer research?
I believe it is very important to explore the potential of digital technologies and devices we use in our daily life. We always keep these devices with us, but can they help us address important questions?.

How has the COVID-19 crisis impacted your work?
We are lucky to have conducted our interviews before the lockdown was imposed. We have completed almost all of them and managed to do another one recently via a teleconference. In fact, I found out that it is much easier to talk to other researchers involved in project nowadays as they work at home and are willing to meet online and talk. I am focused on working on publications and other papers at the moment. And, once the enrolment for study participants has started, I would like to start an ethics club with researchers which is something I have been planning for a while now and I am excited about.

How have you adapted to the new circumstances created by the pandemic?
Many of us are struggling to combine work commitments and family care. Of course, these unusual period requires from us to be more flexible and I have adapted accordingly. In my case, some days I work in the morning, other days  in the afternoon. And almost every day, I need to catch up with work at night, when my 2 year old son is in bed! I appreciate that people are very understanding and flexible as many share similar difficulties.

Vera Nies works as a Program Manager at Lygature and is based in Utrecht, The Netherlands. Her main tasks are to keep track of the overall progress of the project, and to help the project run smoothly. This includes a variety of activities, including organising meetings, keeping everyone aligned on the project goal, and help solving problems that sometimes pop up. 

Vera enjoys the contact with partners from different disciplines, countries and backgrounds. She finds the work with these different types of people enriching and takes pleasure in providing overall support so that the researchers in the project are able to do their work. Vera also enjoys solving issues on the project as they arise.

Specifically, she shares that she enjoys the complexity of the project: “In RADAR-AD we have over 50 people at 16 different organisations contributing to the final goal of the project. This goal is ideally achieved within a given amount of time and funding. Each organisation is responsible for a different part of the work, but very often they rely on each other’s activities to be able to move forward. This creates a certain level of complexity. Understanding this complexity to the fullest, safeguarding everyone’s interests, and making sure that the incredibly talented people in the project have what they need in order to perform their work within the given time frame, is what I enjoy most.”

Due to the complexity of the project, Vera continues, you don’t always have control over the workload you receive - sometimes there is something unexpected happening and you still have to manage the work and adapt to it. This can prove to be challenging at times.

On the importance of the research done in RADAR-AD Vera shares: “What this field is struggling with is that the disease is heterogeneous in aetiology. This makes it hard to develop medicines and tailor-made therapies for people living with Alzheimer’s. Despite years of research, there is still no treatment available against Alzheimer’s disease. What RADAR-AD can bring to the field is information on which functions are affected in people with Alzheimer’s. This can help to stratify patients, provide tailor-made support, and  help to develop better therapies and treatments.”

In relation on the impact of the COVID-19 crisis on Vera’s work, she elaborates: “We had to cancel the annual meeting for the project, which was scheduled for early March 2020. It was a pity that that meeting could not take place, but it was the right decision to take. Instead we organised  a digital meeting to still be able to connect to each other. This went very well. However, I do really miss the real-life contact with partners in the project and colleagues in my organisation. This also accounts for my life outside work. I love socializing, so not being able to visit my friends, family, sports group, explore the city or try a new hobby has been tough for me, especially in the beginning. On the other hand, I now had plenty of time on my hands to work on the new house that I recently bought. Apart from that, I go out for a run or capoeira every day, and call my friends a lot.”

Furthermore, Vera explains that the start of the clinical study is impacted by the current crisis. For enrolment in the RADAR-AD study, participants would have to leave their homes to receive devices and instructions at the clinical sites. In many countries, this is currently not feasible. We are exploring ways to facilitate the start of enrolment in a safe and responsible way that complies with COVID-19 related regulations, and takes the local situation into account.