Podcast – Alzheimer’s Society keeping research going during a pandemic

Voice Over:

Welcome to the NIHR Dementia Researcher podcast brought to you by DementiaResearch@nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society. Supporting early career dementia researchers across the world.

Hannah Churchill:

My name is Hannah Churchill. I’m the Research Communications Manager at Alzheimer’s Society and I’m delighted to be guest hosting this podcast for the Dementia Researcher website today. So, thank you to Adam for letting me loose on this.

Today we’re joined by Claire Pentecost from the University of Exeter Remco Tuijt and Nuriye Kupeli from the University College London. All Alzheimer’s Society funded researchers. We will be discussing the impact of the pandemic has had on their work and how they’re rising to the challenge and adapting their research programmes to understand the impact on people affected by dementia and provide evidence based support and guidance.

Alzheimer’s Society itself has been badly affected by the pandemic as well, so we’ll be touching on the impact that’s had for our research program and our commitment going forwards.

So, as we’re all aware, we know that people with dementia have been hit badly by the COVID-19 pandemic. Over a quarter of people who’ve died with COVID-19 from March to June had dementia. That’s over 13,000 deaths. The largest increase in excess non COVID-19 deaths was also people with dementia. And those living through the crisis, the effects of social isolation have been having to fear for both those with the condition and they carers.

Alzheimer’s Society has been supporting dementia research for decades now taking on dementia from all angles, seeking to understand the underlying causes of different types of dementia, looking to develop new treatments and understanding how it can be prevented.

Alongside this, Alzheimer’s Society is also the UK’s biggest charitable funder of dementia care research which we’re going to be taking a look at today. Alongside the Economic and Social Care Research Council and the National Institute of Health Research, we held the first Dementia Care Research Summit earlier this year. And we’re seeking to raise the profile of this area of research and the current pandemic has demonstrated the challenges associated with dementia care and the immediate need for focus and greater investment in this important area.

So, without further ado, let us meet our guests for today. We’re going to talk a bit about their work, how it’s been affected by the pandemic and how they are adapting to consider both the pandemic and dementia in their work as we go forward. So, it would be great if we could introduce ourselves. Let’s start with Claire.

Dr Claire Pentecost:

My name is Claire Pentecost, I work at the University of Exeter within the reach programme of work, which is all about dementia and understanding how we can best support people with dementia. And that’s headed by Professor Linda Claire.

So, I work on IDEAL-2 which is funded by the Alzheimer Society. And it’s a large project including six different aspects of work to try to understand how we can help and support people to live well with dementia. So, it’s understanding what living well with dementia is for people with dementia and their carers and guidance, trying to provide guidance and support using that information and that data. So, the different aspects which I might go into a bit later on perhaps. My job is the programme manager, so I sort of help coordinate all the different work streams.

Hannah Churchill:

Wonderful. Thanks Claire. Okay, Nuriye would you like to introduce yourself and the focus of your research?

Dr Nuriye Kupeli:

Thanks, Hannah. As Hannah said, I’m Nuriye Kupeli and I’m a senior research fellow and an Alzheimer Society funded fellow based at the Marie Curie Palliative Care Research Department at UCL. And I was given some funding by the Alzheimer Society to do a fellowship looking at family care as experience of compassion.

And when we talk about compassion, I’m talking about compassion not just for the self, but also for others. And my fellowship also involves developing a compassion-based intervention for family carers.

So, we know obviously, that caring can be so difficult and despite the best that they do, family carers can still experience and report experiencing quite difficult sort of self-critical thoughts about how well they’re doing. So, I want to tap into new ways of developing interventions that can help manage healthcare and to manage difficult emotions that arise as a result of caring. My work involves developing a tool to measure what we think compassion might mean to family carers, and then we’re working with family carers to develop a compassion-based intervention.

Hannah Churchill:

Wonderful. That also ties into the IDEAL work that Claire mentioned as well. Okay, and our last guest Remco Tuijt.

Remco Tuijt:

My name is Remco Tuijt and I’m a PhD student at University College London as well. I’m funded by the Alzheimer Society through one of the Centres for Excellence in Care Research, which is actually based in Newcastle. The Pri-Dem Centre for Excellence, which is looking at post diagnostic care for people with dementia.

So once they have a diagnosis, how can we support them and specifically my interest is looking at how access to health care is managed with people with dementia as well as their carers as well as their health care professionals. So, I’m taking a qualitative approach by doing interviews with people with dementia, the carers they identify, family carers and the healthcare professionals that they see as they are also important to their dementia care. And using this information to identify the different perspectives that they each have and bring to the post-diagnostic care that people are currently receiving as well as what they would like.

Hannah Churchill:

We have seen as of recently and we’ve known for a long time about the importance of sort of the holistic approach in the different elements of the care ecosystem.

The importance of those different elements and the impact that those different elements have felt during a pandemic, an interesting area to explore. Okay, so we’ve mentioned already, we know that dementia research has been hit very hard by the pandemic. We surveyed all of our researchers earlier in a pandemic in July, and many of them told us their work had been disrupted and delayed during the pandemic for obvious reasons. So just reflecting on that, how have your areas of work been impacted? And have there been areas that you have been able to continue of your original planned work, and we’ll go on to talk a bit more about this sort of COVID elements of your work in a minute. Let’s start with Nuriye, would you like to go first?

Dr Nuriye Kupeli:

Sure. So just before the pandemic, I was in the process of developing a tool. My fellowship consists of five work streams and the first we aimed to develop a tool and following some qualitative methods using focus groups and qualitative interviews. So just before the pandemic, I was in the process of developing that and what I was planning on doing was doing a large survey study with family carers to test the tool and to better understand what compassion means for them.

Obviously, because of the pandemic ethics committees put a halt on approving amendments and prioritizing more COVID related studies. And in addition to that, NHS sites have not been open for recruitment which has meant that basically my study has been put on hold until I can get back into the NHS sites to start recruitment. I have been in touch with obviously various NHS sites and they are all just all saying that it’s probably not going to likely to start back up until the new year. So, although I haven’t been able to conduct this particular study, I have done some other COVID related research which I can talk about later.

Hannah Churchill:

Great, thank you. Remco what about your area of work, how have you been affected?

Remco Tuijt:

So, my research method is doing interviews and I’m primarily interested in people that are currently living in the community. So, my interviews would have been conducted in their houses, obviously that is not feasible at all during the pandemic due to the risk of bringing back contamination in general and other issues with that. So, my research study received ethical approval earlier in the year before the lockdown and everything else related to that came into place. So, I had a study that was approved, but didn’t have any means of recruiting anyone because we couldn’t feasibly do any interviews face to face. And so, to adapt to that really, we submitted an amendment to focus on COVID related elements as well.

So that we could do telephone interviews and reach out to people remotely which was a bit of a new area for myself, as well as my supervisors. Because doing telephone interviews without previously establishing contact with someone can be quite difficult, but I can talk a little bit more about that later. So, in that sense, planning to speak to people face to face was obviously just directly off the table as soon as we got an idea of how much impact that’s really hard.

Hannah Churchill:

Yes, a huge problem. And Claire the IDEAL team, obviously a huge team and lots of different areas of work. So how has that been for your team?

Dr Claire Pentecost:

Well, it was a little bit scary in the beginning, we had to rethink a few things. Similar to the other speakers as we couldn’t recruit to do research. So, one of the big elements of IDEAL is a longitudinal study which is over seven years. Collecting data from people with dementia and their carers to look at their trajectories of how they’re doing regards to their health, their well-being and their feelings about how they’re getting on. And we were collecting some data time point four and time point five and basically, we had to stop in March. So, we’re sort of midway through time point five, but a lot of people had yet been contacted or seen.

We have research nurses going out and across the whole country, so we’ve got 29 research sites across the whole country seeing our people. We had a total of 1,547 people in the original time one and were trying to follow these people up as time goes on. Unfortunately, that has stopped, but we did manage to collect certain bits of data by post. We did make some amendment changes so that we can collect consent over the phone for someone to tie some loose ends up. But primarily, that piece of work been has been delayed. So we’ve made other changes to work, specifically some COVID related work to try to mitigate some of those risks.

Luckily, with the other work streams that we’re doing which is more desk based, so we can continue with those things switch into that mode a bit more. So writing things up and looking at our previous data, which luckily we could continue with so that was the initial change. But since then, the COVID stuff, the COVID research luckily has been able to take off which is, which is great because we can still ask the relevant questions.

Hannah Churchill:

Yeah, so a bit of a shock to the system to everybody in March, just with everything grinding to a halt. But on the bright side of things, nearly 50% of our researchers told us that they were also carrying on research focused on dementia and COVID as well. So we know lots of our researchers, including our guests today have been instrumental in recognizing the impact of the pandemic on people affected by dementia and adapting their work to investigate this impact.

Of course, we cannot make any changes or inform any policymakers of issues without carrying out this work and understanding exactly what’s going on, the impact the pandemic is having and providing evidence based support and guidance for people who have been worst hit like those living with dementia.

So this is really what I was looking forward to talking about today, is finding a bit more about how your programs of work are considering the impacts of COVID and on people affected by dementia and any outputs and observations you’ve made so far.

What have your impressions been of people’s experience of the pandemic and lockdown so far? And it would be really fantastic if you could share anything you have on that as well. Let’s go to Remco, are you happy to talk a little bit about how you’ve been adapting your work considering COVID and dementia?

Remco Tuijt:

I’d be happy to talk about that. So obviously back in March when we heard about the full lockdown and we wouldn’t be able to really go out, the idea of switching to remote interviews was something that we focused on. And tried to figure out the best way of doing that in order to make sure that people with dementia and their carers could still be a part of research at this time. Once we figure that out and gotten the necessary approvals, we started recruiting mostly online which was something that was more new to me. But at that point the Join Dementia Research register came in quite handy, which is a national register which is funded by the Alzheimer Society I believe.

Hannah Churchill:

Alzheimer’s Society is a partner in Join Dementia Research.

Remco Tuijt:

Join Dementia Research allows people with dementia to register their interest to take part in research that’s being conducted. And so being able to contact people to see if they were interested through the register was crucial at the beginning as well as the Alzheimer Society Research Network.

Where I circulated the appeal to see if people would be interested in taking part in a telephone interview. So over the course of the last couple months, I’ve been able to interview the number of people I’ve been interested in which is about 30 people with dementia as well as their carers. We’ve made the decision to not contact the health care professionals that we were originally planning on including at the first time point.

Because that’s where obviously, the management of COVID for healthcare professionals, whether their GPS or memory nurses or other specialists needed to be prioritized. So we didn’t want to put additional burden on them. For in the first time point we were able to do a number of interviews with people with dementia and their carers, which is very interesting to hear about how they’ve been managing. And my initial interest was on how they were engaging with healthcare in general, that now became how have you been engaging with health care during the pandemic?  Whether that would be remotely, whether that would be making the decision to go in in person somewhere and what factors into making those decisions. Especially in the early stages, we heard a lot about people who would refrain from going to any kind of healthcare encounter.

So a lot was postponed obviously, but a lot of people who might need emergency care decided not to engage with that because they were afraid of the risk of COVID. As things progress, people started receiving more and more remote health care. So telephone calls or electronic consultations from their primary health care practitioners or other members of the healthcare team that might be in contact with them. And discussing with them really what’s been important to make those encounters work well for people with dementia and their carers. Not just in general with the provision of care, but also with managing that as a family member as a person with dementia and discussing that together or separately in some cases as well.

So that’s been very interesting to now bring that to light as well. And as we go forward and think about the remote provision during the rest of the pandemic or just in general, where we think we might adapt to healthcare systems. It’s going to be increasingly important to monitor that as well and to see what kind of experiences develop later on. So we’re lucky that we are able to do secondary interviews, to follow up and see what’s changed and how people have managed since then.

Hannah Churchill:

And what has your impression been of people moving to a more virtual healthcare approach? Has it been received well? It’s obviously been a necessity at this point, but does it feel like it’s something that could continue into the future and is something that’s viable?

Remco Tuijt:

Well, I think there’s always been this idea that pushing towards more remote provision would free up time for certain practitioners. So that’s definitely been on the agenda for a while and COVID sort of move that forward. And it’s important that when we move forward with that, but we still  must think about the people who might have difficulty accessing those kinds of care. And that is what we are seeing that people with dementia and their carers are finding that difficult in some ways. But it’ll be interesting to see as they will get more used to it over time, or if they could consistently see difficulties in engaging with that. Obviously, during the pandemic there was a huge shift suddenly on one go.

And so the fact that we’ll be able to speak to people again and see if they’re facing the same issues, or managing to find strategies for that is something that we’ll be able to communicate about and plan for. We do see where the family carer is a child for example, they’re much more comfortable in engaging with remote health care. Whereas if it’s a spouse who might be helping the person with dementia, they’re finding it increasingly difficult.

And not just for the care for the person with dementia, but also the carers care on top of that as well. So that’s definitely something that we’re looking into, to continue and follow up to see what kind of experiences and what kind of strategies people are developing. Because overall, there’s definitely a preference for face to face care, but there is an understanding that that’s currently not possible.

Hannah Churchill:

Yeah, it’s a reflection of this as we’ve known always with dementia, the importance of person centred and individualized care. Brilliant, thank you Remco, that’s fantastic to hear. Let’s go to Nuriye, I know that you’ve mentioned that quite a lot your Alzheimer Society funded has been on hold, but it would be fantastic to hear a bit about your COVID area of work as well.

Dr Nuriye Kupeli:

As I said earlier, I was unfortunately unable to adapt my fellowship work to fit around COVID. But in the meantime what we have done, so myself and Dr. Nathan Davis also based at UCL, we were awarded an Economic and Social Research Council and UK Research Innovation Grant. To study the challenges family carers and people living with dementia experienced during the pandemic and the sorts of decisions they’ve had to make. So obviously, we know that family carers have to make difficult decisions all the time, but this has been made even more difficult with the pandemic because a lot of people aren’t able to visit the people they’re caring for. And obviously with all the stories in the media about care homes they’re having to make remote decisions without seeing the person they are caring for.

And also sometimes making decisions with a health care professional that they possibly may have never met before, which obviously can be quite distressing. So through this work, what we did is we worked with the Alzheimer Society and Marie Curie and Dementia UK, and we use various ways of trying to understand this obviously. Like Remco and Claire, we’re not able to do any sort of face to face research, but what we did is we looked at the Alzheimer Society online community to get a better understanding of what challenges and concerns that family carers were reporting. We also spoke to help helpline staff at Marie Curie and Dementia UK again, to find out what are people calling the helplines about.

And actually one of the things that we come away with, is ever since the pandemic more and more people like Remco said is those who are able to use virtual means of support they are seeking support in different ways. Although they might not be able to see their GP or other healthcare professionals, what they’re doing is they are resorting to online communities to get support from other carers and also using support help lines that say people like Alzheimer Society and Marie Curie and Dementia UK offer. And so what we found was that a lot of the decisions that people were making we focus much more at the end of life and some of the difficult decisions that are usually made around the end of life.

So this included things like whether or not someone should go to hospital if they become unwell, and what it means to do a DNAR resuscitation order. And what we’ve done is use all the information that we’ve gathered through all these different sources and we’ve developed a guide to help carers make these difficult decisions.  And what it does is it takes into consideration the wishes and the preferences of the person living with dementia and whether they’ve made things like advanced care plans. We also through this guide, we provide tips for carers such as some of the COVID-19 symptoms to watch out for because what we know is actually that people living with dementia may not present the usual symptoms that have been promoted through the media.

So we’ve tried to help family carers to become much more informed about what to look out for and then to make more informed decisions. So the guide is actually available. It’s available on the UCL website and we really hope that it’s also useful for carers especially if there is a second wave.

Hannah Churchill:

Yeah, absolutely and we’ll be sharing that on the Alzheimer’s Society website, actually I think it may already be up there. Following up on that so I’m sure there were a whole swathe of different issues that people were concerned about, but were there top three stand-out issues that you felt people were concerned about caring for their loved ones who are living with dementia at the moment?

Dr Nuriye Kupeli:

Yeah. We found things like whether I should let someone like a health care professional or carer from outside come in and care for the person I’m caring for. The other one that we found that it sounds quite distressing is whether or not people make a decision whether or not to put someone in their care home during the pandemic.

So obviously is somebody has been hospitalized and they’ve become quite poorly and could no longer live on their own independently, do I make the decision to then move them into a care home? And then the other thing that’s coming up quite a bit is about whether or not I should be visiting them and if I do visit them, how do I visit them? And if I can’t visit them, what things can I do to make sure that they know that I’m there? So it’s been a range of challenges and concerns, but they’re probably the main three that have come out of our work.

Hannah Churchill:

There’s been a lot of campaigning in influence work on the Alzheimer’s Society have been doing around access and visitation for residents in care homes. There are challenges around that, but ensuring that we can do that in a safe way. We know that isolation has not been a good thing for lots of people living with dementia. Thanks, Nuriye, that’s fantastic. And moving on to Claire and the IDEAL Project. I know there’s been a huge amount going on and we’ve already touched on this, you’re adapting to consider the impact COVID and the fact that it’ll have on living well as well. So it would be great to hear more about that.

Dr Claire Pentecost:

So initially we had emergency meetings with our project advisory group and our patient involvement group to think about what we could do in response to the COVID pandemic. Like Nuriye, we used some of the networks to try and think about what was happening in the community and how people were coping or not coping. And we heard that people were initially there’s a lot of panic including abandonment when people didn’t really have very much information. And then people started to see that there was some gradual understanding about how their life could go on and that adaptations could be made to people’s lives.

So we heard that from the network’s and we also had some evidence based on what we had already collected from IDEAL about what we understood and was important for people to live well. What we wanted to do is try to put together some guidance and support quite quickly based on what we knew and using our colleagues and our networks to put together some useful guidance which would be quick and rapid. Because we heard that there was lack of information and cohesive information and it was confusing. So that was one point of course so we put together some leaflets and they went on to a website, our INCLUDE Project website.

So we got funding to do that and we work with the Department of Health and Social Care and the Alzheimer’s Society to think about what was needed. The guidance gives five points of what you need to look out for to help yourself. And we’ve updated that based on some of the feedback that we’ve got and some of the changes that people have experienced and it also been translated so obviously there’s a wider number of people that can access those too. So that was the first thing that we did. So like I said, we’ve got some funding to do that and in addition to that piece of work, so this funding came from the ESRC and it was basically a dementia initiative agreed with the Department of Health and NHIR.

The other thing we wanted to do was to interview people with dementia so we could go to the people who are already participants and include to be part of the longitudinal study. We approached them and ask as many people as we could to agree to an interview to ask them in depth what issues they were facing, the problems that they had, but also the things that they were doing to help them cope. And also where there are gaps in services and what services they needed and they weren’t getting and also the positive things that were coming out of it if anything the positive changes. So we’re looking at those interviews now and we’re trying to consider what it all means.

And the good thing is that we did manage to get quite a few people really interested in talking. They’re interested in telling us their experiences and actually doing interviews over the phone with people with dementia. We thought that might be an issue or difficult, we had to get consent over the phone and that kind of thing, but the ethical approval process has been changed so that made things quite a lot easier. So we managed to get 22 interviews that was roughly split between people with dementia and their carers and so yes we found some interesting things. We found that there were quite an interesting split between the levels of coping amongst people.

So for some people were doing really well, actually quite happy and others that are doing not so well, and some people were doing quite badly. But of course a lot of people were suffering from isolation and the access to services had stopped and people were starting to feel stressed and anxious in a lot of cases. And the issues that people were facing, the people that we’re doing less well some of them their dementia had progressed and they were having difficulties with their memory or their communication for example. So definitely there’s some dementia specific impacts on people which over and above the normal things that the general population have experienced which has obviously been very stressful for people.

But interestingly, we didn’t see a difference in levels of coping according to people’s type or stage of dementia or their age. So in some ways that was quite reassuring because really it was about other things and people finding difficulties for other reasons or people doing well for other reasons. So one of the big things was about living alone, people that were living alone were doing less well generally and so people who had access to support or had someone to help them of course you could imagine then that would be more difficult if you’re on your own and dealing with memory issues especially if it services had stopped, you weren’t getting your carer coming in to help you do your necessary things.

On top of this, we also were able to re-invite some of the people back for some interviews. So we’re interested to know what their changes over time might be. So for the ones that weren’t doing so well we’re interested in what happened. So we interviewed those people and we also did do some interviews with people from black and ethnic minority groups as well. We had one person in the original group which is actually fairly representative of the numbers of people that we see diagnosed with dementia in the community in black and ethnic minority groups. We wanted to do a few more to see if there are other issues that we needed to think about.

So generally the people from black and ethnic minority groups were very similar in lots of ways, same sorts of issues, but there does appear to be some problems of trust. So trusting the information, trusting the care they might receive. And so we’re looking into that a bit more to see how we may be able to address that in how the information is presented, who presents the information, what the content of the information needs to be so that more people can engage with it. Because obviously it’s important that people are informed and know how to stay safe essentially. And in terms of the follow up interviews, what we found is of course with the progression of the disease in the beginning when we did interviews it was fairly early on.

Around April-May time and the second lot of interviews were a couple of months after that so there were some changes in the restriction. So there were some easing of restrictions and people were allowed go out a bit more, but there were two things. There were some anxiety about going out again and some problems or concerns about the community not being dementia aware and not being supportive or mindful of someone who might not be remembering the rules or not being able to distance properly. So there’s some anxieties about that and of course, anxiety about catching the disease if they weren’t safe going out. But we also found people did improve. So as you would expect some people might improve because there is less concern about the numbers of people that were ill in the community.

And some people did change their mindset and think about, “Okay well I can overcome this, I can move forward, I can overcome my fears and go out and enjoy being outside.” And so it was nice to see that some of the people that weren’t doing so well some of them did make some improvements. So obviously you have to look at people as individuals and look at their concerns, their problems and their issues that they’re having and ideally, we really need to target information according to where they’re at the time and quote people can change, and move, and shift and learn. People did learn how to use the Internet and more and more people are doing that. But of course as you both said Remco and Nuriye, the importance of face-to-face contact is still really valid.

And it’s how can we incorporate more of that in the future, but in a safe way, but also help support people to go online, as obviously there’s a wealth of things that can be done online as well. And the great thing is that people can adapt and learn and even people with memory problems and difficulties of course they can. So there’s some positive stories as well as clearly there being an issue and a need to make sure that people with dementia are treated as a group that needs some attention and their needs need to be considered.

Hannah Churchill:

It’s nice to hear that. It’s been quite a bleak picture often and I think hearing some of the positive or at least the adaptations that people are being able to make to be able to live well through the pandemic is really nice to hear for a change. There’s so much information coming out of the IDEAL team and it’s really fantastic for feeding into implementing work and highlighting some of the priorities that we need to target to help people affected by dementia at the moment. So I know that the guidance leaflets that the IDEAL team developed have been incredibly well received and it’s really fantastic to hear they’re being translated into other languages as well to make them accessible to broader groups. So brilliant to hear.

This is a question which I didn’t actually include when I sent it around to you guys, but I wanted to ask you touched on some of the changes to the ethics committee, some move towards making perhaps recruitment and some processes in research faster and easier as a result of the pandemic and the shift that we’ve been forced to make. I’ll open this up to you all, have there been any other silver linings in learnings or adaptations that you’ve seen that you think or ways of forward as we hopefully come out the other side of the pandemic which will support dementia research going forward?

Dr Claire Pentecost:

I think our approach prior to COVID in recruiting people and collecting data from [inaudible 00:33:37], but the IDEAL Program so far the documents that we used to collect data were quite long actually. So what we do is we see people face-to-face, we give them an opportunity for breaks, it takes about two hours and it’s fine, that’s been happening.

But with the shift and not be able to see people face-to-face, we did worry that it would be very difficult to collect data. That type of length of time on the phone and how would people cope and how would people cope using Zoom or these things, but it obviously it’s clear that people can and do and are able to have the interviews.

So one of the things that we had to do was we had to take consent over the phone, and we were concerned that can you get informed consent properly from somebody and making sure that they fully understand what’s been asked of them? And the answer is yes. You have to go through the processes and check and talk to them and spend a bit of time, but of course yes it can be done over the phone. I’ve done it before over the phone in other populations. So it’s nice to know that these things of course, we can do that and we can do it properly and ethically. And I think that the ethical committees and the process has been made easier in lots of ways or quicker so we were able to get quite quick response which was really nice.

Hannah Churchill:

Yeah, definitely.

Dr Claire Pentecost:

In order to get started on the COVID initiative the IDEAL CDI work and also a new one which I hadn’t talked about that INCLUDE Project which is another way that we’re collecting data. But we’re going to do that over the phone collect the data rather than using paper forms and things. So it seems like there’s been a lot of energy to try and make it work for researchers. There’s been a lot of energy put into it to make it easy to do, quick to do, but it’s still a good process. So hopefully that will stick around because that’s easier for everyone.

Hannah Churchill:

Definitely. Yeah, Nuriye.

Dr Nuriye Kupeli:

Just echoing what Claire was saying. With the COVID grant that we got, we got the grant and ethics commissions to do qualitative interviews with helpline support workers and to analyse some of the data from the Alzheimer’s Society online community. And we did the project and developed a decision guide within four months. And that involved getting together all the PPI who helped us basically inform the development of the decision guide. We had experts who met up as a focus group including Tim Beeman from the Alzheimer’s Society. So I think it’s basically like Claire was saying, everybody came together and just thought that this needs a rapid response. And similarly with the ethics committees, they prioritize a lot of the COVID studies which meant that we got ethics within a week so it’s been incredible.

Hannah Churchill:

More of that please. Definitely.

Dr Claire Pentecost:

It’s definitely exciting to get something back that quickly like, “All right we can get going and we can get started.”

Hannah Churchill:

It’s fantastic.

Dr Claire Pentecost:

And the research is needed now, we need to collect this data now because it’s happening now and of course COVID is changing rapidly. So the speed of the work has been fabulous. It was very unexpected.

Hannah Churchill:

Yes we want to hold on to that as much as possible. So one last point because otherwise we’ll be talking forever which I could very happily do. I have to ask this, as Alzheimer’s Society research accounts manager.

We’ve been hit very hard by the pandemic and unfortunately as I’m sure all of you are aware we’ve paused our research funding program for this year and we’ve had to adapt a lot of our other services and work as well. And medical research charities anticipate a 40% reduction in research investment this year. So I’d really love to hear very briefly from each of you your experience of and why you feel medical research charities like Alzheimer’s Society are important particularly for early career researchers and your concerns in that area. Let’s start with Nuriye just really quickly.

Dr Nuriye Kupeli:

Getting a fellowship from the Alzheimer’s Society was an absolute incredible achievement. It’s not an easy process, but it was an opportunity and the advice and the help that I got and the support I got from the Alzheimer’s Society has been incredible. In a nutshell it basically allowed me to spread my wings as they say and to follow my own interests and passions in dementia research. And so I was able to do the things that I wanted to do and take my interest further. So yeah, in that sense it’s been a great opportunity.

Hannah Churchill:

Yeah so important for allowing an early career research to do that. I don’t know if Claire or Remco want to add to that.

Remco Tuijt:

I’m in my final year of my PhD now so this is really the point where I am starting to think about the future career that I can have and I think the Alzheimer’s Society has really created such a great environment for dementia research as well. Encouraging it, supporting it, and funding it, but also trying to move the field forward. And I think that’s something that I’ve been able to see not just through my PhD but also before.  And that’s something that’s so exciting and it is a bit of a shame that there is that worry now with regards to the funding with regards to what is the future at the moment. And I think that’s where I’m seeing the Alzheimer’s Society coming together and writing that letter to the governments asking them specifically to continue this funding to make sure that we can continue doing that. To me as an early career researcher it means a lot as well. So thank you.

Hannah Churchill:

Oh, yes, absolutely. Our pleasure. We fully appreciate how important our early career researchers are and we need to safeguard the future of dementia research and make sure that we continue to support that.

And at this stage we fully anticipate being able to continue our research funding next year. It’s obviously a volatile situation, but we hope that will be the case and we’re committed to supporting research going forward. So we’ll touch on a couple of things so…. Oh Claire yes, absolutely.

Dr Claire Pentecost:

I’m not a dementia expert, but I come from different populations all different things and this particular program of research is a really good question. It’s a really important centralized question about how can we help people live well? It’s not to ignore the fact that people can live well and do live well, and how can we best support that. So it’s a really important question and the Alzheimer’s Society by funding this big program of work, there’ll be so much information or already is coming out that has been used by the Alzheimer’s Society and at Alzheimer’s Society. We have a really unique position to be working closely with the Alzheimer’s Society in thinking about policy and impact and the future.

And so we’re guided by what’s current, what’s happening, and how can we best put our findings into practice, but also to be guided about the most important questions in some of the current things we’re working on to make sure that that is impactful for the future. So that for me is extremely exciting and with the current climate, with the uncertainties with funding, we obviously we hope that this work will be finished and completed. But all the way through the Alzheimer Society have been able to talk to us about what we’re doing and how we’re doing it and I could say how to be impactful as best we can which is very encouraging. So obviously, we all hope that the work can continue and we are able to put those really important messages out and complete it all in good time.

But if not, we might extend that time frame and hopefully get it done a bit later on. But yeah, it’s good stuff. It’s all really good research so everyone is all getting useful stuff that have an impact on people and their lives in the future. So that’s what I’m all about.

Hannah Churchill:

Absolutely. I think that’s the key point is that we really want to see that translated into impact for people affected by dementia and that’s why we’re all here. So at Alzheimer’s Society we’re incredibly proud of all our researchers and the way that they’ve adopted and persevered through the pandemic. And as I said before, we’re committed to supporting dementia research going forwards. You can find out more about Alzheimer’s Society by visiting alzhimers.org.uk/forresearchers for all the latest news and updates on our research funding program. It’s also Memory Walk season which is our flagship fundraising event which I would be in trouble with our teams here if I didn’t mention. So, go get your walking boots and sign up at memorywalk.org.uk.

I’d like to thank our panellists, Claire Pentecost, Remco Tuijt and Nuriye Kupeli for their time today.

Thank you so much for coming along and shameless supporting Alzheimer’s Society. We have profiles of today’s panellists on the website including details of their Twitter handles. If you’d like to ask any follow up questions or if you have any questions do reach out. On the dementia research website you will also find a full transcript of this podcast. Finally, please remember to like, subscribe, and leave a review of this podcast wherever you get your podcasts.

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Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society supporting early career dementia researchers across the world.

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