Podcast – Researching the impact of COVID-19 on dementia care

Voice Over:

Welcome to the NIHR Dementia Researcher podcast, 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.

Dr Tamlyn Watermeyer:

Hello and welcome to the Dementia Researcher podcast. I’m Tam Watermeyer from the Department of Psychology of Northumbria University, as well as the Center for Dementia Prevention based at Edinburgh University. And I’m delighted to be hosting this week’s show.

Dr Tamlyn Watermeyer:

Today, we’re discussing a crucial topic that has affected many people this year, and which we’ve read about a lot in the news. This is how COVID-19 has impacted care services, and in particular our dementia care services and research. The National Institute of Health Research and other research funders, their response has been fantastic during this pandemic. Very quickly, they’ve provided funding to support COVID-related research. And that funding wasn’t only spent on developing treatments and vaccinations, but has also looked into how the virus and various socially-distanced measures that have been taken to keep people safe have been affecting people’s everyday lives, as well as society and care in general.

Dr Tamlyn Watermeyer:

If anything, I think the pandemic has offered an opportunity to uncover certain vulnerabilities within our care systems, but it’s also offered the opportunity to discover how to improve these systems for the most vulnerable in society and for future. Living with dementia at any time brings everyday challenges to the individual with dementia, as well as those who care and love them. It is only right, therefore, that current health research focuses on the pandemic, dementia, and dementia-related care.

Dr Tamlyn Watermeyer:

With this in mind, I would like to welcome our guests today who are three researchers that have responded to the various calls for help in delivering COVID-related dementia care research. I welcome Dr. Clarissa Giebel and Dr. Stephen Mason from the University of Liverpool and Jacqueline Cannon from the Lewy Body Society. Welcome, guys.

Dr Tamlyn Watermeyer:

Clarissa, many of our listeners are already familiar with your wonderful monthly blogs, and you’ve worked for a long time with the National Institute of Health Research, could you introduce yourself, though, for those people who might not be aware of your work?

Dr Clarissa Giebel:

Yeah. Well, thank you for inviting me for this podcast. So, I’m Clarissa Giebel. I’m a Research Fellow at the University of Liverpool and at the NIHR ARC North West Coast. And my research mainly focuses on how we can enable people living with dementia living independently in the community for as long as possible, and also looking at the inequalities and barriers that people are facing. And with COVID, my work has shifted a bit to put a COVID angle on this.

Dr Tamlyn Watermeyer:

Great.

Dr Tamlyn Watermeyer:

And Stephen, welcome to the show. Could you give us a quick introduction of yourself as well?

Dr Stephen Mason:

Yeah. Thank you. So, I’m Stephen Mason. I’m the Research Lead for what’s called the Palliative Care Unit, which is a research and academic group which is based at the University of Liverpool and the Royal Liverpool University Hospital. And I guess what we do, is we focus on clinical research access, particularly really in palliative care, so not specifically dementia research, but all palliative care.

Dr Stephen Mason:

So, I lead a team of academic researchers and academic clinicians. We do everything from bench-based science to bedside. So, we have guys who are looking, one guy at the moment who’s looking at urine to see if he can identify biomarkers which can be used for prognostication, to researchers looking at the experiences and quality of end-of-life care.

Dr Stephen Mason:

And this is where my research kind of ties in a little bit with the podcast today. So, we are involved at the moment in a large Horizon 2020 EU-funded project looking at experiences of end-of-life care. And that was put on hold due to the lockdown, so we’ve repurposed that study a little bit to look at the experiences of end-of-life care, both for healthcare professionals and for people who’ve been recently bereaved. And within this sample that we have at the moment, about 50% of our sample are bereaved individuals whose relatives or loved ones have dementia. So again, there is a real focus on that within this work that’s ongoing.

Dr Tamlyn Watermeyer:

Excellent. And we will obviously discuss a bit more about the implications of that work in a moment.

Dr Tamlyn Watermeyer:

And Jackie, last but not least, if I could ask you to introduce yourself?

Jacqueline Cannon:

Okay. Yeah. Good morning. And again, thank you for inviting me to join this event today. Yeah. My name’s Jackie Cannon from the Lewy Body Society. We’re a small but vital charity that funds research into Lewy body dementia and promotes awareness of the disease. I’m a former carer for my dad who lived with Lewy body dementia. And for anybody that doesn’t know what Lewy body dementia is, it’s probably best described as the worst bits of Alzheimer’s and the worst bits of Parkinson’s Disease put together.

Dr Tamlyn Watermeyer:

Great. Thank you for that introduction.

Dr Tamlyn Watermeyer:

So, I thought we would focus a little bit on the research in the beginning. And I know, Clarissa, that you have been obviously leading some COVID-related research and you have a particular study that’s just come to press or has been published. Could you expand a little bit more on the study and the implications and findings?

Dr Clarissa Giebel:

Yeah, sure. So, Jackie has been involved in this as well, in this large study, so we’ve been receiving some funding from the University of Liverpool, back in March, quite a quick, turnaround, only a few days to kind of submit the application. So, our research, it was a mixed-method study and we wanted to understand how the pandemic, very early on, is impacting on, so the public health measures, are impacting on accessing social support services for dementia and for older people, so aged 65 and above, and carers as well.

Dr Clarissa Giebel:

So, when we talk about social support services, what we are referring to is, for example, paid carers coming into your home helping you with medication, food, dressing. We are talking about respite care, daycare centers, peer support groups, or social activities such as singing and dancing groups. And as I’m describing them, we can tell they’re all face-to-face, they all involve this face-to-face interaction. And we know they’re really vital to keep a good quality of life for people with dementia and older adults, but also family members and family carers. So we thought, “How on earth are these public health measures now impacting on accessing this support?”

Dr Clarissa Giebel:

So, we did a qualitative piece of work and a survey. So, I’ll talk a little bit about the qualitative bit first. So, what we did in April, and I must say, big kudos to all of the team members in helping us. We are a huge team of academics, clinicians, third-sector providers, such as the Lewy Body Society or the Brain Charity, and we all put our heads together to collect telephone interview data on family carers and people living with dementia. We did 50 interviews over the phone back in April, and then we did up to 20 follow-up interviews three months later.

Dr Clarissa Giebel:

So, we really asked people, “What are your experiences? How have you been accessing social support services before the pandemic? How has it changed? How does it make you feel? And what are your experiences now in accessing them?” So, as we might’ve thought, there was a huge drop in accessing services. And what we also found, already in April, so that was only a few weeks since the national lockdown happened, carers were reporting that people living with dementia had deteriorated much faster as a result of that, suddenly being ripped out from that support.

Dr Clarissa Giebel:

But also what we think is that, well, people were supposed to shield them and not go out. So, not having that physical stimulation of walking, or cognitive stimulation of seeing other people, talking to other people, getting engaged. And also we found that the remote support available back then, now we’re in December, things have slightly changed, but back then there was little to no remote support of any of these services. So, people were quite left to their own devices.

Dr Clarissa Giebel:

So, that’s a snapshot of the qualitative work. And then the survey was a three-time point survey online and over the phone, because we wanted to make sure we’re reaching people that are not digitally literate and don’t have access to their own computer or internet. So, we had over 600 people taking part in the first survey and over 400 in the last one, so quite a nice number of people. And what it showed [inaudible 00:08:57] really, it complimented our qualitative findings because we actually have numbers now showing there’s a huge reduction in how much people were accessing social support services.

Dr Clarissa Giebel:

But what we could also tell, because it was the quantitative data, we showed that reductions in social support, usage, and access were actually linked to increased levels of anxiety and lower levels of mental wellbeing. So, there was the clear link between not getting any social support and reduced mental health and mental wellbeing.

Dr Tamlyn Watermeyer:

Okay. And did your study, presumably you looked at all different types of dementia, and I know Jackie I sort of alluded to how Lewy body’s is the worst bit of Alzheimer’s and the worst bit of Parkinson’s together, did you find that there were differences in responding to the types of dementia? So, I would imagine those which have a Parkinsonian component, getting outside, for the carer and for the individual, might even be above and beyond, have more difficulties with doing so.

Dr Clarissa Giebel:

We have found so far one difference in the qualitative data in that. So, if we imagine all the remote support, like we’re doing now with this podcast, we’re on Zoom, okay, so there’s [inaudible 00:10:13] vision issues. But we do know that there are certain subtypes of dementia, like posterior cortical atrophy, where people would, saying, “Well, my mother, my father has really big issues making out the different…”

Dr Clarissa Giebel:

So, a support group was taking place over Zoom, but then the person with dementia couldn’t really figure out who was in the little Zoom boxes. Whereas, if they were face-to-face with a peer support group they could know, “These are my peers. I know these people,” so there’s these issues. But I think there’s definitely, we’ve collected so much data, there is more room to really understand how does it differ between Lewy body and Alzheimer’s, for example, and the other rare dementias.

Dr Tamlyn Watermeyer:

And I suppose also different caregiver responses as well, too, for the different types of dementia?

Dr Clarissa Giebel:

Mm-hmm (affirmative).

Dr Tamlyn Watermeyer:

You brought in… This obviously was specific to the UK, and I know that some of your work also has a strong global health focus. Given what you’ve found in the UK, how would we be able to even extrapolate that to those societies where maybe the dementia care infrastructure either doesn’t exist or is very dissimilar to what we have here?

Dr Clarissa Giebel:

Yeah, really good question. So, we were approached quite early on by a number of researchers in different countries. And now we have, well, we’re already finishing data collection, so we’ve now got an international study comparing our UK data against Australian data, Poland, Italy, and India. So, they have collected qualitative data and some of them have collected quantitative survey data. But what we did notice is, because some of the data were collected a little bit later in the pandemic, there was quite a bit of survey fatigue. So, more people were interested in talking to someone over the phone, so we’re just analyzing the data now.

Dr Tamlyn Watermeyer:

Oh, brilliant. Brilliant.

Dr Tamlyn Watermeyer:

And I suppose, Stephen, I just meant to say, in your own research with having to adapt it for the COVID situation, have you found that people are reporting, or that the results indicate that palliative services, the likely impacts that COVID-19 is having on them as well, research and services?

Dr Stephen Mason:

Well, within research, I guess there are big challenges, and I think everyone’s having to adapt. So, as Clarissa was saying, I guess, so normally we would do face-to-face interviews as most people would, but most of our interviews now are through Zoom or actually through telephone. We tend to find the patients and relatives we’re speaking to prefer to use a telephone, rather than video conferencing. But obviously you lose nuance within those types of interviews, and particularly, as well, because we’re dealing with subjects that are emotive, from the researcher’s perspective, it’s tricky to both offer that support but also kind of assess how comfortable individuals are.

Dr Stephen Mason:

So, yeah. That makes that tricky as well. And equally, I suppose, with surveys that we would normally administer as well, we would often try and have our researchers help facilitate those questionnaires with people. And again, that’s kind of more problematic. I think in terms of from a healthcare professional’s perspective, it’s the volume and change of work. And also, I guess, the key thing for services is the number of people [inaudible 00:13:47] because of issues with COVID and that, then, impacts on [inaudible 00:13:53] so I think, yeah. That’s a big challenge which adds stress into the system on top of dealing with the clinical issues and the emotional issues that people face.

Dr Stephen Mason:

And I think healthcare services and [inaudible 00:14:11] people are aware, did a fantastic job and people are going above and beyond and doing those extra miles. But I think one of the key things for us is thinking about how we support everyone, from health care assistance up to senior clinicians, towards the end of this process and what’s going to happen towards the end of this.

Dr Stephen Mason:

There’s some really interesting work going on by [inaudible 00:14:36] other colleague. So, one of my colleagues down in Cardiff, Professor Simon Noble, has developed a really interesting way to both collect data in terms of people’s experiences, but also provide a forum for people to vent, effectively, their challenges called COVID Confidential, which is basically a platform where clinicians can either join this online platform and type in their messages, or they can speak into the platform and they can unload. And then Simon and his team are looking at that.

Dr Stephen Mason:

And I guess it’s been quite interesting. Some of the findings he’s already reported, everything from the challenges that people face in managing end-of-life care in COVID to, I think he said one clinician just had a one-word response which was an expletive, in their COVID Confidential kind of framework. So, I think, yeah, there are big challenges there, and I think it’s really key for us to try and document these. Certainly our focus within the work we are doing is, I guess, there’s a lot of public knowledge and there’s a lot of media presentation of what’s going on, but actually documenting this in a structured way so that we can look at lessons for the future is really what our focus is in trying to do this work.

Dr Tamlyn Watermeyer:

Yeah. I suppose that’s really interesting, refocusing it around not just the individuals with dementia and their carers, but also those clinicians who are the unsung heroes of supporting everyone through this transition with getting to grips with technology and all that as well. So, that’s a really good initiative, that, what was it called? COVID Confidential?

Dr Stephen Mason:

COVID Confidential, yeah. I think you can Google search it. And I think looking [inaudible 00:16:25] as well, obviously, there are good and bad examples, but some of the good examples that are really amazing of staff going above and beyond and really showing leadership at all levels, from normal care assistants to senior managers, and trying to make sure that care is really, truly patient-centered, or client-centered, and also centered on the family as well. So, I think there’ll be some really interesting data getting published over the next four to six months showing some of these innovations, which hopefully can be taken forward by other people as well.

Dr Tamlyn Watermeyer:

And that actually sort of brings me to the next question for Clarissa and Jackie. With your study findings, did you have a look at the differences between people in the community and people in care homes? And did you find differences between those different groups as well?

Dr Clarissa Giebel:

I’m kind of in the data all the time at the moment. So, when we did this particular study that I was talking about earlier, in the follow-up interviews which we did in end June/early July, there were quite a few people, so carers, whose relative with dementia had entered a care home during the pandemic. So, we did some, well, comparison in terms of experiences of what is it like communicating, for example. So, that was difficult at this time point. But since then we’ve received extra funding, and both Jackie and Stephen are part of this project, so we are doing currently a study specifically looking at the experiences of family carers of people living with dementia who are residing in a care home and care home staff during this pandemic. So, we completed data collection in November and we’re just finishing data analysis today, actually.

Dr Tamlyn Watermeyer:

Congrats.

Dr Clarissa Giebel:

Thank you. It’s quite, I think what… Yeah. It’s the speed in which research is being conducted at the moment is different as well. Obviously, we need to be mindful of the quality of everything, but then we’re also aware that, because it’s so relevant and topical right now and it actually can inform practice and changes. So I feel, as a researcher, we almost have a duty to kind of try and get this as best and as quickly out there as possible to try and make some changes now.

Dr Tamlyn Watermeyer:

[inaudible 00:00:19:01].

Dr Clarissa Giebel:

Yeah, exactly.

Dr Tamlyn Watermeyer:

Yeah. That’s a good point, actually. I think we’ve been focusing quite a bit on COVID and the barriers to research. But what, actually, do you think are the opportunities?

Dr Clarissa Giebel:

Opportunities.

Dr Tamlyn Watermeyer:

The types of research practice [inaudible 00:19:20] we’re all having to adapt.

Dr Clarissa Giebel:

I remember at first, when it was March, and suddenly all of my standard research was stopped, Stephen was talking about it early as well, and for a few weeks, I was like, “Oh my God, I can’t do anything now.” And then suddenly, there were so many opportunities in terms of doing COVID research and we’re now so adjusted, I think, to how we collect remote data, how we do public involvement remotely. But I think also what’s kind of good is that we can really easily set up meetings with people that are not right in Liverpool, for example. And we can have that huge level of expertise in a meeting as well.

Dr Tamlyn Watermeyer:

I think if anything, it’s sort of all taught academics, we don’t need to travel necessarily to meet and conduct research. We can just have a virtual chat and get things done, sometimes a little bit faster, too. So, yeah, making use of that technology.

Dr Stephen Mason:

I think there are pros and cons to that. So certainly [inaudible 00:20:28] is, yeah, for people with families and busy lives and stuff like that [inaudible 00:20:36] but again, I guess part of the challenge with it, as well, is that a lot of the, I guess, hidden curriculum of research or hidden kind of, the stuff that goes on inside of meetings is a little bit more kind of tricky, I guess. So, yeah. So there are definitely some benefits, though there are some challenges as well in terms of structuring research.

Dr Tamlyn Watermeyer:

And Jackie, Clarissa mentioned about patient and public involvement. How has the Lewy Body Society, for example, had to respond to that in terms of, I presume there [inaudible 00:21:14] always remote [inaudible 00:21:15] to it, but how are you sort of still engaging with your members?

Jacqueline Cannon:

Yeah. So we, as the Lewy Body Society have had to adapt very quickly. And we’ve got a number of [inaudible 00:21:30] events that we have been doing. We’ve had presentations from researchers. On all our social media channels, we’ve been advertising opportunities for research involvement and on our websites. And I’m also the Chair of the Wigan Dementia Action Alliance. So, through that as well we’ve been encouraging members and followers to participate in all research opportunities. Because I think research pre-COVID had already shown that people with Lewy body dementia, the most common type of dementia that people have never heard of, deteriorate to a much quicker rate than people with other types of dementia.

Jacqueline Cannon:

People with Lewy body dementia are more likely to be admitted to a hospital or to a care home. So, it was really important for us that people that follow us and support us have the opportunity, when it arose, to take part in research and give them the opportunity to have their voice heard.

Dr Tamlyn Watermeyer:

And would you say, with the nature of Lewy body’s being quite a fast progression, would you say around the time of a diagnosis that there is maybe even more anxiety for the individual receiving that diagnosis or their caregiver? Are people, in your experience, prepared enough by the clinical community or elsewhere for how [inaudible 00:23:04] to outsiders?

Jacqueline Cannon:

I think it’s very much a Postcode Lottery, if that’s the right term. In some areas, people will get that post-diagnostic support, whether it’s the six-week follow-up sessions from a local memory service, or the people will just be given a diagnosis of Lewy body dementia and that’s it. They won’t be getting any information packs, they won’t will be given any signposting to services. And they just don’t get that information, they don’t get the right support. And that can be from having taken potentially three years to get to the point of diagnosis, or being misdiagnosed and then re-diagnosed with Lewy body dementia.

Dr Tamlyn Watermeyer:

I know with my own research in the condition it’s an incredibly difficult patient group to recruit for research study, often because there’s this long diagnosis and different trialing of different medications to respond to the more severe psychiatric symptoms. And again, I think maybe relative to other types of dementia, there’s not as much research going on. So, for those dementia researchers who might be wanting to expand more into looking at Lewy body’s dementia, how does the Society support the researchers in terms of funding?

Jacqueline Cannon:

So, we have a grant round that people can apply for. We’re members of the Association of Medical Research Charities, so we have a specialist advisory committee made up of around 15 individuals who are specialists in the field, including Professor Alistair Burns from Manchester University and Director for Dementia for NHS England. So, it’s not the society that decides on what to fund and not what to fund because we’re not the experts in that research area; it’s the experts that tell us, “Yes, this is a good project and this is going to lead on to something else.”

Dr Tamlyn Watermeyer:

Great. Okay. Just thinking about looking to the future, now that a lot of the research is starting to come to light and a lot of the studies are starting to round up, I suppose a question to all of you is what do you think has been the main lesson from COVID-19 and its impact on dementia and [inaudible 00:25:29] care services? And what would your suggestions be to, say, governments of today or policymakers on how best to improve research diagnostics and care for individuals and their families with these conditions?

Jacqueline Cannon:

I think [inaudible 00:25:47] point of view, especially in 2021, that we will be having a real big push on trying to get as many people registered who have a diagnostic Lewy body dementia to join dementia research. Because I think the figure is something like 180 people registered. And I’ve spoken to people, I’ve spoken to researchers who have said that they’re trolling JDR, Join Dementia Research, every day looking for people to take part in their research projects. And especially now, research projects that were underway that have had to stop because of COVID, those participants probably won’t be able to continue and the research project begins again. And so the researchers are going to have to start from stage one again and have to potentially recruit new people to take part in their research projects.

Dr Tamlyn Watermeyer:

Yeah. I definitely agree. There needs to be specific strategies for recruitment of people with Lewy body’s disease because of the nature of the progression.

Jacqueline Cannon:

And to move that forward, I have in January got a meeting with Chris Green who’s the MP for Bolton and Chair of the All-Party Parliamentary Group on Medical Research, because he’s particularly interested in those research projects that have had to go back to stage one and are going to have to look for new participants. So, that is something that we’re going to be following up with him in 2021.

Dr Tamlyn Watermeyer:

Great. And I suppose similar questions [inaudible 00:27:24] Clarissa and Steven [inaudible 00:27:27] your main lesson? And if you could have a chat with government today, what would you be advising?

Dr Clarissa Giebel:

I think one thing, we kind of knew about it anyways, like us in the [inaudible 00:27:41] social care and social support, and receiving that care and support after a diagnosis is just so important for people living with dementia and their family carers. They shouldn’t be forgotten, they are people in their own right who put in so much unpaid hours of care, they have that psychological burden, many of them. So, they need to be supported as well. We kind of knew that in our little community, but I think what COVID now did, it kind of brought it on the spotlight for everyone to realize, “Oh, it’s really, really bad if that’s not there for people living with dementia and family carers.”

Dr Clarissa Giebel:

And I think also, something that came out in our work was that many third-sector organizations, obviously during the COVID, with furlough and everything, they were struggling as well, so financially. So, there’s also the worry in terms of will they be able to provide that care and support once the pandemic has kind of eased off and the vaccines are working, et cetera. So, what really needs to happen? There needs to be more funding, I suppose, into third-sector from government, but also just supporting these services to support the people with dementia and family carers better.

Dr Tamlyn Watermeyer:

And I hope government are listening.

Dr Tamlyn Watermeyer:

Stephen, yourself?

Dr Stephen Mason:

Yeah. I think, because our focus is very much, and our research, on end-of-life care, I guess the big thing for us is how the communication with families at the end of life is improved. I guess services have adapted very quickly, and people are aware of things like people using iPads or tablets for those connections for people at the end of life, but again, how those are done and whether they can be done more sensitively and with greater support need to be figured out. And particularly for the dementia community, as well, it’s the challenge [inaudible 00:29:57] so in our research, and Clarissa’s research as well which I’m part of, examples of where those video chats haven’t been helpful at all and actually caused more distress.

Dr Stephen Mason:

So, there needs to be ways which, in the dementia community, both for those people with dementia and for their families, how those links are kind of made. Because in our research, and our research is a big international study and we’re finding this in everywhere from South America to Japan, the challenges for carers is that lack of contact, and they’re very much advocates for their loved ones, and so not being able to see what’s going on. And they have high degrees of trust with the care homes that they’ve worked with. But still not having that direct observation of what’s going on is a big anxiety.

Dr Stephen Mason:

And particularly in terms of bereavement issues as well, it’s one of the things that we are uncovering in our research is causing people anxieties and challenges with their bereavement and thinking, “Well, what has happened?” [inaudible 00:31:06] particularly a number of people in our survey only having access at the very last moments, and literally being on the end of the phone waiting for a phone call so they can then go and see their loved one, and that being the signal that their loved one’s in the last hours of life. And again, just the issue, the stress, of that phone call and not being able to be part of that person’s normal experience is, yeah. I think it’s something [inaudible 00:31:39] be picking up moving forward and there will be a lot more work in terms of the need for bereavement support.

Dr Tamlyn Watermeyer:

Right. I suppose, finally, if, say, funding was not an issue, you had lottery-winning levels of funds, what sort of research would you be focusing on next, COVID or non-COVID-related?

Dr Clarissa Giebel:

I personally would look at the impact on care staff, both, well, care homes or communities within the dementia field. Now, our research has looked mostly at impacts on what we sometimes call “service users.” So, if they receive a service, so people living with dementia or care home residents and the family carers. But I think, whilst there is a lot of research now going on care homes, it might not be focusing so much on the mental health implications for staff.

Dr Stephen Mason:

For me, I guess there’s kind of the two sides of research, isn’t there? There’s the kind of research in terms of what’s going on now and what’s the quality of it. And then the other side of it is new innovations and interventions. And for me, there’s a lot of really interesting interventions out there, but we just don’t have the evidence base for them to be adopted, and policy around them, to push these things forward.

Dr Stephen Mason:

And I think there’s lots of, really, people much cleverer than I am kind of doing really interesting stuff and doing really interesting work in ways to support clients, patients, relatives, and healthcare stuff. But again, there’s just not that… The part of funding particularly for end-of-life care is really small. So, often, the comparison made is, for every pound which is spent on oncology research, it’s .27 pence is spent on palliative and end-of-life care. So, you can see there’s a big disparity yet. Human mortality still runs 100%. So, for me, there’d be more kind of active research and innovations to look and try and develop that evidence base for what can be done. Because the problem we have at the moment is just, there’s lots of things where there just isn’t that evidence base to support them as yet. And the challenge is that is of getting the funding to do that.

Dr Tamlyn Watermeyer:

And I suppose, Jackie, for you, what would be your top [inaudible 00:00:34:14]?

Jacqueline Cannon:

For me, I think I’d like to understand during COVID the interventions that have been used specifically for people with Lewy body dementia. And what do I mean by that? We’ve received calls from people where their relatives have been sectioned. Was that avoidable? [inaudible 00:34:37] we’re seeing an increase in number of calls. Seeing increasing calls from people being prescribed anti-psychotic drugs whilst they’ve not got a diagnosis and they’re waiting for memory clinic appointments. But they’ve got clear signs, you don’t need to be a clinician to see the signs that it’s Lewy body dementia or a dementia. So, I’d like to understand those interventions and [inaudible 00:35:02] have been used.

Dr Tamlyn Watermeyer:

Great. Well, I certainly think those are very important works that hopefully we’ll have more information on as we learn more and more about the impact that COVID has had through, obviously, yourselves and other researchers who are joining the call to look into this in more detail.

Dr Tamlyn Watermeyer:

Unfortunately, I’m afraid that’s all that we have time for today. But thank you so much to our panelists, Steven, Jackie, and Clarissa, for joining us and giving us a little bit of an insight into your working lives and the impacts you are having as individuals on society and the solution towards this great problem that we are facing.

Dr Tamlyn Watermeyer:

On behalf of Dementia Researcher, I’d also like to take the opportunity to thank all the researchers out there who have risen to the challenge and refocused their work to address the challenges that COVID has brought us. Also, all the individuals and organizations that have supported the research, and of course, those people who offer their time and their commitment to participate in these essential studies, often the unsung heroes of research in general.

Dr Tamlyn Watermeyer:

We have profiles of all of today’s panelists on our website, including details of their Twitter accounts. If you want to follow them, if you have anything that you’d like to add on this topic, please do drop us a Tweet using hashtag #ECRDementia or add a comment to this post.

Dr Tamlyn Watermeyer:

Thank you very much, all, for listening, and thank you again to our panelists for joining us.

Dr Stephen Mason:

Thank you.

Dr Clarissa Giebel:

Thank you.

Voice Over:

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