Podcast – COVID-19 Care Home Research

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 researches across the world.

Dr Clarissa Giebel:

Hello and welcome to the Dementia Researcher podcast. I’m Clarissa Giebel, and I’m delighted to be here today and host the show for the first time. Briefly, introducing myself, I’m a Research Fellow at the University of Liverpool and the National Institute of Health Research Applied Research Collaboration with West Coast, which is a mouthful. And my research is exploring how we can enable people living with dementia live well and independently in the community for longer. Recently, this has heavily involved a COVID-19 focus, in today’s podcast we will be discussing COVID-19 and care homes, including national and international research and clinical work, as well as direct experiences of having a loved one with dementia, living in a care home during this pandemic.

Dr Clarissa Giebel:

Care homes have featured heavily in the news during the pandemic with, sadly many residents having passed away from the virus and care homes closing down to the outside world. So let’s start with introducing our panel members for today’s podcast. We are being joined today by both researchers and people with lived experiences of caring for someone with dementia. We have Professor Adam Gordon, professor of the Care for Older People at the University of Nottingham joining us. Hi Adam.

Professor Adam Gordon:

Hello.

Dr Clarissa Giebel:

We have Dr. Ramona Backhaus, senior researcher at Maastricht University in the Netherlands and fellow German. Welcome Ramona.

Dr Ramona Backhaus:

Hello.

Dr Clarissa Giebel:

And last but not least, we have Paul Marlow joining us, who has been caring for his mother living with Alzheimer’s disease dementia at home before she entered the care home during the pandemic last year and who is a public advisor with us at the ARC Northwest Coast. Hi Paul.

Paul Marlow:

Hello Clarissa.

Dr Clarissa Giebel:

So thank you all very much for joining us, a bit of an international and mixed podcast panel today. It’s really great I think to have not only the research perspective on how the pandemic is affecting care homes, but also to hear from someone who is living through this experience. So to start us off, if we go around the virtual table and for everyone to briefly tell us about themselves and their work, Adam would you like to start?

Professor Adam Gordon:

Yeah. So my name is Adam Gordon, as I’ve already been introduced, and I’m a geriatrician by background. I’ve been a care home researcher working in and around care homes for the best part of a decade. And my research interest in care homes has extended through the pandemic. I’ve been involved in a number of different things during the pandemic. The first was helping some care home managers and staff set up a peer support WhatsApp group to help give them advice and support as they navigated the early stages of the pandemic. And that went from strength to strength and not only helped a number of them find their way through but also act as a bit of a research resource for us as the pandemic went on and helped us work at the big areas of uncertainty were and what it was that we had to be addressing.

Professor Adam Gordon:

And so we’ve been involved in some very practical help to the care home sector for them, but also learning about where the big challenge is alive through that piece of work with them. We’ve also been doing some interview studies with care home managers about how they’ve navigated the… Sometimes lack of available guidance during the pandemic, and sometimes plethora of overlapping and contradictory guidance during the pandemic and the sort of skills and competencies and support networks that they use to find their way through that. And then as the pandemic has gone on, I’ve been involved into quite large national pieces of research. The first is a COVID diagnostic evaluation platform, so that’s called CONDOR. CONDOR is designed to look at technological solutions to point of care testing for COVID in care homes. And I can tell you a bit more about that later in the podcast, if you want.

Professor Adam Gordon:

And the second piece of work, which is potentially even more exciting is the announcement of the first ever national platform, adaptive, randomized, control trial, and a care home setting, which is, the PROTECT study in that we’ll be looking at treatments to try to prevent the spread of COVID either as a form of primary prevention. So that’s preventing care home residents from getting COVID in the first place or secondary prevention, which is stopping spread of COVID through a care home after there’s been a case. And so from a long period of time of working very hard to get the research community interested in funding research in care homes, there’s been an explosion of care home research during the COVID pandemic. And it’s been a real privilege to be able to play a role in that.

Dr Clarissa Giebel:

Okay. Thank you so much. So certainly a lot going on. So it’s great to have you on the show Adam, Ramona.

Dr Ramona Backhaus:

My name is Ramona Backhaus, as Clarissa mentioned. I’m working as a senior researcher at Maastricht University in the most Southern part of the Netherlands. I’m working for the Living Lab on Ageing and Long-Term Care. This is a network or a collaboration center in which we participate as Maastricht University together with a University of Applied Sciences is to vocational training institutes for nurses and with different long term care providers doing research on elderly care. And normally or before the pandemic, my research focus was on staffing issues, so I studied for example, staffing levels of nursing homes. I had to look at competencies of staff roles and during the first lockdown, we were not allowed to conduct any research. So, we had to deal with corona also as researchers, and then I switched to a study in which we had a look at, for example, the visiting ban on nursing homes and studying its consequences, which we will discuss later too. So, currently I’m working a lot on the pandemic and its consequences for care homes, so what are the consequences for residents, relatives and staff members?

Dr Clarissa Giebel:

Okay, great. Thank you. So it’d be great to hear more about that in a bit, and Paul.

Paul Marlow:

Hi. I’m very happy to take part in this podcast. My name is Paul Marlow. I live in Liverpool and until last July, I was a care for my mom, her name is Margaret and she is 87 and she’s got Alzheimer’s. And I’ve been a carer for her and for my father, my father passed away four years ago. So principally I’ve been caring for my mom the last four years. I used to be a teacher, well, when I was a carer, I was caring full-time for my mom. I felt it was in my mom’s best interest for her to stay at home and she was very happy living at home, and obviously I wanted to support her to do that. Well, after the first lockdown we sort of decided it might be the time that my mom should go into a home. I’ve been also a public advisor and I’ve been working with given the source of caring perspective on Clarissa’s work at the moment on care homes. So I’m enjoying taking part in that, so thank you.

Dr Clarissa Giebel:

Okay, great. Thank you. So, as you can hear, we’ve got a broad range of expertise on this podcast to have a chat about COVID in care homes and research today. Adam, you’ve mentioned a lot of ongoing research that you’re involved in. Do you want to expand on this a little bit? So you were talking a little bit about research into guidance, but also into testing.

Professor Adam Gordon:

Yeah, so let me tell you about the testing research first off. And so the CONDOR study was a national platform funded in the UK by the National Institute of Health Research, and it was designed to evaluate point of care tests for COVID. So these are tests that happen close to where the person lives or is attending, so it could be in a clinical setting. So rather than sending specimens off to the laboratory and sometimes waiting hours, if you’re in a hospital or days, if you’re in the community, you get a result back in minutes. And there was a sense early in the pandemic that there were a number of manufacturers developing these technologies, and we needed a really robust academic way of understanding how they worked and one setting in which they potentially could make a difference within the care home setting.

Professor Adam Gordon:

And I was asked to lead on that piece of work and what we did is we set about working with care homes to try to understand whether they could use these technologies. Now, some of these technologies are things that, on the face of it sound quite scary and quite technical, and the sort of thing you think that may not work well in a care home setting where most staff don’t have degrees in laboratory science, and some staff are not even from a professional background like nursing or a healthcare background, many are lead people that have picked up very good competencies, but competencies through experiential learning. And so the idea of these people suddenly doing polymerase chain reaction tests, and they remove the care home seems potentially quite daunting.

Professor Adam Gordon:

But anyway, we set by doing this, we know about three technologies in the care home setting to polymerase chain reaction machines and one machine, which is a form of automated antigen test. And the exciting thing has been the way that the care home staffs have taken to this, the way that they have shown themselves to be quite adaptable and the way in which we found that these tests can be used in a relatively safe and error freeway in the care home setting. So the test very new turnaround times, but they’ll give you a result in anything between 12 and 19 minutes, and that is sort of a rapid turnaround time can be transformational. If you’ve got someone who’s got COVID and you’re trying to get on top of an outbreak before it happens. So you can tell that they’ve got COVID and you can respond appropriately.

Professor Adam Gordon:

The second way in which they can be useful is if you’ve got someone who hasn’t got COVID, let’s say a visitor, for example, who wants to enter the care home and you can give them that result there and then rather than waiting for some time to get the result back. These tests that we’ve evaluated have now gone forward to the UK Department of Health and Social Care to decide if they want to fund them at a larger scale when care homes across the country. One of the big challenges is that the government in the UK have invested heavily in different forms of technology, much simpler tests called lateral flow tests and those are placed in most care homes across the country. And so there’s a real sort of sense of uncertainty, but where these new technologies are very sensitive, very specific, but slightly more expensive than lateral flow tests and where they fit into the grand scheme of things.

Professor Adam Gordon:

And that’s something that we’re trying to work through with the government at the moment. But I think what we have learned from this as care homes can do, all sorts of clever things that we didn’t think they would be capable of doing in the past. And there are whole new technologies that we now know can work in this setting that we haven’t been able to explore in the past, and it opens up exciting opportunities, not just for how we manage COVID as time goes on and having managed COVID outbreaks as time goes on. But how we may deploy these types of technologies for other things, for example, influenza outbreaks in the future or even how we detect and manage the winter vomiting bug when that comes around. And so, care homes has never disappointed me. They always rise to the challenge and are much more capable than most people would expect.

Professor Adam Gordon:

And once again, it’s shown us that they can participate in health and social care in a way that we perhaps hadn’t envisaged prior to the pandemic.

Dr Clarissa Giebel:

I missed a bit of a positive perception there, Adam from care homes like your experiences about care home stuff.

Professor Adam Gordon:

Well, I’ve been working with care home staff for a decade. So I have largely a positive view of care home staff and the dedication and skill that they bring to their day-to-day work. And I think that one of the things that I have continually been impressed with over a long period of time of working with staff in the sector is how they put resident care at the center of their sort of ethos. And so, the big question when we first started looking at these new technologies was could they do something to transform and improve resident care during the pandemic? And the answer was, well, yes, they could. First of all, they could help to protect residents from COVID. And secondly, they could help reopen parts of the care home sector to things like visiting and the minute the care home staff heard that they were very keen to get involved and try out these new innovative technologies. So I think, I’m a big fan of the care home sector and the staff that work in it.

Dr Clarissa Giebel:

Okay, great. Thank you. Ramona, what about the experiences from the Netherlands? So I know you’ve recently published while you were one of the co-authors of a long-term care COVID report on safe visiting with international collaborators. Could you tell us a bit more about that?

Dr Ramona Backhaus:

Let me start with the best situation, to give you just a short background if we’d talk nursing homes and care homes in the Netherlands that are about 115,000 residents that are currently living there, and about 270,000 staff members who are taking care of these residents. And most of the residents suffer from dementia or as a cognitive diseases and the smaller parts suffer strong sematic diseases, but only the most trivial people enter a nursing home in the Netherlands. And what we saw in February and March, the whole pandemic started in Netherlands. So, I think in February, at the end of February, the first infections popped up. And what we saw in March, at the 20th of March, is that there was a whole blank physical ban, so people were not allowed to leave the nursing homes or visitors were not allowed to enter.

Dr Ramona Backhaus:

And that took four, two months, and in May the Dutch Ministry of pilots wanted to start a pilot and which they wanted to experiment what would happen if you open or reopen the homes for visitors, and together with colleagues from the University of Wageningen. It’s another Dutch university. The ministry asked us to monitor as a small process. So what we did is at the 11th of May, selection of nursing homes, 26 homes they are all spread across the Netherlands were allowed to visit and to open for visitors under various strict conditions. For example, all care homes we’re not allowed to have COVID infection to participate in that pilot, the organization should have protocols available that clearly regulate how a visit should look like, that was one person per resident was allowed to enter the nursing home once a week. So the conditions were very strict. You could also think about different hygiene measures that were taken into consideration.

Dr Ramona Backhaus:

And they asked us to monitor the solar reopening. And we conducted interviews with mostly managers from this different nursing homes, the 26. And in addition, we had five locations where we did a case study to also talk to relatives and to different staff members to talk about their experiences. And we had, for example, look at the compliance. So, there are a lot of rules that have to be considered while a relative is visiting and what was the compliance on that. And we also had a look at what are the effects on residents, relatives and staff members, and so this pilot was successful. So, first there were no new infections due to the visitors that were allowed to enter, it could also be the case that it was in local areas where the infection rate was low back then.

Dr Ramona Backhaus:

So, that should be taken into account too. And we also saw positive consequences for residents, relatives and staff members. So we saw changes in mood and behavior of residents, but also, positive feelings, real emotions from family members and also staff members who said, it was a very hard period. And now we have to seek a balance between protecting our residents while at the same time we want them to have contact with their family members. So, the pilot was successful and at the end of May, so two weeks later the government decided to allow our visitors in our nursing homes when they did not have any COVID infections. So, we could also spread our pilot then and we included in the second measurement row, 50 new nursing homes. So in June we followed 76 nursing homes and we did a third measurement wave in October, and now we are still monitoring these 76 homes to see what are the consequences.

Dr Ramona Backhaus:

And in October we focused on the second wave. So, in summer it was a more easy period I would say, because there were little infections. And in October we saw that the second wave was coming. And when we focused on again, the wellbeing and we still saw that residents benefited from the visitors, but we also saw that staff members found it difficult, so had a very high work pressure. And they said that it also takes time to, for example, supervise these visitors. So you cannot say just enter the nursing home and there is the door, but you really have to keep an eye on the whole visitors to see whether they comply to all other rules that they have to follow.

Dr Ramona Backhaus:

And we also saw that staff members got a bit tired of discussing things with visitors, for example, about wearing a face mask or these kinds of things, and we saw more disbalance. So when we opened staff members who were very happy and in October there were mixed feelings. So as I said, it was a very hard year and it’s just also extra work to supervise these visits and we have to deal with relatives too.

Dr Clarissa Giebel:

Yeah. But that’s really interesting and especially because of the early implemented guidance from the Dutch government, like care home staff was able to really follow them much better, but we’ll get onto that in a bit. But also just because you were mentioning that increased burnout in care home staff that you noticed. And it’s interesting, we notice that in our Liverpool study as well, that it was led at Liverpool, but we looked at it more nationally that staff was just burned out going to up to 70 hours a week or someone working and just having to cover people being off sick leave because of COVID or being afraid to come in because they might catch COVID all these things. But also one thing that I want to pick up that you mentioned was this moral dilemma in terms of care home staff, do we provide sufficient infection control and keep the residents safe, but at the same time they need that social contact with their loved ones so that dilemma of balancing that care rightly. It’s really a big thing.

Dr Ramona Backhaus:

Yeah. At least what we saw in third measurement round in October, that they will do their best to keep the hours open. So at the beginning we saw that they weren’t that well prepared. So maybe it’s the prolonged visiting bans as they reinstated it and in October as I said, now we really try our best and we really have a look at individual residents, whether it’s still possible for them to see their relatives. And what you said about the burnout from staff, it’s very difficult or hard to say what’s the reason because you have these visitors, but what we see at least is that they also struggled with people that are ill. So staff that is ill, maybe they are just coughing and they don’t have COVID, that they have to sit at home until it’s over these kind of things. And in October, it really took a while to be tested, so they had to wait for a test and that also prolonged the whole time that they were not able to work.

Dr Clarissa Giebel:

Yeah. Okay. Now, that’s really interesting and also hearing about how it’s going on in a different country. Paul, I’m mindful, this has been a bit of a research insight to what’s been going on both from Adam and Ramona. What about your own experiences, what was your decision of your mother entering a care home during the pandemic? What kind of swung your decision and how has it been since?

Paul Marlow:

Yeah, well the most prolonged the lockdown of the pandemic really sort of hit in early last year. I did feel it was becoming kind of inevitable that my mom would probably have to go into a home at some point. She’s had Alzheimer’s for some time and I just felt it was becoming increasingly more manageable at home as a carer. I mean, I was living at home myself with my mom and what I found particularly difficult prior to the lockdown was trying to knit all the different services together. So she would have a really good experience of living at home, but also it meant that I would hopefully get some source of respite from the home situation. And I think, not only was it like, I think home care would see this as a challenge to look after somebody with a condition like Alzheimer’s, but I think a mate was a major undertaking for anybody to sort of keep it all going, keep the whole source of care package going, whether it’s home care, day centers and so on.

Paul Marlow:

So when we got into lockdown, lockdown was difficult. I think any carer would testify, and I would definitely say she definitely deteriorated in locked down. And that deterioration was definitely what led to her going into a care home in July. She did go in initially as respite, but we sort of decided as a family and clinical staff and also social workers that this should be made permanent. I think one thing I noticed in particular was the deterioration in her mobility from the beginning of the lockdown to July. And that was quite difficult because I’d always been very active taking my mum out in the car. And when we got to June, July it started to ease a little bit, and we could leave the house. I couldn’t actually get her into the car.

Paul Marlow:

She couldn’t sort of understand how to get into the car and that sorts of, it just made me feel that it was going to be very difficult for me to sort of manage that care for much longer, really. I mean, one thing about the lockdown is that ironically, she didn’t really have any knowledge of the wide impact of COVID, she didn’t have any knowledge of it at all. And didn’t really question why she wasn’t leaving the house. So for a lot of the time, she was very comfortable and very happy at home. But obviously, has sort of, I think her dementia did advance and I would say, there’s a probably inevitability that Alzheimer’s is going to worsen over time. But I really felt it sort of speeded up really.

Paul Marlow:

And I do think losing that social interaction was a massive issue really, just like taking it to the supermarket and hail, like no way even our little kids in prams and stuff like that what you said that source of interaction was lost in a lockdown. And I think that sort of had a big impact upon there, I think.

Dr Clarissa Giebel:

And how has it been since, in terms of seeing your mother in the care home or staying in touch with her?

Paul Marlow:

Well, I mean, since July, I did visit her regularly. They had window visits, but there was no physical contact. And then before Christmas, the care home did install a pod. So we were able to kind of go into the pod at Christmas, but then after Christmas there was an outbreak of COVID I’d work at the home. My mom did test positive, fortunately, she didn’t have any symptoms and she seems to be okay. And I’ve actually been today for the first time for a month, I mean, it was interesting. Ramona, you were saying about the care homes and how I suppose the kind of things they’re having to do is not really what they were having to do before having to manage families go in.

Paul Marlow:

And I was also thinking when I go into the pod, they obviously got to make sure it’s clean because they don’t want the next people to be possibly contaminated. So they’re given, I think the whole idea of a pod is a fantastic idea, but it does bring a lot of responsibility, which maybe they never would have been visited like a year ago.

Dr Clarissa Giebel:

Yeah, absolutely more cleaning duties and lots of more logistics that are involved, though as usually you could just come and see your grandma or your mom in the care home. Definitely.

Paul Marlow:

And they said to me before the pandemic there will be a lot of family members who would comment to the home and family members who were from different family members who would like sorts of become friendly with each other and it would create quite a family atmosphere. So I think that’s something which we’ve never experienced because obviously since July, I’ve never actually been in the home. No, I’ve been to the park, but we’ve never actually been into my mom’s room. So, it’s kind of a very unusual situation not been as a family.

Dr Clarissa Giebel:

Yeah. It’s very different to suddenly lose that contact, especially when you’ve cared for her before.

Paul Marlow:

Definitely.

Dr Clarissa Giebel:

Yeah. So Adam, with all your research going on, what are your thoughts on generally the care home visiting and experiences through your research?

Professor Adam Gordon:

Okay. So I think Paul’s experience of his mum deteriorating through lockdown is indicative of what we’re hearing from a lot of families with relatives in care homes and indeed care home staff about their residents, which is, when people have to spend time in a situation where they have limited cognitive stimulation and limited opportunity for moving around that they do deteriorate. And there’s no doubt that the sort of restrictions on care home visiting and on care home life, more generally during the pandemic have been harmful to residents. I think there’s also a sense of managing harm to families. So, some families depend upon contact with their mother, partner and a care home for emotional wellbeing.

Professor Adam Gordon:

And so, there’s definitely some significant quality of life impact on people living on the outside, so to speak as well. And I think there’s also potentially been some quite significant damage done in terms of the relationship between care home staff and the families of residents, out of that relationship that sort of is situated around the care home resident is really important to providing really good high quality care. And when that relationship breaks down, it makes it difficult to coordinate care plans, to make sure that the care home residents are getting what they need. So, the restrictions on visiting have been really harmful. I think Ramona’s comments are really insightful.

Professor Adam Gordon:

So when people say, why don’t we just reopen UK care homes to visitors. We often say the Netherlands as an example, and say, well, Ooh, they have a pilot, couple to research the lens and you show them that it doesn’t seem to be associated with much harm, but what you do have to listen to very carefully in the story that Ramona tell us is the amount of staff resource required to support that with every opportunity comes an opportunity cost. And so to devote staff and supervising visiting you have to stop doing something else. The staff I’ve also had to deal with during the pandemic, a rapid increase in testing in the United Kingdom. So one of the implications of the lateral flow test, not the test that we’ve been evaluating, but the lateral flow tests that have been put in place in care homes is a rapid increase and staffing requirement to support those.

Professor Adam Gordon:

One calculation I came up with said that 40 bed care home may have to employ up to three extra full-time staff just to run their lateral flow tests before they do anything else. And then you add into that, all the additional, sort of staffing requirements and ensuring that you have cohorted staffing for red and green areas within care homes. And really it’s just a constant, can a moving feast of demands and draws on what’s often a very thinly stretched staff already. And there’s a lot of kind of moving parts trying to keep in top of the bits and so my sense is that some of the care homes that shut down did it ostensibly to protect their residents.

Professor Adam Gordon:

And I think when we knew very little about the infection, that was probably the right thing to do. I think many of them kept care homes shut just because there were too many moving parts. And they were just trying to keep on top of the bits that they were being asked to do and mandated to do by government, and know that they’ve got to grip with that, particularly as the prevalence starts to go down. I think we do need to look at reopening care homes safely. An interesting part of this narrative in the UK has been the discrepancy between what the scientific committee and the scientific community have been saying about visiting and what the government have been saying about visiting and what the scientific community had been saying is that it probably is safe to reopen visiting and probably is a relatively low impact activity from an epidemiological perspective.

Professor Adam Gordon:

As long as you do the sorts of things that Ramona was describing, you use PPE, maintain social distancing, you limit the number of people in the care home. You pay close attention to zoning. And of course at a political messaging level, that becomes the prime minister standing up and saying, well, now you can go into a care home and hug your granny. And his Twitter feed actually showed a picture of someone coming into a care home and hugging their granny. And so there is a slight mismatch between what the scientific committee and our scientific community are suggesting is sensible, which is a kind of staged and careful reopening and visiting of the type of thing that Ramona discussed has worked very successfully and safely in the Netherlands, and the sort of thing that some of our politicians have been promising. And I think one of the real challenges as we do reopen visiting is going to be listening to the science and ensuring that we do it, “Follow the science.” And if we don’t sort of follow some of the more populist tendencies of some of our public political figures.

Dr Clarissa Giebel:

Yeah. Very fair point. And I’ll pick your brains from Ramona just in a second as well. But just to pick up on something you said at that, I think it’s important to highlight that impact of the pandemic on every person’s relationship so both between staff and residents, between residents and family members and family members and staff. So one thing we noticed as well in our research, for example, care home staff having to be fully PPE kitted out, wearing that face mask. Well, that means that the residents can’t see whether they’re smiling, for example, sometimes they can’t hear them very well because elderly residents might have hearing problems as well. And these little things cause these deteriorations in the relationships as well, just to kind of bring them out.

Dr Clarissa Giebel:

Okay. Ramona, so as Adam was just mentioning, the Netherlands almost is like a shining beacon in terms of care internationally, and kind of brings out these clear guidance in May last year, which for us in the UK was like, “Wow, that’s great. That’s really early.” So we kind of noticed in the UK, obviously there has been in lack of guidance and consistent guidance throughout the pandemic really from the government, with care homes and visiting, et cetera. So do you just want to explain a little, how do you think the guidance has helped in the Netherlands and should they be implemented in other countries also?

Dr Ramona Backhaus:

I think in the very first beginning, the guidance clearly help because nursing homes could refer to the guidance. And you could also communicate that guidance to your visitors and you could say, “Okay, it’s written down here and we have to do it like that.” But I think, because the measures were really strict so you had also to keep one and a half meter distance. And when we monitor these five nursing homes and detail, we also saw that it was not always possible to have such a distance. You talked about people with dementia, for example, people that do not hear very well and normally they like to touch their relatives and to give a kiss or something like that. And that is what we also saw. So it was not always feasible to deal with strict measures.

Dr Ramona Backhaus:

And that is what we also gave back. What we are wondering, I’m thinking about now is, what about the long-term consequences of the pandemic. Because I think when we have to look at the media we hear a lot about vaccinations and the strategies and care homes are vaccinated first and these kind of things, but I think we really should keep in mind that there will be residents who cannot get a vaccination, maybe also due to health circumstances. There might be staff members who didn’t have vaccinations because they didn’t want to or they can’t. And we are just wondering about the long-term consequences for the daily life in nursing homes. So, when will the old normal life come back, will it come back?

Dr Ramona Backhaus:

Because what we will also see is that before the pandemic in care nursing homes, a lot of volunteers were present who took over activities for examples, and they were also banned, so they didn’t enter the home. And also when we have this measurement around in October, we saw that they are still not there because a lot of volunteers are people that are a bit older in their ’60s, for examples. And we do not see them in nursing homes right now. So, I think that it will lead to a big change in the normal life of nursing homes. And I’m not sure what the consequences of sort of vaccinations will be and I think we have to think about all these measures that we are applying right now and how to give them up with purpose.

Dr Clarissa Giebel:

Now definitely. I think I might just skip a question here. You bringing us onto the vaccination situation because that’s I think at the moment it’s just so pertinent. Can you explain to us what the, first of all, what the vaccination situation is like in the Netherlands more broadly and specifically in care homes?

Dr Ramona Backhaus:

So in the Netherlands, I think you may have heard about it. They started a bit later, so most European countries start in December, the Netherlands start in January and high priority was given to nursing home residents, but then there was a discussion about the different vaccinations. So the favored one worked for elderly people, but the other one, not so, they had to rearrange a bit. And now it looks that staff in hospitals, for example, who really work in close contact with COVID patients that they are vaccinated firstly, after that people working in nursing homes or care homes follow, and then the population in nursing homes follow. So they give both residents and staff members are given higher priority. And I started at the beginning of January and I don’t have exact numbers of how much staff is vaccinated right now or this kind of things.

Dr Clarissa Giebel:

Now, just to kind of put it into context. That’s great. So Paul, what about your mother has she received a vaccine yet?

Paul Marlow:

Well, because she had a positive COVID test a few weeks ago, well, they didn’t vaccinate those people in the care homes who had positive test. She’s due to have a test this Friday, I think it’s meant to be. So there’s been a delay, obviously. So, I hope eventually in that the vaccinations will mean that we will be able to have some actual visits in the future, but I mean, as Ramona said, I suppose we have to be kind of realistic about how this is going to have an actual impact in the future, because it’s kind of an ongoing situation and probably does need to be very, I think the hints, in terms of visiting, I would have thought that have to be pretty clear, strict, consistent guidance, really. Because, otherwise you might end up with some care homes deciding that they’re not going to chance it, they’re not going to put people at risk. Well, it will be nice to think that we will be able to have some sorts of actual visit in the near future.

Dr Clarissa Giebel:

Definitely. Adam, how do you think vaccines are likely to affect care home visiting?

Professor Adam Gordon:

So we don’t know yet, is the answer.

Dr Clarissa Giebel:

I know that.

Professor Adam Gordon:

[inaudible 00:42:48] or care home residents have never been offered the first vaccination and the uptake is somewhere in the region of 90% and most parts of the UK. So the uptake amongst residents has been pretty good. And the uptake among staff from a pretty poor start is catching up quite quickly as well. So I think we’re looking at around about 60% immunization rate and stuff at the moment and rising. And so, the immunization program is going well, that’s the first doors, they’ve marketed their second doors for 12 weeks. So we’re looking at three months from now until we have anything approaching immunity. And even then we don’t know the extent to which vaccines will work in order for people with fruity living in care homes because of immunosenescence, which is a great fear that largely refers to a sort of deterioration in the immune system as people age.

Professor Adam Gordon:

And we don’t know the extent to which the vaccines will generate immunity. We hope they will, and if they do, then it should be possible for visiting to open, I think in a sort of staged and controlled way. I mean, this is one of the things that sort of got us thinking about the need to have preventative treatments and care at homes because if we don’t get the level of immunity that we’d hoped for from vaccination, that we need to have alternative therapies that either prevent outbreaks or reduce the severity of outbreaks and the National Institute of Health Research has funded us to run something called the PROTECT study.

Professor Adam Gordon:

And the PROTECT study will be at large, in fact, the largest ever care home study a randomized, controlled trial, which is an adaptive platform trial. So we’ll be given agents by the National Institute of Health Research to test and hope that they can prevent either COVID outbreaks and care homes or prevent them from becoming severe. And we know the process of recruiting care homes for that we’ll need between 400 and 800 care homes in the study. And we may need up to 7,000 care home residents. That’s going to be a very significant undertaking. We’re going to be doing that work over the coming weeks and months.

Professor Adam Gordon:

And if anybody listening to this wants to learn a bit more about that. They can go and look at www.protect-trial.net, which is where everything there is on the internet. So, everyone else I really hope that vaccination just works and I would be strangely the happiest man alive as the PROTECT trial turned out not to be needed. So as long as I’m leading to fail, but in reality, the best thing for everyone would be just a vaccination worked and we could reopen quickly. We don’t yet know that it’s going to work as well as we hope, and so we probably need some plan B’s and some additional arrows in our quiver, in case, it doesn’t work quite as well as we’d hoped.

Dr Clarissa Giebel:

Okay, great. Thank you so much. I’m mindful of time. It does kind of losing track of time because it’s such an interesting topic, I think. So I think this is all we have time for today, but to just wrap up, to summarize, first of all, thank you to all of you for joining us. It’s great to have that national, international insight, but also not just research, but really hearing from someone who is going through this at the moment. So thank you so much. And I think possibly some of the main takeaway messages are, I suppose that, first of all care home staff has been affected to a great deal by burnout, by stress, and they really have to take on these additional tasks. So we should kind of highlight that and the great job the care staff is doing. Also, there seem to be a lot of impacts on relationships between everyone, staff, family members, residents, and we shouldn’t neglect the impact that the pandemic has on that.

Dr Clarissa Giebel:

Also it seems we’re all in agreement, safe visiting should be encouraged where possible, because as we’ve noticed both by people living with dementia in the community, but also in care homes, if people don’t have that competent stimulation, the physical stimulation of walking around doing things and that social engagement that can lead to possibly faster deteriorations as well. So safe visiting would be helpful. And also hopefully vaccination will have a positive impact on visiting, but as Adam was just saying as well, we just have to wait and see how things developed. So again, thank you so much to all of our panelists, Professor Adam Gordon, thank you so much.

Professor Adam Gordon:

Thank you very much.

Dr Clarissa Giebel:

Dr. Ramona Backhaus, thank you.

Dr Ramona Backhaus:

Thank you.

Dr Clarissa Giebel:

And Paul Marlow, thank you as well.

Paul Marlow:

Thank you very much.

Dr Clarissa Giebel:

So for everyone listening, take a look at our website, dementiaresearcher.nihr.ac.uk where you’ll find more about many different topics on dementia. And we have profiles on all of today’s panelists on the website, including details of their Twitter accounts, if they are on Twitter. And if you have anything to add on this topic, please just drop us a tweet or add a comment to this post. Thanks for listening.

Voice Over:

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

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