Podcast – Researching Inequalities in Dementia Care

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by University College London and the NIHR in association with Alzheimer’s Research UK, Alzheimer’s Society, Race Against Dementia and the Alzheimer’s Association supporting early career dementia researchers across the world.

Adam Smith:

Hello and welcome to the Dementia Researcher Podcast, bringing together early career researchers and leaders within the field to discuss their research, hot topics and to share career tips. I’m Adam Smith. I’m the program director for Dementia Researcher at University College London and it’s my pleasure to be hosting this week’s show. Today we’re discussing inequalities in dementia care and the research of my four fantastic guests, some of whom you will have known and met before. So, let’s meet them. Today I’m joined by regular Dementia Researcher blogger, Dr. Clarissa Giebel, and joining her in our virtual studio we have James Watson, Laura Prato, and Thais Caprioli. All from the University of Liverpool. Hello everybody.

Laura Prato:

Hello.

Thais Caprioli:

Hi.

Adam Smith:

Why don’t you all introduce yourselves properly and Thais, why don’t you go first?

Thais Caprioli:

Yeah. Hi. I’m a third year PhD student and I’m based at the University of Liverpool. I have a background in physiotherapy and for the last five years I’ve been working in global health.

Adam Smith:

Physiotherapy? Do you still do that as well? Do you have to keep that as a sideline?

Thais Caprioli:

No, no. I haven’t practiced for a couple of years now.

Adam Smith:

Oh, that’s a shame because I’ve got this thing on my back. No, I’m joking. I haven’t really. Laura, why don’t you come next?

Laura Prato:

Hi, my name’s Laura Prato. I’m a research assistant at Liverpool University. Previous to that I was a research assistant at Newcastle University, and I’ve spent the last three to four years working on my PhD which has looked at the hospital discharge process for people with dementia and their careers. And in a previous life I was a staff nurse working with adults.

Adam Smith:

Ah, brilliant. You’re massively in demand. There’s a whole push right now to encourage more nurses and healthcare professionals to get into research so you might find yourself being a poster person for some of those campaigns. We should get you back on another show to talk about that transition from nursing to research. In fact, if anybody’s listening right now, Alzheimer’s Society have just opened their new funding calls and there are some specific calls in there very much aimed at healthcare professionals, which include a very early stage to allow you to get some research experience without committing to the PhD. So some funding for a short period to do a PhD like project but not necessarily go on to … And then you can apply for a PhD later if you decide.

Laura Prato:

That’s fab. It’s good to hear about programs like that that can help encourage healthcare professionals moving into the research world. Because coming from that background, it gives us a particularly unique perspective that I think is valuable.

Adam Smith:

Very much. And also as well, I think you’re really in touch with the kind of topics that you know will really help people as well with that firsthand experience. Thank you, Laura. James, why not come to you next?

James Watson:

Yeah, of course. Lovely to be here. I’m also a final year of PhD student as you can tell by the bags under my eyes. I’m also based at the University of Liverpool, and I’ve got 11 years’ experience working in public health.

Adam Smith:

Brilliant. And you joined us for an online seminar, but I think it was at the beginning of the pandemic-ish, about your PhD plans.

James Watson:

Right at the very start. I talked through the systematic review that Clarissa and I did very early in my PhD. Seems a long, long time ago now.

Adam Smith:

We should get you back to do another one on that.

James Watson:

Yeah. More than happy to.

Adam Smith:

Clarissa. Of course, everybody knows Clarissa. Clarissa has previously guest hosted shows and been a guest and she does narrated blogs for us as well. But come on Clarissa, introduce yourself for those that only listen to the podcast.

Dr Clarissa Giebel:

I doubt everyone knows me. Hi, I’m Clarissa Giebel. I’m a Senior Research Fellow at the University of Liverpool and I work at the NIHR Applied Research Collaboration Northwest Coast. So my research really looks at inequalities in dementia care and yes Adam, I do a lot with you guys at Dementia Researcher. But just briefly picking up on what you were saying to Laura about these Alzheimer’s Society opportunities for care professionals, at the ARC North West Coast and I’m sure in other ARCs as well, we do host internships. So for example, occupational therapists, physios, anyone with a professional background, they can then do a research project for 12 months with us as well. So there are these opportunities around because we want to obviously merge care professionals and research much better.

Adam Smith:

Brilliant. That sounds like a great opportunity and of course I know obviously not everybody who’s listening today is in the UK but I know that this is a problem internationally as well, that in the states as well, in Australia and Germany, there are lots of efforts to try and encourage healthcare professionals to come into research because you do bring that unique perspective. Thank you, Clarissa.

Well, thank you very much everyone. As I mentioned earlier, today we’re going to be talking about an important topic which affects many people, not just here in the UK but of course all over the world. Inequalities in dementia care. I hope I’m not preempting the discussion, but I don’t think this statement is anything that anyone would disagree with. That major inequalities in dementia care exist. But even that statement in itself simplifies what I suspect is a complex topic. Factors including local service provision, ethnicity, whether your care is self-funded or paid for by local authorities, whether you’re diagnosed earlier or later in the illness must also be factors. But there are many more. And if you live outside the UK, there are even some health systems that think of dementia as a normal part of aging. So, in this show, we’ll hear about the research of our brilliant guests, what they’re doing on this topic, what they’ve discovered and I hope we’ll get some insights into what can be done about the issues.

Clarissa, what can you tell us about this topic? Obviously, you’ve had my quick thoughts there in the introduction. Tell us about the topic.

Dr Clarissa Giebel:

It’s huge and completely untapped. Everyone knows about it, but I think one thing we as researchers can struggle with, at least I do and I know lots of lived experts and care providers that we work with do, is we do the research, we show for example by doing reviews or primary research, by speaking to people, doing surveys, using routine data such as James uses a lot in his work. We find that there’s so many barriers to accessing care after diagnosis. So we know for example in England and tend to be across the UK actually, when someone gets a diagnosis, they’re kind of lost. They might get an information pack, they might get a seven-week support group from their memory clinic if they live in the right postcode patch and get a good NHS service there. But then after nothing. And it’s usually based on having an unpaid carer who is proactive and tries to navigate the system afterwards to try and find the services.

Now, I’ve done one research recently funded by the Alzheimer’s Society, which compared the system in England with the Netherlands. And we found that in the Netherlands there is a large availability of dementia care navigators. So once someone has a diagnosis, many people have someone that’s not medically qualified, but that helps them as that one point of contact and tries to navigate the system. And they really can reduce inequalities and improve access and uptake to services. Now, we’re trying to get funding to understand this better in England, but we know from discussions that there are care navigators across England, it’s just they’re not really evaluated and very different. So it can be promising trying to find a facilitator and I think we’ve tapped onto something there, but there’s so much, the system isn’t working well. The community poses sometimes a lot of barriers as well. As we know in different cultures, there can be stigma for example as well.

But also, individual barriers. So for example, if someone has rarer subtypes of dementia, so we know Jackie Cannon, she works for the Lew Body Society or fellow blogger, Anna down from London, she does a lot with rarer subtypes. It’s really difficult getting the care you need because most services are more tailored to Alzheimer’s disease dementia. So there’s lots going on and hopefully by working with people who have dementia or care for someone with dementia and care professionals who are trying to find solutions much better than if we’re just as researchers because we couldn’t do it just us. We need everyone together.

Adam Smith:

So, I’m picking up on a few issues there. First of all, that in some instances that there are services there but not necessarily everybody has the same wherewithal or skillset or information to actually find them and access them. That there are also some places that have services and some places that don’t and that’s amplified particularly when you start to look at specialist services. Like you mentioned Anna there, who I know works in primary cortical atrophy and things like that. So some of the speech therapies and things that might come with that to help communication, definitely you don’t get a view that there’s then consistent service provision as well. Is that a reasonable summary?

Dr Clarissa Giebel:

Yes. And there’s so much more. And I think maybe just to flag up, and Thais I’m sure will pick up on this as well because her PhD focuses on this, but what we’ve witnessed during the pandemic, obviously at the start of the pandemic services shut down and then people were even more limited in accessing the care they need and it appears that they’ve deteriorated faster based on our research and based on global research. But the digitalization of care can be a huge barrier for people, particularly if we think the majority of people with dementia in the older stages of their lives. So there’s the digital gap and people don’t really know how to use it. On top of that, having a cognitive impairment and then seeing different Zoom boxes or seeing FaceTime with your loved ones, that’s really difficult to understand. So, there’s new barriers coming into place as well.

Adam Smith:

Yeah. So that gap’s widening further. I know exactly what you mean. I mean I was on the front of my GP surgery this last week and all their recorded announcements point you towards their website and I’m sat there listening going, “What if you don’t use the internet? What if you don’t have the website?” I think our fallback on digital information has definitely ensured that some people just fall behind. Thank you, Clarissa. With so many issues then, and of course limited funding and time, how do you decide what to look at? Or do you just look at everything? I know you publish a lot of papers which suggests that you can’t focus on one thing. You look at everything because everything’s so important. How do you decide what to look at?

Dr Clarissa Giebel:

A lot of prioritizations with our public advisors. So, with the carers and people with dementia and the charities that we work with.

Adam Smith:

Oh, that’s such a good answer. Well done.

Dr Clarissa Giebel:

No, but it’s true Adam. It’s true.

Adam Smith:

That’s such a good answer. It’s not what’s important to me, it’s important to them. No, that is absolutely the perfect answer.

Dr Clarissa Giebel:

But I mean we are as researchers … Let’s be honest. We are … Sometimes the NIHR has specific funding calls. For example, this summer there was a funding call on supporting the needs of unpaid carers, general unpaid carers. So, we put in an application looking at unmet mental health and addressing the inequalities that unpaid dementia carers have in accessing that. So that was on the one hand, based on our research, but also fitting the current priorities that are given by the funders. And so, it’s a mix, really.

Adam Smith:

There’s that balance, isn’t there?

Dr Clarissa Giebel:

Yeah.

Adam Smith:

And of course I’ve just seen this week that there’s all the new … Certainly the NIHR funding streams of all just put a focus on end of life and palliative care as well. But without any focus, again, that this is disease agnostic. And we know that planning end of life care and palliative care in dementia is something that’s not been researched enough. So hopefully I’ll expect you to be applying to look at that following the funding next year.

Dr Clarissa Giebel:

Maybe.

Adam Smith:

Maybe.

Dr Clarissa Giebel:

But I have a lot of discussions about this, and I know dementia obviously is a terminal illness, but for me, looking at dementia research is all about enabling people, when they’re still fit and able, to prolong that as much as possible and not necessarily look at … Which is equally very important to look at the really late stages and much more about let’s keep fit and active and engaged when we have it and be ourselves still with the dementia. That’s-

Adam Smith:

No. I could understand that. As you say, I think the end stage are important because that’s definitely something I think all too often, particularly in clinical research, that section there has been under researched. We don’t know enough about how to make people comfortable, how to continue to communicate, particularly the very late stages. Thank you, Clarissa.

I’m going to stick with you for one more question because I know that you do a lot of international collaborations. How can they actually help? How do they help research, people here in the UK obviously, which is the system on which you are particularly focused?

Dr Clarissa Giebel:

So for example, by doing the Alzheimer’s Society study with the Netherlands, it flagged up that there is similarities in terms of how people access care or don’t, but also that there’s something in the system that can help facilitate access. So if we hadn’t done this comparison, we wouldn’t have known about this, for example. I’ve also recently been to Australia as part of a welcome trust visit and really trying to understand the aged care system there. It’s not dementia care system but aged care which in itself can be a barrier for people with young onset dementia for example. So now we’re trying to put in some funding together with some fantastic people in Sydney and Melbourne and Brisbane to try and compare the system because they are very similar and all the Australian researchers were saying, “We’re always left out with the western country funding systems because of our geography, but our system is so similar to the German or English system for example.”

So, you can learn a lot. And one thing I wanted to flag up as well is that we’ve just set up an INTERDEM Taskforce which launched in Bucharest in Romania and I know Adam and James, we were all there. And we launched the taskforce on inequalities in dementia care. So it’s for across Europe to really compare the system and different barriers but to take some learning because I think INTERDEM is really well placed being embedded with Alzheimer’s Europe to then link in with policy and decision makers because we need to take that step forward and look ahead. Not just do research now, but how can we make a real life change or try to do it.

Adam Smith:

Yeah, that’s brilliant. I think all those international collaborations helping that leveling up of that exchange of information and knowledge on health systems that can benefit them is really a great way of working and you give some great examples of that. Thank you, Clarissa.

Thais, can I bring you in now? Sorry, you’ve been sitting there very patiently. Thank you. So obviously you’re all working on health inequalities, but you all look at specific things within that. So, tell us about your research.

Thais Caprioli:

Yeah. I’m looking at how social support services has adapted during the pandemic. So, this includes services such as respite care, paid home care, peer support groups, daycare centers, anything that’s nonclinical really, and how they’ve adapted during the pandemic. And so we’ve seen an increase in the reliance of technology to deliver and access support and as we enter this, not quite post pandemic but I guess it’s less featured nowadays, I think elements of remote services will continue in some form and I think we need to be careful to not increase the inequalities in access as accessing technology and knowing how to use it when and as you want to is likely to depend on some offline factors such as socioeconomic status, educational attainment, cognitive impairments, sensory impairments and the ability to get some help as well to navigate the technology.

Adam Smith:

And what services particularly have we seen move from being a traditional in-person service to being virtual? What services have made that move?

Thais Caprioli:

This is during the pandemic. We’ve seen services such as peer support groups, singing groups as well who have moved online. I’ve spoken to people who have installed check-in hotlines. So where the providers would regularly check in with carers and unpaid carers and people with dementia to see how they were getting on. I’m currently doing some interviews now with some providers and most of their services have resumed to face-to-face now.

Adam Smith:

And I suppose in some ways, I mean this isn’t all negative. You would hope that moving some of these things online might have widened access to them, particularly those who might have had mobility issues and things before the pandemic. But I guess it depends which way you look at this, but so many of those services that did move online moved on really rapidly, not necessarily in the most organized or best of ways. Are we seeing that some of them are rolling back to in-person but keeping an online element or is this online part here to stay? Are you finding that there are ways that they can then improve that?

Thais Caprioli:

Some of the service providers that I’ve spoken with, many of them have come back to face-to-face delivery, but they said that remote services in some form could be beneficial in terms of quickly accessing personalized or timely care, especially in more remote settings. They were also talking about how they are trying to build capacity. So working with devices, tablets, iPhones with people with dementia when they are in a care center or during face-to-face services just to increase with the familiarity and being more confident in using devices for future use, future public health crisis.

Adam Smith:

So these services are here to stay in this new state. Hopefully a bit like hybrid conferences, I guess. Hopefully if some of these services stay hybrid, it sounds like they remain more accessible through online and face-to-face. But having the online element helps build capacity. I know you wrote a blog for us right at the beginning of your PhD in 2021, I think. So, what’s the last 18 months taught you? What have you learned since then? Has this project panned out pretty much how you expected or are you taking a new direction?

Thais Caprioli:

Yeah. I mean, time is flying so fast and I’ve learned so much but at the same time I have so much more to learn, which is daunting but exciting. One valuable skill that I have learned and it’s a skill that I’m currently still refining and would like to acquire more experience in, but is how to best include members of the public in research. So I have an unpaid carer and a person living with dementia who have been really involved in the project throughout the lifespan of the project really. And looking back to earlier days I wasn’t sure how and when to involve them and after I guess some experience reading up about it and most of all getting to know them, I think we built quite a successful and a collaborative working relationship and they’ve added so much value and they’ve been a pleasure to work with.

Adam Smith:

That partnership there. Well so I guess are you about 18 months away from finishing? Not that I want to guess.

Thais Caprioli:

Nine.

Adam Smith:

Nine months?

Thais Caprioli:

Yeah.

Adam Smith:

Oh wow. So, you’re definitely writing up now. Well I’m going to be fascinated to see what the general outcome is. I’m assuming that your question’s been answered is it’s positive that these things can support people but you’ve got to be wary.

Thais Caprioli:

Yeah, I think that technology can help and facilitate access to some people with dementia and unpaid carers, but not everyone will benefit equally and we need to be careful to not increase inequalities in access to services which may then lead to inequalities in health and social outcomes.

Adam Smith:

Thank you, Thais. And that talks really nicely as well. We recorded a series of three podcasts just a few weeks ago for our tech in dementia week as well. And actually, you wrote a blog for us for that week as well. So, if you’re interested in finding out more about Thais’ work, go and have a look at the blog she wrote for us during tech in dementia week. Thank you, Thais.

James, I’m going to come to you next because you actually wrote a blog for us at the start of your pandemic as well and you’ve been presenting your work recently. And as you said at the start, you’re coming to the end of your PhD. So, tell us about your research and not that we want to preempt your final publications, but what have you discovered?

James Watson:

Yeah. Hopefully submit my thesis early 2023. I’m currently doing what’s meant to be the final paper from a PhD. Hoping to submit that very soon. And yeah, I’ve been presenting a lot of conferences recently and other events. It’s been the only opportunity I’ve had to reflect on what I’ve done. I think when you’re in a PhD, you’re in it, but coming towards the end of it, I’ve been able to reflect on what I’ve done. Conferences have given me a great opportunity to look back and talk about what I’ve done. So, we started by looking at systematic review. So as Clarissa mentioned earlier, I use a lot of big data if you like, a lot electronic health records in my work. Trying to look at different aspects of healthcare and health outcomes in people with dementia and how social and geographic factors can impact them.

So the first step was to look at how other people have used similar data before. What they’ve found and what were the gaps in the literature that we could then pick up and run with. So, the first piece, that systematic review found a lot of inequalities in whether it was transitions into nursing and residential care, whether it was survivorship, whether it was use of healthcare or medications, a plethora of different things. And we found that age at diagnosis, sex, ethnicity, deprivation, marital status, a plethora of factors impacted those outcomes.

Adam Smith:

And at that time you were focused on hospital discharge, is that right?

James Watson:

There wasn’t anything specific we were focused on at that point. That set up once we’d looked at the data as well, oh, this is the area we can home in on and look towards. These can be our outcome measures and we can see how inequalities are impacting those.

Adam Smith:

And so where is this research taking you? Having looked at this, what comes next?

James Watson:

We’ve looked at how mortality isn’t equal between different social and geographic groups. We’ve looked at how healthcare use both primary and secondary is different. Now we’re looking at how healthcare use over time can impact subsequent mortality risk. My hope after my PhD would be to move towards a postdoc and looking at maybe different aspects, maybe incorporate some social care in. Because as we know, healthcare is one factor in dementia. There’s so much going on in dementia that can have an impact on the experience that someone has. So, trying to incorporate more than just healthcare into my work would be a great next step after this.

Adam Smith:

I don’t know about you, but in my work I find … Because there’s different stages to this, aren’t there? Having turned a spotlight on what you think is a problem and then gotten the evidence to say, actually yes, people who live their life in this way or who come from this particular background or live in this part of the world will have a worse outcome than the people who live here. For me, I can’t help but jump straight to the fixing the problem. What do we do to fix this and researching different ways to fix it. Is that something that you include in your work or is that something for Laura who we’re going to come to next?

James Watson:

Specifically we draw conclusions from our work, whether that’s something that can be enacted practically, whether that’s in service delivery, in more systemic issues in providing the technology or the availability of services for people to access. The next step is, as you say, that intervention remeasure that can actually have that legitimate impact that can improve the situation for people with dementia. So my work is more, I’d say setting the ground or the picture for what needs to be done. My hope is that with my thesis I can draw all the research together and say listen, this is what needs to be done, and take it to people who can have an impact, whether that’s through policy or actually enacting a change.

Adam Smith:

Yeah, I can see that. That’s always the bit that’s excited me. I mean I worked on healthcare associated infections and MRSA and things like that back in the day and going to the places that did things well was just as important as going to the places that weren’t doing so well. So you could look at the differences and then working out how to translate that and take that from one place to another and say, “Hey look, if you just change how you work and this is what’s really working in this hospital. Why don’t you do it too?” That’s kind of always what excited me. What excites you? What excites you about your work, James? I’m not going to put you on the spot too much. I promise.

James Watson:

Getting feedback from people fills me with pride and it makes me realize that the work I’m doing is important. If I can give a presentation at a conference and someone comes up to me, whether that’s another researcher or someone with dementia or a carer and says, “That’s a really interesting piece of research. Can we chat about X, Y, and Z?”, that’s what gets me going in terms of continuing in researching dementia. Because I feel like, oh, it’s actually having an impact. It’s not just me sat behind a desk typing words on a page. It’s doing something valuable.

Adam Smith:

And is there anything that’s frustrated or surprised … Well, and surprised you as well?

James Watson:

Sadly, my findings haven’t surprised me. Having looked at the research, you can kind of gauge-

Adam Smith:

I thought you were going to say that. I was-

James Watson:

Yeah. That’s unfortunately-

Adam Smith:

It’s kind of what you would have expected.

James Watson:

That is the aspect that I think we all know. And in that aspect, dementia’s no different from any other condition, but the inequalities exist. There’s no hiding from them. It’s more about trying to do the right research at the right time and trying to have the right impact at the right time to change it. And I think that’s what we’re all here for.

Adam Smith:

And having that evidence, having that statistics and knowledge is so important to inform policy which we’ll come back to at the end. Thank you, James. Laura-

Dr Clarissa Giebel:

Can I just dip in there? Sorry, Adam.

Adam Smith:

Absolutely. Go on, Clarissa. What did you have said?

Dr Clarissa Giebel:

Because it strikes me just from a purely researcher point of view, how important it is that we use different methodologies. So, Thais is very mixed methods. She’s done her own survey, she’s doing interviews. I mix methods, but I’ve also done routine data and James is really heavily on using existing data that’s there without having to, at this stage at least, speak to people directly. So, making really use of what’s already collected. So we can generate so much information and evidence by doing these different approaches. And equally if there’s then interventions out there, James, you could use again routine data that’s already collected to see does it make a change. So it’s just kind of flagging up there can be different approaches used to address inequalities.

Adam Smith:

And the good thing about using secondary data or the data that already exists is how rapidly you can do this then. This isn’t research that has to take 10 years of data collection or how that complexity. That you use what’s there. And particularly when you’re working in the NHS, making use of that data again rather than going and asking for more, I imagine makes you more popular than others, James.

James Watson:

Yeah. Often when I’m delivering my work I feel like a sore thumb. I stick out like a sore thumb because my work feels incredibly different to everyone else’s because of that aspect of using the secondary data or large volumes of data.

Adam Smith:

There’s been a push recently on from Health Data Research UK and the NIHR Research Design Service and in the US as well from Alzheimer’s Association to highlight how much data is there, not just in these longitudinal studies but from healthcare systems. I think we’ve got an article in the resources section on Dementia Researcher website. But if you’re just starting your PhD and you’re still finding your feet on what data you can get and where from, there are resources out there. Do drop us a line in the chat below and we can help push you to some of that. Because I know that that can be a bit of a daunting task at the start. And then not only finding the data but getting your hands on it as well. That’s a whole different topic for another podcast about your ethics and how you get your hands on that data, James. We’ll invite you back. Thank you.

Laura, you’ve been very patient. Thank you very much. Tell us about your work. I’ve been saving the best till last. Not really.

Laura Prato:

Thank you. I’ll pick up on what Clarissa was saying about how do you pick up a topic and what you focus on. And for my PhD, I’ve focused on wellbeing during the hospital discharge and for people with dementia and their careers and looking at what that would look like and how that could be supported. And the way we picked that as a topic to focus on was I at the time had a supervisor who was working within the NHS and was working with nurses, particularly discharge professionals. And that was a topic that they felt was really neglected and that could use more work. So that’s one way that you can choose a focus. You can ask professionals who’ve got that experience in their professional lives around where do we need to be focusing our efforts. And then at the beginning of my PhD I also consulted with a big PPI group and spoke to different carers about their experiences.

So, I was really led by quite often the negative experiences that they’d had and areas that they felt really needed to be addressed within research and areas that there was a focus for change that was required there. So yes, as I was saying, I looked at wellbeing and within policy documentation, wellbeing is a term that that’s quite often used. It’s used in NICE guidance from 2015 and 2016 around the discharge process. And even though we’ve got definitions from the Care Act, those definitions need a lot of work and they need a lot of contextualizing and they need a lot of carer input, which hasn’t necessarily always happened. Because it’s all well and good saying that … You’ll often see in policy that there needs to be a focus on the wellbeing of carers in patients with dementia. But if there’s quite a limited evidence base qualitatively as to what that looks like, that’s not always that helpful when it comes to practice.

So I interviewed carers and professionals, so doctors, nurses, consultants, OTs, social workers, and also carers about what they felt would support their wellbeing when their loved ones were leaving hospital. And in the end what happened to me was I ended up doing my data collection in 2021 during the pandemic, during the lockdown. So my project was conceived before the pandemic, but then what happened was the policy context changed quite significantly. So the government, and it was Mark Hancock at the time, issued policy in March 2020, April 2020, August 2020, all focused on when people with dementia were leaving hospital. Some of that policy’s been found unlawful of course this year, particularly around admissions to nursing homes. This was before there was any testing taking place. But basically what my PhD ended up reflecting in many ways was the impact that policy had on the wellbeing of people with dementia when they were in hospital and when that discharge was being planned.

So a lot of that was around, there were very long isolation periods and visiting was very restricted. So it was very difficult to plan the discharge process if you couldn’t actually see your loved one. It was very difficult for professionals to work together and professionally plan the discharge process. There was quite limited-service provision in the community. What was available was often online. And as Thais was saying earlier, that meant that you had quite strong inequalities because obviously for people with dementia and particularly if you’re talking about advanced dementia, using technology can be very challenging. And it was very challenging in the hospital context. It was difficult for professionals to access and work with people with dementia. So, physiotherapists and specialist nurses really had problems accessing people and it was very difficult to know what services were going to be available. And it was difficult for relatives. It was so difficult for them to access any kind of information at the time. They were often left ringing wards, they weren’t able to visit. And certainly my researcher has shown that there was an impact on wellbeing and around dignity for people with dementia because if you couldn’t access them in the hospital space, it was very difficult for them to have access to things like their own clothes.

Adam Smith:

So this is a complex issue here. I mean I know that discharge as a whole is an area that the NHS has been forever trying to fix. This is not just in the UK system but I’ve worked in the NHS, I’m not going to say how long ago because it’ll reveal my age, but delayed discharges … Ooh, the awful term bed blocking has come up, hasn’t it, over the years, which newspapers would’ve used. That it’s an issue fundamentally because that transition from in hospital to going back out again is a complex process. As a result, people stay in hospital longer than they necessarily need to and if the back door is blocked, the front door can’t let as many people in and so it trickles through the whole health system. And so I imagine interestingly looking at wellbeing within that system, you can’t feel that there’s going to be a great deal of wellbeing in what is this slightly broken complex system of … What was your definition of wellbeing? And I love that you looked at that quite holistically as well and not just at the … I guess we’d still call people patients at that stage. Not just at patients, but it’s good that you looked at that. How did you come to that process?

Laura Prato:

Yeah. I knew that I wanted to look at wellbeing because it is an area, like you said, that often gets ignored and-

Adam Smith:

Yeah, sorry. I wasn’t very clear in my question. Because it’s quite focused on the process at that point, isn’t it? I think there’s less concern about people and it’s just moving people through the system.

Laura Prato:

Yes. And that was even more so during COVID obviously when policy particularly was just around discharging people as quickly as possible. So, you ended up with quite rushed discharge processes. And the policy that existed before the pandemic was very clear that carers should be at the center of all decision-making and that wellbeing should be specifically considered. And like you were saying, when I did my systematic review as part of my PhD, it was very clear that often wasn’t happening and that it was being driven by the needs of the system, so the needs of the hospital and very much the care availability in the community. And-

Adam Smith:

The pandemic really-

Laura Prato:

[inaudible 00:40:43].

Adam Smith:

The pandemic really did skew your research massively there. Because when you want to look at the pandemic’s impact on the NHS, that part, that zeroing on that little bit of the system was massively affected. Because I can see, as you said, not knowing whether physio services … Those traditional services you would’ve referred to that weren’t necessarily great or consistent before or were busy, stressed, and hard to access, trying to then refer into them when you’re not even sure they still exist anymore is difficult. So, your research must have been really skewed by that.

Laura Prato:

Yeah. And you were saying service availability. There was all sorts of problems around people being on furlough. There was a lot of people with COVID in the community, a lot of people isolating, people isolating within the hospital. There was some of my participant talked about massive backlogs in terms of not being able to access basic equipment like a walking stick, a wheelchair, or a commode. So it made discharging very, very difficult and there was also all sorts of problems around the fact that there was so much fear created by the media that people became very afraid of nursing home placements as well. So there was a lot of issues whereas traditionally different professionals talked about this, you would have a discharge meeting, well they couldn’t take place. And people talked to me about having discharge meetings in car parks, following lateral flow tests and having to really fight for them.

But also, things around people’s relatives were … It was probably a point where they might have benefited from a care home or a nursing home placement. But people were very, very reluctant particularly pre-vaccine. And people were very reluctant to have carers coming to the house as well pre-vaccine. So, it was very, very difficult. It was difficult for professionals to work together because they couldn’t be in the same room. It was difficult to get contextual information on patients because historically you would have visitors on a ward, you would have multiple input into for a professional trying to see the picture of what someone was like in the community. But you couldn’t access, you couldn’t meet people’s uncles and aunties, you couldn’t do home assessments. So it was a really, really challenging time. It was really challenging in terms of wellbeing and wellbeing just wasn’t really considered. Because it couldn’t be. Policy regulations didn’t really allow. But what was great about it was because carers and professionals were really united in their approach to this, they both said to me that they saw that there was a greater need for wellbeing to be really centralized within the process. And they could see that because of the pandemic. And they could see the outcomes that were happening because they weren’t able to prioritize things like respite, which wasn’t really available or community activities.

So, it focused people’s minds a lot more on the value of wellbeing, which might necessarily have been there before. And you’re asking-

Adam Smith:

And does that give you an opportunity now to look more … Obviously the pandemic, as you say, we’d like to think we’re mostly through that now. To give you that nice … Because actually what you’ve stumbled into there is a bit of an exciting opportunity to go look at what happens when the system’s really broken compared to what it’s like when it’s not. Albeit that it’s in recovery still rather than a normal service. And is this maybe a chance, do you think, to reset and to start afresh knowing things like the outcomes of your study, to see what it’s like when it’s really bad?

Laura Prato:

Yes, absolutely. And like I said, what was really encouraging was that the professionals that I talked to, different doctors and specialist nurses and OTs, all had the same kind of insight and they all wanted to move away from a process that was driven by hospital assessments and hospital needs towards a process that is more focused on the care and the person with dementia, which is what it’s supposed to be and what policy argues for but hasn’t unfortunately been able to happen. One of the key things that I argue in my thesis that the pandemic showed was that risk has always been a massive driving factor of the discharge process. And fears around risk. And by that, I mean fears that somebody will fall, often is a very central factor when they’re making discharge decisions. And a lot of carers talked to me about the fact that they don’t feel involved in decision-making.

They feel that it’s a process where those decisions are made based on risk assessments and then essentially carers are brought in to say, “We’ve decided that your relative is not safe to go home.” But a lot of professionals had an insight into that and the need to move away from risk dominating the process and instead embrace risk in order to enable wellbeing. So if somebody does want to go home, how do we facilitate that? And looking at how that can be done rather than making a decision that some of the professionals did identify was probably due to discrimination some of the time around whether somebody is capable of going home and whether they could go home with the correct support.

Adam Smith:

So tell me, this is probably a … Last question on this, I promise. Because I just find this topic fascinating. It’s my background. But James and Laura, I can’t help but think that somewhere exists some great examples and policy documents that define what a great discharge process would look like for everybody. We can’t have not thought of that before. Somewhere there’ll be a great example, a perfect gold standard model of what a perfect discharge will look like. Are we saying that that doesn’t exist, or it does exist, it’s just that we haven’t got the time or the system that facilitates that?

Laura Prato:

I think it’s difficult to have a defined … I argue in my thesis that we need a roadmap for discharge that shifts to more towards carers and their needs at the center-

Adam Smith:

Have you thought about going into government?

Laura Prato:

No.

Adam Smith:

Local politics. I feel if you’re making roadmaps, you’d definitely make a great politician.

Laura Prato:

But the difficulty is that the needs are very, very individualized. So, an example from my PhD is discharge planning meetings which are considered kind of gold standard and that a discharge planning meeting is a great thing and it can be. And I came across examples of brilliant discharge planning meetings where the carer felt that they were treated with equity, that their viewpoint was heard and that the decision was made as a group and that risk was tolerated. So it wasn’t, we’ve decided that this person can’t go home. But then I also heard examples of discharge meetings where there was an inequality of arms and that carers actually felt bullied and they went to a discharge meeting and felt that they weren’t listened to. So it’s very difficult to point to a specific. It has to be a holistic person-centered process supported by professionals who are really committed to that.

Adam Smith:

Absolutely. And as Clarissa said at the start, you’ve also then got to have the services consistently delivered beyond the secondary care setting, the hospital setting to actually discharge people to maintain that wellbeing. Thank you. Thank you, Laura.

I’m going to try and recap. So, we’ve picked up at the start, as we said back with Clarissa half an hour ago, that inequalities exist across the system. That these are perpetuated throughout somebody’s life. I mean these healthcare systems that potentially the problems start much earlier on than before we suddenly get to hospital or when dementia develops. It can be influenced by your gender, your race, where you live, and also the service provision in your area. And that potentially gets worse as you get older. And there’s this new increasing potential digital divide between people that I think we’re very aware of.

But during the pandemic systems have also rapidly changed and innovated, in some ways good to be able to ensure we can continue to provide services, but also potentially bad ways that have cut some people off further. And that no surprises really, this isn’t I think a specific UK issue, but there are challenges. And we haven’t really talked about money today, but I can’t help but feel that money and the costs of social care, the costs of these services, in the UK, staffing them as well. We know that there are problems with employing the right professionals to maintain some of these services. That all these things exist. And this brilliant work at Liverpool has put spotlights on it, brought these into papers, published these papers and it’s time to do something about that now. Right. Let’s move on.

Okay. It’s almost time to finish, but before we do, I have some last few questions just to help others who are starting out in the field and to try and wrap this topic up. Because this is a challenge here. I mean we’re talking about this in the third person here, but of course what’s at the center of this are people who are living every day through this, navigating through this health system, living with the dementia, and having the frustrations and living with these health inequalities and care inequalities that we’ve talked about. So, you’ve had to work many … Most of you’ve said that you’ve had people involved with dementia and living with dementia and carers involved in your process. How do you remain resilient during this what I imagine is quite a challenging topic? Clarissa, why don’t you go first? How do you personally remain resilient in this?

Dr Clarissa Giebel:

I get incredibly frustrated, and I get increasingly frustrated with the system issues and the social care system in this country. So as you know, it’s a bit different in Germany. I’m not saying it’s great in Germany, but it works better to support those that are much more vulnerable and from much more deprived backgrounds there. And so I know that certain systems can work and the Nordic systems can work. So it is frustrating, but then it’s also about working with all these lived experts more and being much more of an activist. I feel, not the older I get, but the more I do research, I feel much more like I’m becoming an activist into trying to make a change outside of just doing research.

Adam Smith:

Is that a good thing? Are you supposed to remain neutral as a … Is it the topic? Do you need to go look at some working system? Well, you do that with some of your international work.

Dr Clarissa Giebel:

Yeah. But I feel we have a responsibility as researchers to not just share the … I mean this is hard facts. We know things aren’t working. It’s not like we’re making them up and we’re biased in that. We know things aren’t working. So in addition to trying to find interventions and real life solutions, we need to shout out about it as well and give people that voice. I don’t know. I feel more and more that’s our responsibility because very little seems to change. Yes, I’m getting frustrated.

Adam Smith:

So, finding that balance between publishing your paper but then actually making sure somebody reads it. We’re talking about this a lot at the moment, is this implementation science about where’s this cutoff between doing the research if you develop a new intervention for example, and then getting the costs and getting that through into services. I guess implementation is an issue here, which is not so much in you want to create a new service, but you want people to pay attention to the facts you’ve found and the research you’ve published. James, Thais, Laura, do you have any tips for remaining resilient on these difficult challenging topics?

James Watson:

I was going to continue what Clarissa said, to be honest. Remaining a bit, a hard-nosed. I think something very British is the fact that we like to moan and a collective moan feels better than just you doing it on your own. But not just doing research for the sake of research. I’m sure all of us here don’t do the research for it to sit on a shelf and gather dust. We do it to have an impact. So, the way to have an impact is to be hard-nosed, is to say it like it is and to present where the issues are. Whether that’s a funding issue, whether that’s central governments, whether that’s local government, whether that’s service delivery or whatever it may be. It’s about making the point. And if we don’t make the point then nothing will change.

Adam Smith:

And you’ve just hit on a topic that I’m going to write a blog on over Christmas about how to disseminate research findings beyond just publishing. I think it’s an important topic. Thank you, James.

Okay, so right now the health secretary is probably listening to this podcast because he listens all the time. No, he doesn’t really. But let’s just pretend for a second that there are policymakers across the world listening to this podcast. What would you really like them to hear? What would you like to say to policymakers? Laura-

Dr Clarissa Giebel:

This is … Oh, sorry.

Adam Smith:

Oh, sorry. No, go on, Clarissa. I put Laura on the spot.

Dr Clarissa Giebel:

Listen to the evidence that’s out there and I think it’s for us, again, it’s our duty as researchers to make papers that can be 10 pages long, really accessible for anyone to really quickly read it. Because policymakers in particular are very busy. Make it short, concise, easily accessible, but also maybe to … What’s the word for it? Contextualize that with more lived experiences. So maybe next to that, have a carer or a person with dementia do a little blob on this is how it is for me. This is the evidence that we found, and this is how it is for me. Maybe getting it more engaging.

Adam Smith:

Just to push back a little bit, if I was a policymaker, I think also researchers could make it easier for me, certainly, by creating those … Rather than publishing your results in a paper that’s a little bit hard to read and has got seven pages of complexity to it, I think researchers can also do more to bring out the main points, but also as well to highlight what you can do about it. I think highlighting issue, it’s always one of those things and you’re just bringing me a problem. Actually, I need you to bring me a solution. And I think quite often, whether you’re looking in social care or in local organization of NHS services and things like that, what you actually want is somebody to make your life easy and bring you something that says, “Look, here is a solution to a problem. This is what it’s going to cost, this is how you can do it.” It makes my life easier to go and go, “Oh great, I can see that.” Because I think nobody wants to provide bad care or bad services or have these … Nobody would say that these inequalities are right or fair, but I think coming together to try and help deliver them and improve them is the right thing to do.

Thank you very much. This has been really interesting. I’m afraid it is all we have time for today, but thank you very much, James, Thais, Laura, Clarissa. Have you got any final points you’d like to make?

Dr Clarissa Giebel:

I think you’re doing an amazing job here, Adam, just to kind of flag it up. Because doing all these podcasts as well is another way of disseminating work in a really easy format, so that’s great.

Adam Smith:

Well, one of the things that we always get back on the podcast is that because it’s not just focused in on care research or social care, that we also look at the basic side’s things. I think it’s really important that everybody working in dementia research, whether you’re a fundamental scientist or a biologist or a care researcher, if everybody has a bit of understanding of people’s work, it brings that opportunity together for us to work together. I’m not making much sense. I should add, I’ve got COVID right now, so if I’m rambling on, I’m going to use that as an excuse, not just because I’m my usual rambling self.

I’m afraid that is all we have time for today, but if you’d like to come on the show and discuss your own research, no matter what field you’re working in or wherever you are in the world, we’d love to hear from you. We have plans for a new series where mentees interview their mentors about their careers coming in the new year as well. So, if your mentor is truly inspiring and you’d like to take a turn at hosting your own show, do get in touch. I’d like to thank our guests, the incredible Dr. Clarissa Giebel, the wonderful Thais Caprioli, and the ever dependable James Watson, and the amazing Laura Prato. Thank you very much for joining us.

Dr Clarissa Giebel:

Thank you, Adam.

James Watson:

Thank you.

Thais Caprioli:

Thank you.

Laura Prato:

Thank you.

Adam Smith:

I’m Adam Smith and you’ve been listening to the Dementia Researcher Podcast. Please remember to leave us a review and let us know what you think of the show.

Voice Over:

Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK, Alzheimer’s Society, Race Against Dementia, and the Alzheimer’s Association. Bringing you research, news, career tips, and support.

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