Podcast – Supporting Social Care Research & Building Capacity

Voice Over:

Welcome to the NIHR Dementia Researcher Podcast, brought to you by DementiaResearcher.NIHR.ac.uk, in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Dr Clarissa Giebel:

Hello, and thank you for tuning in to the Dementia Researcher Podcast, where we discuss careers, science, and research. This week, we are discussing the importance of social care research and efforts to better support the research field and build capacity. My name is Clarissa Giebel, and at the University of Liverpool, my own research focuses on every day functioning, health inequalities, and social care in dementia and aging.

Dr Clarissa Giebel:

Social care is a term that generally describes all forms of personal care and other practical assistance for children, young people, adults, and older adults who need extra support. However, as this is the Dementia Researcher Podcast, today we will focus more on the research around older adults. It is important to say, though, that we know the work and initiatives we will discuss today do cut across all areas of social care.

Dr Clarissa Giebel:

I’m delighted to be joined by three guests who know a lot about the topic, so let’s do some introductions. First, we have Teresa Atkinson from the University of Worcester, next is Dr. Michael Clark from the NIHR School of Social Care Research, and our third guest is Tom Redfearn from Alzheimer’s Society. Hello, everyone.

Dr Michael Clark:

Hi.

Tom Redfearn:

Hi there.

Dr Clarissa Giebel:

Great to have you all you here. Let’s start with some proper introductions. So Teresa, can I start by asking you to introduce yourself?

Teresa Atkinson:

Yes, thanks Clarissa. I’m Teresa Atkinson, and I work at the Association for Dementia Studies, which is based at the University of Worcester. I’m a senior research fellow there, but I’ve also a module lead on our post-graduate certificate program and I’ve been with them now for nine years. Prior to that, I worked for nine years as a research lead for an independent charity who supported young people with profound learning difficulties, including people on the autistic spectrum. So that’s a bit about me.

Dr Clarissa Giebel:

Thank you. Mike, do you want to go next?

Dr Michael Clark:

Thanks, Clarissa. Hi everyone. Yeah, I’m Mike Clark. I’m the research program manager with the NIHR School for Social Care Research, so that’s a part of NIHR that brings together seven universities and teams within those universities that all do research across various aspects of the landscape of social care. And I’m also a researcher at LSE having done various work in social care but also including dementia.

Dr Clarissa Giebel:

Okay, brilliant. Thank you. And Tom, how about you?

Tom Redfearn:

Of course. I think I’m the non-researcher muggle on the call. So I’m Tom Redfearn and I’m the public affairs manager at Alzheimer’s Society. That basically means that my role is to try and persuade politicians in Westminster to change policy or legislation that serves to lead to more positive outcomes for people affected by dementia.

Dr Clarissa Giebel:

Okay, great. So Tom, I might start with you actually.

Dr Clarissa Giebel:

Can you perhaps set the scene and paint a picture of the overall landscape? So how would you say that dementia and social care are connected?

Tom Redfearn:

So dementia and social care are absolutely intrinsic to one another. So we know that if someone develops cancer, for instance, there are a host of pharmacological interventions, some more successful than others, available. And so the person would primarily receive their treatments and support from health care, so in this country though the NHS.

Tom Redfearn:

Unfortunately, we still don’t have any significant pharmacological interventions for dementia, so there isn’t that same treatment pathway for most people with dementia. And so support, that’s support not treatments, is largely provided through some form of social care. In terms of users of social care, these are overwhelmingly people with dementia. For instance, we know that at least 70% of care home residents in the UK have some form of dementia and the most recent figures available show that around 60% of people who receive support through domiciliary care are also people with dementia.

Dr Clarissa Giebel:

So sadly [inaudible] it’s absolutely vital once people get a diagnosis, if they do indeed do, which many unfortunately don’t, to have that equal and equitable access to social care, which isn’t necessarily given either. And I think maybe for our listeners it’s important when we talk about social care, you just mentioned care homes and domiciliary care, so that’s paid home care, but there’s so many other forms as well. There’s day care centers, there’s respite care for carers, there’s going to support groups or social activities in the community. All sorts of social support, basically, that’s really important and that’s been really badly affected by the pandemic, isn’t it?

Tom Redfearn:

Yeah, absolutely right. The… So people with dementia have… we at Alzheimer’s Society are saying that people with dementia have been worse hit during the pandemic based in terms of death rates. So we know that at the moment, at around 150,000 people have sadly died of COVID-19 in the UK. At least 34,000 of those were people with dementia and that is likely due to, not necessarily the clinical vulnerability to COVID for people with dementia, but more around the… more kind of the social aspects. For example, we know that people in care homes were particularly badly hit and given what I was saying before about 70% of care home residents have… at least 70% of care home residents have some form of dementia. Obviously, they were disproportionately hit there.

Tom Redfearn:

But also as you say, a lot of those kind of day care services or other support that’s available has not been available during this time. And we know that for people with dementia, unless they use their cognitive skills, unless they use their communication skills, they will lose them and they’ll lose them for good. And that could ultimately lead to them dying prematurely. So we’re really concerned at the level of deterioration we’ve seen amongst people with dementia during the last 18 months or so.

Dr Clarissa Giebel:

Yeah, that’s what our researcher at the University of Liverpool has picked up on as well that… I was leading on where we looked at community based, but also care home impacts on people with dementia and carers and as you were mentioning the deterioration, we noticed that in the reports from carers, already five, six weeks after nationwide lockdown last year and unfortunately, that has lead to some people that we followed up over long time to enter a care home much faster because they deteriorated so much. But also, as you were saying, with all the social support services, day care, groups, all these things, paid home care, we’ve seen such a drastic decline in access to them throughout the pandemic and since March, so it’s really… People with dementia and their carers have been really badly hit.

Teresa Atkinson:

Yeah.

Dr Michael Clark:

Yeah, absolutely.

Dr Clarissa Giebel:

So Tom, another question, just to follow up. Why do you think we need more research in social care and how can that help?

Tom Redfearn:

We currently have a real lack of evidence for the care that we provide. So for instance, researchers from the WHELD study, W-H-E-L-D study, found that out of 170 training manuals for person-centered care in dementia, only four of those had actually evidence to demonstrate that they worked and those were evidenced in a research setting. Now I said earlier, most people with other health conditions receive their care through the NHS, where thoroughly evidence efficacy is of primary importance. That’s not the case for social care.

Tom Redfearn:

So this means that once again people with dementia face yet another inequity compared to other health conditions. An example of research improving our understanding of what living well means for people with dementia is the IDEAL study, which is improving the education of dementia and enhancing active life. So the IDEAL study, which is an Alzheimer’s Society Center of Excellence, led by Professor Linda Clare at Exeter University. Now IDEAL examines influences on quality of life and well-being for people living with dementia and family carers and has identified a range of factors that might impact on quality of life for people with dementia. So the researchers found that factors of optimism, self-esteem, loneliness and depression are really important in influencing how people with dementia are able to live well.

Dr Clarissa Giebel:

Yeah, certainly a big study that is big in the field and we’ve heard about a lot. It’s great that there’s the research that’s going on but it’s also important for us with this podcast to highlight how important it is to continue doing research in the field. Thank you, Tom.

Dr Clarissa Giebel:

Teresa, as a researcher working in this area, can you tell us about your work and some of the work taking place at Worcester?

Teresa Atkinson:

Yes, I can. Thank you, Clarissa.

Teresa Atkinson:

I think just to pick up on some of the points that Tom said, actually, I think capturing that evidence-base is really important and also for me, to get across the point really that research isn’t always at arm’s length. So our research project involved people with [inaudible] commissioners, real front line workers, you know, in social care field. And for me, I think that adds massive value to what we do.

Teresa Atkinson:

So some of the projects we’ve been working on and are currently working on, the first one to mention really is our Meeting Centers Program. So this has been established now over around seven years and the current project looks to set up 20 new Meeting Centers over its three year life. These are really important for people living with dementia. As Tom mentioned, that social connectiveness, all people living with dementia and their families and supporters, is really crucial and has become even more highlighted, I think, during the recent pandemic.

Teresa Atkinson:

So the Meeting Centers Program has been really, really important in keeping people connected and during that pandemic time, those meetings have taken place a lot online for the Meeting Centers that were already established and that’s a big step forward for people. We’re not all comfortable, you know, with online working and platforms and particularly that can be a real barrier for people living with dementia. So I think that’s… it’s really encouraged us to see that those kind of initiatives can continue even when people can’t physically get together.

Teresa Atkinson:

Leading on from that project actually, quite nicely was our SCI-Dem project. We love it, don’t we, in research to use these acronyms, so SCI-Dem stood for Sustainable Community Interventions in Dementia. And again, I think that’s really key, how do we keep these initiatives going. We can have great initiatives for people living with dementia but actually, how are those sustainable over time.

Teresa Atkinson:

So that project really helped us to gather together that evidence. We used a realist review method, which we haven’t used before. So I think, again, for researchers, sometimes we have to be bold, we need to try new things and test the waters and see whether those work for us. So the realist review gave us a lot of information about what can help to keep things sustainable and one of the outputs from that was through booklets. One for commissioners, one for people living with dementia in an accessible format and the other for organizers of these kinds of events and groups, et cetera.

Teresa Atkinson:

So again, I think, you know, that kind of evidence, coming back to Tom’s point, is really crucial to help us to help other people to keep initiatives going.

Teresa Atkinson:

We’ve also got our CHARM project, another acronym. And that stands for Care Home Action Research in Residence Model. What we really wanted to gain and gather through that project was to help front line practitioners, families, people living with dementia to undertake their own research projects in care homes because actually we need to know what matters to them. We need to support them to investigate what’s important to them and to look at outcomes that are going to have a direct impact on their well-being and help to support them better in the care homes that they live in.

Teresa Atkinson:

The project we’ve just been awarded funding for, I’m personally involved in a lot. I’m leading on that project and we’ve just been awarded… we’re really delighted to have had the support of SSCR to get the funding for this project. And this is to look at extra care housing for people living with dementia. So you mentioned right at the beginning there, Clarissa, we know that people with dementia are in a lot of settings, in their own homes, in care homes. But a lot of people now are opting for extra care housing as a new way of looking to later life models of living.

Teresa Atkinson:

So extra care housing is another term really for supportive housing. So people live independently, in their own apartments, but there’s usually care available on site, social care and health care brought in to support people in later life. So we know that that works really, really well. That model works great for older people, but we’re not really sure how well that works for people living with dementia.

Teresa Atkinson:

So there are various types of extra care housing and what we’re going to look at and explore is how different models work best for people living with dementia and what supports their well-being.

Dr Clarissa Giebel:

Certainly a lot of work going on there, isn’t there? That’s fantastic and I like those spread of topics as well, all looking in social care but different angles within in.

Dr Clarissa Giebel:

And one thing, just to kind of pick up. I think you mentioned as well earlier, with the digital issues so obviously… unfortunately, lots of services are provided digitally these days since the pandemic for people with dementia and carers now, can be some positives I’ve seen within our research, but also talking to our public advisors and carers because they can easily, I suppose, access carers groups and don’t have to travel, for example, but what people have also said is it’s just not the same as that personal touch and coming together, face-to-face. But then also I think picking up on the inequalities there as well. Some people might struggle accessing it and really need a carer to support them in accessing the services remotely. And I think it’s just something to bear in mind in the new pandemic slash post pandemic era of social care, how we can manage maybe a mixture of remote and face-to-face social care.

Dr Clarissa Giebel:

So it sounds… so there’s certainly a lot of different work going on. That’s fantastic, Teresa. And the group that you’re working at sounds to really transform research findings into services that make a real difference. What advice would you give to any early career researchers out there about going from research to I suppose implementation and shaping services?

Teresa Atkinson:

I think that’s a really good question. And I think for me, one of the big things is ownership. So I think if you involve people, they do have a sense of ownership over that research. So what I personally find is the more you can involve people and the more you can help them to be involved in your research, the more they understand that research and have a sense of ownership with you, alongside you.

Teresa Atkinson:

So I think historically we’ve done a lot of research on topics on people, but actually working alongside people and building their skills. As you said, Clarissa, we’re working far more remotely these days, but that doesn’t have to preclude that kind of involvement with people.

Teresa Atkinson:

So I mentioned the project with extra care housing that we’re going… we just started working on and advisory group there will include a person living with dementia and they’ll be supported by someone to help their involvement. We could have face-to-face meetings, hopefully, but a lot of that may be remote. But having that sense of ownership and that guidance in our research is really vital.

Teresa Atkinson:

The second thing I would say is to ensure that there is some accessibility of the findings. Because again, all too often research has sat on a dusty shelf. You’ve done the research, it translates into a report, which can be very comprehensive or it can translate into a peer reviewed article, which again, is access by a certain population, but here’s what’s really key is to ensure those findings reach the people who can make a difference.

Teresa Atkinson:

So I mentioned our SCI-Dem project, the booklets that we had, the people living with dementia, organizers and commissioners. We need to ensure, as well as ownership of that research, that those findings go to people who can make a real difference and you can benefit from that research.

Dr Clarissa Giebel:

Tom, you raised your hand.

Tom Redfearn:

Yeah. Just completely agree with everything Teresa has said. But just actually to build on that as well. I think so often so many in research think that job is done once their report is written, but actually that’s the beginning of the process, really. That the difficulty then or the big job then is actually getting those things implemented. And what I’d certainly encourage researchers to do is get your research, particularly where it has proven to make a difference, get your research in front of the research team at Alzheimer’s Society because we’re currently pushing the government to deliver its Manifesto Pledge of doubling dementia research funding at the moment and evidence of this kind of success can really help us make those arguments. So it can help us to make sure there is further funding for research in the future.

Tom Redfearn:

But also it can help us to demonstrate to governments this is what will actually change things for people with dementia. And getting back to the earlier question you asked me about evidenced social care, this will really help us make those arguments to governments.

Dr Clarissa Giebel:

Absolutely. That’s great for you to highlight. I think I’ve had an e-mail about that as well, actually, from one of your colleagues, Tom. Thank you very much, Teresa.

Dr Clarissa Giebel:

Now I’m going to move to Mike. So again, Mike is working for the NHR School for Social Care Research. And Teresa was also mentioning about involving members of the public and commissioners is better in the work, so I suppose it’s all about capacity building in these non-academics as well. Why is capacity development in adult social care research important, Mike?

Dr Michael Clark:

Thanks, Clarissa. All the contributors today have highlighted a number of things about how complex adult social care really is, but how essential it is to helping people with dementia and other conditions, but particularly today, people with dementia to help them live well, to make the most of their well-being and their relationships with family and friends and communities. And to organize that and to do that in the most effective way requires us to understand what is the best evidence base to help people make decisions both when they’re planning and delivering services, but also individuals with dementia and their families. “How can I make the best decisions?”

Dr Michael Clark:

We also know that, to add to the complexity, adult social care is organized across 152 local authorities, each managing their own markets and within those markets different providers of different kinds of care. The sort of things that you mentioned earlier, Clarissa.

Dr Michael Clark:

So how can we help those local authorities to have an evidence base that they can draw upon that is general, that will relate across all of them so they can use that to then inform how they can tailor their local support, their local commissioning, work of their local providers to provide better care and deliver that personalized care. So that’s a challenging tension there between how do we have that generic evidence base but also one that supports delivery of personalized care.

Dr Michael Clark:

We have huge challenges in developing and then supporting the delivery of that evidence based in adult social care with regard to supporting people living with dementia. And historically, it’s been an under-researched area. There’s been… generally, not a consistent program of funding for research in the area compared to, for instance, health care. I mean, there have been some great funders. The Alzheimer’s Society, of course, Tom’s organization there, have been great supporters over the years. The NIHR, particularly through the School for Social Care Research has been supporting developing research in adult social care and dementia. And other parts of NIHR, but there hasn’t been a consistent program of funding related to social care research for supporting people with dementia.

Dr Michael Clark:

That happily is changing quite rapidly, I think. Lots of different funders are coming now. The NIHR is putting more money into supporting social care research and dementia research. If we’re going to make the best use of that funding, we need good quality researchers that can deliver the research.

Dr Michael Clark:

Now as I think colleagues here, particularly Teresa who said that delivery of that research in the best way is increasingly complex itself. Not only do you need to understand how to frame questions in the right way, plan your methods, undertake those methods, et cetera, you need to do that with a complex array of partnerships, partnerships with commissioners, service providers, partnerships with people that use services and with lived experience. Those are all really difficult skills to develop and so we need… not only do we need capacity building in terms of the number of people to undertake the research, we need capacity development of those people to be able to do the research with the right ethos.

Dr Michael Clark:

So that’s two different aspects of capacity building. And as I think you said, Clarissa, we need to then also develop capacity within the communities, people with lived experience, for instance, to be able to help them become more engaged with shaping that research agenda, so that it is relevant to them as well and helps them ultimately and people in similar positions to make the most of their well-being.

Dr Michael Clark:

So there’s a huge agenda if we’re really going to provide the evidence base and make the most some of the opportunities that are opening up to support social care research.

Dr Clarissa Giebel:

I’m really… having been working at a couple of different universities, now I’m at Liverpool University for the past three, four years, working at what we call… what you will be familiar with, Mike, the Applied Research Collaboration, Northwest Coast. So it’s an NIHR strand as well, and infrastructure and there are 15 of these across England and one of the really big ethos underpinning, ethos of this is to every research project, you don’t just work with academics, you work with clinicians, with commissioners, with that sector, with service users, with carers in my case, and to me, it’s so much nicer working in this big group of different experiences and people’s backgrounds and what I’ve learned in the past few years as well is that the carers that I’ve been working with, obviously we’re getting new people in as well throughout the years, but they’ve become much more confident in raising their opinions in the meeting and I’m really mindful that it must be difficult, if you’re in a room full of academics or clinicians and then you’ve come in as a person with dementia or carer.

Dr Clarissa Giebel:

But that’s been really nice having that mixture of backgrounds and it really helps developing the research, I think. And I think what you were saying as well about the funding, so there is… is it annual or biannual calls for research for social care from the NIHR that are out there but I also think it’s important to mention the Dementia Highlight Notice for funding?

Dr Michael Clark:

Absolutely. As I was saying, the opportunities for funding social care research now are improving dramatically. The NIHR now has, I think for a couple of years, been running the Research for Social Care Program, which is an offshoot of Research for Patient Benefit and that’s organized specifically to support social care research so it has a national panel of people that understand social care research who inform the commissioning of the research, rather than the regional program through Research for Patient Benefit. That has a range of people from across health that perhaps wouldn’t understand all of the social care research proposals that go to them.

Dr Michael Clark:

So I think, yeah, [inaudible] lots of ways. The opportunities are opening up to support social care research. One of the things that you’ve helped to highlight in your discussion there, Clarissa, is you talked about working with clinicians and of course, in social care, we don’t tend to talk about clinicians. We tend to talk more about practitioners. But one of the interesting things is, compared to health care, is that there’s a bigger gap between research and practice in social care, compared to health care.

Dr Michael Clark:

And the most obvious example of that is in health care there are quite a lot of these sort of clinical academics, these people that bridge the two worlds that have a clinical role but also have an academic role and plan and undertake research. And there’s really nice boundary spanners. They can take issues they see in practice and bring them into their research and they can take the evidence from their research back to improve practice. Social care doesn’t have too many of those people, if any. I struggle to find any, really. At a fairly early stage, practitioners in social care, they either carry on on an academic route or they carry on on practice route and there’s very little bridging across the two.

Dr Michael Clark:

And one of the things we need to build capacity in is that kind of practitioner academic role, who can straddle the two worlds and helps us in the same way that we have the clinical academics in the health care world.

Dr Clarissa Giebel:

Absolutely. That’s really important. So that’d be something to support social care research in capacity building. Is there anything else, Teresa or Tom, that you would like to add here? Tom?

Tom Redfearn:

I think actually just building on Mike’s point that the… we know that dementia is one of those conditions, probably more so than others, that really does straddle that divide between health and social care. And so I think it’s absolutely important, as Mike was saying, around making sure that research is also straddle that divide and make sure that you’ve got people coming in from both of those aspects.

Tom Redfearn:

But also as well, in terms of kind of promoting the work, I would definitely encourage you to think about other non-traditional mechanisms to do this or non-traditional to what is usually the case in academia. So I know that many academics are quite humble people and they don’t really like to promote their work, but actually it’s really important. And when I say non-traditional means, as you might expect coming from me, I would say politicians and civil servants, so their… yes, commissioners are really important and again, kind of going back to the moonshot. What we’re trying to do through the Dementia Moonshot is not just fund clinical research, which is obviously very important, but also make sure care research is considered in there because by and large, this is a very kind of general kind of sweeping statement, is that care research helps people with dementia now, whereas clinical research helps people with dementia in the future. And so both are equally important.

Tom Redfearn:

But I don’t think we give enough appreciation to that care research.

Dr Clarissa Giebel:

Oh, absolutely. It’s usually when you go to conferences, there’s an academic as well, there’s this clear divide between more clinical kind of looking at pharmacology and what happens in the brain and care research, so yes, there’s a kind of hierarchy there as well, which is interesting.

Dr Clarissa Giebel:

So you mentioning, Tom, about politicians and policy kind of as well and the importance of focusing on care research. So Alzheimer’s Society has been one of the many organizations calling for reforming of the social care system. So I suppose, do we need more research then to decide what reforms to make or do we already have that research?

Tom Redfearn:

You’re absolutely right. This is something that we’ve been pushing on for years, if not… well, it will be decades. Unfortunately, we’ve not seen much success yet, as it’s such a political hot potato. But I’m hopeful that we’ll see some positive movements this year. In terms of your question as to whether research can help, absolutely, it can. So while there is obviously some cynicism that politicians don’t actually listen to evidence and there’s obviously some truth to that at times, that’s far from being true all of the time. But one of the biggest challenges around getting social care reform, as everybody knows, is getting the money to pay for it. And it’s often the treasury who pushes back on that. And the treasury, as you would guess, they love a spreadsheet, they love a chart, so if we’re able to provide that evidence that social care interventions actually work, that makes it far easier for organizations like ours [inaudible] to persuade the treasury and the wider governments that reform and the right reform, is the right decision to make.

Dr Clarissa Giebel:

I think the pandemic has really highlighted whether or not and how and to what extent politicians do listen to evidence sometimes and decision makers. But yes, research is vital, absolutely.

Dr Clarissa Giebel:

Teresa, just going back to you as we’re kind of wrapping up this podcast slowly. What advice would you give to early career researchers who are just starting out on their social care research, having heard everything now that we’ve talked about as well?

Teresa Atkinson:

It’s really interesting to have Tom and Mike’s comments and views on this because I think if we think about early career researchers, one of the things I would say to them is, “Don’t be afraid to ask. Ask for help and get that capacity building right from the beginning.” Because we don’t know what we don’t know. We’re all learning, all of the time. And actually, as an early career researcher, asking those questions and scaffolding that learning is really important. Because it’s bit like… I was just reflecting on something Tom said and it… for me, it feels a bit like building a ladder. We need to get that evidence base and climb that ladder to get the impact and get that evidence to reach the hierarchy that Tom’s just mentioned. The politicians and the people who are going to make that happen.

Teresa Atkinson:

For early career researchers, you’re the people with the passion, you’re the people on the ground, gathering the information and that evidence. And I guess one of the other things I would say to early career researchers is, to me, it’s absolutely privilege to do research and to be involved with the people that we work with, whether they’re carers, people living with dementias, commissioners, care workers, et cetera. It’s a real privilege and we need to be authentic in the way we engage with our research.

Teresa Atkinson:

So I mentioned the ownership and the involvement. That for me, that privilege is really key. We need to value what people say. And sometimes we don’t get the answers we want and I think early career researchers also need to be prepared for that because not getting the answers you want, actually sometimes opens a door to better evidence and to working in a different way with people.

Teresa Atkinson:

So treat that privilege with respect, value the information you get and make sure you climb that ladder and get that information to where it needs to be to be actioned and to get that evidence out into practice.

Dr Clarissa Giebel:

Thank you. I absolutely agree with what you said. Mike.

Dr Michael Clark:

Thanks, yeah. Just to add to Teresa, to help early career researchers to climb that ladder, I think one piece of advice is for them to develop their next works, to then learn about the opportunities that are opening up. We’ve talked about some today. But also to get the support to make the most of those opportunities. I think some of the opportunities are obviously very competitive and if people don’t have the right support to help them be competitive, to have the right supervision, to help them write the grant applications or the applications for fellowships, then they will not be able to make the most of those opportunities.

Dr Michael Clark:

So that they need to get networked and start to connect with others. One opportunities is through the School for Social Care Research. So we organize a range of things to help with career development. There’s a range of resources on the website, including various reviews, methods reviews, across adult social care general, but often there are applicable to dementia as well. We have a range of webinars that we’ve done. Some on topics directly related to dementia care, but also on methods that could be quite useful.

Dr Michael Clark:

And we have some funding opportunities, so we do have calls for career development awards, which are for up to 50,000 pounds for individuals to say how they would like to ask the school to help them support their career in research. So that could be early career researchers in universities who are asking for support for the next step up. Maybe to do a fellowship application to Alzheimer’s Society or NIHR. Or it could be for some of those practitioners that we’ve mentioned who are maybe looking to develop a research arm to their career and maybe want to take the next step, which could be doing a Masters degree or applying to a PhD.

Dr Michael Clark:

Again, these career development awards are very flexible and will help people in all those kinds of situations generally. But they are competitive so people do need the right support to help them get those awards and I think they can then be the stepping stones to them build a career and move on to those larger grants, such as Research for Social Care and some of the even bigger ones, like program grants in NIHR.

Dr Clarissa Giebel:

So you also answered my next question, Mike, so that’s great. But it’s important to highlight that there are funding opportunities there. But I think also one thing to say that I’ve been a researcher now for over ten years and one thing I think that’s really important to highlight to all those early career researchers there is that we don’t get everything we apply for and we shouldn’t feel let down if we don’t get anything. Or if a paper gets rejected or we don’t get that funding. We just use that what we’ve put in and go further with it somewhere else, so it’s not wasted effort at all. And it happens to all of us.

Dr Michael Clark:

Absolutely right there. It is potentially very disheartening process doing research and people need to build resilience and keep plowing on and recycling ideas and learning. We should also mention the NIHR research design services that are out there to advise colleagues on how to put together their grant applications and maybe even putting them in touch with the right partners to help them on different aspects of their grant application.

Dr Michael Clark:

Again, it’s a very complex landscape at the NIHR and I think the early career researchers would be well advised to spend a bit of time learning how to navigate the NIHR and learning about the different funding opportunities, but also the other infrastructure that’s there. You mentioned the Applied Research Collaboratives, the research design services, NIHR Academy that funds various kinds of fellowship. It’s useful to learn about all of these things to support you, but also to start to map where your career might go, rather than moving from one call to the next call to the next one. Start to think about a program of research that you would use to build your career around.

Dr Clarissa Giebel:

Yeah, absolutely. Really important tips. Thank you, Mike.

Dr Clarissa Giebel:

Last question for Tom on the topic of funding because I’ve just had an e-mail as well about the Alzheimer’s Society having launched funding calls, finally again. So that’s fantastic. Tom, could you just tell us what kinds of research projects you hope to see come through.

Tom Redfearn:

Yeah and please do absolutely submit your bids. As you say, Clarissa, the funding call should be open today, I think it is. And certainly by the time this podcast goes out. I should say it closes in September, so you have a few months to get them in. Our funding calls are open to applicants from researchers right through from PhD studentships through to applications from well-established researchers, in the form of project grants and range from research to improving the care of people with dementia and their carers as well as clinical research through to biomedical research, exploring the intricate details of the disease that… diseases that leads to dementia.

Tom Redfearn:

And I know that my colleagues in the research team are really excited about this and as you intimated, Clarissa, unfortunately, we aren’t able to do many, if any of these funding calls last year due to the impacts the pandemic had had on our funding. But hopefully, you’ll have noticed that the funding call that we’ve put out is very broad and that’s intentional because we want to encourage innovation and not be too restrictive on what we fund. So if you’ve got a really exciting proposition, please do put it forward and I would encourage all the listeners to find out more by going to alzheimers.org.uk/researchgrants, all one word. That’s alzheimers.org.uk/researchgrants, all one word.

Dr Clarissa Giebel:

Great. Thank you very much. So I hope this is giving people a bit of positivity. There are funding calls out there and that’s great. So from the NIHR, Alzheimer’s Society and others.

Dr Clarissa Giebel:

So I think this is all we have time for today. Try to summarize this really interesting podcast now. I hope I do this justice, but please correct me afterwards.

Dr Clarissa Giebel:

So I think a few key points to kind of draw out is first of all, social care and social care research in dementia absolutely vital, particularly because once people do receive the diagnosis, if they do, people really need access to services such as care homes, domiciliary care and other support services in the community. So it’s not really the health care services that provide that support, but it’s the social care setting.

Dr Clarissa Giebel:

COVID-19, unfortunately, has had an absolutely detrimental impact on social care about dementia as we’ve talked about. There’s, unfortunately, really high mortality rates in people with dementia, also faster deterioration and there’s emerging evidence that people seem to enter a care home faster as well. All within the social care field, this falls.

Dr Clarissa Giebel:

As Teresa highlighted as well, the public involvement and integrating non-academics in your research, in your social care research is crucial to get a much broader perspective of what’s important in the area, which is something us researchers wouldn’t be able to do, I think, on our own.

Dr Clarissa Giebel:

But also I think it’s important to highlight that it’s not just about research, but about what we do afterwards. So we’ve done the work, so what? I know that as researchers we’re really busy and sometimes we think, “Oh, that’s done. Off to the next.” But we need to make sure that the work really benefits the people that we’re researching, the populations. And we need to make those findings easily accessible and available and make use of them.

Dr Clarissa Giebel:

And lastly, as Tom was mentioning as well, from the Alzheimer’s Society, researcher in social care is important to support a social care reform, so we need that evidence to show how… what’s failing in the social care system, for example, to hopefully, really make a big change in the landscape.

Dr Clarissa Giebel:

So I hope those are the key points, would you agree? Yeah? Lovely.

Dr Clarissa Giebel:

So thank you all really very much. That was a really interesting discussion. So thank you to our guests, Dr. Michael Clark, Teresa Atkinson and Tom Redfearn. So we have profiles on all of today’s panellists on the website, including details of their Twitter accounts so please take a look and we will also add links to all the resources and funding calls discussed into today’s show. On the website you will also find lots of other content, including my own monthly blogs where I discuss my own research and career tips.

Dr Clarissa Giebel:

And finally, please remember to like and subscribe in whatever app you listening in. Thank you very much.

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