Print This PostThe Minds in Motion Podcast from Dementia Researcher in association with the NIHR Applied Research Collaborations and Alzheimer’s Society, brings together NIHR Dem Comm Research Fellows, to talk about their research and careers.
In this second series, we hear from five of the Dem Comm Fellows each taking a turn as co-host and guest. Alongside the researchers we have the incredible Trevor Salomon, Alzheimer’s Society Volunteer & Chair of the European Dementia Carers Working Group as our permanent co-host and anchor.
In show Trevor is joined by the guest from our previous show Dr Lis Grey from University of Bristol and the NIHR Applied Research Collaboration (ARC) West to interview Dr Katie Breheny.
Katy works in the NIHR ARC West and University of Bristol. Katie is a health economist focused on improving the way we assess and value healthcare interventions for people living with dementia. Her research explores how traditional health economic methods can be adapted to better capture wellbeing and quality of life in dementia care. With a background in psychology, Katie’s work spans health economics, patient-reported outcomes, and methodological research, ensuring that economic evaluations reflect the real-world needs of individuals, carers, and service providers. She is particularly interested in making assessments more inclusive and meaningful, while also working on innovative projects such as adapting wellbeing questionnaires and developing personalised digital tools to support dementia care.
Dem Comm is a 2 year programme funded by the National Institute of Health and Care Research and the Alzheimer's Society. It supports a new generation of dementia research leaders, bringing together researchers from different multidisciplinary backgrounds to encourage cross-cutting and community-orientated dementia research projects that can address key gaps in the evidence around dementia care and support, delivering transformative translational research.
Voice Over:
The Minds in Motion podcast from Dementia Researcher in association with the NIHR Applied Research Collaborations and the Alzheimer's Society highlighting exciting new research and the work of the DEM-COMM Fellows.
Dr Lis Grey:
Hello and welcome back to the Minds in Motion podcast from Dementia Researcher. Today we meet Dr. Katie Breheny, a health economist and DEM-COMM fellow from the University of Bristol and NIHR QuEST. Health Economics plays a crucial role in ensuring that healthcare resources are used effectively, especially as healthcare demands grow. When assessing the value of new treatments or interventions, health economists look not only at costs, but also at their impact on people's quality of life and wellbeing. For people living with dementia, traditional measurement tools can often be too complex, limiting the accuracy of data on how treatments affect their lives. Get it right and understanding the cost and value of an intervention could make a big difference to their potential adoption into mainstream health. Get it wrong and you may deliver services that people don't need or potentially fail to pick up on something that could transform lives. Hello, I'm Dr. Lis Grey, and it's a pleasure to be sitting alongside my brilliant co-host, Trevor Salomon, to explore this important topic with our brilliant guest, Katie Breheny.
Trevor Salomon:
In the Minds in Motion podcasts, we meet NIHR Applied Research Collaborations and Alzheimer's Society DEM-COMM Fellows who showcase their important contributions and the outstanding work being delivered through this unique fellowship up and down the country. This is episode three of the latest season, and I'm Trevor Salomon. I'm an Alzheimer's Society campaigner and chair of the European Dementia Carers Working Group. I became involved in this work when my wife was diagnosed with early onset Alzheimer's disease in 2013 when she was just 57. Since then, my mission has been to raise awareness and support much needed research into better understanding the disease, improving diagnosis rates, and pushing for better care and support. I think that's more than enough about me. Let's meet our guest. Hi, Katie. Could I start by asking you to please introduce yourself?
Dr Katie Breheny:
Thank you for the introduction. I'm Katie Breheny. I'm an NIHR ARC Dementia fellow and I'm a health economist at the University of Bristol. I'm a psychologist by background but found my way to health economics through a meandering career path.
Trevor Salomon:
Can you tell us about your current research?
Dr Katie Breheny:
My current research involves adapting the ICECAP wellbeing questionnaires for people living with dementia. Though the ICECAP-O has been designed to measure capability wellbeing in older adults aged over 65, previous research has found that people living with dementia have difficulty completing the questionnaires. My research aims to address the challenges so people's voice can be heard longer in research. Adapting research is a very iterative process among cycles of qualitative research like stakeholder engagement and PPI. Also, I'm trying to personalise a dementia app for people with dementia and their carers as part of another project I work on.
Trevor Salomon:
Just to level set everybody, can you explain the role of health economics in dementia research and why it's so important in evaluating healthcare initiatives?
Dr Katie Breheny:
The NIHR and Social Care have very limited financial resources, so we need to spend these wisely. Health economics is quite a broad discipline, though a common misconception is that we just work out the cost-effectiveness of a drug, but it's a lot more than that. I do those analysis, but also, I look at how we measure the value in value for money. In this case, I look at wellbeing and how we can apply traditional methods perhaps used to evaluate drugs in hospitals to social care interventions and dementia.
Dr Lis Grey:
How do you approach measuring complex concepts like quality of life and wellbeing in a way that's meaningful both to individuals with dementia and policymakers?
Dr Katie Breheny:
This is quite tricky because if we are comparing interventions for different conditions, it's helpful to use the same measures. These would be called generic measures generally, and these measures are usually developed in collaboration with patients and the public. Hopefully, these measures do reflect what's important to them, and we can adapt them to make them easier to complete for people living with dementia, but we also do need to make them generic so we can compare things across interventions.
Trevor Salomon:
Maybe off at a tangent now, back to the app you were talking about a bit earlier, because it may be if you describe that to us it will help with some of the subsequent questions we've got planned for you.
Dr Katie Breheny:
This is funded by the Alzheimer's Society and the NIHR, and we're hoping to personalise care for people living with dementia at home. We'll match people's preferences, so what they think is important for their care with what we can provide actually in services, and then what also staff working in formal care can provide as well, and so we're doing this through a very robust process. We're doing a literature review, we're going to do workshops with stakeholders, we're going to do focus groups to develop this platform or app. But we'll see where we end up with at end, which will be a prototype, which then we can apply for more funding to test it.
Trevor Salomon:
Are carers and people living with dementia involved in the prototyping activity?
Dr Katie Breheny:
Yes. They are. They will be involved in the focus groups and PPI through the whole journey.
Trevor Salomon:
Is that app intended for carers and people living with dementia?
Dr Katie Breheny:
And service providers as well.
Trevor Salomon:
Right. Okay. As this evolves, and I know I'm not involved in the project, hence my questions, I would love to be kept informed of how this progresses.
Dr Katie Breheny:
Brilliant. You are very welcome.
Trevor Salomon:
Did I just inadvertently volunteer myself for something there?
Dr Katie Breheny:
Yes.
Trevor Salomon:
Damn. No, seriously, I've not heard of anything like this before. It's obviously unique, otherwise you wouldn't be doing it. What's your timescales for getting to the point where it might be implementable?
Dr Katie Breheny:
We're hoping to have a prototype by March next year, potentially. That's when this project will finish. Then actually something in practise, I'm not sure, depends on further funding.
Trevor Salomon:
It's really, in timescales, pretty much around the corner, isn't it?
Dr Lis Grey:
I think that should be March 2026.
Dr Katie Breheny:
Yes. Sorry.
Trevor Salomon:
Okay. It's not quite around the corner then.
Dr Katie Breheny:
No.
Trevor Salomon:
It's good that we clarified that. We may have a listening and viewing audience that would suddenly jump on this thinking it was three or four months away. Okay. Thank you for that.
Dr Lis Grey:
In your experience, how important is it to have economic evaluation published alongside the research that proves an intervention is valuable? We often don't see costs published in intervention analysis papers.
Dr Katie Breheny:
This is a topic which comes up quite a lot. Economic evaluation is very complex, and so it's difficult to fit all the information we need in a single paper within the word count. Some journals want you to have the economic evaluation published in a sister paper perhaps in the same journal. Also, there's reporting checklists for health economic evaluations like you would perhaps for a systematic review. There's a lot of information that you do have to include, which is difficult to fit in.
Sometimes a very tricky issue is the results of the economic evaluation don't necessarily match the results of the clinical effectiveness. It might be effective but not cost-effective, and that creates some tension perhaps about what the story of the paper is. Another issue as well is a whole lot of work goes into an economic evaluation and getting first off, the papers is very important for researchers. Do we give enough credit to the health economist if they've done a lot of work? Also publishing in clinical journals perhaps might get more traction with policymakers, it's possible they do read those journals compared to a specific very niche health economics one. There's a lot of things to consider here.
Dr Lis Grey:
Yeah, but it sounds like it would be really important to definitely link and cite each paper in the other one, if that makes sense, if as you say, an intervention looks to be effective but really not cost-effective or vice versa.
Dr Katie Breheny:
Yes. Definitely.
Trevor Salomon:
This next question is very pertinent to me and would have been to my wife as well. What challenges do people with dementia face when completing traditional quality of life questionnaires? How are you making these questionnaires easier to complete? What are some specific changes or innovations you're exploring?
Dr Katie Breheny:
Specific issues include composite questions. These are two questions in one. You might ask about a person's love and friendship. They might be separate constructs for people living with dementia, so they might not be able to give a response or want to leave it blank, might want to explain their answer. Sometimes the layout is very cluttered, unintuitive, can be overwhelming. We want to address that perhaps. This is perhaps a changing area at the moment where you go online a lot of questionnaires, so the formatting can shift around quite a lot compared to a paper questionnaire. But then there's also the issue of digital exclusion and familiarity with completing questionnaires online.
Trevor Salomon:
Sorry. Can you just clarify that digital exclusion, what does that mean, Katie?
Dr Katie Breheny:
Perhaps the elderly don't necessarily have access to devices which would allow them to complete, so we need to be consistent across paper and online. Other issues are ambiguous terms, so sometimes a term might not be clear to everyone, and we might have to explain it.
Trevor Salomon:
Based on my own experience of hearing other people talk about questionnaires. They prefer to be asked the question, so a verbal approach to questionnaires rather than having the written questionnaire because at least in a verbal approach, you can deal with ambiguities there and then. If you don't do it that way and rely on the paper-based or screen-based responses, people determine their own resolutions to ambiguity, and you may not be getting the right responses. My wife would have struggled with any questionnaire, even relatively post-diagnosis. She couldn't process questions to answer them. Unless I was on hand, she simply couldn't deal with just any questions at all, never mind those related to surveys. I think it's quite difficult for people living with dementia. I'm being very generalistic in this. Obviously, some people's dementias are very slow burners, and they can cope with almost anything, but the majority of people that I've interacted with do struggle with questionnaires.
Dr Katie Breheny:
That's really important, and issues there with resources in studies and having someone there to help someone complete a questionnaire is perhaps you can't necessarily deploy your researcher to every situation. It's difficult with consistency and perhaps a formal carer would give different help or different interpretation to an informal carer. Yeah. There's a lot of issues that are going on, but we want to get the right answer, and we want to make it easier for people living with dementia to have their voices heard in research.
Trevor Salomon:
In that context to make it easier, shorter questionnaires are probably the sort of thing that people are looking for. Funnily enough, I was in a meeting earlier this week about studies and questionnaires working with a PhD student who'd produced a really good questionnaire, but it had 50 questions and everybody said, "There's just no way anyone is going to stay the course for that. It's far too many. You need to make it much more concise, and then you'll get a response because people will drop out," I guess.
Dr Katie Breheny:
Yeah. Put your most important questions first if you're going to do that.
Trevor Salomon:
Yes. Absolutely right. There's a learning curve I think about questionnaires. I think they're not easy to construct, but you construct them because you want a response, not to put people off.
Dr Katie Breheny:
Yeah. That is a challenge. Even a minor change to a questionnaire could affect the results you get, and then you have to do a whole load of research to check the psychometric properties are still the same.
Trevor Salomon:
Yeah. Absolutely.
Dr Lis Grey:
Would any researchers delivering the questionnaire orally, would they have to go through training to make sure they're doing it consistently or is that not done?
Dr Katie Breheny:
I think it depends on the study. Quite often if someone is going to help someone complete a questionnaire, there'll be instructions at the start. It'll be called a proxy completion or not necessarily proxy, but there will be instructions there to help people complete it and perhaps prompts or particular questions that they know might be questioned and how to help people understand it. But it wouldn't be the case all the time.
Dr Lis Grey:
Thank you. How do health economists account for the long-term progressive nature of dementia in their evaluations, especially when outcomes vary greatly among individuals?
Dr Katie Breheny:
In studies we'd aim for large samples to hopefully even out that noise and the extreme responses. It's not necessarily easy to do these big studies and they're expensive, but that would be the ideal. But long-term modelling is an area which I'm not an expert in. People are very skilled in modelling, but it's difficult because an economic model is only as good as the data you put into it. If we don't have that good data, it is very challenging to estimate in the future whether something will be cost-effective or not. But this is a big challenge about, yes, getting the data and setting up these studies. There are ones, but so for example, ALSPAC is too early at the moment, the Avon Longitudinal Study, but in the future perhaps that will help us. But I think there's like the UK Biobank, for example. There are other resources that people can use to try and estimate these long-term impacts.
Trevor Salomon:
Are there particular economic outcomes or metrics you feel should be prioritised in dementia research that currently aren't utilised, Katie?
Dr Katie Breheny:
Something is the impact on families. We might be quite narrow focused just on the person living with dementia, but it has a huge impact on families. Capturing that and the economic impacts, costs, and quality of life outcomes I think is important. How we fit that into the framework that we use, it's quite difficult because it's very set methods. We tend to follow guidelines. But there has been precedent, for example, meningitis vaccines, some work in Birmingham has done to try and include family impacts in those. There is the potential to do this, and young onset dementia as well. These people might have been working, they might still be at work and capturing the economic evaluation in this situation.
Trevor Salomon:
I think in the context of young onset as well; somebody may have to give up work to become the carer. Then if you fast-forward to the point where people as carers can no longer manage the best outcome for those living with dementia and a care home is then the right solution, that also has a devastating economic impact on family life too.
Dr Katie Breheny:
It's a question we're thinking about. Lots of methods research there.
Dr Lis Grey:
Knowing that there are fewer funding opportunities for methodological research, what message would you like to send to funding bodies? Are there particular areas of methodology that you think need more support?
Dr Katie Breheny:
Broaden the funding opportunities. For example, there's been RfPB calls from the NIHR, National Institute for Health and Care Excellence and RfPB is the research for patient benefit. They did specific calls for methodologists, and this was ideal for us, but more funding calls like this. It's good that it's been recognised, but yes, just I think there's also studies within studies which is also coming in. A big clinical trial might have a little pot of money for us to do methodological research alongside it. But just making these opportunities just more available. Just recognising the importance.
Trevor Salomon:
In your view, what are the biggest challenges and opportunities in making health and wellbeing assessments that much more inclusive then?
Dr Katie Breheny:
I think the biggest challenge is changing things just in the impact on psychometrics, so the properties of a questionnaire. If we do want to make it inclusive, then if we change too much, then we have to go back to the drawing board with the evidence and then finding the funding to do this is very difficult. From a psychologist, psychometrician aspect, which would be my biggest challenge. Yes. Also, understanding when we should move from individual completion to proxy completion, so someone completing on behalf of someone else. When should we do this is a big question. It'll be so specific to individuals, and it could change day to day.
Trevor Salomon:
It absolutely could change day to day. I think in the case of most people living with dementia, you'd find that inclusivity meant the carers would be taking over anyway on their behalf because they become the voice of the person living with the disease.
Dr Katie Breheny:
An interesting question I'm looking at in my research is proxy perspectives, which is quite hard to explain, but should the carer be answering what they think the person is experiencing or how they rate the person's wellbeing from their perspective, which is really interesting.
Trevor Salomon:
It is because no one really knows how the person living with dementia is feeling or would answer anyway. It's based on knowing as much as you can know about that individual and responding with best intent. I don't think there's any other way of looking at it.
Dr Lis Grey:
Before we move on to talk a little more about you rather than the research, we'd love to know more about any other projects you're working on.
Dr Katie Breheny:
Yes. I mentioned already the project I'm working with the other dementia fellows, and I work on a variety of different studies because health economists are very in demand. I have quite a broad range of topics. I'm currently working on a project which is looking at improving uptake of vaccines. Another aspect of my work is administrating the ICECAP questionnaires. I register studies, which gives me really good insight into who else is using the ICECAP wellbeing questionnaires, potential collaborators, what's going on, potential methods of research and how we can improve the use of these questionnaires around the world. I even manage the translations, and translations is really important these days with inclusivity, and we want as many people as possible to be able to complete questionnaires no matter what ethnicity, language they speak even in the UK. This is really important. Yes. I do quite a bit of teaching as well, but lots of different research studies. Health economists are very much in demand, which is very good.
Trevor Salomon:
Translations, I was thinking about in a multicultural society like the UK translations are an absolute imperative, aren't they?
Dr Katie Breheny:
Yeah.
Trevor Salomon:
For reaching to the minority communities in particular.
Dr Katie Breheny:
Definitely. There's also the question of being culturally appropriate. Do we need to change questions? Is a particular question quite sensitive to a [inaudible 00:20:50] culture? Should we reword it or does the question even resonate with this population?
Trevor Salomon:
That's a really good point because if you go all the way back to diagnosis and the Mini-Mental State Examination, a lot of those questions are so inappropriate for people from non-UK backgrounds as well, or they're culturally not relevant questions. There's a lot of debate right now about the MMSE test in itself, which you may be aware of. Okie dokie. In this last part of the podcast, we've some speedy career questions for you, Katie, which you hopefully will appreciate because I know you're struggling with your voice. We'd like to think that these will help others thinking about working in this field. We'd like you to share some of what you've learned from across your career and through the DEM-COMM programme. If you're ready. Remember short answers only, please. What inspired you to pursue a career in health economics and what led you specifically to focus on dementia care?
Dr Katie Breheny:
My first job was patient-reported outcomes. I do my research and then I hand it off to health economists. This really interested me in the health economics side, so I decided to blend this and do masters, which was funded by NIHR. My current research in dementia blends the health economics and the patient-reported outcomes. This is really interesting and an area I really love pursuing.
Dr Lis Grey:
What unique skills or qualities do you think are essential for someone working in health economics within dementia care?
Dr Katie Breheny:
I think you need a broad outlook and not just think about the impact on the individuals and perhaps be inquisitive. This is a really interesting area of research, and the normal methods don't necessarily apply, so just being able to think more broadly and what can we do to improve the methods we use?
Trevor Salomon:
Next one. How has your work evolved over time and have there been any pivotal experiences or challenges that shaped your approach?
Dr Katie Breheny:
I've had a rather meandering career, but one thread is the outcomes research aspect. I spent a long time focusing on applying methods to public health, but now this dementia fellowship has allowed me to focus on dementia, which is a really pivotal aspect of my career now.
Trevor Salomon:
Can I plagiarise that expression, "meandering career"? I've not heard that before. I like that.
Dr Katie Breheny:
I've been on a journey.
Trevor Salomon:
No. I like meandering better. That's great.
Dr Lis Grey:
Okay. Next one. What advice would you give to aspiring health economists or researchers interested in entering the field of dementia care?
Dr Katie Breheny:
I'd advise you to first do MSc, but don't be put off by thinking I didn't do an undergraduate degree in economics because we come from huge different backgrounds, very broad and yes, we welcome everyone. There's lots of opportunities for mixed methods research as well, so it's not just statistics.
Trevor Salomon:
If we look ahead, what are some emerging trends or challenges in health economics for dementia care that you're particularly excited or concerned about?
Dr Katie Breheny:
I think there's a lot of excitement about the new disease modifying treatments, but there's a huge amount of work to be done there, I think still. The BBC did a very balanced article about this, and I think people should read that. I'd recommend it because it presents all the pros, cons, and issues very well. This is a big challenge and a great opportunity as well.
Trevor Salomon:
Thank you. The final question, which is just for fun. If you could magically acquire any skill or superpower to help you with your research, what would it be and how would you use it?
Dr Katie Breheny:
I'd condense the time that research setup takes. Speeding up the application process and all the bits we have to do before, so like ethics, so we can just crack on with our important applied research as soon as possible.
Trevor Salomon:
I think in most fields of work, regardless of whether you're in research or anything else, speeding up processes would be something that everybody would love to be able to enjoy.
Dr Lis Grey:
I'm afraid that's all we've got time for today. If you just can't get enough of this topic, visit the Dementia Researcher website where you'll find a full transcript and biographies on all of us. I'd like to thank our incredible guest, Dr. Katie Breheny. I'm Lis Grey.
Trevor Salomon:
And I'm Trevor Salomon. You've been listening to the Dementia Researcher podcast. Bye-bye.
Dr Lis Grey:
Bye.
Voice Over:
You've been listening to the Minds in Motion podcast from Dementia Researcher in association with the NIHR Applied Research Collaborations and the Alzheimer's Society. To learn them more about the DEM-COMM programme and to get all the support you need, visit dementiaresearcher.nihr.ac.uk, and don't forget to like and subscribe.
If you would like to share your own experiences or discuss your research in a blog or on a podcast, drop us a line to dementiaresearcher@ucl.ac.uk
Did you know... you can find our podcast in your favourite podcast app on mobile devices, and our narrated blogs are also available as a podcast.
The views and opinions expressed by the host and guests in this podcast represent those of the guests and do not necessarily reflect those of UCL or Dementia Researcher
Dementia Researcher
Alzheimer's Society
