Podcast – Improving Dementia Care Journeys

Hosted by Dr Annalise Rahman-Filipiak

Reading Time: 26 minutes

This episode of the Dementia Researcher Podcast is hosted by Dr Annalise Rahman-Filipiak and features Diane Ty and Rajiv Ahuja, authors of a pivotal report from the Milken Institute – Guiding the Care Journey.

In this show we discuss the report, its importance an findings – addressing critical challenges and presenting innovative solutions for dementia care in the United States, with a particular focus on the role of the care navigators.

While the report primarily addresses the U.S. context, its recommendations are deemed relevant globally, and the discussion aims to shed light on findings related to improving care for people living with dementia and their families, wherever you are.

About the guests:

Diane Ty is the Senior Director of the Milken Institute Future of Aging overseeing its work at the intersection of healthy longevity and financial security. She leads its Alliance to Improve Dementia Care and other multisector programmatic efforts that promote policy, practice, and systems change in a life course approach to aging.

Rajiv Ahuja is the Associate Director of the Milken Institute Future Ageing. His work focuses on aging policies and programs that support healthy longevity. Rajiv spearheads efforts to incentivize policy, business, and technology-based approaches that promote brain health, combat stigma, reduce costs, and bridge health and economic disparities.

Dr Annalise Rahman-Filipiak is an Assistant Professor, Clinical Neuropsychologist at University of Michigan. Annalise broadly studies racial-ethnic disparities in dementia diagnosis and treatment, as well as non-pharmacologic treatments for Alzheimer’s disease and related dementias. Her recent work has focused on disclosure of imaging and fluid-based biomarkers to diverse audiences, including cognitively healthy older adults and those with impairment

Click here to read a full transcript of this podcast

Voice Over:

The Dementia Researcher Podcast, talking careers, research, conference highlights, and so much more.

Dr Annalise Rahman-Filipiak:

Welcome to the Dementia Researcher Podcast. I’m Dr. Annalise Rahman-Filipiak. I’m a neuropsychologist and assistant professor at the Research Programme on Cognition and Neuromodulation Based Interventions here at the University of Michigan. And today, I have the pleasure of hosting Diane Ty and Rajiv Ahuja, authors of a pivotal report from the Milken Institute.

The report, titled Guiding the Care Journey, was published a few months ago, and it addresses the critical challenges and presents innovative solutions for dementia care in the US, with a particular focus on the role of the care navigator.

Of course, we know that many of our listeners are in the UK and other parts of the world, but the important recommendations in the report are relevant to all of us as we face similar healthcare system challenges. Now, most countries are expected to see a rise in dementia cases in the coming years. In fact, the World Health Organisation says that the 55 million cases that were found in 2019 will increase to 139 million by 2050.

So, our discussion today will shed light on what our guests have uncovered about how we can improve care for people living with dementia and their families, and how people that deliver that care are important. So, let’s start by meeting our guests. Hi, Diane, and hello, Raj.

Rajiv Ahuja:

Hi, Annalise.

Dr Annalise Rahman-Filipiak:

How you both doing?

Diane Ty:

We’re good, thank you.

Dr Annalise Rahman-Filipiak:

Diane, why don’t you start by telling us a little bit about yourself?

Diane Ty:

Okay. So, I lead the Milken Institute Centre for the Future of Ageing, where we work at the intersection of healthy longevity and financial security. We do that through research, convening, multi-sector partnerships and the elevation of high-impact policies and practices. I’ve been here for almost three years. And before that, I was a senior partner at Georgetown University School of Business, working in a group called Business for Impact.

I spent time at ARP, ARP services, the for-profit subsidiary of ARP, Save the Children, and then I spent about a decade at American Express. So, I love working across the public, private, nonprofit sectors, and that’s what this job is.

Dr Annalise Rahman-Filipiak:

Fantastic. Thanks so much for being here. Raj, how about you?

Rajiv Ahuja:

Yeah. Thanks, Annalise. I appreciate this opportunity. I work closely with Diane in our Centre for the Future of Ageing here at the Milken Institute. And work with Diane to manage our Alliance to Improve Dementia Care, which is a broad-based coalition of over 130 dementia-focused organisations that are really looking to improve how healthcare, long-term care services are delivered to people at risk for dementia and living dementia, as one of those families.

I’ve been at the Milken Institute for about four and a half years and come from a background in healthcare policy, doing consulting for pharmaceutical companies, for health plans, military health, all with the goal of trying to increase access to care services and products everyone. So, I’m happy to be here to talk about this topic. Appreciate it.

Dr Annalise Rahman-Filipiak:

Well, thanks for being here, both of you, and sharing your vast expertise with us. Diane, let’s start with an easy question. Could you give us a high level intro about this report, how it came about, and maybe why you think this topic is so important?

Diane Ty:

Sure. So, as Raj mentioned, we have this Alliance to Improve Dementia Care, where we’re very multisector, multi-stakeholder members, and our steering committee in particular, we consult with them from time to time. We meet bimonthly, and we were really asking them what is the area that we as a cross-collaborative group should be focused on? And the topic of workforce, a dementia capable workforce came up. Raj was instrumental in getting our alliance off the ground.

I joined in December 2020, so we’ve been around for about three years, and our steering committee just represents a whole cross sector. So, we all agreed that workforce shortages is a critical area of concern. And so we set out to look at what does that mean? We had a working group, we do our round table convening. It’s a private session, Chatham House Rules. We come up with consensus-based recommendations, it’s peer reviewed and that’s how we release the report.

But this topic of dementia care navigator and that role was front and center as we went through our process, and then this really came to light as a key area game-changing role for dementia care.

Dr Annalise Rahman-Filipiak:

Awesome. One of the things I thought that was really unique about your dementia care alliance and maybe the steering committee is the input that you get too from people living with dementia and their families.

Diane Ty:

Absolutely. So, for each of our private roundtables, we start out with someone either living with dementia or a caregiver caring for loved one with dementia, really just giving… Sharing the experience, and it really then just sets the tone for why we’re all here. What I’m amazed at is the number of people, members, including myself, who’ve had a personal experience caring for a loved one with dementia. I lost my dad to Alzheimer’s 11 years ago, and it still feels really raw after all this time, and this is why we’re so motivated to improve that care journey for the people living with dementia, as well as their family caregivers.

Dr Annalise Rahman-Filipiak:

Yeah, it’s very clear that you both bring that passion, that personal passion to this work. Raj, the report highlights a significant challenge in meeting these growing demands for dementia care, especially given this expected doubling of individuals living with Alzheimer’s disease and related dementia by 2040. What are some key strategies to address the shortage in what you call the dementia capable workforce, the medical providers with specialised training in dementia care?

Rajiv Ahuja:

Thanks, Annalise. I think you’re absolutely. Right here in the US, our healthcare system, our long-term care system is really facing significant challenges right now in meeting this growing demand for dementia care. I think especially the statistic that you cited in terms of doubling of the population is really going to impact how services are delivered in cities, in rural populations, in underserved populations, low income populations all are going to be impacted by the shortage of a workforce.

And so I think when you think of this growing population and the capacity constraints that come with it, the workforce is really going to be at the centre of efforts to improve dementia care. And we know that moving forward, there’s going to be a shortage of primary care physicians, geriatricians, specialists, and direct skilled care workers. I think there’s statistics that show over the next couple of decades, there’s going to need to be a quadrupling of the number of geriatricians in order to meet this demand.

And so I think it requires a little bit more foresight in terms of filling that need for this growing population. What we really need is a comprehensive dementia capable and culturally sensitive workforce that’s highly coordinated, that’s trained specifically in dementia care, and can recognise symptoms and make the necessary community referrals and are familiar with the available tools and resources that are out there. We know that this dementia capable workforce is going to need to represent a broad range of interests.

So, how do we go about doing that? I don’t think it’s going to be realistic to train as many primary care physicians and geriatricians that we need. So, how do we go about addressing this? We think at its very core, we really need to start expanding the definition of what that workforce is. We need to include everyone that interacts with high risk individuals and families living with dementia, that’s either a current healthcare professional, a future healthcare professional, including nurses, community health workers, and long-term care workers.

And I think even family members, family caregivers are all going to need to be part of this expanded definition of a workforce. And so in our report, we outline a number of strategies also to increase the dementia capable workforce, and we really focus a lot on efforts to increase recruiting, increase training, and increase retention of the dementia capable workforce. And I would just kind of note that with the growing shortage of healthcare professionals, there are some bright spots there also. We know that certain professions within the healthcare industry are growing.

Nurse practitioners in particular is a growing field. Physician associates are a growing field, social workers are a growing field, and so these are all ripe associations to recruit from, to train and really bring into this dementia conversation in terms of workforce.

Dr Annalise Rahman-Filipiak:

Fantastic. I think that’s a great lead into my next question. It may be useful for our listeners, given the broad listenership of the podcast, to hear a little more about this role as it might not be quite so common outside the US. So, Diane, the report defines care navigators or care navigation as individualised assistance to patients and caregivers to facilitate access to quality health and psychosocial care. Maybe you could tell us a bit more about the role of care navigators, what settings they might work in, what are some personal or professional qualifications of the care navigator?

Diane Ty:

Sure. Thanks, Annalise. So, absolutely this care navigation role, I want to start by just saying it’s a role that’s actually common in cancer care, diabetes care.

And what we did is we had a prior report to this one called Scaling Comprehensive Dementia Care Models. And in that, we focused on the eight core elements that define a comprehensive dementia care model, of which there are six evidence-based ones. We talk about them in not only the Scaling Comprehensive Dementia Care report, but we also referenced them in this new report on guiding the care journey.

So, they include the eight core elements, include things like caregiver support, medication management, care coordination, ongoing care planning, and we looked at the different models where some are telephonic based or online based. Some are community or home-based, and some are clinically based. You can just see that range, and I’ll mention the sixth.

Most of them focus within an academic setting. So, there’s a UCLA dementia care programme, University of California, San Francisco Care Ecosystem, which is the telephone based one, Emory University’s integrated memory care model, Benjamin Rose Institute, and then the Eskenazi Health one at Indiana University. And then mine, Maximising depends at home, that comes out of Johns Hopkins University.

These are all awesome models, but what we looked at is these eight core elements, while necessary, we don’t think they’re all created equal.

So, we kind of took a step back and said, what among these eight could be actually game changing, if we could get this one role focused on? So it was that care coordination role. So, someone who’s actually helping the person living with dementia and the family caregiver, that care DIA that we refer to, navigate our complex health system, our healthcare system and the social care system, all the types of social care services that are outside the medical setting, delivered mostly by community-based organisations.

So transportation, meals, caregiver training, support, respite care, all of these are really critical parts of the dementia care model. And so we did these key opinion leader interviews. We had a round table. All of this started bubbling up. We can define this model, and you’ll see a chart in our report that organises advice setting. One of the things that’s a bit confusing that we acknowledge too in the report is the name of this role, the dimetric specialist, which is used in Wisconsin State to reference non-licenced care or paraprofessionals, that dimetric care specialist is also used in the clinical care model offered by UCLA, care coordinator.

So, we wanted to acknowledge that even that, depending on the care models, can be confusing, dimetric care specialist, dimetric care coordinator, on and on.

But essentially, the role is to be that sort of guide all along the way, knowing when to escalate and elevate the care, when to bring the person if they’re evolving or progressing in their dementia care journey. What we might need to do. Is there a medication management? And bringing in the right intervention at that time and being part of an interprofessional care team. So, really core to that interprofessional care team, care navigator and caregiver, as well as the clinical folks. So, I hope that answered your question.

Dr Annalise Rahman-Filipiak:

I think so, yeah. That’s fantastic information.

Rajiv Ahuja:

And Annalise, can I just jump in right there? To kind of piggyback off of what Diane said, this position is a really versatile position, and I think we talk so much about the unique journey of families that live with dementia. It’s a progressive disease that requires different interventions at different stages. And so I think the care models that Diane mentioned, some are more on the medical side of care for folks with more advanced needs, that require more of medication management, that require more therapeutics.

But there’s a whole group of individuals at early stages that really need access to education, access to appointment facilitation among the fragmented specialists that they have to see. And so I think this care navigator is very versatile in terms of being able to provide those services along that spectrum of the disease journey that a lot of families have trouble navigating. So, I just wanted to throw that there too.

Diane Ty:

And just to piggyback on what Raj said, we look at a population health approach. If you think about a care pyramid where the folks at the bottom, as Raj mentioned, maybe in that early stage if they’re diagnosed, they might just need more of that care and handholding and navigation all the way to the top of the pyramid where you have more of the moderate to advanced stage of the disease where you may have behavioural issues and need for therapeutics and much more care and so delivered at the higher level of your licenced care professionals, like your nurse practitioners, your geriatricians. So, yeah, it’s a very versatile role.

Dr Annalise Rahman-Filipiak:

Yeah, I really think that leveraging paraprofessionals is just an amazing part of this set of recommendations, in part because in my experience, I think a lot of our paraprofessionals have a great knowledge of the community, often have the trust of the community. And particularly when we’re talking about marginalised communities, individuals who may have less access to or trust in the healthcare system, that could be a massive strength.

Diane Ty:

We are actually writing an update to one of the other reports we did, which was Building the Workforce to Improve Early Detection and Diagnosis of Dementia. And since then, that came out in May of 2021, and we’ve seen such a sea change going on with what’s going on with this dementia space. And we did a lit review, and what it’s really pointing to is community health workers. To your point, they’re from the community, they’re trusted, they’re culturally competent, linguistically capable in many cases, and we see such a disproportionate risk of people with dementia in terms of Blacks, two times more likely, Hispanics, one and a half times more likely.

We don’t know offhand the dementia risks for AAPIs, but Raj and I actually co-authored an article to try to shine a light on the fact that one size does not fit all. So, as we lump AAPIs together in one group, there’s many different ethnic backgrounds, socioeconomic backgrounds, ethnic backgrounds within the AAPI community, and we strongly believe that there’s disproportionate risk for certain subpopulations of the AAPI.

So, absolutely those trusted community workers.

Dr Annalise Rahman-Filipiak:

And for listeners outside the US, I also want to mention that Diane, you just mentioned that we see that, for instance, Black and African-American patients are twice as likely to have Alzheimer’s disease, but tend to be diagnosed much later and much less frequently. We also know that their care partners tend to have a disproportionate burden of caregiving, so they’re caregiving full-time, they’re caregiving at later stages of the disease. So, I’d love to talk more about how the care navigator might address that specific disparity. Raj, maybe you could tell us a bit more about that.

Rajiv Ahuja:

Sure. I think it’s so critical to highlight how complex dementia care is in general. There’s so many specialists that families have to see. The issue of access to care is front and centre for everyone living with dementia. But I think there’s been longstanding disparities that things like COVID had highlighted that really impact families in underserved communities that are living with dementia. And so when we talk about underserved communities, we talk about racial and ethnic disparities of which there are major discrepancies in access to care.

We talk about rural versus urban access to care. There’s a tremendous issue with just being able to see primary care physicians in rural communities. And we also talk about low socioeconomic communities in terms of the cost of care to families. They spend more out of pocket than other communities. And so I think one of the things that Care Navigation does is it really highlights the need for a comprehensive approach to dementia care and places the care navigator at the centre of that approach.

So families often have a hard time engaging with their providers. They have a hard time navigating the multiple requirements that are needed in terms of appointments. They have a hard time applying for benefits. And so care Navigators can really be that point of contact for families to help with things like applying for benefits that they need, for making culturally appropriate referrals into the community. We know that a lot of dementia care takes place outside of formal healthcare systems and really takes place in the community.

And the access to those community supports was really needed for individuals in these dementia communities. And care navigators are trained to understand what is available in terms of nutrition access, in terms of some of the physical interventions that are applicable, to education, to resources for understanding the modifiable risk factors that are needed, and really making that a more culturally appropriate firm.

And so I think those care navigators, like the community health workers that Diane had mentioned, represent those families. We, in our report, make recommendations to recruit from underserved communities so that those care navigators speak the language so that’s not a barrier. They can engage compassionately with families and connect them to providers as needed. They can be the voice of caregivers, because a lot of times, caregivers in underrepresented communities experience a higher burden to their health.

They experience a higher burden in terms of out-of-pocket expenses. And so I think that care navigator as kind of the liaison among all the different fragmented systems in dementia care really provide more of that access and with the care.

Dr Annalise Rahman-Filipiak:

Fantastic. Thanks for sharing that. So, Diane, your report makes six key recommendations, with the first theme focusing on developing a framework for care navigation on dementia care teams. Can you discuss the importance of these recommendations and how they may be effectively implemented?

Diane Ty:

Sure. So, yeah, the first theme was around really looking at the dementia care navigator role in the various care settings, which I’ve already mentioned, the telephone or online, home and community base and clinical setting. We do this chart that looks at the licencing and in-licencing, emphasising no matter what that area or level of professional or paraprofessional, they need dementia specific training. And then we have our second recommendation was around, and Raj already mentioned this, recruitment efforts to really bolster the dementia trained workforce.

So, we looked at the shortages of both primary care physicians and specialists. And when we refer to specialists, there are really four types. There’s the neurologist, the geriatric psychiatrists, geriatricians and neuropsychologists, that’s defined by the Alzheimer’s Association. We’re going to have a shortage of anywhere from 21 to 55,000 primary care physicians by 2032, even more so with geriatricians, just at a time when our population is of people over 65 increasing and with age being the greatest risk factor for dementia.

I mean, we really have, and then this obviously echoed with our steering committee with the alliance, a real crisis on our hands. And so Raj already mentioned, nurse practitioners, physicians, associates, social workers. These are actually parts of our healthcare workforce that are actually growing. And so emphasising the need to recruit, train, and have them part of these interprofessional care teams is really critical.

And then I think the third recommendation or our theme with the need for training curriculum, again, all up and down the chain from paraprofessionals to the highest level of professionals who are licenced. And we provide some recommendations for different programmes that have been developed and supported, whether we provided online, video, in-person, and just tried to show the range.

One of the things that I took away from our expert round table was there is that online, there’s the video, but until you actually are face-to-face with the person living dementia, with the family, it’s a journey of one. And so the need to customise, understand, and also, you think about the care navigator on some of the personal characteristics that we talked about and emphasise is someone who’s just by nature, someone who’s empathetic. Empathy, and boy, that’s a characteristic you, it’s hard to train for and you just feel it right?

And so we look, we talk about really looking for that no matter what level you are. And just to see the folks who work in this space that we have the privilege of interacting with through our alliance or through our travels. Incredible passion, incredible empathy, and a shared understanding. Many people have the lived experience of having cared for a loved one. And so I wish I had a care navigator when I went through this, you often hear. And then how can we make this role available to all as we move forward, today and moving forward?

Dr Annalise Rahman-Filipiak:

So much of this really seems to be about translating across the different healthcare systems, across the different settings, across cultural boundaries. There’s a lot of versatility required in this role.

Rajiv Ahuja:

And I think one of the things we hear from folks just in terms of the workforce and that dementia capable workforce is that these are good jobs. These are jobs that allow individuals a high level of patient access. It allows them to see a career path in front of them. It’s just a matter of elevating them within these interprofessional care teams so that their role is made more significant. Their role is kind of placed at the centre of the physicians on one side, the community on the other side, the family on the other side.

And so I think like Diane had mentioned, recruiting initially is really difficult. We talk to trainers all the time who say we go through a period of training, the minute the person we’re training is in front of a family, confronted with some of the hard decisions and then hard interactions that take place, some of them, it’s not for them, they realise.

But it’s the ones with the empathy, it’s the ones with the lived experience that can become a lot of the difficulty and the challenges.

And we need to do more to professionalise the career path so that people stick with it. And we talk about things like leveraging existing certifications for individuals that can receive that recognition for the care that they do, formally recognises a person’s skillset. It elevates them within the dementia care team. So, I think things like that are things that we can do to increase awareness.

Dr Annalise Rahman-Filipiak:

You both mentioned some of the less trainable aspects of a successful care navigator, but you also mentioned some certification programmes or learning resources that already exist. Are there any that you want to highlight here for those that might be listening and thinking about growing in their skills?

Rajiv Ahuja:

Sure. I mean, I can just, there’s one that we really highlighted. It’s a certified dementia practitioner certificate that really targets healthcare professionals, clergy, social workers, anybody that’s interacting with people with cognitive decline. It provides them with a training and certification to just elevate their role again.

There’s other ones that we highlight in our report from Care Academy, Healthcare Interactive, that is starting to become requirements at the state level for anybody that’s going into the home to provide care for individuals with dementia. And there’s certain amount of continuing education requirements and that they’re familiar with symptom recognition, triaging, disease education, community referrals, things at that level that can keep progressing, can fulfil a fan base.

Dr Annalise Rahman-Filipiak:

Fantastic. And I know that the report itself will be leaked in the show notes for this episode on the Dementia Researcher website. So, for folks looking for those recommendations, I think that they are linked in the report, which is great. So, Diane, turning back to you, dementia care is uniquely challenging due to the profound impact of Alzheimer’s disease and related dementias on cognition, on behaviour, on functional capacity, so many different aspects.

What are some innovative solutions proposed in your report to address these challenges, especially in terms of supporting both the person living with dementia, but also their care partner?

Diane Ty:

Yes, you really nailed it on the head in terms of the challenges, particularly for the family caregiver who really experiences physical, emotional, financial strain through the journey, oftentimes needing to leave their work if they’re employed outside the home. Oftentimes, you’ll find it’s a sandwich caregiver who is also caring for children and never thought of themselves, then having to prepare for this long journey that can average between four and seven years, potentially as long as 20. So, imagine that.

But in terms of the solution, certainly we advocate for the caregiver training, respite care. We’re really excited, I know particularly US focused, we talked a lot about one of the biggest barriers to scaling this care navigator role is the payment, the lack of payment. So, we have a whole section. The whole theme too is around the need for reimbursement, payment, incentives, alignment. And so our report came out in March of 2023.

It’s already out of date, because in July of this year, very exciting, our Centre for Medicare and Medicaid Innovation, CMMI, announced this new model called GUIDE, and it is really breakthrough. It’s an alternative payment model, and it includes the care navigator role as being part of the interprofessional care team. So, GUIDE stands for guiding an improved dementia experience.

So, it’s offering a monthly per beneficiary per month payment to support this interdisciplinary approach to care delivery, must include the care navigator on the team.

It includes an allocation annually for caregiver respite. So, I really applaud our colleagues at CMMI for the listening they did. I applaud the incredible advocacy work that was done by the Alzheimer’s Association that put forth this bipartisan legislation called the Comprehensive Care for Alzheimer’s Act.

We also helped amplify an economic analysis that was commissioned by the Alzheimer’s Association and conducted by Healthsperien to show that better dementia care would save our federal government nearly, I think like $21 billion over 10 years. That’s how game-changing, again, putting in place a comprehensive dementia care approach can be. And again, caregiver support 24/7 access to support. This is game changing.

Now, we’re actually, just yesterday we saw the release of the RFP, the request for proposals, asking for health systems to apply to be part of this demonstration. It’s going to be eight years.

Rajiv Ahuja:

There’s a big emphasis on making sure that this GUIDE model impacts underserved communities also.

Diane Ty:

Yes, health equity is core to this guide model, which we’re excited about.

Dr Annalise Rahman-Filipiak:

So for folks outside the US, it may be challenging to understand what a monumental change this is. Could you maybe give folks an idea of how a more classic kind of fee for service model might’ve limited implementation of this dementia care navigator role or model

Diane Ty:

In fee for services, you’re kind of paying, you’re using these CPT codes for all the different things that you’re doing as a provider. It didn’t cover things like caregiver respite. It didn’t cover things like caregiver training or any referrals. So, we talk a lot about diagnose and adios. That family would be left to just navigate on their own, not only the medical care, the appointments that Raj referred to try to find the specialist if needed, and then getting the referrals in the community that was not compensated, that was not paid for by fee for service Medicare, and certainly not the dementia care navigator role.

And I think our report, and certainly these evidence-based models that we highlighted to six of them that show those eight comprehensive core elements as part of these evidence-based models, most of those pieces weren’t covered. They are now, as part of this GUIDE model. It’s really incredible, the partnership that went into advocating and CMMI really seeing the crisis at hand and hearing story after story of families trying to navigate this tough journey on their own and needing the supports. So, this is really, really monumental in the US.

Dr Annalise Rahman-Filipiak:

Raj, one outcome of the global COVID-19 pandemic was this rapid implementation of telehealth. One of the things I really liked about your report was the emphasis on leveraging online technology, technology-based solutions for dementia care navigation. Could you give some examples of how technology and telehealth could aid care navigators in managing the daily tasks and providing virtual support to those living with dementia and their caregivers?

Rajiv Ahuja:

Sure. I think it’s important to note, first off, with all of the conversations around technology that, excuse me, dementia is a very high touch, high need area that really requires a lot of direct interaction. And I think during COVID, without that direct interaction, we saw tremendous suffering. We saw an increase in excess deaths as it relates to Alzheimer’s and dementia care. So, I think that level of care is really, really can’t be emphasised enough.

So, that being said, I think there’s technologies that we highlight in our report that will give providers and care navigators and other healthcare professionals more of an opportunity to increase that interaction. And so that’s the kind of area of technology that we tried to address and try to make a focus of dementia care. And so I think there’s three buckets of technology that we really emphasise.

One is around facilitating communication, making sure that families can access, providers can access the information that they’re needed, can access community supports that are needed. Things like Zoom for telehealth, like you mentioned, is invaluable for caregivers that need to be in the home, that need to access their providers in real time to address certain situations. I think the other area of technology that we really talk about is care navigators that can use tools to help track and manage care in real time.

And so there’s a whole need to help coordinate care and manage care among various healthcare professionals. And so this category of tools really helps to streamline care planning, helps manage or track medication management, the kind of overall daily activities that care navigators can then report back to physicians and maintain that level of communication with families.

And I think the third area is really providing forums for peer-to-peer support, for access to information. There’s a whole area of virtual support tools that are emerging that allow care navigators, again, to access information, pass it on to families that need them, that is becoming kind of a central technology within dementia care. And then, because we need to talk about AI, there’s a whole world of AI tools that are really beneficial to help kind of automate repetitive tasks that go on.

They can automate scheduling appointments, they can analyse data from health records to raise red flags, to help triage kind of patient journeys as they go between different stages. They can identify when more resources need to be allocated, and then there’s a whole world of personalised recommendations that can be utilised through some of these machine learning and artificial intelligence.

Dr Annalise Rahman-Filipiak:

Yeah, it’s quite incredible to see the AI applications and how they could really revolutionise and enhance the care that we’re already giving. So, Diane, before we wrap up, what do you think are the main takeaways from this report and what would you like to see happen next?

Diane Ty:

I mean, I think the main takeaway is the game-changing role that a care navigator can have in the dementia care journey, benefiting health systems. We know that having a care navigator can save costs and really for that family, the person living with dementia and the family caregiver, again, game changing to have someone walking alongside them on this journey. So, my hope is that the GUIDE model demonstration project goes very, very well. And maybe before the eight years, we see wonderful evidence and then can roll this out and scale it to benefit all families. So, that’s my wish.

Dr Annalise Rahman-Filipiak:

I’m afraid that is all we have time for today. Don’t forget that you can find a link to the report in our show notes, and if you visit the Dementia Researcher website, you’ll find a full transcript, biographies on our guests, blogs, and much more on this topic. I’d like to thank our incredible guests, Diane Ty and Rajiv Ahuja, and of course, the Milken Institute for their fantastic work. I’m Dr. Annalise Rahman-Filipiak, and you’ve been listening to the Dementia Researcher Podcast. Bye everyone.

Diane Ty:

Thank you. Bye.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London, with generous funding from the UK National Institute for Health Research, Alzheimer’s Research UK, Alzheimer’s Society, Alzheimer’s Association, and Race Against Dementia. Please subscribe, leave us a review and register on our website for full access to all our great resources, dementiaresearcher.nihr.ac.uk.


Like what you hear? Please review, like, and share our podcast – and don’t forget to subscribe to ensure you never miss an episode.

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 adam.smith@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.

This podcast is brought to you in association with the Alzheimer’s Association, Alzheimer’s Research UK, Race Against Dementia and Alzheimer’s Society, who we thank for their ongoing support.

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


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