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Improving Dementia Care Journeys · Dementia Researcher Vodcast

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- [Announcer] The "Dementia Researcher" podcast,
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talking careers, research, conference highlights,
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and so much more.
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- Welcome to the "Dementia Researcher" podcast.
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I'm Dr. Annalise Rahman-Filipiak.
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I'm a neuropsychologist and assistant professor
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at the Research Programme on Cognition
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and Neuromodulation-Based Interventions
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here at the University of Michigan.
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And today I have the pleasure of hosting
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Diane Ty and Rajiv Ahuja,
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authors of a pivotal report from the Milken Institute.
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The report titled, "Guiding the Care Journey"
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was published a few months ago.
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And it addresses the critical challenges
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and presents innovative solutions for dementia care
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in the US, with a particular focus on the role
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of the care navigator.
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Of course, we know that many of our listeners are in the UK
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and other parts of the world,
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but the important recommendations in the report
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are relevant to all of us,
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as we face similar healthcare system challenges.
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Now most countries are expected to see a rise
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in dementia cases in the coming years.
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In fact, the World Health Organisation says
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that the 55 million cases that were found in 2019
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will increase to 139 million by 2050.
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So our discussion today will shed light
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on what our guests have uncovered
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about how we can improve care for people
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living with dementia and their families,
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and how people that deliver that care are important.
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So let's start by meeting our guests.
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(bright music)
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Hi, Diane, and hello, Raj.
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- Hi, Annalise. - Hi.
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- How you both doing?
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- We're good, thank you. - Doing great. Thanks.
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- Diane, why don't you start by telling us
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a little bit about yourself?
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- So I lead the Milken Institute Centre
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for the Future of Ageing, where we work at the intersection
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of healthy longevity and financial care security.
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We do that through research, convenings,
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multi-sector partnerships,
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and the elevation of high-impact policies and practises.
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I've been here for almost three years,
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and before that I was a senior partner
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at Georgetown University School of Business
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working in a group called Business for Impact.
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I spent time at AARP, AARP Services,
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the for-profit subsidiary of AARP,
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and just Save the Children,
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and then I spent about a decade at American Express.
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So I love working across the public, private,
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nonprofit sectors, and that's what this job is.
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- Fantastic. Thanks so much for being here.
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Raj, how about you?
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- Yeah, thanks, Annalise. I appreciate this opportunity.
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I work closely with Diane
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in our Centre for the Future of Ageing
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here at the Milken Institute.
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And work with Diane to manage our alliance
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to improve dementia care, which is a broad-based coalition
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of over 130 dementia-focused organisations
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that are really looking to improve how healthcare
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and long-term care services are delivered
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to people at risk for dementia and living with dementia,
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as well as their families.
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I've been at the Milken Institute
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for about four and a half years
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and come from a background in healthcare policy,
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doing consulting for pharmaceutical companies,
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for health plans, military health,
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all with the goal of trying to increase access
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to care services and products for everyone.
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So I'm happy to be here to talk about this topic.
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Appreciate it. - Well, thanks for being here,
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both of you and sharing your vast expertise with us.
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(bright music)
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Diane, let's start with an easy question.
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Could you give us a high-level intro about this report,
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how it came about, and maybe why you think
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this topic is so important?
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- Sure, so as Raj mentioned, we have this alliance
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to improve dementia care over 130 multi-sector,
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you know, multi-stakeholder members.
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And our steering committee in particular,
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we consult with them from time to time.
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We meet bimonthly, and you know,
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we were really asking them what is the area
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that we, as a cross-collaborative group,
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should be focused on?
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And the topic of workforce,
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a dementia-capable workforce came up.
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Raj was instrumental in getting our alliance off the ground.
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I joined in December, 2020.
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So we've been around for about three years.
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And our steering committee just represents
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this whole cross sector.
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So we all agree that workforce shortages
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is a critical area of concern.
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And so we set out to look at what does that mean?
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We had a working group, we do our round table convening.
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It's a private session, Chatham House rules.
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We come up with consensus-based recommendations,
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it's peer reviewed, and that's how we release the report.
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But this topic of dementia care navigator
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and that role was front and centre as we did our,
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you know, went through our process.
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And then this really came to light as a key area,
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game-changing role for dementia care.
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- Awesome.
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One of the things I thought was that was really unique
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about your dementia care alliance
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and maybe the steering committee is the input
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that you get too from people living with dementia
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and their families.
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- Absolutely, and so for each of our private round tables,
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we start out with someone, you know, living with dementia
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or caregiver caring for loved one dementia,
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really just giving kind of a,
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you know, a sharing the experience.
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And it really then just sets the tone
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for why we're all here.
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What I'm amazed at is the number of people, members,
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including myself, who've had a personal experience
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caring for a loved one with dementia.
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I lost my dad to Alzheimer's 11 years ago.
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And it still feels really raw after all this time.
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And this is why we're so motivated to improve
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that care journey for the people living with dementia
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as well as their family caregivers.
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- Yeah, it's very clear that you both bring that passion,
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that personal passion to this work.
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Raj, the report highlights a significant challenge
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in meeting these growing demands for dementia care,
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especially given this expected doubling of individuals
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living with Alzheimer's disease
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and related dementias by 2040.
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What are some key strategies to address the shortage
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in what you call the dementia-capable workforce,
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the medical providers with specialised training
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in dementia care?
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- Thanks, Annalise.
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I think, you know, you're absolutely right.
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Here in the US, our healthcare system,
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our long-term care system is really facing
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significant challenges right now in meeting
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this growing demand for dementia care.
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I think especially the statistic that you cited
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in terms of doubling of the population
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is really gonna impact how services are delivered
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in cities, in rural populations, in underserved populations,
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low-income populations all are gonna be impacted
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by the shortage of a workforce.
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And so I think when you think of this growing population
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and the capacity constraints that come with it,
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you know, the workforce is really going to be at the centre
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of efforts to improve dementia care.
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And we know that moving forward, there's gonna be a shortage
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of primary care physicians, geriatricians,
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specialists, and direct skilled care workers.
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I think there's statistics that show, you know,
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over the next couple decades there's going to be,
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there's gonna need to be a quadrupling
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of the number of geriatricians in order to meet this demand.
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And so I think, you know, it requires a little bit more
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foresight in terms of filling that need
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for this growing population,
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when what we really need is, you know,
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a comprehensive dementia-capable
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and culturally-sensitive workforce, you know,
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that's highly coordinated, that's trained specifically
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in dementia care and can recognise symptoms
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and make the necessary community referrals
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and are familiar with the available tools
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and resources that are out there.
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You know, we know that this dementia-capable workforce
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is going to need to represent a broad range of interests.
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So, you know, how do we go about doing that?
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You know, I don't think it's going to be realistic
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to train as many primary care physicians
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and geriatricians that we need.
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So how do we go about addressing this?
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And I think, you know, at its very core,
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we really need to start expanding the definition
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of what that workforce is.
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You know, we need to include everyone that interacts
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with high-risk individuals and families living with dementia
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that's either a current healthcare professional,
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a future healthcare professional, including nurses,
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community health workers, and long-term care workers.
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And I think even family members,
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family caregivers are all going to need to be part
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of this expanded definition of workforce.
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And so, you know, in our report,
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we outline a number of strategies also
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to increase the dementia-capable workforce.
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And we really focus a lot on efforts to increase recruiting,
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increase training, and increase retention
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of the dementia-capable workforce.
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And I would just kind of note that, you know,
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with the growing shortage of healthcare professionals,
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there are some bright spots there also.
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We know that certain professions
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within the healthcare industry are growing.
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Nurse practitioners in particular is a growing field,
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physician associates are a growing field,
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social workers are a growing field.
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And so these are all ripe associations to recruit from,
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to train and really bring into this dementia
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conversation in terms of workforce.
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- Fantastic.
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I think that's a great lead into my next question.
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It may be useful for our listeners,
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given the broad listenership of the podcast,
10:11
to hear a little more about this role
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as it might not be quite so common outside the US.
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So Diane, the report defines care navigators
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or care navigation as individualised assistance
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to patients and caregivers to facilitate access
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to quality health and psychosocial care.
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Maybe you could tell us a bit more about the role
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of care navigators, what settings they might work in,
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what are some personal or professional qualifications
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of the care navigator.
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- Sure. Thanks, Annalise.
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So absolutely, this care navigation role,
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I wanna start by just saying it's a role
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that's actually common in cancer care, diabetes care.
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And what we did is we had a prior report
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to this one called
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"Scaling Comprehensive Dementia Care Models."
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And in that we focused on the eight core elements
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that define a comprehensive dementia care model,
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of which there are six evidence-based ones.
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And we talk about them in not only
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the "Scaling Comprehensive Dementia Care" report,
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but we also reference them in this new report
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on guiding the care journey.
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So they include the eight core elements
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include things like caregiver support,
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medication management, care coordination,
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ongoing care planning.
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And we looked at the different models
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where some are telephonic-based or online-based,
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some are community or home-based
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and some are clinically-based.
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You can just see that range, and I'll mention the six.
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Most of them focus within academic settings.
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So there's a UCLA dementia care programme,
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University of California San Francisco Care Ecosystem,
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which is the telephone-based one.
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Emory University's Integrated Memory Care model.
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Benjamin Rose Institute, and then the Eskenazi Health one
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at Indiana University, and then MIND,
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Maximising Independence at Home,
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that comes out of John Hopkins University.
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These are all awesome models,
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but what we looked at is these eight core elements,
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while necessary, we don't think they're all created equal.
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So we kind of took a step back and said,
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"What among these eight could be actually game changing
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if we could get this one role focused on?"
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So it was that care coordination role.
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So someone who's actually helping the person
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living with dementia and the family caregiver,
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that care dyad that we refer to,
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navigate our complex health system, our healthcare system,
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and the social care system,
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all the types of social care services
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that are outside the medical setting
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delivered mostly by community-based organisations.
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So transportation, meals, caregiver training, support,
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respite care, all of these are really critical parts
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of the dementia care model.
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And so, you know, we did these
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key opinion leader interviews, we had a round table,
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all of this started bubbling up,
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like if we can define this model.
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And you'll see a chart in our report
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that organises advice setting.
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One of the things that's a bit confusing
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that we acknowledge too in the report
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is the name of this role,
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dementia care specialist, which is used in Wisconsin state
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to reference non-licensed care paraprofessionals.
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That dementia care specialist is also used
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in the clinical care model offered by UCLA,
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care coordinator, and so we wanted to acknowledge
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that even that, depending on the care models,
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can be confusing, venture care specialist,
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venture care coordinator, on and on.
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But essentially the role is to be that sort of guide,
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you know, all along the way knowing when to escalate
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and elevate the care, when to bring the person,
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if they're evolving or progressing
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in their dementia care journey, what we might need to do.
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Is there medication management?
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And bringing in the right intervention at that time
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and being part of an interprofessional care team.
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So really core to that interprofessional care team,
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care navigator and caregiver, as well as the clinical folks.
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So I hope that answered your question.
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- I think so, yeah. That's fantastic information.
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It really strikes me, oh, go ahead-
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- Annalise, can I just jump in-
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- Yeah, please. - To kind of piggyback
14:38
off of what Diane said.
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You know, this position is a really versatile position.
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And I think, you know, we talk so much about
14:47
the unique journey of families that live with dementia.
14:51
You know, it's a progressive disease
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that requires different interventions at different stages.
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And so I think, you know, the care models
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that Diane mentioned, you know, some are more on the medical
15:02
side of care for folks with more advanced needs
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that require, you know, more of medication management,
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that require more therapeutics.
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But there's a whole group of individuals at early stages
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that really need access to education,
15:22
access to appointment, you know,
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facilitation among the fragmented specialists
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that they have to see.
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And so I think this care navigator, you know,
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is very versatile in terms of being able to provide
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those services along that spectrum
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of the disease journey that a lot of families
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have trouble navigating.
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So I just wanted to throw that in there too.
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- And just to piggyback on what Raj said,
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you know, we look at a population-health approach.
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So if you think about like a care pyramid
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with the folks at the bottom, as Raj mentioned,
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maybe in that early stage, if they're diagnosed,
15:59
they might just need more of that care and handholding
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and navigation all the way to the top of the pyramid
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where you have more of a moderate to advanced
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stage of the disease where you may have behavioural issues
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and need for therapeutics and much more care,
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and so delivered at the higher level
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of your licenced care professionals,
16:23
like your nurse practitioners, your geriatricians.
16:27
So yeah, it's a very versatile role.
16:29
- Yeah, I really think that leveraging paraprofessionals
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is just an amazing part of this set of recommendations.
16:35
And part because in my experience, I think a lot
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of our paraprofessionals have a great knowledge
16:41
of the community, often have the trust of the community.
16:44
- Absolutely, yes.
16:44
- And particularly when we're talking
16:45
about marginalised communities,
16:48
individuals who may have less access to
16:52
or trust in the healthcare system,
16:54
that could be a massive strength.
16:56
- We are actually writing an update to one
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of the other reports we did,
17:00
which was building the workforce to improve
17:05
early detection and diagnosis of dementia.
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And since then, that came out in May of 2021.
17:13
And we've seen such a sea change going on
17:17
with what's going on with dementia space.
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And we did a lit review and all,
17:22
and it's really pointing to is community health workers.
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To your point, they're from the community, they're trusted,
17:31
they're culturally competent,
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linguistically capable in many cases.
17:36
And we see such a disproportionate risk
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of people with dementia in terms of,
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you know, Blacks two times more likely,
17:47
Hispanics one and a half times more likely.
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We don't know offhand the dementia risks for AAPIs,
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but Raj and I actually co-authored an article
17:56
to try to shine a light on the fact that, you know,
17:59
one size does not fit all.
18:00
So if we lump AAPIs together in one group,
18:05
there's many different ethnic backgrounds,
18:09
socioeconomic backgrounds, ethnic backgrounds
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within the AAPI community.
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And we strongly believe that there's disproportionate risk
18:18
for certain subpopulations of the AAPI.
18:20
So absolutely those trusted community workers.
18:24
- Mm-hm.
18:26
And for listeners outside the US,
18:28
I also wanna mention that, you know, Diane,
18:30
you just mentioned that we see that, for instance,
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Black and African American patients are twice as likely
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to have Alzheimer's disease but tend to be diagnosed
18:39
much later and much less frequently.
18:41
We also know that their care partners
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tend to have a disproportionate burden of caregiving.
18:46
So they're get caregiving full-time,
18:48
they're caregiving at later stages of the disease.
18:51
So I'd love to talk more about how the care navigator
18:55
might address that specific disparity.
18:57
Raj, maybe you could tell us a bit more about that.
19:00
- Sure.
19:01
You know, I think it's so critical to, you know,
19:04
highlight how complex dementia care is in general.
19:08
There's so many specialists that families have to see,
19:13
you know, the issue of access to care is, you know,
19:17
front and centre for everyone living with dementia.
19:21
But I think, you know, there's been longstanding disparities
19:25
that things like COVID had highlighted
19:28
that really impact families in underserved communities
19:33
that are living with dementia.
19:34
And so when we talk about underserved communities,
19:38
you know, we talk about racial and ethnic disparities
19:41
of which there are major discrepancies,
19:44
you know, in access to care.
19:46
We talk about rural versus urban access to care.
19:50
You know, there's a tremendous issue with just being able
19:53
to see primary care physicians in rural communities.
19:59
And we also talk about low socioeconomic communities
20:03
in terms of the cost of care to families.
20:07
They spend more out of pocket than other communities.
20:11
And so I think, you know, one of the things
20:13
that care navigation does is it really highlights
20:17
the need for a comprehensive approach to dementia care
20:21
and places the care navigator at the centre
20:24
of that approach.
20:24
So families often have a hard time engaging
20:28
with their providers.
20:30
They have a hard time navigating the multiple requirements
20:35
that are needed in terms of appointments.
20:38
They have a hard time applying for benefits.
20:41
And so care navigators can really be that point of contact
20:45
for families to help with things like applying for benefits
20:50
that they need,
20:50
for making culturally-appropriate referrals
20:56
into the community.
20:57
You know, we know that a lot of dementia care takes place
21:00
outside of formal healthcare systems
21:04
and really takes place in the community,
21:06
and the access to those community supports is really needed,
21:10
you know, for individuals in these diverse communities.
21:14
And, you know, care navigators are trained to understand
21:18
what is available in terms of nutrition access,
21:24
in terms of some of the physical interventions
21:28
that are applicable to education,
21:31
to resources for, you know, understanding
21:36
the modifiable risk factors that are needed,
21:38
and really making that a more kind of
21:41
culturally-appropriate referral.
21:43
And so I think those care navigators,
21:46
like the community health workers that Diane had mentioned,
21:49
you know, represent those families.
21:52
We in our report make recommendations to recruit
21:57
from underserved communities so that those care navigators
22:00
speak the language, so that's not a barrier.
22:04
They can engage compassionately with families
22:08
and connect them to providers as needed.
22:11
They can be the voice of caregivers.
22:13
'Cause a lot of times caregivers
22:15
in underrepresented communities experience a higher burden
22:20
to their health.
22:21
They experience a higher burden
22:22
in terms of out-of-pocket expenses.
22:24
And so I think that care navigator as kind of the liaison
22:29
among all the different fragmented systems
22:32
in dementia care really provide, you know,
22:36
more of that access into the care, you know,
22:38
some of those underserved communities have traditionally
22:41
had a hard time with. - Fantastic.
22:44
Thanks for sharing that.
22:45
So Diane, your report makes six key recommendations
22:49
with the first theme focusing on developing a framework
22:52
for care navigation on dementia care teams.
22:56
Can you discuss the importance of these recommendations
22:58
and how they may be effectively implemented?
23:01
- Sure, so yeah, the first theme was around,
23:05
you know, really looking at the dementia care navigator role
23:10
in the various care settings, which I've already mentioned,
23:12
the telephone or online, home and community-based
23:15
and clinical setting.
23:17
We do this chart that looks at the licencing
23:21
and non-licensing, emphasising no matter what that area
23:25
or level of professional or paraprofessional,
23:29
they need dementia-specific training.
23:33
And then we have our second recommendation was around,
23:37
I think Raj already mentioned this,
23:39
recruitment efforts to really bolster
23:43
the dementia-trained workforce.
23:44
So we looked at the shortages
23:47
of both primary care physicians and specialists.
23:50
And when we refer to specialists,
23:52
there are really four types:
23:53
there's the neurologist, the geriatric psychiatrist,
23:57
geriatricians and neuropsychologists.
24:00
That's defined by the Alzheimer's Association.
24:03
We're gonna have a shortage of anywhere from 21
24:06
to 55,000 primary care physicians by 2032,
24:11
even more so with geriatricians,
24:14
just at a time when our population
24:17
is of people over 65 increasing,
24:21
and with age being the greatest risk factor for dementia.
24:25
I mean, we really have, and then this obviously echoed
24:29
with our steering committee with the alliance,
24:32
a real crisis on our hands.
24:34
And so Raj already mentioned nurse practitioners,
24:38
physicians, associates, social workers,
24:40
these are actually parts of our healthcare workforce
24:43
that are actually growing.
24:45
And so emphasising the need to recruit, train,
24:49
and have them part of these interprofessional care teams
24:52
is really critical.
24:53
And then I think the third recommendation
24:56
and our theme one with the need for training curriculum,
24:59
again, all up and down the chain
25:01
from paraprofessionals to the highest level of professionals
25:05
who are licenced.
25:06
And we provide some, you know, recommendations
25:09
for different programmes that have been developed
25:12
and supported, whether we provided online, video,
25:16
you know, in-person and just tried to show the range.
25:19
One of the things that I took away
25:23
from our expert round table was,
25:27
you know, there is that online, there's the video.
25:30
But until you actually are face-to-face
25:33
with the person living dementia, with the family,
25:38
it's a journey of one, right?
25:40
And so the need to customise, understand.
25:43
And, you know, I also,
25:46
you think about the care navigator all
25:47
and some of the personal characteristics
25:50
that we talked about and and emphasise is,
25:54
you know, someone who's just, by nature,
25:57
someone who's empathetic, empathy.
26:01
And boy, that's a characteristic you,
26:05
it's hard to train for and you just have it, right?
26:08
And so we look, you know, we talk about really looking
26:11
for that no matter what level you are.
26:14
And just to see the folks who work in this space
26:18
that we have the privilege of interacting with
26:21
through our alliance or through our travels.
26:25
Incredible passion, incredible empathy,
26:28
and a shared understanding.
26:29
Many people have the lived experience
26:32
of having cared for a loved one.
26:34
And so, you know, kind of the,
26:36
"I wish I had a care navigator when I went through this,"
26:40
you know, you often hear.
26:41
And then how can we make this role available to all
26:47
as we move forward today and moving forward?
26:50
- Yeah, so much of this really seems to be about translating
26:54
across the different healthcare systems,
26:55
across the different settings, across cultural boundaries.
27:00
You know, there's a lot of versatility required
27:03
in this role, which is great.
27:05
- Yeah, and I think, you know, one of the things we hear
27:07
from folks just in terms of the workforce
27:12
and that dementia-capable workforce
27:14
is that these are good jobs.
27:16
These are jobs that allow individuals
27:19
a high level of patient access.
27:21
It allows them to see a career path in front of them.
27:27
It's just a matter of elevating them
27:30
within these interprofessional care team
27:32
so that their role is made more significant,
27:35
their role is kind of placed at the centre of
27:38
the physicians on one side, the community on the other side,
27:42
the family, you know, on the other side.
27:44
And so I think, like Diane had mentioned,
27:47
recruiting initially is really difficult.
27:50
We talk to trainers all the time who say,
27:53
"We go through a period of training."
27:55
The minute, you know, the person we're training
27:58
is in front of a family confronted with some of the,
28:01
you know, hard decisions and hard interactions
28:05
that take place, some of them, you know,
28:07
it's not for them, they realise.
28:09
But it's the ones with the empathy,
28:11
it's the ones with the lived experience that can overcome
28:14
a lot of the difficulty and the challenges.
28:17
And we need to do more to professionalise
28:21
the career path so that people stick with it.
28:24
And, you know, we talk about things like leveraging
28:27
existing certifications, you know, for individuals
28:31
that can receive that recognition for the care that they do,
28:36
formally recognises a person's skillset.
28:39
It elevates them within the dementia care team.
28:41
So I think things like that are things that we can do
28:45
to increase awareness for kind of the benefits
28:48
of these types of roles within dementia care.
28:52
- You both mentioned some of the less-trainable aspects
28:56
of a successful care navigator.
28:59
But you also mentioned some certification programmes
29:01
or learning resources that already exist.
29:04
Are there any that you wanna highlight here
29:06
for those that might be listening and thinking about
29:09
growing in their skills?
29:10
- Sure, I mean, I can just,
29:12
there's one, you know, that we really highlighted.
29:14
It's a certified dementia practitioner certificate
29:18
that really targets healthcare professionals,
29:22
clergy, social workers, anybody that's interacting with,
29:27
you know, people with cognitive decline.
29:29
It provides them with a training and certification to,
29:35
you know, just elevate their role again.
29:38
There's other ones, you know, that we highlight
29:40
in our report from CareAcademy, HealthCare Interactive.
29:43
- (indistinct) one, Raj, that- - Yeah.
29:45
(Diane speaks indistinctly)
29:47
It's starting to become requirements
29:50
at the state level for anybody that's going into their home
29:55
to provide care for individuals with dementia.
29:58
And, you know, there's certain amount of
30:00
continuing education requirements so that they're
30:04
kind of familiar with symptom recognition,
30:07
triaging, disease education,
30:10
community referrals, things at that level
30:13
that can kind of keep progressing, again, for families.
30:19
- Fantastic.
30:20
And I know that the report itself will be linked
30:24
in the show notes for this episode
30:26
on the Dementia Researcher website.
30:27
So for folks looking for those recommendations,
30:30
I think that they are linked in the report, which is great.
30:34
So Diane, turning back to you,
30:38
dementia care is uniquely challenging
30:39
due to the profound impact of Alzheimer's disease
30:42
and related dementias on cognition, on behaviour,
30:46
on functional capacity, so many different aspects.
30:49
What are some innovative solutions proposed in your report
30:52
to address these challenges,
30:54
especially in terms of supporting both the person
30:57
living with dementia but also their care partner?
31:00
- Yes, you really nailed it on the head
31:03
in terms of the challenges,
31:06
particularly for the family caregiver who really experiences
31:12
physical, emotional, financial strain through the journey.
31:17
You know, oftentimes needing to leave
31:20
their work if they're employed outside the home.
31:24
Oftentimes you'll find it's a sandwich caregiver
31:27
who has also caring for children,
31:29
and never thought of themselves and having to prepare
31:33
for this long journey that can, you know,
31:36
average between four and seven years
31:38
and potentially as long as 20, so imagine that.
31:41
But in terms of some of the solutions,
31:44
certainly we advocate for the caregiver training,
31:48
respite care.
31:49
We're really excited, I know, you know,
31:51
particularly US-focused, we talked a lot about
31:54
one of the biggest barriers to scaling
31:59
this care navigator role is the payment,
32:02
the lack of payment.
32:04
So we have a whole section, the whole theme too is around,
32:09
you know, the need for reimbursement,
32:12
payment, incentives, alignment.
32:14
And so our report came out in March of 2023.
32:19
It's already outta date (chuckles)
32:20
because in July of this year, very exciting,
32:24
our Centre for Medicare and Medicaid Innovation, CMMI,
32:29
announced this new model called GUIDE.
32:33
And you know, it is really breakthrough.
32:36
It's an alternative payment model.
32:39
And it includes the care navigator role
32:45
as being part of the interprofessional care team.
32:49
So GUIDE stands for Guiding an Improved Dementia Experience.
32:54
So it's offering a monthly per beneficiary per month payment
33:00
to support this interdisciplinary approach to care delivery,
33:04
must include the care navigator on the team.
33:07
It includes an allocation annually
33:11
for caregiver respite.
33:14
So, you know, I really applaud our colleagues
33:16
at CMMI for the listening they did.
33:19
I applaud the incredible advocacy work that was done
33:23
by the Alzheimer's Association that put forth
33:27
this bipartisan legislation
33:29
called the Comprehensive Care for Alzheimer's Act.
33:32
We also helped amplify an economic analysis
33:35
that was commissioned by the Alzheimer's Association
33:38
and conducted by Health Sperion
33:40
to show that better dementia care would save
33:43
our federal government nearly,
33:46
I think like $21 billion over 10 years.
33:50
That's how game changing, again, putting in place
33:54
a comprehensive dementia care approach can mean.
33:58
And again, caregiver support, 24/7 access to support.
34:04
This is game changing.
34:06
Now, we're actually, just yesterday we saw the release
34:10
of the RFP, the request for proposal,
34:13
asking for health systems to apply
34:16
to be part of this demonstration.
34:19
It's going to be eight years.
34:20
So, you know, progress.
34:24
- And then there's a big emphasis
34:27
on making sure that this GUIDE model
34:31
impacts underserved communities also.
34:33
- Yes, (indistinct) could be- - Fantastic.
34:34
- Core to this GUIDE model, which we're excited about.
34:37
- So for folks outside the US, it may be challenging
34:41
to understand what a monumental change this is.
34:45
Could you maybe give folks an idea of how more classic
34:48
kind of Fee-For-Service model might have limited
34:50
implementation of this dementia care navigator role
34:54
or model? - Yeah.
34:55
So, you know, and Fee-For-Service is, you know,
34:57
you're kind of paying, you're using these CPT codes
35:01
for all the different things that you're doing
35:02
as a provider.
35:05
It didn't cover things like caregiver respite,
35:08
didn't cover things like caregiver training,
35:11
or you know, any referrals.
35:13
So we talk a lot about diagnose and adios.
35:17
That family would be left to just navigate on their own,
35:22
not only the medical care,
35:23
the appointments that Raj referred to,
35:25
trying to find the specialist if needed,
35:28
and then getting the referrals in the community.
35:31
That was not compensated, that was not paid for
35:34
by Fee-For-Service Medicare
35:36
and certainly not the dementia care navigator role.
35:38
And I think our report,
35:40
and certainly these evidence-based models
35:42
that we highlighted, the six of them
35:45
that show those eight comprehensive
35:49
core elements as part of these evidence-based models.
35:54
Most of those pieces weren't covered.
35:56
They are now as part of this GUIDE model.
35:58
So it's really incredible the partnership
36:01
that went into advocating and, you know,
36:04
CMMI really seeing the crisis at hand
36:09
and hearing story after story of families
36:12
trying to navigate this tough journey on their own
36:15
and needing the supports.
36:17
So this is really, really monumental in the US.
36:20
- Amazing.
36:23
Raj, one outcome of the global COVID-19 pandemic
36:27
was this rapid implementation of telehealth.
36:30
One of the things I really liked about your report
36:33
was the emphasis on leveraging online technology,
36:36
technology-based solutions for dementia care navigation.
36:40
Could you give some examples of how technology
36:43
and telehealth could aid care navigators in managing
36:46
the daily tasks and providing virtual support
36:49
to those living with dementia and their caregivers?
36:52
- Sure, I think it's important to note first off,
36:55
with all of the conversations around technology that,
36:59
(coughs) excuse me,
37:00
dementia is a very high-touch, high-need area
37:05
that really requires a lot of direct interaction.
37:10
And I think during COVID, without that direct interaction,
37:14
we saw tremendous suffering.
37:16
We saw an increase in excess deaths, you know,
37:20
as it relates to Alzheimer's and dementia care.
37:23
So I think, you know, that level of care is really, really,
37:28
can't be emphasised enough.
37:29
So that being said, I think there's technologies
37:32
that we highlight in our report that will give providers
37:36
and care navigators and other healthcare professionals
37:39
more of an opportunity to increase that interaction.
37:44
And so that's the kind of area of technology
37:47
that we try to address and try to make a focus
37:51
of dementia care.
37:52
And so I think, you know, there's three buckets
37:56
of technology that we really emphasise.
37:59
One is around facilitating communication,
38:02
making sure that families can access providers,
38:07
can access the information that they're needed,
38:09
can access community supports that are needed.
38:12
Things like Zoom for telehealth, like you mentioned,
38:15
is invaluable for caregivers that can't,
38:19
that need to be in the home,
38:21
that need to access their providers,
38:24
you know, in real time almost to address certain situations.
38:28
I think the other area of technology
38:30
that we really talk about is care navigators
38:33
that can use tools to help track and manage care
38:37
in real time.
38:39
And so, you know, there's a whole need to help
38:43
coordinate care and manage care
38:46
among various healthcare professionals.
38:49
And so this category of tools really helps
38:52
to streamline care planning,
38:55
helps manage or track medication management
38:59
and kind of overall daily activities that, you know,
39:02
care navigators can then report back to physicians
39:07
and maintain that level of communication with with families.
39:11
And I think the third area is really, you know,
39:13
providing forums for peer-to-peer support,
39:17
you know, for access to information.
39:20
There's a whole area of virtual support tools
39:24
that are emerging that allow care navigators, again,
39:28
to access information, pass it onto families
39:34
that need them that is becoming kind of a central technology
39:41
within dementia care.
39:43
And then because we need to talk about AI,
39:46
you know, there's a whole world of AI tools
39:50
that are really beneficial to help kind of automate
39:54
repetitive tasks, you know, that go on,
39:58
that can automate scheduling appointments.
40:01
They can analyse data from health records to raise,
40:04
you know, red flags to help triage
40:07
kind of patient journeys
40:11
as they go between different stages.
40:13
You know, they can identify when more resources
40:15
need to be allocated.
40:18
And then there's a whole world
40:19
of kind of personalised recommendations, you know,
40:21
that can be utilised through some of these machine learning
40:25
and artificial intelligence tools also.
40:28
- It's quite incredible to see the AI applications
40:31
and how they could really revolutionise
40:33
and enhance the care that we're already giving.
40:36
So, Diane, before we wrap up,
40:38
what do you think are the main takeaways from this report,
40:41
and what would you like to see happen next?
40:44
- I mean, I think the main takeaway
40:46
is the game-changing role that a care navigator
40:50
can have in the dementia care journey,
40:53
benefiting health systems.
40:56
We know that having a care navigator can save costs
41:01
and really for that family, the person living with dementia,
41:06
and the family caregiver, you know, again, game changing,
41:09
to have someone walking alongside them on this journey.
41:12
So my hope is that, you know, that the GUIDE model,
41:15
this demonstration project goes very, very well.
41:20
And you know, maybe before the eight years,
41:23
we see wonderful evidence and then can roll this out
41:27
and scale it, you know, to benefit all families.
41:31
So that's my wish.
41:34
- Great. Thanks so much. (bright music)
41:41
I'm afraid that is all we have time for today.
41:45
Don't forget that you can find a link to the report
41:47
in our show notes.
41:48
And if you visit the Dementia Researcher website,
41:51
you'll find a full transcript, biographies on our guests,
41:55
blogs, and much more on this topic.
41:58
I'd like to thank our incredible guests, Diane Ty
42:00
and Rajiv Ahuja, and of course the Milken Institute
42:03
for their fantastic work.
42:05
I'm Dr. Annalise Rahman-Filipiak, and you've been listening
42:08
to the "Dementia Researcher" podcast.
42:12
Bye, everyone. - Thank you. Bye.
42:15
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42:16
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42:19
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42:22
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42:25
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42:28
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42:36
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