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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:

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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,

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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

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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

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the unique journey of families

that live with dementia.

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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

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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,

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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,

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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,

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like your nurse practitioners,

your geriatricians.

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So yeah, it's a very versatile role.

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- Yeah, I really think that

leveraging paraprofessionals

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is just an amazing part of

this set of recommendations.

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And part because in my

experience, I think a lot

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of our paraprofessionals

have a great knowledge

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of the community, often have

the trust of the community.

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- Absolutely, yes.

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- And particularly when we're talking

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about marginalised communities,

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individuals who may have less access to

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or trust in the healthcare system,

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that could be a massive strength.

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- We are actually writing an update to one

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of the other reports we did,

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which was building the

workforce to improve

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early detection and diagnosis of dementia.

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And since then, that

came out in May of 2021.

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And we've seen such a sea change going on

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with what's going on with dementia space.

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And we did a lit review and all,

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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,

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they're culturally competent,

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linguistically capable in many cases.

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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,

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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

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to try to shine a light on

the fact that, you know,

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one size does not fit all.

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So if we lump AAPIs together in one group,

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there's many different ethnic backgrounds,

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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

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for certain subpopulations of the AAPI.

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So absolutely those

trusted community workers.

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- Mm-hm.

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And for listeners outside the US,

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I also wanna mention

that, you know, Diane,

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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

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much later and much less frequently.

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We also know that their care partners

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tend to have a disproportionate

burden of caregiving.

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So they're get caregiving full-time,

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they're caregiving at later

stages of the disease.

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So I'd love to talk more

about how the care navigator

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might address that specific disparity.

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Raj, maybe you could tell

us a bit more about that.

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- Sure.

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You know, I think it's

so critical to, you know,

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highlight how complex

dementia care is in general.

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There's so many specialists

that families have to see,

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you know, the issue of

access to care is, you know,

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front and centre for everyone

living with dementia.

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But I think, you know, there's

been longstanding disparities

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that things like COVID had highlighted

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that really impact families

in underserved communities

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that are living with dementia.

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And so when we talk about

underserved communities,

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you know, we talk about

racial and ethnic disparities

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of which there are major discrepancies,

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you know, in access to care.

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We talk about rural versus

urban access to care.

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You know, there's a tremendous

issue with just being able

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to see primary care physicians

in rural communities.

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And we also talk about low

socioeconomic communities

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in terms of the cost of care to families.

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They spend more out of pocket

than other communities.

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And so I think, you

know, one of the things

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that care navigation does

is it really highlights

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the need for a comprehensive

approach to dementia care

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and places the care

navigator at the centre

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of that approach.

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So families often have

a hard time engaging

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with their providers.

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They have a hard time navigating

the multiple requirements

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that are needed in terms of appointments.

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They have a hard time

applying for benefits.

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And so care navigators can

really be that point of contact

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for families to help with things

like applying for benefits

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that they need,

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for making

culturally-appropriate referrals

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into the community.

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You know, we know that a lot

of dementia care takes place

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outside of formal healthcare systems

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and really takes place in the community,

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and the access to those community

supports is really needed,

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you know, for individuals in

these diverse communities.

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And, you know, care navigators

are trained to understand

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what is available in

terms of nutrition access,

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in terms of some of the

physical interventions

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that are applicable to education,

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to resources for, you know, understanding

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the modifiable risk

factors that are needed,

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and really making that a more kind of

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culturally-appropriate referral.

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And so I think those care navigators,

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like the community health

workers that Diane had mentioned,

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you know, represent those families.

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We in our report make

recommendations to recruit

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from underserved communities

so that those care navigators

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speak the language, so

that's not a barrier.

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They can engage

compassionately with families

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and connect them to providers as needed.

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They can be the voice of caregivers.

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'Cause a lot of times caregivers

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in underrepresented communities

experience a higher burden

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to their health.

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They experience a higher burden

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in terms of out-of-pocket expenses.

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And so I think that care

navigator as kind of the liaison

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among all the different fragmented systems

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in dementia care really provide, you know,

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more of that access

into the care, you know,

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some of those underserved

communities have traditionally

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had a hard time with.

- Fantastic.

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Thanks for sharing that.

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So Diane, your report makes

six key recommendations

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with the first theme focusing

on developing a framework

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for care navigation on

dementia care teams.

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Can you discuss the importance

of these recommendations

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and how they may be

effectively implemented?

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- Sure, so yeah, the

first theme was around,

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you know, really looking at the

dementia care navigator role

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in the various care settings,

which I've already mentioned,

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the telephone or online,

home and community-based

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and clinical setting.

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We do this chart that

looks at the licencing

Speaker:

and non-licensing, emphasising

no matter what that area

Speaker:

or level of professional

or paraprofessional,

Speaker:

they need dementia-specific training.

Speaker:

And then we have our second

recommendation was around,

Speaker:

I think Raj already mentioned this,

Speaker:

recruitment efforts to really bolster

Speaker:

the dementia-trained workforce.

Speaker:

So we looked at the shortages

Speaker:

of both primary care

physicians and specialists.

Speaker:

And when we refer to specialists,

Speaker:

there are really four types:

Speaker:

there's the neurologist,

the geriatric psychiatrist,

Speaker:

geriatricians and neuropsychologists.

Speaker:

That's defined by the

Alzheimer's Association.

Speaker:

We're gonna have a shortage

of anywhere from 21

Speaker:

to 55,000 primary care physicians by 2032,

Speaker:

even more so with geriatricians,

Speaker:

just at a time when our population

Speaker:

is of people over 65 increasing,

Speaker:

and with age being the greatest

risk factor for dementia.

Speaker:

I mean, we really have, and

then this obviously echoed

Speaker:

with our steering committee

with the alliance,

Speaker:

a real crisis on our hands.

Speaker:

And so Raj already mentioned

nurse practitioners,

Speaker:

physicians, associates, social workers,

Speaker:

these are actually parts

of our healthcare workforce

Speaker:

that are actually growing.

Speaker:

And so emphasising the

need to recruit, train,

Speaker:

and have them part of these

interprofessional care teams

Speaker:

is really critical.

Speaker:

And then I think the third recommendation

Speaker:

and our theme one with the

need for training curriculum,

Speaker:

again, all up and down the chain

Speaker:

from paraprofessionals to the

highest level of professionals

Speaker:

who are licenced.

Speaker:

And we provide some, you

know, recommendations

Speaker:

for different programmes

that have been developed

Speaker:

and supported, whether we

provided online, video,

Speaker:

you know, in-person and just

tried to show the range.

Speaker:

One of the things that I took away

Speaker:

from our expert round table was,

Speaker:

you know, there is that

online, there's the video.

Speaker:

But until you actually are face-to-face

Speaker:

with the person living

dementia, with the family,

Speaker:

it's a journey of one, right?

Speaker:

And so the need to customise, understand.

Speaker:

And, you know, I also,

Speaker:

you think about the care navigator all

Speaker:

and some of the personal characteristics

Speaker:

that we talked about and and emphasise is,

Speaker:

you know, someone who's just, by nature,

Speaker:

someone who's empathetic, empathy.

Speaker:

And boy, that's a characteristic you,

Speaker:

it's hard to train for and

you just have it, right?

Speaker:

And so we look, you know,

we talk about really looking

Speaker:

for that no matter what level you are.

Speaker:

And just to see the folks

who work in this space

Speaker:

that we have the privilege

of interacting with

Speaker:

through our alliance

or through our travels.

Speaker:

Incredible passion, incredible empathy,

Speaker:

and a shared understanding.

Speaker:

Many people have the lived experience

Speaker:

of having cared for a loved one.

Speaker:

And so, you know, kind of the,

Speaker:

"I wish I had a care navigator

when I went through this,"

Speaker:

you know, you often hear.

Speaker:

And then how can we make

this role available to all

Speaker:

as we move forward today

and moving forward?

Speaker:

- Yeah, so much of this really

seems to be about translating

Speaker:

across the different healthcare systems,

Speaker:

across the different settings,

across cultural boundaries.

Speaker:

You know, there's a lot

of versatility required

Speaker:

in this role, which is great.

Speaker:

- Yeah, and I think, you know,

one of the things we hear

Speaker:

from folks just in terms of the workforce

Speaker:

and that dementia-capable workforce

Speaker:

is that these are good jobs.

Speaker:

These are jobs that allow individuals

Speaker:

a high level of patient access.

Speaker:

It allows them to see a

career path in front of them.

Speaker:

It's just a matter of elevating them

Speaker:

within these interprofessional care team

Speaker:

so that their role is

made more significant,

Speaker:

their role is kind of

placed at the centre of

Speaker:

the physicians on one side, the

community on the other side,

Speaker:

the family, you know, on the other side.

Speaker:

And so I think, like Diane had mentioned,

Speaker:

recruiting initially is really difficult.

Speaker:

We talk to trainers all the time who say,

Speaker:

"We go through a period of training."

Speaker:

The minute, you know,

the person we're training

Speaker:

is in front of a family

confronted with some of the,

Speaker:

you know, hard decisions

and hard interactions

Speaker:

that take place, some of them, you know,

Speaker:

it's not for them, they realise.

Speaker:

But it's the ones with the empathy,

Speaker:

it's the ones with the lived

experience that can overcome

Speaker:

a lot of the difficulty

and the challenges.

Speaker:

And we need to do more to professionalise

Speaker:

the career path so that

people stick with it.

Speaker:

And, you know, we talk

about things like leveraging

Speaker:

existing certifications,

you know, for individuals

Speaker:

that can receive that recognition

for the care that they do,

Speaker:

formally recognises a person's skillset.

Speaker:

It elevates them within

the dementia care team.

Speaker:

So I think things like that

are things that we can do

Speaker:

to increase awareness

for kind of the benefits

Speaker:

of these types of roles

within dementia care.

Speaker:

- You both mentioned some of

the less-trainable aspects

Speaker:

of a successful care navigator.

Speaker:

But you also mentioned some

certification programmes

Speaker:

or learning resources that already exist.

Speaker:

Are there any that you

wanna highlight here

Speaker:

for those that might be

listening and thinking about

Speaker:

growing in their skills?

Speaker:

- Sure, I mean, I can just,

Speaker:

there's one, you know,

that we really highlighted.

Speaker:

It's a certified dementia

practitioner certificate

Speaker:

that really targets

healthcare professionals,

Speaker:

clergy, social workers, anybody

that's interacting with,

Speaker:

you know, people with cognitive decline.

Speaker:

It provides them with a

training and certification to,

Speaker:

you know, just elevate their role again.

Speaker:

There's other ones, you

know, that we highlight

Speaker:

in our report from CareAcademy,

HealthCare Interactive.

Speaker:

- (indistinct) one, Raj, that-

- Yeah.

Speaker:

(Diane speaks indistinctly)

Speaker:

It's starting to become requirements

Speaker:

at the state level for anybody

that's going into their home

Speaker:

to provide care for

individuals with dementia.

Speaker:

And, you know, there's certain amount of

Speaker:

continuing education

requirements so that they're

Speaker:

kind of familiar with symptom recognition,

Speaker:

triaging, disease education,

Speaker:

community referrals, things at that level

Speaker:

that can kind of keep

progressing, again, for families.

Speaker:

- Fantastic.

Speaker:

And I know that the report

itself will be linked

Speaker:

in the show notes for this episode

Speaker:

on the Dementia Researcher website.

Speaker:

So for folks looking for

those recommendations,

Speaker:

I think that they are linked

in the report, which is great.

Speaker:

So Diane, turning back to you,

Speaker:

dementia care is uniquely challenging

Speaker:

due to the profound impact

of Alzheimer's disease

Speaker:

and related dementias on

cognition, on behaviour,

Speaker:

on functional capacity,

so many different aspects.

Speaker:

What are some innovative

solutions proposed in your report

Speaker:

to address these challenges,

Speaker:

especially in terms of

supporting both the person

Speaker:

living with dementia but

also their care partner?

Speaker:

- Yes, you really nailed it on the head

Speaker:

in terms of the challenges,

Speaker:

particularly for the family

caregiver who really experiences

Speaker:

physical, emotional, financial

strain through the journey.

Speaker:

You know, oftentimes needing to leave

Speaker:

their work if they're

employed outside the home.

Speaker:

Oftentimes you'll find

it's a sandwich caregiver

Speaker:

who has also caring for children,

Speaker:

and never thought of themselves

and having to prepare

Speaker:

for this long journey that can, you know,

Speaker:

average between four and seven years

Speaker:

and potentially as long

as 20, so imagine that.

Speaker:

But in terms of some of the solutions,

Speaker:

certainly we advocate for

the caregiver training,

Speaker:

respite care.

Speaker:

We're really excited, I know, you know,

Speaker:

particularly US-focused,

we talked a lot about

Speaker:

one of the biggest barriers to scaling

Speaker:

this care navigator role is the payment,

Speaker:

the lack of payment.

Speaker:

So we have a whole section,

the whole theme too is around,

Speaker:

you know, the need for reimbursement,

Speaker:

payment, incentives, alignment.

Speaker:

And so our report came

out in March of 2023.

Speaker:

It's already outta date (chuckles)

Speaker:

because in July of this

year, very exciting,

Speaker:

our Centre for Medicare and

Medicaid Innovation, CMMI,

Speaker:

announced this new model called GUIDE.

Speaker:

And you know, it is really breakthrough.

Speaker:

It's an alternative payment model.

Speaker:

And it includes the care navigator role

Speaker:

as being part of the

interprofessional care team.

Speaker:

So GUIDE stands for Guiding an

Improved Dementia Experience.

Speaker:

So it's offering a monthly per

beneficiary per month payment

Speaker:

to support this interdisciplinary

approach to care delivery,

Speaker:

must include the care

navigator on the team.

Speaker:

It includes an allocation annually

Speaker:

for caregiver respite.

Speaker:

So, you know, I really

applaud our colleagues

Speaker:

at CMMI for the listening they did.

Speaker:

I applaud the incredible

advocacy work that was done

Speaker:

by the Alzheimer's

Association that put forth

Speaker:

this bipartisan legislation

Speaker:

called the Comprehensive

Care for Alzheimer's Act.

Speaker:

We also helped amplify

an economic analysis

Speaker:

that was commissioned by

the Alzheimer's Association

Speaker:

and conducted by Health Sperion

Speaker:

to show that better

dementia care would save

Speaker:

our federal government nearly,

Speaker:

I think like $21 billion over 10 years.

Speaker:

That's how game changing,

again, putting in place

Speaker:

a comprehensive dementia

care approach can mean.

Speaker:

And again, caregiver support,

24/7 access to support.

Speaker:

This is game changing.

Speaker:

Now, we're actually, just

yesterday we saw the release

Speaker:

of the RFP, the request for proposal,

Speaker:

asking for health systems to apply

Speaker:

to be part of this demonstration.

Speaker:

It's going to be eight years.

Speaker:

So, you know, progress.

Speaker:

- And then there's a big emphasis

Speaker:

on making sure that this GUIDE model

Speaker:

impacts underserved communities also.

Speaker:

- Yes, (indistinct) could be-

- Fantastic.

Speaker:

- Core to this GUIDE model,

which we're excited about.

Speaker:

- So for folks outside the

US, it may be challenging

Speaker:

to understand what a

monumental change this is.

Speaker:

Could you maybe give folks

an idea of how more classic

Speaker:

kind of Fee-For-Service

model might have limited

Speaker:

implementation of this

dementia care navigator role

Speaker:

or model?

- Yeah.

Speaker:

So, you know, and

Fee-For-Service is, you know,

Speaker:

you're kind of paying,

you're using these CPT codes

Speaker:

for all the different

things that you're doing

Speaker:

as a provider.

Speaker:

It didn't cover things

like caregiver respite,

Speaker:

didn't cover things

like caregiver training,

Speaker:

or you know, any referrals.

Speaker:

So we talk a lot about diagnose and adios.

Speaker:

That family would be left to

just navigate on their own,

Speaker:

not only the medical care,

Speaker:

the appointments that Raj referred to,

Speaker:

trying to find the specialist if needed,

Speaker:

and then getting the

referrals in the community.

Speaker:

That was not compensated,

that was not paid for

Speaker:

by Fee-For-Service Medicare

Speaker:

and certainly not the

dementia care navigator role.

Speaker:

And I think our report,

Speaker:

and certainly these evidence-based models

Speaker:

that we highlighted, the six of them

Speaker:

that show those eight comprehensive

Speaker:

core elements as part of

these evidence-based models.

Speaker:

Most of those pieces weren't covered.

Speaker:

They are now as part of this GUIDE model.

Speaker:

So it's really incredible the partnership

Speaker:

that went into advocating and, you know,

Speaker:

CMMI really seeing the crisis at hand

Speaker:

and hearing story after story of families

Speaker:

trying to navigate this

tough journey on their own

Speaker:

and needing the supports.

Speaker:

So this is really, really

monumental in the US.

Speaker:

- Amazing.

Speaker:

Raj, one outcome of the

global COVID-19 pandemic

Speaker:

was this rapid

implementation of telehealth.

Speaker:

One of the things I really

liked about your report

Speaker:

was the emphasis on

leveraging online technology,

Speaker:

technology-based solutions

for dementia care navigation.

Speaker:

Could you give some

examples of how technology

Speaker:

and telehealth could aid

care navigators in managing

Speaker:

the daily tasks and

providing virtual support

Speaker:

to those living with dementia

and their caregivers?

Speaker:

- Sure, I think it's

important to note first off,

Speaker:

with all of the conversations

around technology that,

Speaker:

(coughs) excuse me,

Speaker:

dementia is a very

high-touch, high-need area

Speaker:

that really requires a

lot of direct interaction.

Speaker:

And I think during COVID,

without that direct interaction,

Speaker:

we saw tremendous suffering.

Speaker:

We saw an increase in

excess deaths, you know,

Speaker:

as it relates to Alzheimer's

and dementia care.

Speaker:

So I think, you know, that

level of care is really, really,

Speaker:

can't be emphasised enough.

Speaker:

So that being said, I

think there's technologies

Speaker:

that we highlight in our

report that will give providers

Speaker:

and care navigators and other

healthcare professionals

Speaker:

more of an opportunity to

increase that interaction.

Speaker:

And so that's the kind

of area of technology

Speaker:

that we try to address

and try to make a focus

Speaker:

of dementia care.

Speaker:

And so I think, you know,

there's three buckets

Speaker:

of technology that we really emphasise.

Speaker:

One is around facilitating communication,

Speaker:

making sure that families

can access providers,

Speaker:

can access the information

that they're needed,

Speaker:

can access community

supports that are needed.

Speaker:

Things like Zoom for

telehealth, like you mentioned,

Speaker:

is invaluable for caregivers that can't,

Speaker:

that need to be in the home,

Speaker:

that need to access their providers,

Speaker:

you know, in real time almost

to address certain situations.

Speaker:

I think the other area of technology

Speaker:

that we really talk

about is care navigators

Speaker:

that can use tools to

help track and manage care

Speaker:

in real time.

Speaker:

And so, you know, there's

a whole need to help

Speaker:

coordinate care and manage care

Speaker:

among various healthcare professionals.

Speaker:

And so this category of tools really helps

Speaker:

to streamline care planning,

Speaker:

helps manage or track

medication management

Speaker:

and kind of overall daily

activities that, you know,

Speaker:

care navigators can then

report back to physicians

Speaker:

and maintain that level of

communication with with families.

Speaker:

And I think the third

area is really, you know,

Speaker:

providing forums for peer-to-peer support,

Speaker:

you know, for access to information.

Speaker:

There's a whole area of

virtual support tools

Speaker:

that are emerging that allow

care navigators, again,

Speaker:

to access information,

pass it onto families

Speaker:

that need them that is becoming

kind of a central technology

Speaker:

within dementia care.

Speaker:

And then because we need to talk about AI,

Speaker:

you know, there's a

whole world of AI tools

Speaker:

that are really beneficial

to help kind of automate

Speaker:

repetitive tasks, you know, that go on,

Speaker:

that can automate scheduling appointments.

Speaker:

They can analyse data from

health records to raise,

Speaker:

you know, red flags to help triage

Speaker:

kind of patient journeys

Speaker:

as they go between different stages.

Speaker:

You know, they can identify

when more resources

Speaker:

need to be allocated.

Speaker:

And then there's a whole world

Speaker:

of kind of personalised

recommendations, you know,

Speaker:

that can be utilised through

some of these machine learning

Speaker:

and artificial intelligence tools also.

Speaker:

- It's quite incredible

to see the AI applications

Speaker:

and how they could really revolutionise

Speaker:

and enhance the care that

we're already giving.

Speaker:

So, Diane, before we wrap up,

Speaker:

what do you think are the main

takeaways from this report,

Speaker:

and what would you like

to see happen next?

Speaker:

- I mean, I think the main takeaway

Speaker:

is the game-changing role

that a care navigator

Speaker:

can have in the dementia care journey,

Speaker:

benefiting health systems.

Speaker:

We know that having a care

navigator can save costs

Speaker:

and really for that family, the

person living with dementia,

Speaker:

and the family caregiver, you

know, again, game changing,

Speaker:

to have someone walking

alongside them on this journey.

Speaker:

So my hope is that, you

know, that the GUIDE model,

Speaker:

this demonstration project

goes very, very well.

Speaker:

And you know, maybe

before the eight years,

Speaker:

we see wonderful evidence

and then can roll this out

Speaker:

and scale it, you know,

to benefit all families.

Speaker:

So that's my wish.

Speaker:

- Great. Thanks so much.

(bright music)

Speaker:

I'm afraid that is all

we have time for today.

Speaker:

Don't forget that you can

find a link to the report

Speaker:

in our show notes.

Speaker:

And if you visit the

Dementia Researcher website,

Speaker:

you'll find a full transcript,

biographies on our guests,

Speaker:

blogs, and much more on this topic.

Speaker:

I'd like to thank our

incredible guests, Diane Ty

Speaker:

and Rajiv Ahuja, and of

course the Milken Institute

Speaker:

for their fantastic work.

Speaker:

I'm Dr. Annalise Rahman-Filipiak,

and you've been listening

Speaker:

to the "Dementia Researcher" podcast.

Speaker:

Bye, everyone.

- Thank you. Bye.

Speaker:

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Speaker:

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Speaker:

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Speaker:

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Alzheimer's Research UK,

Speaker:

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Alzheimer's Association,

Speaker:

and Race Against Dementia.

Speaker:

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Speaker:

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Speaker:

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Speaker:

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