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

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

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

• Download the report: bit.ly/3uEgvtq
• Visit the Milken website: milkeninstitute.org/

About the guests:

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

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

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

A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.

If you prefer to watch rather than listen, you will find a video version of this podcast on YouTube, on our website, and in selected podcast platforms.

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- [Announcer] The "Dementia

Researcher" podcast,

talking careers, research,

conference highlights,

and so much more.

- Welcome to the "Dementia

Researcher" podcast.

I'm Dr. Annalise Rahman-Filipiak.

I'm a neuropsychologist

and assistant professor

at the Research Programme on Cognition

and Neuromodulation-Based Interventions

here at the University of Michigan.

And today I have the pleasure of hosting

Diane Ty and Rajiv Ahuja,

authors of a pivotal report

from the Milken Institute.

The report titled,

"Guiding the Care Journey"

was published a few months ago.

And it addresses the critical challenges

and presents innovative

solutions for dementia care

in the US, with a

particular focus on the role

of the care navigator.

Of course, we know that many

of our listeners are in the UK

and other parts of the world,

but the important

recommendations in the report

are relevant to all of us,

as we face similar

healthcare system challenges.

Now most countries are

expected to see a rise

in dementia cases in the coming years.

In fact, the World

Health Organisation says

that the 55 million cases

will increase to 139 million by 2050.

So our discussion today will shed light

on what our guests have uncovered

about how we can improve care for people

living with dementia and their families,

and how people that deliver

that care are important.

So let's start by meeting our guests.

(bright music)

Hi, Diane, and hello, Raj.

- Hi, Annalise.

- Hi.

- How you both doing?

- We're good, thank you.

- Doing great. Thanks.

- Diane, why don't you start by telling us

a little bit about yourself?

- So I lead the Milken Institute Centre

for the Future of Ageing, where

we work at the intersection

of healthy longevity and

financial care security.

We do that through research, convenings,

multi-sector partnerships,

and the elevation of high-impact

policies and practises.

I've been here for almost three years,

and before that I was a senior partner

at Georgetown University

School of Business

working in a group called

Business for Impact.

I spent time at AARP, AARP Services,

the for-profit subsidiary of AARP,

and just Save the Children,

and then I spent about a

decade at American Express.

So I love working across

the public, private,

nonprofit sectors, and

that's what this job is.

- Fantastic. Thanks so

much for being here.

Raj, how about you?

- Yeah, thanks, Annalise. I

appreciate this opportunity.

I work closely with Diane

in our Centre for the Future of Ageing

here at the Milken Institute.

And work with Diane to manage our alliance

to improve dementia care, which

is a broad-based coalition

of over 130 dementia-focused organisations

that are really looking

to improve how healthcare

and long-term care services are delivered

to people at risk for dementia

and living with dementia,

as well as their families.

I've been at the Milken Institute

for about four and a half years

and come from a background

in healthcare policy,

doing consulting for

pharmaceutical companies,

for health plans, military health,

all with the goal of

trying to increase access

to care services and

products for everyone.

So I'm happy to be here

to talk about this topic.

Appreciate it.

- Well, thanks for being here,

both of you and sharing

your vast expertise with us.

(bright music)

Diane, let's start with an easy question.

Could you give us a high-level

intro about this report,

how it came about, and maybe why you think

this topic is so important?

- Sure, so as Raj mentioned,

we have this alliance

to improve dementia care

over 130 multi-sector,

you know, multi-stakeholder members.

And our steering committee in particular,

we consult with them from time to time.

We meet bimonthly, and you know,

we were really asking

them what is the area

that we, as a cross-collaborative group,

should be focused on?

And the topic of workforce,

a dementia-capable workforce came up.

Raj was instrumental in getting

our alliance off the ground.

I joined in December, 2020.

So we've been around

for about three years.

And our steering committee just represents

this whole cross sector.

So we all agree that workforce shortages

is a critical area of concern.

And so we set out to look

at what does that mean?

We had a working group, we

do our round table convening.

It's a private session,

Chatham House rules.

We come up with consensus-based

recommendations,

it's peer reviewed, and that's

how we release the report.

But this topic of dementia care navigator

and that role was front

and centre as we did our,

you know, went through our process.

And then this really came

to light as a key area,

game-changing role for dementia care.

- Awesome.

One of the things I thought

was that was really unique

about your dementia care alliance

and maybe the steering

committee is the input

that you get too from

people living with dementia

and their families.

- Absolutely, and so for each

of our private round tables,

we start out with someone,

you know, living with dementia

or caregiver caring

for loved one dementia,

really just giving kind of a,

you know, a sharing the experience.

And it really then just sets the tone

for why we're all here.

What I'm amazed at is the

number of people, members,

including myself, who've

had a personal experience

caring for a loved one with dementia.

I lost my dad to Alzheimer's 11 years ago.

And it still feels really

raw after all this time.

And this is why we're

so motivated to improve

that care journey for the

people living with dementia

as well as their family caregivers.

- Yeah, it's very clear that

you both bring that passion,

that personal passion to this work.

Raj, the report highlights

a significant challenge

in meeting these growing

demands for dementia care,

especially given this expected

doubling of individuals

living with Alzheimer's disease

and related dementias by 2040.

What are some key strategies

to address the shortage

in what you call the

dementia-capable workforce,

the medical providers

with specialised training

in dementia care?

- Thanks, Annalise.

I think, you know,

you're absolutely right.

Here in the US, our healthcare system,

our long-term care system is really facing

significant challenges

right now in meeting

this growing demand for dementia care.

I think especially the

statistic that you cited

in terms of doubling of the population

is really gonna impact

how services are delivered

in cities, in rural populations,

in underserved populations,

low-income populations

all are gonna be impacted

by the shortage of a workforce.

And so I think when you think

of this growing population

and the capacity constraints

that come with it,

you know, the workforce is

really going to be at the centre

of efforts to improve dementia care.

And we know that moving forward,

there's gonna be a shortage

of primary care physicians, geriatricians,

specialists, and direct

skilled care workers.

I think there's statistics

that show, you know,

over the next couple

decades there's going to be,

there's gonna need to be a quadrupling

of the number of geriatricians

in order to meet this demand.

And so I think, you know, it

requires a little bit more

foresight in terms of filling that need

for this growing population,

when what we really need is, you know,

a comprehensive dementia-capable

and culturally-sensitive

workforce, you know,

that's highly coordinated,

that's trained specifically

in dementia care and

can recognise symptoms

and make the necessary community referrals

and are familiar with the available tools

and resources that are out there.

You know, we know that this

dementia-capable workforce

is going to need to represent

a broad range of interests.

So, you know, how do

we go about doing that?

You know, I don't think

it's going to be realistic

to train as many primary care physicians

and geriatricians that we need.

So how do we go about addressing this?

And I think, you know, at its very core,

we really need to start

expanding the definition

of what that workforce is.

You know, we need to include

everyone that interacts

with high-risk individuals and

families living with dementia

that's either a current

healthcare professional,

a future healthcare

professional, including nurses,

community health workers,

and long-term care workers.

And I think even family members,

family caregivers are all

going to need to be part

of this expanded definition of workforce.

And so, you know, in our report,

we outline a number of strategies also

to increase the

dementia-capable workforce.

And we really focus a lot on

efforts to increase recruiting,

increase training, and increase retention

of the dementia-capable workforce.

And I would just kind

of note that, you know,

with the growing shortage

of healthcare professionals,

there are some bright spots there also.

We know that certain professions

within the healthcare

industry are growing.

Nurse practitioners in

particular is a growing field,

physician associates are a growing field,

social workers are a growing field.

And so these are all ripe

associations to recruit from,

to train and really

bring into this dementia

conversation in terms of workforce.

- Fantastic.

I think that's a great

lead into my next question.

It may be useful for our listeners,

given the broad

listenership of the podcast,

to hear a little more about this role

as it might not be quite

so common outside the US.

So Diane, the report

defines care navigators

or care navigation as

individualised assistance

to patients and caregivers

to facilitate access

to quality health and psychosocial care.

Maybe you could tell us

a bit more about the role

of care navigators, what

settings they might work in,

what are some personal or

professional qualifications

of the care navigator.

- Sure. Thanks, Annalise.

So absolutely, this care navigation role,

I wanna start by just saying it's a role

that's actually common in

cancer care, diabetes care.

And what we did is we had a prior report

to this one called

"Scaling Comprehensive

Dementia Care Models."

And in that we focused on

the eight core elements

that define a comprehensive

dementia care model,

of which there are six

evidence-based ones.

And we talk about them in not only

the "Scaling Comprehensive

Dementia Care" report,

but we also reference

them in this new report

on guiding the care journey.

So they include the eight core elements

include things like caregiver support,

medication management, care coordination,

ongoing care planning.

And we looked at the different models

where some are telephonic-based

or online-based,

some are community or home-based

and some are clinically-based.

You can just see that range,

and I'll mention the six.

Most of them focus

within academic settings.

So there's a UCLA dementia care programme,

University of California San

Francisco Care Ecosystem,

which is the telephone-based one.

Emory University's

Integrated Memory Care model.

Benjamin Rose Institute, and

then the Eskenazi Health one

at Indiana University, and then MIND,

Maximising Independence at Home,

that comes out of John Hopkins University.

These are all awesome models,

but what we looked at is

these eight core elements,

while necessary, we don't think

they're all created equal.

So we kind of took a step back and said,

"What among these eight could

be actually game changing

if we could get this one role focused on?"

So it was that care coordination role.

So someone who's actually

helping the person

living with dementia and

the family caregiver,

that care dyad that we refer to,

navigate our complex health

system, our healthcare system,

and the social care system,

all the types of social care services

that are outside the medical setting

delivered mostly by

community-based organisations.

So transportation, meals,

caregiver training, support,

respite care, all of these

are really critical parts

of the dementia care model.

And so, you know, we did these

key opinion leader interviews,

we had a round table,

all of this started bubbling up,

like if we can define this model.

And you'll see a chart in our report

that organises advice setting.

One of the things that's a bit confusing

that we acknowledge too in the report

is the name of this role,

dementia care specialist, which

is used in Wisconsin state

to reference non-licensed

care paraprofessionals.

That dementia care specialist is also used

in the clinical care

model offered by UCLA,

care coordinator, and so

we wanted to acknowledge

that even that, depending

on the care models,

can be confusing, venture care specialist,

venture care coordinator, on and on.

But essentially the role is

to be that sort of guide,

you know, all along the way

knowing when to escalate

and elevate the care,

when to bring the person,

if they're evolving or progressing

in their dementia care journey,

what we might need to do.

Is there medication management?

And bringing in the right

intervention at that time

and being part of an

interprofessional care team.

So really core to that

interprofessional care team,

care navigator and caregiver,

as well as the clinical folks.

So I hope that answered your question.

- I think so, yeah. That's

fantastic information.

It really strikes me, oh, go ahead-

- Annalise, can I just jump in-

- Yeah, please.

- To kind of piggyback

off of what Diane said.

You know, this position is

a really versatile position.

And I think, you know,

we talk so much about

the unique journey of families

that live with dementia.

You know, it's a progressive disease

that requires different

interventions at different stages.

And so I think, you know, the care models

that Diane mentioned, you know,

some are more on the medical

side of care for folks

with more advanced needs

that require, you know, more

of medication management,

that require more therapeutics.

But there's a whole group of

individuals at early stages

that really need access to education,

access to appointment, you know,

facilitation among the

fragmented specialists

that they have to see.

And so I think this care

navigator, you know,

is very versatile in terms

of being able to provide

those services along that spectrum

of the disease journey

that a lot of families

have trouble navigating.

So I just wanted to

throw that in there too.

- And just to piggyback on what Raj said,

you know, we look at a

population-health approach.

So if you think about like a care pyramid

with the folks at the

bottom, as Raj mentioned,

maybe in that early stage,

if they're diagnosed,

they might just need more

of that care and handholding

and navigation all the way

to the top of the pyramid

where you have more of

a moderate to advanced

stage of the disease where you

may have behavioural issues

and need for therapeutics

and much more care,

and so delivered at the higher level

of your licenced care professionals,

like your nurse practitioners,

your geriatricians.

So yeah, it's a very versatile role.

- Yeah, I really think that

leveraging paraprofessionals

is just an amazing part of

this set of recommendations.

And part because in my

experience, I think a lot

of our paraprofessionals

have a great knowledge

of the community, often have

the trust of the community.

- Absolutely, yes.

- And particularly when we're talking

about marginalised communities,

individuals who may have less access to

or trust in the healthcare system,

that could be a massive strength.

- We are actually writing an update to one

of the other reports we did,

which was building the

workforce to improve

early detection and diagnosis of dementia.

And since then, that

And we've seen such a sea change going on

with what's going on with dementia space.

And we did a lit review and all,

and it's really pointing to

is community health workers.

To your point, they're from

the community, they're trusted,

they're culturally competent,

linguistically capable in many cases.

And we see such a disproportionate risk

of people with dementia in terms of,

you know, Blacks two times more likely,

Hispanics one and a

half times more likely.

We don't know offhand the

dementia risks for AAPIs,

but Raj and I actually

co-authored an article

to try to shine a light on

the fact that, you know,

one size does not fit all.

So if we lump AAPIs together in one group,

there's many different ethnic backgrounds,

socioeconomic backgrounds,

ethnic backgrounds

within the AAPI community.

And we strongly believe that

there's disproportionate risk

for certain subpopulations of the AAPI.

So absolutely those

trusted community workers.

- Mm-hm.

And for listeners outside the US,

I also wanna mention

that, you know, Diane,

you just mentioned that

we see that, for instance,

Black and African American

patients are twice as likely

to have Alzheimer's disease

but tend to be diagnosed

much later and much less frequently.

We also know that their care partners

tend to have a disproportionate

burden of caregiving.

So they're get caregiving full-time,

they're caregiving at later

stages of the disease.

So I'd love to talk more

about how the care navigator

might address that specific disparity.

Raj, maybe you could tell

us a bit more about that.

- Sure.

You know, I think it's

so critical to, you know,

highlight how complex

dementia care is in general.

There's so many specialists

that families have to see,

you know, the issue of

access to care is, you know,

front and centre for everyone

living with dementia.

But I think, you know, there's

been longstanding disparities

that things like COVID had highlighted

that really impact families

in underserved communities

that are living with dementia.

And so when we talk about

underserved communities,

you know, we talk about

racial and ethnic disparities

of which there are major discrepancies,

you know, in access to care.

We talk about rural versus

urban access to care.

You know, there's a tremendous

issue with just being able

to see primary care physicians

in rural communities.

And we also talk about low

socioeconomic communities

in terms of the cost of care to families.

They spend more out of pocket

than other communities.

And so I think, you

know, one of the things

that care navigation does

is it really highlights

the need for a comprehensive

approach to dementia care

and places the care

navigator at the centre

of that approach.

So families often have

a hard time engaging

with their providers.

They have a hard time navigating

the multiple requirements

that are needed in terms of appointments.

They have a hard time

applying for benefits.

And so care navigators can

really be that point of contact

for families to help with things

like applying for benefits

that they need,

for making

culturally-appropriate referrals

into the community.

You know, we know that a lot

of dementia care takes place

outside of formal healthcare systems

and really takes place in the community,

and the access to those community

supports is really needed,

you know, for individuals in

these diverse communities.

And, you know, care navigators

are trained to understand

what is available in

terms of nutrition access,

in terms of some of the

physical interventions

that are applicable to education,

to resources for, you know, understanding

the modifiable risk

factors that are needed,

and really making that a more kind of

culturally-appropriate referral.

And so I think those care navigators,

like the community health

workers that Diane had mentioned,

you know, represent those families.

We in our report make

recommendations to recruit

from underserved communities

so that those care navigators

speak the language, so

that's not a barrier.

They can engage

compassionately with families

and connect them to providers as needed.

They can be the voice of caregivers.

'Cause a lot of times caregivers

in underrepresented communities

experience a higher burden

to their health.

They experience a higher burden

in terms of out-of-pocket expenses.

And so I think that care

navigator as kind of the liaison

among all the different fragmented systems

in dementia care really provide, you know,

more of that access

into the care, you know,

some of those underserved

communities have traditionally

had a hard time with.

- Fantastic.

Thanks for sharing that.

So Diane, your report makes

six key recommendations

with the first theme focusing

on developing a framework

for care navigation on

dementia care teams.

Can you discuss the importance

of these recommendations

and how they may be

effectively implemented?

- Sure, so yeah, the

first theme was around,

you know, really looking at the

dementia care navigator role

in the various care settings,

which I've already mentioned,

the telephone or online,

home and community-based

and clinical setting.

We do this chart that

looks at the licencing

and non-licensing, emphasising

no matter what that area

or level of professional

or paraprofessional,

they need dementia-specific training.

And then we have our second

recommendation was around,

I think Raj already mentioned this,

recruitment efforts to really bolster

the dementia-trained workforce.

So we looked at the shortages

of both primary care

physicians and specialists.

And when we refer to specialists,

there are really four types:

there's the neurologist,

the geriatric psychiatrist,

geriatricians and neuropsychologists.

That's defined by the

Alzheimer's Association.

We're gonna have a shortage

of anywhere from 21

to 55,000 primary care physicians by 2032,

even more so with geriatricians,

just at a time when our population

is of people over 65 increasing,

and with age being the greatest

risk factor for dementia.

I mean, we really have, and

then this obviously echoed

with our steering committee

with the alliance,

a real crisis on our hands.

And so Raj already mentioned

nurse practitioners,

physicians, associates, social workers,

these are actually parts

of our healthcare workforce

that are actually growing.

And so emphasising the

need to recruit, train,

and have them part of these

interprofessional care teams

is really critical.

And then I think the third recommendation

and our theme one with the

need for training curriculum,

again, all up and down the chain

from paraprofessionals to the

highest level of professionals

who are licenced.

And we provide some, you

know, recommendations

for different programmes

that have been developed

and supported, whether we

provided online, video,

you know, in-person and just

tried to show the range.

One of the things that I took away

from our expert round table was,

you know, there is that

online, there's the video.

But until you actually are face-to-face

with the person living

dementia, with the family,

it's a journey of one, right?

And so the need to customise, understand.

And, you know, I also,

you think about the care navigator all

and some of the personal characteristics

that we talked about and and emphasise is,

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

someone who's empathetic, empathy.

And boy, that's a characteristic you,

it's hard to train for and

you just have it, right?

And so we look, you know,

we talk about really looking

for that no matter what level you are.

And just to see the folks

who work in this space

that we have the privilege

of interacting with

through our alliance

or through our travels.

Incredible passion, incredible empathy,

and a shared understanding.

Many people have the lived experience

of having cared for a loved one.

And so, you know, kind of the,

"I wish I had a care navigator

when I went through this,"

you know, you often hear.

And then how can we make

this role available to all

as we move forward today

and moving forward?

- Yeah, so much of this really

seems to be about translating

across the different healthcare systems,

across the different settings,

across cultural boundaries.

You know, there's a lot

of versatility required

in this role, which is great.

- Yeah, and I think, you know,

one of the things we hear

from folks just in terms of the workforce

and that dementia-capable workforce

is that these are good jobs.

These are jobs that allow individuals

a high level of patient access.

It allows them to see a

career path in front of them.

It's just a matter of elevating them

within these interprofessional care team

so that their role is

made more significant,

their role is kind of

placed at the centre of

the physicians on one side, the

community on the other side,

the family, you know, on the other side.

And so I think, like Diane had mentioned,

recruiting initially is really difficult.

We talk to trainers all the time who say,

"We go through a period of training."

The minute, you know,

the person we're training

is in front of a family

confronted with some of the,

you know, hard decisions

and hard interactions

that take place, some of them, you know,

it's not for them, they realise.

But it's the ones with the empathy,

it's the ones with the lived

experience that can overcome

a lot of the difficulty

and the challenges.

And we need to do more to professionalise

the career path so that

people stick with it.

And, you know, we talk

about things like leveraging

existing certifications,

you know, for individuals

that can receive that recognition

for the care that they do,

formally recognises a person's skillset.

It elevates them within

the dementia care team.

So I think things like that

are things that we can do

to increase awareness

for kind of the benefits

of these types of roles

within dementia care.

- You both mentioned some of

the less-trainable aspects

of a successful care navigator.

But you also mentioned some

certification programmes

or learning resources that already exist.

Are there any that you

wanna highlight here

for those that might be

listening and thinking about

growing in their skills?

- Sure, I mean, I can just,

there's one, you know,

that we really highlighted.

It's a certified dementia

practitioner certificate

that really targets

healthcare professionals,

clergy, social workers, anybody

that's interacting with,

you know, people with cognitive decline.

It provides them with a

training and certification to,

you know, just elevate their role again.

There's other ones, you

know, that we highlight

in our report from CareAcademy,

HealthCare Interactive.

- (indistinct) one, Raj, that-

- Yeah.

(Diane speaks indistinctly)

It's starting to become requirements

at the state level for anybody

that's going into their home

to provide care for

individuals with dementia.

And, you know, there's certain amount of

continuing education

requirements so that they're

kind of familiar with symptom recognition,

triaging, disease education,

community referrals, things at that level

that can kind of keep

progressing, again, for families.

- Fantastic.

And I know that the report

itself will be linked

in the show notes for this episode

on the Dementia Researcher website.

So for folks looking for

those recommendations,

I think that they are linked

in the report, which is great.

So Diane, turning back to you,

dementia care is uniquely challenging

due to the profound impact

of Alzheimer's disease

and related dementias on

cognition, on behaviour,

on functional capacity,

so many different aspects.

What are some innovative

solutions proposed in your report

to address these challenges,

especially in terms of

supporting both the person

living with dementia but

also their care partner?

- Yes, you really nailed it on the head

in terms of the challenges,

particularly for the family

caregiver who really experiences

physical, emotional, financial

strain through the journey.

You know, oftentimes needing to leave

their work if they're

employed outside the home.

Oftentimes you'll find

it's a sandwich caregiver

who has also caring for children,

and never thought of themselves

and having to prepare

for this long journey that can, you know,

average between four and seven years

and potentially as long

as 20, so imagine that.

But in terms of some of the solutions,

certainly we advocate for

the caregiver training,

respite care.

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

particularly US-focused,

we talked a lot about

one of the biggest barriers to scaling

this care navigator role is the payment,

the lack of payment.

So we have a whole section,

the whole theme too is around,

you know, the need for reimbursement,

payment, incentives, alignment.

And so our report came

It's already outta date (chuckles)

because in July of this

year, very exciting,

our Centre for Medicare and

Medicaid Innovation, CMMI,

announced this new model called GUIDE.

And you know, it is really breakthrough.

It's an alternative payment model.

And it includes the care navigator role

as being part of the

interprofessional care team.

So GUIDE stands for Guiding an

Improved Dementia Experience.

So it's offering a monthly per

beneficiary per month payment

to support this interdisciplinary

approach to care delivery,

must include the care

navigator on the team.

It includes an allocation annually

for caregiver respite.

So, you know, I really

applaud our colleagues

at CMMI for the listening they did.

I applaud the incredible

advocacy work that was done

by the Alzheimer's

Association that put forth

this bipartisan legislation

called the Comprehensive

Care for Alzheimer's Act.

We also helped amplify

an economic analysis

that was commissioned by

the Alzheimer's Association

and conducted by Health Sperion

to show that better

dementia care would save

our federal government nearly,

I think like $21 billion over 10 years.

That's how game changing,

again, putting in place

a comprehensive dementia

care approach can mean.

And again, caregiver support,

24/7 access to support.

This is game changing.

Now, we're actually, just

yesterday we saw the release

of the RFP, the request for proposal,

asking for health systems to apply

to be part of this demonstration.

It's going to be eight years.

So, you know, progress.

- And then there's a big emphasis

on making sure that this GUIDE model

impacts underserved communities also.

- Yes, (indistinct) could be-

- Fantastic.

- Core to this GUIDE model,

which we're excited about.

- So for folks outside the

US, it may be challenging

to understand what a

monumental change this is.

Could you maybe give folks

an idea of how more classic

kind of Fee-For-Service

model might have limited

implementation of this

dementia care navigator role

or model?

- Yeah.

So, you know, and

Fee-For-Service is, you know,

you're kind of paying,

you're using these CPT codes

for all the different

things that you're doing

as a provider.

It didn't cover things

like caregiver respite,

didn't cover things

like caregiver training,

or you know, any referrals.

So we talk a lot about diagnose and adios.

That family would be left to

just navigate on their own,

not only the medical care,

the appointments that Raj referred to,

trying to find the specialist if needed,

and then getting the

referrals in the community.

That was not compensated,

that was not paid for

by Fee-For-Service Medicare

and certainly not the

dementia care navigator role.

And I think our report,

and certainly these evidence-based models

that we highlighted, the six of them

that show those eight comprehensive

core elements as part of

these evidence-based models.

Most of those pieces weren't covered.

They are now as part of this GUIDE model.

So it's really incredible the partnership

that went into advocating and, you know,

CMMI really seeing the crisis at hand

and hearing story after story of families

trying to navigate this

tough journey on their own

and needing the supports.

So this is really, really

monumental in the US.

- Amazing.

Raj, one outcome of the

global COVID-19 pandemic

was this rapid

implementation of telehealth.

One of the things I really

liked about your report

was the emphasis on

leveraging online technology,

technology-based solutions

for dementia care navigation.

Could you give some

examples of how technology

and telehealth could aid

care navigators in managing

the daily tasks and

providing virtual support

to those living with dementia

and their caregivers?

- Sure, I think it's

important to note first off,

with all of the conversations

around technology that,

(coughs) excuse me,

dementia is a very

high-touch, high-need area

that really requires a

lot of direct interaction.

And I think during COVID,

without that direct interaction,

we saw tremendous suffering.

We saw an increase in

excess deaths, you know,

as it relates to Alzheimer's

and dementia care.

So I think, you know, that

level of care is really, really,

can't be emphasised enough.

So that being said, I

think there's technologies

that we highlight in our

report that will give providers

and care navigators and other

healthcare professionals

more of an opportunity to

increase that interaction.

And so that's the kind

of area of technology

that we try to address

and try to make a focus

of dementia care.

And so I think, you know,

there's three buckets

of technology that we really emphasise.

One is around facilitating communication,

making sure that families

can access providers,

can access the information

that they're needed,

can access community

supports that are needed.

Things like Zoom for

telehealth, like you mentioned,

is invaluable for caregivers that can't,

that need to be in the home,

that need to access their providers,

you know, in real time almost

to address certain situations.

I think the other area of technology

that we really talk

about is care navigators

that can use tools to

help track and manage care

in real time.

And so, you know, there's

a whole need to help

coordinate care and manage care

among various healthcare professionals.

And so this category of tools really helps

to streamline care planning,

helps manage or track

medication management

and kind of overall daily

activities that, you know,

care navigators can then

report back to physicians

and maintain that level of

communication with with families.

And I think the third

area is really, you know,

providing forums for peer-to-peer support,

you know, for access to information.

There's a whole area of

virtual support tools

that are emerging that allow

care navigators, again,

to access information,

pass it onto families

that need them that is becoming

kind of a central technology

within dementia care.

And then because we need to talk about AI,

you know, there's a

whole world of AI tools

that are really beneficial

to help kind of automate

repetitive tasks, you know, that go on,

that can automate scheduling appointments.

They can analyse data from

health records to raise,

you know, red flags to help triage

kind of patient journeys

as they go between different stages.

You know, they can identify

when more resources

need to be allocated.

And then there's a whole world

of kind of personalised

recommendations, you know,

that can be utilised through

some of these machine learning

and artificial intelligence tools also.

- It's quite incredible

to see the AI applications

and how they could really revolutionise

and enhance the care that

we're already giving.

So, Diane, before we wrap up,

what do you think are the main

takeaways from this report,

and what would you like

to see happen next?

- I mean, I think the main takeaway

is the game-changing role

that a care navigator

can have in the dementia care journey,

benefiting health systems.

We know that having a care

navigator can save costs

and really for that family, the

person living with dementia,

and the family caregiver, you

know, again, game changing,

to have someone walking

alongside them on this journey.

So my hope is that, you

know, that the GUIDE model,

this demonstration project

goes very, very well.

And you know, maybe

before the eight years,

we see wonderful evidence

and then can roll this out

and scale it, you know,

to benefit all families.

So that's my wish.

- Great. Thanks so much.

(bright music)

I'm afraid that is all

we have time for today.

Don't forget that you can

find a link to the report

in our show notes.

And if you visit the

Dementia Researcher website,

you'll find a full transcript,

biographies on our guests,

blogs, and much more on this topic.

I'd like to thank our

incredible guests, Diane Ty

and Rajiv Ahuja, and of

course the Milken Institute

for their fantastic work.

I'm Dr. Annalise Rahman-Filipiak,

and you've been listening

to the "Dementia Researcher" podcast.

Bye, everyone.

- Thank you. Bye.

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Researcher" podcast

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