- [Announcer] The "Dementia
Researcher" podcast,
Speaker:talking careers, research,
conference highlights,
Speaker:and so much more.
Speaker:- Welcome to the "Dementia
Researcher" podcast.
Speaker:I'm Dr. Annalise Rahman-Filipiak.
Speaker:I'm a neuropsychologist
and assistant professor
Speaker:at the Research Programme on Cognition
Speaker:and Neuromodulation-Based Interventions
Speaker:here at the University of Michigan.
Speaker:And today I have the pleasure of hosting
Speaker:Diane Ty and Rajiv Ahuja,
Speaker:authors of a pivotal report
from the Milken Institute.
Speaker:The report titled,
"Guiding the Care Journey"
Speaker:was published a few months ago.
Speaker:And it addresses the critical challenges
Speaker:and presents innovative
solutions for dementia care
Speaker:in the US, with a
particular focus on the role
Speaker:of the care navigator.
Speaker:Of course, we know that many
of our listeners are in the UK
Speaker:and other parts of the world,
Speaker:but the important
recommendations in the report
Speaker:are relevant to all of us,
Speaker:as we face similar
healthcare system challenges.
Speaker:Now most countries are
expected to see a rise
Speaker:in dementia cases in the coming years.
Speaker:In fact, the World
Health Organisation says
Speaker:that the 55 million cases
that were found in: Speaker:will increase to 139 million by 2050.
Speaker:So our discussion today will shed light
Speaker:on what our guests have uncovered
Speaker:about how we can improve care for people
Speaker:living with dementia and their families,
Speaker:and how people that deliver
that care are important.
Speaker:So let's start by meeting our guests.
Speaker:(bright music)
Speaker:Hi, Diane, and hello, Raj.
Speaker:- Hi, Annalise.
- Hi.
Speaker:- How you both doing?
Speaker:- We're good, thank you.
- Doing great. Thanks.
Speaker:- Diane, why don't you start by telling us
Speaker:a little bit about yourself?
Speaker:- So I lead the Milken Institute Centre
Speaker:for the Future of Ageing, where
we work at the intersection
Speaker:of healthy longevity and
financial care security.
Speaker:We do that through research, convenings,
Speaker:multi-sector partnerships,
Speaker:and the elevation of high-impact
policies and practises.
Speaker:I've been here for almost three years,
Speaker:and before that I was a senior partner
Speaker:at Georgetown University
School of Business
Speaker:working in a group called
Business for Impact.
Speaker:I spent time at AARP, AARP Services,
Speaker:the for-profit subsidiary of AARP,
Speaker:and just Save the Children,
Speaker:and then I spent about a
decade at American Express.
Speaker:So I love working across
the public, private,
Speaker:nonprofit sectors, and
that's what this job is.
Speaker:- Fantastic. Thanks so
much for being here.
Speaker:Raj, how about you?
Speaker:- Yeah, thanks, Annalise. I
appreciate this opportunity.
Speaker:I work closely with Diane
Speaker:in our Centre for the Future of Ageing
Speaker:here at the Milken Institute.
Speaker:And work with Diane to manage our alliance
Speaker:to improve dementia care, which
is a broad-based coalition
Speaker:of over 130 dementia-focused organisations
Speaker:that are really looking
to improve how healthcare
Speaker:and long-term care services are delivered
Speaker:to people at risk for dementia
and living with dementia,
Speaker:as well as their families.
Speaker:I've been at the Milken Institute
Speaker:for about four and a half years
Speaker:and come from a background
in healthcare policy,
Speaker:doing consulting for
pharmaceutical companies,
Speaker:for health plans, military health,
Speaker:all with the goal of
trying to increase access
Speaker:to care services and
products for everyone.
Speaker:So I'm happy to be here
to talk about this topic.
Speaker:Appreciate it.
- Well, thanks for being here,
Speaker:both of you and sharing
your vast expertise with us.
Speaker:(bright music)
Speaker:Diane, let's start with an easy question.
Speaker:Could you give us a high-level
intro about this report,
Speaker:how it came about, and maybe why you think
Speaker:this topic is so important?
Speaker:- Sure, so as Raj mentioned,
we have this alliance
Speaker:to improve dementia care
over 130 multi-sector,
Speaker:you know, multi-stakeholder members.
Speaker:And our steering committee in particular,
Speaker:we consult with them from time to time.
Speaker:We meet bimonthly, and you know,
Speaker:we were really asking
them what is the area
Speaker:that we, as a cross-collaborative group,
Speaker:should be focused on?
Speaker:And the topic of workforce,
Speaker:a dementia-capable workforce came up.
Speaker:Raj was instrumental in getting
our alliance off the ground.
Speaker:I joined in December, 2020.
Speaker:So we've been around
for about three years.
Speaker:And our steering committee just represents
Speaker:this whole cross sector.
Speaker:So we all agree that workforce shortages
Speaker:is a critical area of concern.
Speaker:And so we set out to look
at what does that mean?
Speaker:We had a working group, we
do our round table convening.
Speaker:It's a private session,
Chatham House rules.
Speaker:We come up with consensus-based
recommendations,
Speaker:it's peer reviewed, and that's
how we release the report.
Speaker:But this topic of dementia care navigator
Speaker:and that role was front
and centre as we did our,
Speaker:you know, went through our process.
Speaker:And then this really came
to light as a key area,
Speaker:game-changing role for dementia care.
Speaker:- Awesome.
Speaker:One of the things I thought
was that was really unique
Speaker:about your dementia care alliance
Speaker:and maybe the steering
committee is the input
Speaker:that you get too from
people living with dementia
Speaker:and their families.
Speaker:- Absolutely, and so for each
of our private round tables,
Speaker:we start out with someone,
you know, living with dementia
Speaker:or caregiver caring
for loved one dementia,
Speaker:really just giving kind of a,
Speaker:you know, a sharing the experience.
Speaker:And it really then just sets the tone
Speaker:for why we're all here.
Speaker:What I'm amazed at is the
number of people, members,
Speaker:including myself, who've
had a personal experience
Speaker:caring for a loved one with dementia.
Speaker:I lost my dad to Alzheimer's 11 years ago.
Speaker:And it still feels really
raw after all this time.
Speaker:And this is why we're
so motivated to improve
Speaker:that care journey for the
people living with dementia
Speaker:as well as their family caregivers.
Speaker:- Yeah, it's very clear that
you both bring that passion,
Speaker:that personal passion to this work.
Speaker:Raj, the report highlights
a significant challenge
Speaker:in meeting these growing
demands for dementia care,
Speaker:especially given this expected
doubling of individuals
Speaker:living with Alzheimer's disease
Speaker:and related dementias by 2040.
Speaker:What are some key strategies
to address the shortage
Speaker:in what you call the
dementia-capable workforce,
Speaker:the medical providers
with specialised training
Speaker:in dementia care?
Speaker:- Thanks, Annalise.
Speaker:I think, you know,
you're absolutely right.
Speaker:Here in the US, our healthcare system,
Speaker:our long-term care system is really facing
Speaker:significant challenges
right now in meeting
Speaker:this growing demand for dementia care.
Speaker:I think especially the
statistic that you cited
Speaker:in terms of doubling of the population
Speaker:is really gonna impact
how services are delivered
Speaker:in cities, in rural populations,
in underserved populations,
Speaker:low-income populations
all are gonna be impacted
Speaker:by the shortage of a workforce.
Speaker:And so I think when you think
of this growing population
Speaker:and the capacity constraints
that come with it,
Speaker:you know, the workforce is
really going to be at the centre
Speaker:of efforts to improve dementia care.
Speaker:And we know that moving forward,
there's gonna be a shortage
Speaker:of primary care physicians, geriatricians,
Speaker:specialists, and direct
skilled care workers.
Speaker:I think there's statistics
that show, you know,
Speaker:over the next couple
decades there's going to be,
Speaker:there's gonna need to be a quadrupling
Speaker:of the number of geriatricians
in order to meet this demand.
Speaker:And so I think, you know, it
requires a little bit more
Speaker:foresight in terms of filling that need
Speaker:for this growing population,
Speaker:when what we really need is, you know,
Speaker:a comprehensive dementia-capable
Speaker:and culturally-sensitive
workforce, you know,
Speaker:that's highly coordinated,
that's trained specifically
Speaker:in dementia care and
can recognise symptoms
Speaker:and make the necessary community referrals
Speaker:and are familiar with the available tools
Speaker:and resources that are out there.
Speaker:You know, we know that this
dementia-capable workforce
Speaker:is going to need to represent
a broad range of interests.
Speaker:So, you know, how do
we go about doing that?
Speaker:You know, I don't think
it's going to be realistic
Speaker:to train as many primary care physicians
Speaker:and geriatricians that we need.
Speaker:So how do we go about addressing this?
Speaker:And I think, you know, at its very core,
Speaker:we really need to start
expanding the definition
Speaker:of what that workforce is.
Speaker:You know, we need to include
everyone that interacts
Speaker:with high-risk individuals and
families living with dementia
Speaker:that's either a current
healthcare professional,
Speaker:a future healthcare
professional, including nurses,
Speaker:community health workers,
and long-term care workers.
Speaker:And I think even family members,
Speaker:family caregivers are all
going to need to be part
Speaker:of this expanded definition of workforce.
Speaker:And so, you know, in our report,
Speaker:we outline a number of strategies also
Speaker:to increase the
dementia-capable workforce.
Speaker:And we really focus a lot on
efforts to increase recruiting,
Speaker:increase training, and increase retention
Speaker:of the dementia-capable workforce.
Speaker:And I would just kind
of note that, you know,
Speaker:with the growing shortage
of healthcare professionals,
Speaker:there are some bright spots there also.
Speaker:We know that certain professions
Speaker:within the healthcare
industry are growing.
Speaker:Nurse practitioners in
particular is a growing field,
Speaker:physician associates are a growing field,
Speaker:social workers are a growing field.
Speaker:And so these are all ripe
associations to recruit from,
Speaker:to train and really
bring into this dementia
Speaker:conversation in terms of workforce.
Speaker:- Fantastic.
Speaker:I think that's a great
lead into my next question.
Speaker:It may be useful for our listeners,
Speaker:given the broad
listenership of the podcast,
Speaker:to hear a little more about this role
Speaker:as it might not be quite
so common outside the US.
Speaker:So Diane, the report
defines care navigators
Speaker:or care navigation as
individualised assistance
Speaker:to patients and caregivers
to facilitate access
Speaker:to quality health and psychosocial care.
Speaker:Maybe you could tell us
a bit more about the role
Speaker:of care navigators, what
settings they might work in,
Speaker:what are some personal or
professional qualifications
Speaker:of the care navigator.
Speaker:- Sure. Thanks, Annalise.
Speaker:So absolutely, this care navigation role,
Speaker:I wanna start by just saying it's a role
Speaker:that's actually common in
cancer care, diabetes care.
Speaker:And what we did is we had a prior report
Speaker:to this one called
Speaker:"Scaling Comprehensive
Dementia Care Models."
Speaker:And in that we focused on
the eight core elements
Speaker:that define a comprehensive
dementia care model,
Speaker:of which there are six
evidence-based ones.
Speaker:And we talk about them in not only
Speaker:the "Scaling Comprehensive
Dementia Care" report,
Speaker:but we also reference
them in this new report
Speaker:on guiding the care journey.
Speaker:So they include the eight core elements
Speaker:include things like caregiver support,
Speaker:medication management, care coordination,
Speaker:ongoing care planning.
Speaker:And we looked at the different models
Speaker:where some are telephonic-based
or online-based,
Speaker:some are community or home-based
Speaker:and some are clinically-based.
Speaker:You can just see that range,
and I'll mention the six.
Speaker:Most of them focus
within academic settings.
Speaker:So there's a UCLA dementia care programme,
Speaker:University of California San
Francisco Care Ecosystem,
Speaker:which is the telephone-based one.
Speaker:Emory University's
Integrated Memory Care model.
Speaker:Benjamin Rose Institute, and
then the Eskenazi Health one
Speaker:at Indiana University, and then MIND,
Speaker:Maximising Independence at Home,
Speaker:that comes out of John Hopkins University.
Speaker:These are all awesome models,
Speaker:but what we looked at is
these eight core elements,
Speaker:while necessary, we don't think
they're all created equal.
Speaker:So we kind of took a step back and said,
Speaker:"What among these eight could
be actually game changing
Speaker:if we could get this one role focused on?"
Speaker:So it was that care coordination role.
Speaker:So someone who's actually
helping the person
Speaker:living with dementia and
the family caregiver,
Speaker:that care dyad that we refer to,
Speaker:navigate our complex health
system, our healthcare system,
Speaker:and the social care system,
Speaker:all the types of social care services
Speaker:that are outside the medical setting
Speaker:delivered mostly by
community-based organisations.
Speaker:So transportation, meals,
caregiver training, support,
Speaker:respite care, all of these
are really critical parts
Speaker:of the dementia care model.
Speaker:And so, you know, we did these
Speaker:key opinion leader interviews,
we had a round table,
Speaker:all of this started bubbling up,
Speaker:like if we can define this model.
Speaker:And you'll see a chart in our report
Speaker:that organises advice setting.
Speaker:One of the things that's a bit confusing
Speaker:that we acknowledge too in the report
Speaker:is the name of this role,
Speaker:dementia care specialist, which
is used in Wisconsin state
Speaker:to reference non-licensed
care paraprofessionals.
Speaker:That dementia care specialist is also used
Speaker:in the clinical care
model offered by UCLA,
Speaker:care coordinator, and so
we wanted to acknowledge
Speaker:that even that, depending
on the care models,
Speaker:can be confusing, venture care specialist,
Speaker:venture care coordinator, on and on.
Speaker:But essentially the role is
to be that sort of guide,
Speaker:you know, all along the way
knowing when to escalate
Speaker:and elevate the care,
when to bring the person,
Speaker:if they're evolving or progressing
Speaker:in their dementia care journey,
what we might need to do.
Speaker:Is there medication management?
Speaker:And bringing in the right
intervention at that time
Speaker:and being part of an
interprofessional care team.
Speaker:So really core to that
interprofessional care team,
Speaker:care navigator and caregiver,
as well as the clinical folks.
Speaker:So I hope that answered your question.
Speaker:- I think so, yeah. That's
fantastic information.
Speaker:It really strikes me, oh, go ahead-
Speaker:- Annalise, can I just jump in-
Speaker:- Yeah, please.
- To kind of piggyback
Speaker:off of what Diane said.
Speaker:You know, this position is
a really versatile position.
Speaker:And I think, you know,
we talk so much about
Speaker:the unique journey of families
that live with dementia.
Speaker:You know, it's a progressive disease
Speaker:that requires different
interventions at different stages.
Speaker:And so I think, you know, the care models
Speaker:that Diane mentioned, you know,
some are more on the medical
Speaker:side of care for folks
with more advanced needs
Speaker:that require, you know, more
of medication management,
Speaker:that require more therapeutics.
Speaker:But there's a whole group of
individuals at early stages
Speaker:that really need access to education,
Speaker:access to appointment, you know,
Speaker:facilitation among the
fragmented specialists
Speaker:that they have to see.
Speaker:And so I think this care
navigator, you know,
Speaker:is very versatile in terms
of being able to provide
Speaker:those services along that spectrum
Speaker:of the disease journey
that a lot of families
Speaker:have trouble navigating.
Speaker:So I just wanted to
throw that in there too.
Speaker:- And just to piggyback on what Raj said,
Speaker:you know, we look at a
population-health approach.
Speaker:So if you think about like a care pyramid
Speaker:with the folks at the
bottom, as Raj mentioned,
Speaker:maybe in that early stage,
if they're diagnosed,
Speaker:they might just need more
of that care and handholding
Speaker:and navigation all the way
to the top of the pyramid
Speaker:where you have more of
a moderate to advanced
Speaker:stage of the disease where you
may have behavioural issues
Speaker:and need for therapeutics
and much more care,
Speaker:and so delivered at the higher level
Speaker:of your licenced care professionals,
Speaker:like your nurse practitioners,
your geriatricians.
Speaker:So yeah, it's a very versatile role.
Speaker:- Yeah, I really think that
leveraging paraprofessionals
Speaker:is just an amazing part of
this set of recommendations.
Speaker:And part because in my
experience, I think a lot
Speaker:of our paraprofessionals
have a great knowledge
Speaker:of the community, often have
the trust of the community.
Speaker:- Absolutely, yes.
Speaker:- And particularly when we're talking
Speaker:about marginalised communities,
Speaker:individuals who may have less access to
Speaker:or trust in the healthcare system,
Speaker:that could be a massive strength.
Speaker:- We are actually writing an update to one
Speaker:of the other reports we did,
Speaker:which was building the
workforce to improve
Speaker:early detection and diagnosis of dementia.
Speaker:And since then, that
came out in May of 2021.
Speaker:And we've seen such a sea change going on
Speaker:with what's going on with dementia space.
Speaker:And we did a lit review and all,
Speaker:and it's really pointing to
is community health workers.
Speaker:To your point, they're from
the community, they're trusted,
Speaker:they're culturally competent,
Speaker:linguistically capable in many cases.
Speaker:And we see such a disproportionate risk
Speaker:of people with dementia in terms of,
Speaker:you know, Blacks two times more likely,
Speaker:Hispanics one and a
half times more likely.
Speaker:We don't know offhand the
dementia risks for AAPIs,
Speaker:but Raj and I actually
co-authored an article
Speaker:to try to shine a light on
the fact that, you know,
Speaker:one size does not fit all.
Speaker:So if we lump AAPIs together in one group,
Speaker:there's many different ethnic backgrounds,
Speaker:socioeconomic backgrounds,
ethnic backgrounds
Speaker:within the AAPI community.
Speaker:And we strongly believe that
there's disproportionate risk
Speaker:for certain subpopulations of the AAPI.
Speaker:So absolutely those
trusted community workers.
Speaker:- Mm-hm.
Speaker:And for listeners outside the US,
Speaker:I also wanna mention
that, you know, Diane,
Speaker:you just mentioned that
we see that, for instance,
Speaker:Black and African American
patients are twice as likely
Speaker:to have Alzheimer's disease
but tend to be diagnosed
Speaker:much later and much less frequently.
Speaker:We also know that their care partners
Speaker:tend to have a disproportionate
burden of caregiving.
Speaker:So they're get caregiving full-time,
Speaker:they're caregiving at later
stages of the disease.
Speaker:So I'd love to talk more
about how the care navigator
Speaker:might address that specific disparity.
Speaker:Raj, maybe you could tell
us a bit more about that.
Speaker:- Sure.
Speaker:You know, I think it's
so critical to, you know,
Speaker:highlight how complex
dementia care is in general.
Speaker:There's so many specialists
that families have to see,
Speaker:you know, the issue of
access to care is, you know,
Speaker:front and centre for everyone
living with dementia.
Speaker:But I think, you know, there's
been longstanding disparities
Speaker:that things like COVID had highlighted
Speaker:that really impact families
in underserved communities
Speaker:that are living with dementia.
Speaker:And so when we talk about
underserved communities,
Speaker:you know, we talk about
racial and ethnic disparities
Speaker:of which there are major discrepancies,
Speaker:you know, in access to care.
Speaker:We talk about rural versus
urban access to care.
Speaker:You know, there's a tremendous
issue with just being able
Speaker:to see primary care physicians
in rural communities.
Speaker:And we also talk about low
socioeconomic communities
Speaker:in terms of the cost of care to families.
Speaker:They spend more out of pocket
than other communities.
Speaker:And so I think, you
know, one of the things
Speaker:that care navigation does
is it really highlights
Speaker:the need for a comprehensive
approach to dementia care
Speaker:and places the care
navigator at the centre
Speaker:of that approach.
Speaker:So families often have
a hard time engaging
Speaker:with their providers.
Speaker:They have a hard time navigating
the multiple requirements
Speaker:that are needed in terms of appointments.
Speaker:They have a hard time
applying for benefits.
Speaker:And so care navigators can
really be that point of contact
Speaker:for families to help with things
like applying for benefits
Speaker:that they need,
Speaker:for making
culturally-appropriate referrals
Speaker:into the community.
Speaker:You know, we know that a lot
of dementia care takes place
Speaker:outside of formal healthcare systems
Speaker:and really takes place in the community,
Speaker:and the access to those community
supports is really needed,
Speaker:you know, for individuals in
these diverse communities.
Speaker:And, you know, care navigators
are trained to understand
Speaker:what is available in
terms of nutrition access,
Speaker:in terms of some of the
physical interventions
Speaker:that are applicable to education,
Speaker:to resources for, you know, understanding
Speaker:the modifiable risk
factors that are needed,
Speaker:and really making that a more kind of
Speaker:culturally-appropriate referral.
Speaker:And so I think those care navigators,
Speaker:like the community health
workers that Diane had mentioned,
Speaker:you know, represent those families.
Speaker:We in our report make
recommendations to recruit
Speaker:from underserved communities
so that those care navigators
Speaker:speak the language, so
that's not a barrier.
Speaker:They can engage
compassionately with families
Speaker:and connect them to providers as needed.
Speaker:They can be the voice of caregivers.
Speaker:'Cause a lot of times caregivers
Speaker:in underrepresented communities
experience a higher burden
Speaker:to their health.
Speaker:They experience a higher burden
Speaker:in terms of out-of-pocket expenses.
Speaker:And so I think that care
navigator as kind of the liaison
Speaker:among all the different fragmented systems
Speaker:in dementia care really provide, you know,
Speaker:more of that access
into the care, you know,
Speaker:some of those underserved
communities have traditionally
Speaker:had a hard time with.
- Fantastic.
Speaker:Thanks for sharing that.
Speaker:So Diane, your report makes
six key recommendations
Speaker:with the first theme focusing
on developing a framework
Speaker:for care navigation on
dementia care teams.
Speaker:Can you discuss the importance
of these recommendations
Speaker:and how they may be
effectively implemented?
Speaker:- Sure, so yeah, the
first theme was around,
Speaker:you know, really looking at the
dementia care navigator role
Speaker:in the various care settings,
which I've already mentioned,
Speaker:the telephone or online,
home and community-based
Speaker:and clinical setting.
Speaker: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:- [Announcer] The "Dementia
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Speaker:with generous funding from
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Speaker:for Health Research,
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Speaker:Alzheimer's Society,
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Speaker:and Race Against Dementia.
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Speaker:Dementiaresearcher.nihr.ac.uk.