Journey with Dementia: Advocacy and the Role of Politics

Politics plays a crucial role in tackling Alzheimer's disease and other dementia-related illnesses because of the need for policy creation, adherence to regulations, and fiscal resource allocation and management. It also can be a vehicle of cooperation with local support organizations to assist and educate families whose loved ones have dementia.

Senator Malcolm Augustine of District 47, Prince George's County, is invited to this podcast by Perry Limes. They talk about the government's role and how it might assist communities to deal with Alzheimer's disease and other dementia-related illnesses more effectively. They also discuss the prejudices that people of color face when seeking medical help. The listener is introduced to the Virginia I. Jones Alzheimer's Disease and Related Dementias Council, and the role the council plays to assist persons who have been diagnosed with Alzheimer's disease or dementia. Senate Bill 27, piece of legislation that has great potential to impact the experience for individuals with dementia and their caregivers, is presented and discussed.

Key Takeaways

The Role of Politics for Those Living with Dementia and Their Caregivers
Improving the Healthcare Situation for Communities of Colors

An Overview and Role of Virginia I. Jones Alzheimer's Disease and Related Dementias Council

An Overview of the Senate Bill 27, "Dementia Services Act of 2022" legislation

Takeaways of our Guest for Folks Advocating for More Support for Individuals with Dementia

Governor Hogan signed SB 27 into law on May 16, 2022

Quotes

We will get them (families whose loved one has dementia) connected to local support groups who have experience in dementia and can help these folks navigate these very difficult situations. - Senator Malcolm

Implicit bias training is one of the things we're focusing on there to assist the complete spectrum of persons involved in this care in better understanding what they're coming in with and hope that they'll be able to treat people fairly and with dignity. - Senator Malcolm

Featured in this Episode

Senator Malcolm Augustine
47th Legislative District, Prince George's County
Website: https://www.malcolmaugustine.com/
Profile: https://msa.maryland.gov/msa/mdmanual/05sen/html/msa18049.html
Facebook Page: https://www.facebook.com/MalcolmLAugustine

Perry Limes
Director, Strategic Partnerships
Hospice of the Chesapeake
Profile: https://www.hospicechesapeake.org/perry-limes/
LinkedIn: https://www.linkedin.com/in/perrylimes

Prince George's Health and Human Services: https://www.princegeorgescountymd.gov/2234/Health-Human-Services

Alzheimer's Association:
https://www.alz.org/

Virginia I. Jones Alzheimer's Disease and Related Dementias Council: https://health.maryland.gov/phpa/ccdpc/Pages/Alzheimers-Council.asp

Thanks and Appreciations

We'd like to thank the John and Cathy Belcher Institute for their generous support of our community outreach and education programs.

Chapters

00:00 Introduction
00:54 The Impact of Politics and How Senator Augustine becomes an advocate for individuals with dementia
04:58 How Can Senators Help Individuals with Dementia with their Constituents
06:48 Coordination between Federal level and State level to address dementia
08:00 Making the Situation Better for Communities of Color
10:58 About the Virginia I. Jones Alzheimer's Disease and Related Dementias Council
13:37 About the Senate Bill 27, "Dementia Services Act of 2022"
16:10 The Allocation of Funds for Alzheimer's Disease and other Dementias
18:16 Suggestions and Recommendations for Folks Advocating for More Support
19:54 Thanks and Appreciation

Episode Transcript

(00:08):
Good day, Welcome to life,death and what matters in between. I'm
your host, Perry Lymes, andtoday I'm pleased to be welcomed by Senator
Malcolm Augustine, forty seventh Legislative District, Prince George's County. Welcome, Senator,

(00:28):
thank you. I'm very happy tobe here. Okay, today we
want to talk about the impact ofpolitics and what the future holds when it
comes to the journey of dementia.So, Senator Augustine, could you introduce
yourself, tell us a little bitabout yourself and how you became interested in

(00:48):
advocating for individuals with Alzheimer's disease andother related dementias. Sure, absolutely,
thank you again. Thank you somuch, Perry. It's good to be
with you today. I didn't growup around Alzheimer's disease and dementia, but
you know, it's something that Ido know of in my family. M

(01:12):
one of my grandmothers uh, shesuffered from it at the very closing of
her life. But that's really nothow I really got attached or involved in
this here in Maryland. Here inMaryland, I live in Prince George's County,

(01:34):
small town called Chevalley and one ofmy neighbors at the time. He
was a delegate and then became thecounty executive for Prince George's County, Rashn
Baker, who as also a candidatefor governor. Now Roshern is a mentor
of mine and Rashn and I wouldjust literally just go to his house,

(02:00):
knock on his door, and justyou know, just be like, hey,
let's do this or let's do that. And he appointed me to the
Prince George's County Cable Commission. Itwas the beginning of my work in public
service. And then he subsequently appointedme to the Wamata Board where I represented
Prince George's County with the Metro thetransit system and and he's been very supportive

(02:27):
and he's supportive of me running forstate Senate. When I would just literally
walk over there to his house,knock on his door, and I would
come in into his home, hewas always there. And he was always
there with his wife, Christa Beverleyand Christa she had early onset Alzheimer's disease

(02:53):
and it was very much debilitating andhe cared for her in a way that
really touched my heart. He dideverything for her. She passed away not
too too long ago after ten yearsof living with this very debilitating disease,

(03:15):
and we just acted as if everything. You know, I didn't treat it
any kind of different sort of way, but I was keenly aware of how
much effort this person who at thetime is county executive. He's got all
these responsibilities and he has a fulltime job caring for his loving wife who

(03:38):
is really suffering. And that thatcharacter that he had and how he demonstrated
it and what was the life ofthat really is what got me to really
become a real advocate for people,their families and for those who are suffering
from Alzheimer's and related dementia. Wow, that as an amazing, amazing story,

(04:01):
especially since you've seen it kind ofgo from different stages and witness it
firsthand. So thank you so muchfor sharing that. Yeah, in prior
episodes, if we as we've discussed, we have a composite patient that we've
put together, so reminding the audience, you know, Joe is an African

(04:26):
American gentleman sixty six years old,and he's worked as an elementary school teacher,
and so Joe represents many individuals inthe community. When talking with families
in your district who have a lovedone with dementia, like the gentleman that

(04:48):
you just shared, what are someof the ways that you, as a
senator can help with your constituents.Absolutely, so, what we do when
we receive phone calls or inquiries fromfolks, what I typically do is connect

(05:12):
them with the Prince George's County Healthand Human Services. And it would be
the same for others in other countieswhere their local health departments do have resources
available and sometimes also have people whoare there who can help to navigate the

(05:33):
services, the the what is availablefor those who need the caregivers care for
caregivers, I find that those arevery good places for people to go.
I also will direct them to alocal Alzheimer's Association chapter for those who are
suffering from Alzheimer's. Similarly, thereare also dementia societies as well, and

(05:58):
so we will get them connect didtwo local support groups who have experience in
the area and can help these folksnavigate these very difficult situations. That's awesome,
And let me ask you a questionbecause we yeah, obviously we see

(06:20):
so many different roles that the governmentplays in our healthcare system, and obviously
we were watching it with unfold withCOVID. How has the coordination been at
the state level but also with thefederal level, and is there any collaboration
that's going on with the federal governmentand working with the state legislature and helping

(06:46):
with this particular disease. The federalgovernment has provided a tremendous amount of financial
resources through Medicare and medicaid. Stateof Maryland, um, you know,
really does invest a lot into thesethis care and there are also resources that

(07:09):
are available, um for training andeducation that are there, but um,
there are gaps. I mean therestill is, uh, you know,
a gap between what the federal governmentis able to share and provide versus the
needs of folks on the ground andin the state. And so um that's

(07:31):
an area that we've we've tried towork on for certain here in the state.
Well that's that's a perfect segue becausecommunities of colors usually experience health inequities
and they have challenges getting some ofthese resources and assistance, especially when trying

(07:51):
to navigate dementia that at least thedementia diagnosis. UM, what would you
recommend to some of those individuals andfamilies. Well, first of all,
I would just say that it isa very challenging situation and not as much

(08:13):
a recommendation to the families. Butwhat I will share is some of it,
at least how I've tried to makethe situation a little bit better for
them. There is work that needsto be done inside of the space of
the caregivers around implicit bias, particularlywhen it comes to people of color,

(08:35):
that there is a history of trainingthat that it's it's it can be pretty
ugly. Let me just say itlike that. I mean, there are
instances where there has been training thatthat suggested that African Americans do not feel
pain in the same way that whiteAmericans do, and the way as that

(09:01):
is taught to practitioners, it impactsthe way that they perceive their patients and
how they treat their patients. Now, I also serve on the Maryland Patient
Safety Center's Board of Directors, wherewe are charged with maintaining the safety for

(09:22):
Maryland patients, and one of thethings that we are working on within there
is implicit bias training to help thefull spectrum of those people who are involved
in this care to better understand whatthey're coming to this with and hoping that
they will be able to treat peoplefairly and with dignity, and in so

(09:45):
doing it will actually help to addresssome of the health inequities, because what
we know is that the health inequities. Health inequities are specifically associated with the
the fact that the folks are AfricanAmerican. Everything else being held the same,
the health outcomes are worse. Sowe know that it is specific to

(10:07):
that area, and so I'm tryingto work on that from that side,
because it's very difficult for the individualto An individual is not going to change
the system, but we as legislatorsand as as leaders are doing at least
I know that I am trying toimpact move the system a little bit such

(10:28):
that the system does better by thepeople that it's set to care for.
Oh that's awesome. Well, wellagain, perfect segue. The Virginia E.
Jones Alzheimer's Disease and Related Disorders Counsel, we understand that you have a
role in that. Can you sharewith our audience what the council is and

(10:52):
how does it help those with Alzheimer'sdisease and related diagnosis? Absolutely so.
The Virginia I. Jones adr DCouncil. I do serve on the board.
It was created by the Maryland Legislaturewith the very intent of being the
entity in the state that is focusedon the priorities and making sure that we

(11:18):
are paying attention to the people whoare suffering from dementia and related disorders.
As a part of that board,one of the main things that we do
or what we are doing now iswe updated our five year plan to address
these concerns and it covers a varietyof different issues. It covers things like
care itself, research, care forthe caregiver. And it's a board led

(11:43):
by Quincy Sammas who is a professionalin the space and has other dedicated professionals
and family stakeholders who are a partof the entity with this charge to really
have better outcomes for the patients andfor the families. That's the charge of
the of the entity for the stateof Maryland. That's awesome, That's that's

(12:09):
that's just amazing, amazing, amazingwork. Um. Do you have information
about the board? Is there awebsite? Is there something that uh everyday
citizens can go to look at toget information about that that is a work
in progress. That it's not thatthere isn't entit. There is information available

(12:30):
online um for that board. Itis a entity of the state of Maryland.
So if you if you go tothe Health dot Maryland dot gov and
you look for the Virginia I.Jones Alzheimer's Disease and Related Disorder Council,
you will find it there. Youwill find information there where you can go
and see what it is. Youcan see the last state plan. We

(12:54):
are now still working on the newstate plan, and there's also information about
meeting minutes and things like that.But there still is more. You know,
we still are working on making itmore accessible and that is a part
of the charge that we're working onright now. So, Senator Augustine,
during your past legislative session, youintroduced and had approved Senate Bill twenty seven

(13:18):
Alzheimer's Disease and Dementia and it's partof Dementia Service Act of twenty twenty two.
Can you talk about this piece oflegislation and what is it and what's
the status of it right now?Yes, thank you, absolutely so.
Senate Bill twenty seven really came directlyout of It was the very first recommendation

(13:39):
of the state plan that we wereread that we were talking about that's being
developed by the Virginia I. JonesAlzheimer's Disease and Related Disorders Council that is
in the process right now of approval. There's still there's still some review that's
happening. But the first recommendation wasthat there be a co ordinator of services

(14:01):
for Alzheimer's care in the state ofMaryland. So what Cinephile twenty seven does
in Centephile twenty seven has passed bothchambers and is on Governor Hogan's desk for
his signature. Now, what itdoes is that it makes this permanent.
So the council was originally set upand it had a date when it was

(14:22):
going to end. The first thingthat this piece of legislation does is it
says that this is something that isimportant that we want to make sure it
remains active, and so it removesthe termination date on this. We do
that often in the legislature because sometimesthings we find we want to make sure
we look at them again to makesure that they are still something that's useful

(14:43):
for the state. And this isclearly something that is used for the fullest
state. And what it does isit establishes a full time Director of Dementia
Services Coordination that will be housed withinthe Maryland Department of Health. Its responsibilities
will be staffing and managing the councilaviously, the council that I sit on.
It will be charged with implementing thatstate plan on Alzheimer's Disease and related

(15:05):
disorders, identifying and applying for grants, coordinating with other state agencies, and
assessing and analyzing statewide data related todementia support dementia specific training and outreach efforts.
They will have a central job inthe one point four billion dollars that
the State of Maryland already invests inthis care. And that's what Centipill twenty

(15:30):
seven does. Wow, that isamazing. Now this is going to be
distributed, and I say that's onepoint seven billion that you're talking about.
Maryland is a small state, butit's pretty condensed and populated. This is
distributed equally along state lines or isit geared more towards where the populations are.

(15:52):
Prince George's is the second most populouscounty in the state, So do
you see inequities in that part orthat kind of as the needs are in
the state. The money that I'mreferring to is actual money that the state
spends on Medicaid related costs associated withthe care of people who have Alzheimer's and

(16:15):
other dementia. And that is soMaryland spends over fourteen billion dollars on healthcare.
This is a very large important pieceof what is that Maryland invests in
healthcare, but it did not havesomeone who was coordinating. We also spend
a significant amount of money on heartdisease and diabetes, but we had coordinators

(16:41):
for those. These are chronic conditions, as is Alzheimer's, and so that
was the thrust behind the legislation wasthis is a chronic condition, something that
we need to work on. Thestate and already, you know, invest
a significant amount of money in thecare of its citizens for it, and
so we want to make sure thatwe have somebody who is concentrating on that.

(17:03):
Oh, that's that's amazing. UM. So, as as we've learned
today, politics play an important rolein helping individuals with dementia and supporting their
families. UM. And obviously there'sadditional challenges and communities of color um in
dealing with Health and Equities, UM, Senator Augustine, what can local citizens

(17:26):
again your constituents, but even everydaycitizens that you know, whether they're in
Prince George's county and Arundo Montgomery,UM, what can they do to learn
more and advocate UM for more supportand around this the dementia and this growing
um if you would, the diseasepopulous, especially when you're looking at this

(17:49):
what we call the Great Tsunami.The baby boomers are really coming into force
in terms of moving that Medicare Medicaidneedle because they they utilize a high dollar
amounts. So what would you suggestto folks in terms of advocating for more

(18:10):
support. They can reach out topeople like me directly, reach out to
their legislators. They can reach outto their local legislators, people who are
on their county councils, their countyexecutive. They certainly should reach out to
their members of the Maryland General Assembly, their delegates, their senator, and

(18:33):
out to the governor directly and letthem know that this is a priority for
the state of Maryland. There area number of we have to make choices
and decisions when we are finding wherewe're going to invest the money of the
state of Maryland, and that isa process that we have to go through,

(18:59):
and the voice of the families andof the people who are living with
these related dementia disorders have to beheard. They're only heard though, if
people speak up and they reach outand they let people like myself know that

(19:21):
this is something that is important tothem. It has a real impact on
their life. In the way thatI shared how it has an impact or
impacted Resturn Baker and sisters life,that touched my heart. We're people.
We are touched by those things thatwe know. If we don't know,

(19:42):
then we aren't touched by it,And so that would be my suggestion with
that, Senator August Scene, itis great to know that there are elected
officials that are listening to the people. And I think it's it's a it's
you know, hats off to you, because you know, many times we

(20:04):
get into a mode where we feellike we don't matter, but if enough
voices speak up, it does matter. And obviously there are ears listening like
yourself that are trying to make adifference in everybody's life. So with that,
Senator, I want to thank youfor your time today on our podcasts,
and we'd like to thank the Johnand Kathy Belcher Institute for the generous

(20:27):
support of our community outreach and oureducation programs. Thank you so much for
joining us, Perry, thank youso much. I'm really grateful for the
opportunity to talk about this very importanttopic. Also clearly grateful to the folks
at the John and Kathy Belcher Institutefor supporting it. And I'm always happy

(20:47):
to just share my insights and tothink about the people who are living with
this condition and those who are caringfor them. So thank you, so
very much, Thank you so much. Stunning Augustine bu