Journey with Dementia: Advocacy and the Role of Politics

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Journey with Dementia: Advocacy and the Role of Politics with Senator Malcolm Augustine GraphicPolitics has a crucial role in tackling Alzheimer’s disease and other dementia-related illnesses. Through advocacy, it can develop policies, regulations, and finances, as well as cooperate with local support organizations to assist and educate families with dementia patients.

In this final episode of season 1 of “Life, Death and What Matters In Between,” Senator Malcolm Augustine of District 47, Prince George’s County, talks with by Perry Lime. They talked 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 discussed the prejudices that people of color face when seeking medical help. They also mentioned Virginia Jones, the Alzheimer’s Disease and Related Disorders Council, and how it assists persons who have been diagnosed with Alzheimer’s or Dementia. They also covered Senate Bill 27, a piece of legislation, what it entails, and its impact on Patients with Dementia.

Click here to listen to Episode 6 of Season 1 of  “Life, Death and What Matters In Between”

Transcript

Perry: Good day. Welcome to Life, Death, and what matters in between. I’m your host, Perry Limes. And today, I’m pleased to be welcomed by Senator Malcolm Augustine. 47th Legislative District, Prince George’s County. Welcome, Senator.

Senator Malcolm Thank you. I’m very happy to be here.

Perry: Today, we want to talk about the impact of politics and what the future holds when it comes to the journey of dementia. So, Senator Augustine, could you introduce yourself, tell us a little bit about yourself, and how you became interested in advocating for individuals with Alzheimer’s disease and other related dementias?

Senator Malcolm Sure. Absolutely. Thank you. Again, thank you so much, Perry. It’s good to be with you today. I didn’t grow up around Alzheimer’s disease and dementia, but, you know, it’s something that I do know of in my family. One of my grandmothers. She suffered from it at the very close of her life. But that’s not how I really got attached or involved in this here in Maryland. Here in Maryland, I live in Prince George’s County, a small town called Cheverly. And one of my neighbors at the time was a delegate and then became the county executive for Prince George’s County. And Baker, who is also a candidate for governor now, Rushern is a mentor of mine. And Richard and I would literally like to just go to his house, knock on his door and just, you 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 was the beginning of my work in public service. And then he subsequently appointed me to the Walmart, a board where I represented Prince George’s County with the Metro, the transit system. And he’s been very supportive, supportive of me running for state Senate when I would just literally walk over there to his house, knock on his door, and I would come into his home. He was always there and he was always there with his wife, Christa Beverly and Christa, uh, she had early-onset Alzheimer’s disease, and it was very much debilitating in that he cared for her in a way that touched my heart. He did everything for her. She passed away not too long ago after ten years of living with this very debilitating disease. And. We just acted as if everything, you know, I didn’t treat it any different sort of way. But I was keenly aware of how much effort this person who at the time was a county executive. He’s got all these responsibilities and he has a full-time job caring for his loving wife who is suffering. And that character that he had and how he demonstrated it and what was the life of that is what got me to become a real advocate for people, their families, and for those who are suffering from Alzheimer’s and related dementia.

Perry: Wow. That is an amazing, amazing story, especially since you’ve seen it kind of go from different stages and witnessed it firsthand. So thank you so much for sharing that. Yeah. Now, in prior episodes as we’ve discussed, we have a composite patient that we’ve put together. So reminding the audience, you know, Joe is an African-American gentleman, 66 years old, and he’s worked as an elementary school teacher. And so Joe represents many individuals in the community. When talking with families in your district who have a loved one with dementia, like the gentleman that you just shared, what are some of the ways that you as a senator can help your constituents?

Senator Malcolm. So what we do when we receive phone calls or inquiries from folks, typically do is connect them with the Prince George’s County Health and Human Services. And it would be the same for others in other counties where their local health departments do have resources available and sometimes also have people who are there who can help to navigate the services, the what is available for those who need the caregiver’s care for caregivers. I find that those are very good places for people to go. I also will direct them to a local Alzheimer’s Association chapter for those who are suffering from Alzheimer’s. Similarly, there are dementia societies as well, and so we will get them connected. To local support groups who have experience in the area and can help these folks navigate these very difficult situations.

Perry: That’s awesome. And let me ask you a question because we see so many different roles that the government plays in our healthcare system. And obviously, we’re watching it unfold with COVID. How has the coordination been at the state level but also the federal level? And is there any collaboration that’s going on with the federal government in working with the state legislature in helping with this particular disease?

Senator Malcolm The federal government has provided a tremendous amount of financial resources through Medicare and Medicaid. The state of Maryland, you know, really does invest a lot into this care. And some resources are available for training and education that are there. But there are gaps. I mean, there still is, you know, a gap between what the federal government can share and provide versus the needs of folks on the ground and in the state. And so that’s an area that we’ve tried to work on for certain here in the state.

Perry: Well, that’s a perfect segue way, because communities of color usually experience health inequities, and they have challenges getting some of these resources and assistance, especially when trying to navigate dementia, that at least a dementia diagnosis. What would you recommend to some of those individuals and families?

Senator Malcolm Well, first of all, I would just say that it is a very challenging situation and not as much a recommendation to the families. But what I will share is some of at least how I’ve tried to make the situation a little bit better for them. There is work that needs to be done inside of the space of the caregivers around implicit bias, particularly when it comes to people of color, and there is a history of training that. That it’s it can be pretty ugly. Let me just say it like that. I mean, there are instances where there has been training that suggests that African-Americans do not feel pain in the same way that white Americans do and the way that is taught to practitioners. It impacts the 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, where we are charged with maintaining the safety of Maryland patients. And one of the things that we are working on within there is implicit bias training to help the full spectrum of those people who are involved in this care to better understand what they’re coming to this with and hope that they will be able to treat people fairly and with dignity. And in so doing, it will help to address some of the health inequities, because what we know is that the health inequities, health inequities are specifically associated with the fact that the folks are African-American, everything else being held the same, and the health outcomes are worse. So we know that it is specific to that area. And so I’m trying to work on that from that side because it’s very difficult for the individual is not going to change the system. But we as legislators and leaders are doing, at least I know that I am trying to impact the system a little bit such that the system does better by the people that it is set to care for.

Perry: Oh, that’s awesome. Well, well, again, perfect segue way. Virginia Jones. Alzheimer’s Disease and Related Disorders Council. We understand that you have a role in that. Can you share with our audience what the council is and how it helps those with Alzheimer’s disease and related diagnoses?

Senator Malcolm. So the Virginia Jones ADRD Council, I do serve on the board. It was created by the Maryland legislature with the very intent of being the entity in the state that is focused on caring with the priorities and making sure that we are paying attention to the people who are 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 is updating our five-year plan to address these concerns, and it covers a variety of different issues. It covers things like care itself, and research care for the caregiver. And it’s a board led by Quincy Sammons, who is a professional in the space and has other dedicated professionals and family stakeholders who are a part of the entity. With this charge to have better outcomes for the patients and the families, that’s the charge of the entity for the state of Maryland.

Perry: That’s awesome. Oh, that’s just some amazing, amazing, amazing work. Do you have information about the borders? Is there a website? Is there something that everyday citizens can go to look at to get information about that?

Senator Malcolm That is a work in progress. It’s not that there isn’t. There is information available online for that board. It is an entity of the state of Maryland. So if you go to the health dot Maryland dot gov and you look for Virginia I Jones. Alzheimer’s Disease and related disorder council, you will find it there. You will find information there where you can go and see what it is. You can see the last state plan. We are now still working on the new state plan and there is also information about meeting minutes and things like that. But there still is more. You know, we still are working on making it more accessible. And that is a part of the charge that we’re working on right now.

Perry: So, Senator Augustine, during your past legislative session, you introduced and approved Senate Bill 27, Alzheimer’s disease and dementia, and it’s part of the Dementia Service Act of 2022. Can you talk about this piece of legislation and what it is and what’s the status of it right now?

Senator Malcolm Yes, thank you. Absolutely. So Senate Bill 27 came directly out of it was the very first recommendation of the state plan that we were talking about that’s being developed by the Virginia Jones Alzheimer’s Disease and Related Disorders Council. That is in the process right now of approval. There’s still some review that’s happening. But the first recommendation was that there be a coordinator of services for Alzheimer’s care in the state of Maryland. So what does Senate Bill 27 have passed both chambers and is on Governor Hogan’s desk for his signature? Now, what it does is that it makes this permanent. So the council was originally set up and it had a date when it was going to end. The first thing that this piece of legislation does is it says that this is important, that we want to make sure it remains active and so it removes that termination date on this. We do that often in the legislature because sometimes things we find we want to make sure we look at them again to make sure that they are still useful for the state. And this is something that is used for the full state. And what it does is establishes a full-time director of dementia services coordination that will be housed within the Maryland Department of Health. Its responsibilities will be staffing and managing the council. The council that I sit on will be charged with implementing that state plan on Alzheimer’s disease and related disorders, identifying and applying for grants, and coordinating with other state agencies in assessing and analyzing statewide data related to dementia, support, dementia, specific training and outreach efforts. They will have a central job in the $1.4 billion that the state of Maryland already invests in this care. And that’s what Senate Bill 27 does.

Perry: Wow. That is amazing. Now, this is going to be distributed and I say that’s 1.7 billion that you’re talking about. Maryland is a small state, which is pretty condensed and populated. This is distributed equally along state lines or is it geared more towards where the populations are? Prince George’s is the second-most populous county in the state. So do you see inequities in that part or is it kind of as the needs are in the state?

Senator Malcolm The money that I’m referring to is actual money that the state spends on Medicaid-related costs associated with the care of people who have Alzheimer’s and other dementias. And that is so. So Maryland spends over $14 billion on health care. This is a very large, important piece of what it is that Maryland invests in health care, but it did not have someone who was coordinating. We also spent a significant amount of money on heart disease and diabetes. But we had coordinators for those. These are chronic conditions, as is Alzheimer’s. And so that was the thrust behind the legislation. It is a chronic condition, something that we need to work on the state and already, you know, invest a significant amount of money in the care of its citizens for it. And so we want to make sure that we have somebody who is concentrating on that.

Perry: Oh, that’s. That’s amazing. So as we’ve learned today, politics play an important role in helping individuals with dementia and supporting their families. And obviously, there are additional challenges in communities of color in dealing with health inequities. Senator Augustine, what can local citizens, again, your constituents, but even everyday citizens that you know, whether they’re in Prince George’s County and Toronto, Montgomery, what can they do to learn more and advocate for more support in and around this dementia and this growing, if you would, the disease populace, especially when you’re looking at this what we call the great tsunami, the baby boomers are coming into force in terms of moving that Medicare Medicaid needle because they utilize a high dollar amount. So what would you suggest to folks in terms of advocating for more support?

Senator Malcolm They can reach out to people like me directly to reach out to their legislators. They can reach out to their local legislators, people who are on their county councils, and their county executives. They certainly should reach out to their members of the Maryland General Assembly, their delegates, their senator, and out to the governor directly, and let them know that this is a priority for the state of Maryland. There are a number of ways we have to make choices and decisions when we are finding where we’re going to invest the money of the state of Maryland. And that is a process that we have to go through. And the voice of the families and of the people who are living with these related dementia disorders have to be heard. They’re only heard, though, if people speak up and they reach out and they let people like myself know that this is important to them. It has a real impact on their life in the way that I shared, how it has impacted research and Baker and my sister’s life that touched my heart. We’re people. We are touched by those things that we know. If we don’t know, then we aren’t touched by it. And so that would be my suggestion.

Perry: With that. Senator Augustine, it is great to know that there are elected officials that are listening to the people. And I think it’s it’s it’s you know, hats off to you because, you know, many times we get into a mode where we feel like we don’t matter. But if enough voices speak up, it does matter. And obviously, ears are listening like yourself that are trying to make a difference in everybody’s life. So with that, Senator, I want to thank you for your time today on our podcast. And we’d like to thank the John and Cathy Belcher Institute for their generous support of our community outreach and education programs. Thank you so much for joining us.

Senator Malcolm Perry Thank you so much. I’m grateful for the opportunity to talk about this very important topic. Also clearly grateful to the folks at the John and Kathy Belcher Institute for supporting it. And I’m always happy to just share my insights to think about the people who are living with this condition and those who are caring for them. So thank you so very much.

Perry: Thank you so much, Senator Augustine.

 

 

 

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