The Role of the Alzheimer’s Association GA Chapter in Long-Term Care
The Georgia Chapter of the Alzheimer’s Association plays a vital role in providing resources, education, and advocacy to improve the lives of those affected. In this week’s episode, nursing home abuse lawyer Rob Schenk welcomes guest Nancy Pitra to discuss the initiatives and programs the Alzheimer’s Association offers in Georgia, and how these efforts are making a difference in the community.
Schenk:
The Alzheimer’s association stick around.
Hey out there. Welcome back to the nursing home abuse podcast. My name is Rob. I’ll be your host for this episode today. We are discussing the Alzheimer’s association, their mission their values, what they’re doing on a day to day basis. And I’m super excited to have this conversation with Nancy Pitra.
Now let’s get into the meat and potatoes of the episode. We’re going to be talking all about the Alzheimer’s Association. But we’re not doing that alone. We’re doing that with a fantastic Nancy Petra. Nancy is the director of government affairs for the Alzheimer’s association, Georgia chapter. She chairs the GARD state plan advisory and the advocacy committee for the Georgia gerontology society.
Formerly an attorney with the Atlanta Legal Aid Society. She has over 10 years in advocacy, influencing state policies on elder abuse, nursing home rights, and memory care. Nancy is dedicated to improving the lives of older Georgians and their caregivers. And we are so happy and privileged to have her on the show today.
Nancy, welcome to the show.
Pitra:
Thank you. Happy to be here.
What is the Alzheimer’s Association’s mission?
Schenk:
So right off the bat, here’s a softball for you. Can you talk about the Alzheimer’s association in general and what the mission is.
Pitra:
Yeah, absolutely. The Alzheimer’s Association, we have a vision. We have a vision of a world without Alzheimer’s and all other dementia.
So our mission is to continue to be the to lead the way to end Alzheimer’s and all other dementia through accelerating global research, driving risk reduction and early detection and maximizing quality care and support for those individuals and their families.
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Schenk:
And that was that’s a mouthful.
That’s great. So what on a day to day basis then are you guys doing? What’s I get, we want to end Alzheimer’s, but how are we doing that?
Pitra:
Yeah, absolutely. So we have local chapters across the country and we are showing up in your community with services. support. So what that looks like is it takes on several different forms.
The one that we, that I really love to talk about is our 24 7 helpline. This offers information and advice to individuals living with the disease, their caregivers, professional anybody in the healthcare field, anyone who’s trying to advise family. This is a great professionally staffed hotline that is 24 7 and operates in 170 different languages for translation services.
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What services does the Alzheimer’s Association offer?
So that is one way that we are showing up all day, all night long. The other is we’re volunteer led. So we have volunteers in the community everywhere who we are training to be support group facilitators. They are doing community education programs raising awareness because part of destigmatizing this disease and heading that way towards that cure is making everybody aware.
So we are doing programs about understanding what dementia and Alzheimer’s is. What are the 10 warning signs? We’re doing those for caregivers. What does this journey look like? Because Alzheimer’s is not a destination, it is a journey. So we’re, we are showing up whether you are in the early stages or the late stages to support you and your family members.
My area of the organization is policy and advocacy. So I am working with advocates who are interested in driving policy at the national level with our members of Congress or at the state level or at the local level with your legislators and lawmakers. So we are out there educating them and helping them decide how they should be looking at policy so that people that are living with disabilities.
This disease, whether they’re living at home or they’re living in a community based setting or a long term care setting, such as a skilled nursing facility, have the good quality care that they need.
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How can people help the Alzheimer’s Association?
Schenk:
This is I’ve got so many questions. Okay. Let’s, let me ask this. You mentioned the hotline, which I’ll have that number in the transcript and the show notes, and obviously links to everything, but somebody calls that hotline.
What. What typically is the average call concerning? What are you typically doing it with the hotline to help people?
Pitra:
So it can vary from something as simple as I’m trying to find a local adult daycare, right? If we have a community care resource finder and they will ask questions about where you are, zip code, even figure out what area of the county that you’re in, maybe, and what’s available for you.
So it can be something as simple as, I would like to go find this resource. I want to find a support group. I want to find respite services. Something like that. It can be as far as I am really in crisis. I am taking care of someone with this disease and I need a care consultation.
And so we have. Master level trained social worker, consult, that can take up to 45 minutes, Rob, because they’re going to be there with that person, walking them through what’s going on, and helping try to help them figure out what is it that they need to continue to be that caregiver. Being a caregiver for someone with this disease takes a toll.
And even if you have found a lovely facility for your loved one to be in, going in and out of that facility, To visit the person that’s living with dementia can be hard on the caregiver. It can be stressful So they may need some support in that they may What they may need or a referral to the long term care ombudsman program to see if that If that resident advisor is coming out and can help them with something they might be looking for an attorney to do some planning we will help connect them to those types of resources if they need it, but walk them through whatever is going on and give them that care consultation that they need.
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Schenk:
Does it matter where the person calling is situated in the United States or do they, is it one number?
Pitra:
One number. Yeah.
Schenk:
Okay.
Okay. So you mentioned that Alzheimer’s is a journey and a destination, and I love that. Tell me, what are some of the, and again, one of your missions is to raise awareness. What are some of the misconceptions that the general public has about Alzheimer’s? I just that, the journey out of destination just blew me away.
What are some of the other things like that that you’re raising awareness about for Alzheimer’s?
Pitra:
Yeah. I think, there’s a misconception that if someone has an Alzheimer’s diagnosis that they don’t have anything left to contribute. Individuals living with Alzheimer’s, they are still working, they’re still out in the community, they’re still volunteering.
I have met artists. Photographers people that are, they’re still working day to day just because they have started on a journey with a disease that, slowly over time, if they don’t have, if they don’t have treatment is gonna be debilitating, but they’re not. They and so that’s a big one.
The big misconception is they don’t still have something to offer and that they are not part of the fabric of our everyday because they are, and we’ve got a dest stigma. Does that so that people don’t react that way? Give them a little more time I mean they can still have a conversation with you.
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They can still play pickleball They can still go out to the golf course They can still do all of those things living with this disease and they want to Right and they want to feel welcome And I think that’s the thing we’re trying to raise awareness is like these people they are in your community and they want to be They want to go to the grocery store.
They want to go to the bank on their own. They want to live independently and raising that awareness so that they can get that little extra help that they might need that extra few minutes to figure out, what it is that they’re trying to do at the bank that day or what they’re trying to get off of the grocery shelf.
Those are the things that we’re trying to get more community involvement and to understand.
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Schenk:
Tell me then about, because you’re in Georgia, you’re a specific person. I don’t know what you would call it, department or organizations in Georgia. You mentioned advocacy. So what are some of the things that you’re trying to get accomplished with the Georgia assembly?
And then we can talk about on the federal level, but what are you doing? What are you guys doing on the local level? Yeah.
Pitra:
So at the state level, we really focus in on that care and support piece and how do we continue to ensure that caregivers have what they need. So funding for respite. So we’re always looking at where can we put more funding in the budget?
How is that going to be beneficial to the people that we support and also beneficial to the state? So we have been successful in adding respite funds to the state. Non Medicaid budget. So those are for individuals who they are above the line for being able to have Medicaid, but they might still need some financial support right to be able to take their loved one to an adult.
They bring somebody in so that they can get out. They can take care of themselves. I also need to go to the doctor just because I’m taking care of my spouse or my mom. Or I need to go out and have that socialization. Socialization is so important, not only for the person living with the disease, but for their caregivers.
And sometimes they can’t leave. So that’s one thing we work on at budget items like that. And so we’ve been successful in the past to get money in the budget, which is really quickly.
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Schenk:
I don’t want to interrupt you, but I just want to make, can you tell us what respite care is?
Pitra:
Yeah, absolutely.
So respite care is giving respite, giving a break is what that is. So it is allowing a caregiver to have a break from their ongoing caregiving duties. And in Georgia, we have over 335, 000 Thousand unpaid caregivers. So someone who is a family member, a friend who is taking the time to care for someone and not getting paid for it.
And they need a break. So it gives them that break so that they can go take care of themselves. They can go do all things for themselves so that they can be better caregivers. So that’s what respite services.
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Schenk:
Okay. And so at the Georgia level, you guys are trying to get more respite care funds into the budget.
Okay. And what else are we doing? Terms of advocacy on the state level.
Pitra:
Yeah. So training is a big one. Dementia education is extremely important for always looking for who else needs to have good dementia training and dementia education. A couple of years ago, we were successful and getting mandatory dementia education requirements in for assisted living communities and certified memory care centers.
And now we’re looking at next year, we’re potentially looking at law enforcement. We have a lot of law enforcement that are out there responding to calls to individuals who have dementia, right? And we want to ensure, we want to give our first line of patrol the resources they need to respond in the right way to someone who It has dementia.
So that’s what we’re looking at. Coming into this next 2025 session is how we can enhance law enforcement education so that they can respond in the right way to individuals living with dementia. We are always looking at. Oh, sorry.
Schenk:
No, I was just going to say I can attest to the the, those accomplishments in terms of the update to the regulations for assisted living facilities and personal care homes in Georgia.
It’s such a, it’s such a good thing that you guys are of what you guys are doing. Obviously everything you’re doing, but specifically that for me, cause I’m experiencing that when I see the regulations and it requires X, Y, Z training within the first, however many months that the employees there, if you’re a memory care, if you have a memory care unit, you got to do X, Y, and Z those are tremendous advancements in the care of individuals living with Alzheimer’s.
So hats off to you. That’s where. I intersect with what you’re doing. So I appreciate that. So let me ask this. Okay. So, how can somebody out there that’s listening help the Alzheimer’s association either at the state level or the federal level? What can we do?
Pitra:
Yeah. So if you are interested in advocacy and getting involved with us, we would love to have you go to our, go to our website.
ALZ. org and I think it’s slash advocacy. And you put in your information and tell us why you’re interested. And then we are going to reach out to you and see how you can get involved. And that can be anything from just responding to our text alerts, right? We need you to respond to this text and reach out to your representative or your member of Congress and tell them to do X, Y, Z.
Or if you want to get really involved with us, we will get you educated and trained on how to go with us to the state Capitol. We go once a year. During the session, we turn the capital purple and we meet with as many of them as we can to talk about what we’re working on and what we need them to vote on and support us to do.
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And then we do the same thing. We have our March on the capital in D. C. as well. And we, we turn D. C. purple and do the same thing. But I always tell people the important thing about advocacy is if you have a passion for this, and this is important to you, your elected officials want to hear from you, not from me.
They know that this is my job. They know that I work in the Georgia chapter, but I only live in one district. I don’t live down in South Georgia. I don’t live in North Georgia. So I can go talk to those legislators and they’re happy to hear about it from me, but they’re going to say, Nancy, who in my area cares about this?
That’s where advocates are important because you’re in their area. And this is important to you. They want to hear from you. So we always need more voices who are willing to go have coffee with their local legislator and say, please support these initiatives on behalf of the Alzheimer’s association. The more voices we have, the more powerful we are at the state and the federal level.
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What impact has the Alzheimer’s Association made?
Schenk:
What are some of the most recent success stories that you guys think you’ve had on the federal level in Congress over the past couple of years? What’s, yeah,
Pitra:
So the investment in research has been huge. We have increased the research money at the NIH like tenfold. It has gone from a few million, 10 years ago to over 300, 3.
25 billion dollars on an annual basis. So we have really, our advocates have made a huge effort in pushing the NIH to be invested in research. Looking for treatments and doing research across the country. So that one is one that we’re really proud of. The other is there just recently was announced.
We’ve been pushing an act called the Comprehensive Care Act and out of that. The Centers for Medics of CMS is coming up with an initiative through their CMMI, and they are going to be testing out a model of care that’s going to be more inclusive because one of the things that we have found over the years is that if You’re looking outside of us pointing in the right direction.
If you go into a primary care physician’s office and you’re trying to figure out where you need to go for certain things, it’s very bifurcated. So they’re testing out a new model for comprehensive dementia care so that when you go in, you can get those wraparound services, the respite that we talked about earlier, all in kind of that one appointment.
So we’re really excited that this new model is going to be tested and hopefully open up an avenue for Medicare to pay for those wraparound services. in the future. We have new treatments that we’re really excited about that slow down the progression of the disease. When the new treatments first were announced and being approved by the FDA, one of the things that happened at CMS was they made a decision that they weren’t going to cover it, that Medicare wasn’t going to cover it.
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And this, Rob, made our community upset. We have been waiting for this hope. We have been waiting for this for years. We finally have a treatment. It’s not a cure, but if you can get your diagnosis and you can get treated, it can slow down the progression of the disease. It gives these individuals more time to be themselves and see myself saying We don’t know that we’re going to cover this.
So we did rallies all over the country. We have one in downtown Atlanta, right outside of the regional CMS office. We did a rally and DC across from the white house and they came back and Revisited that and now Medicare will cover these treatments. And so that was a huge win for us on the federal level.
And as more treatments are coming, we’re really excited that Medicare is going to cover these.
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Can you share success stories from the Alzheimer’s Association?
Schenk:
And I guess that’s like your organization is, it’s it’s so multifaceted because it’s not just advocacy. It’s not just, it’s not just education providing resources for caregivers.
You’re funding the science behind the treatment and the cure. And I think that’s really important to understand, like you’re, you guys are doing everything from a to Z on that. So I know that I follow you guys on Instagram and I’m always seeing, and it makes me feel bad because I’m such a lazy person, but you’re like, like marathons and half marathons and walks and five Ks and things like that.
So I should probably, that’s how I should probably get more involved. Doing those things, at least I can get healthy too as on top of, contributing to what your guys cause is. In the last couple of minutes can you talk to me about again you mentioned that if somebody wants to get involved, they can call you guys, but do you guys accept donations?
Like how can people give from their pocketbook? What’s the easiest way?
Pitra:
Yeah. Thanks for bringing that up because at the end of the day, we’re a nonprofit and we have got to be fueled by fundraising dollars. And so we have a couple different avenues. So as you, you mentioned our walks.
We have 20 walks just in Georgia, and I’ve got my flowers up on the wall. And this is a great opportunity where you can create a team, Rob, and you can set a goal and your team come out and Fundraise and bring, they can donate to your team. You guys come out to one of our walks and talking about building awareness and community.
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Nothing does that like our walks. When you come out and you see all those people together holding these flowers, if someone’s holding a blue flower like it’s on my wall, that means they’re living with dementia. If they’re holding one of these other colors, that means that they’re a caregiver or that they’ve lost someone to the disease.
And we do a big flower ceremony where everyone’s holding those flowers up before they walk. And then we end with the white flower because the white flower is one day going to be a survivor flower. So it, if that doesn’t motivate all of your friends and family to keep giving money to your team, to help you fundraise for us, nothing else will, but we’ve got those types of events where you can you can lead an effort.
The longest day is an easy one. You can sign up, you can decide to do an activity on your own. I think I saw Rob that you like to you like playing gambling a little bit, you can have a casino night, you can host a casino night, get everybody to come and donate to your casino night and give a big check to the Alzheimer’s association.
We do have a donate button on our website. On our website, if you just wanna give a major gift or give to the association any of those ways we make it easy for you to help us continue to fundraise. And last year, the Alzheimer’s Association, we were so proud. It was the first year we hit a real milestone.
We invested over a hundred million dollars back in research in the US alone. Wow. It goes such a long way. And so every dollar counts and whether you want to do an activity or you want to come out to one of our big walks and be part of a community or if you just want to hit that donate button, we’ll take it all.
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Schenk:
Nancy, that was well said. And thank you so much for All that you do, and thank you for coming on the show today to, to share that message with us.
Pitra:
Thank you for having me. I really appreciate it.
Guest Info:
- Nancy Pitra on LinkedIn
- Alzheimer’s Association, Georgia Chapter
- Alzheimer’s Association, Georgia Chapteron LinkedIn