Alzheimer’s disease spares no one… and this story could easily be anyone’s story. Debra Tann Ed D., author of The Race of Dementia talks with host Meryl Comer about juggling her advocacy work while caring for her husband with dementia at home. Recipient of the 2023 Bright Focus Foundation Community Impact Award, Dr. Tann breaks the silence of the Alzheimer’s journey and talks about the stigma of Alzheimer’s and her push for education, equity, and access to health services for all.
This episode is sponsored by Eisai.
Produced by Susan Quirk and Amber Roniger
Alzheimer’s disease spares no one… and this story could easily be anyone’s story. Debra Tann Ed D., author of The Race of Dementia talks with host Meryl Comer about juggling her advocacy work while caring for her husband with dementia at home. Recipient of the 2023 Bright Focus Foundation Community Impact Award, Dr. Tann breaks the silence of the Alzheimer’s journey and talks about the stigma of Alzheimer’s and her push for education, equity, and access to health services for all.
This episode is sponsored by Eisai.
Produced by Susan Quirk and Amber Roniger
Debra Tann (00:01):
We know that there's a need. We know that there's a need, and it's so true. What former First Lady, Rosalyn Carter said, from our great state, you are a caregiver right now. We'll be, have been or may need one. And that's real talk right there.
Intro (00:18):
Welcome to Brainstorm by us against Alzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, slow Dancing With a Stranger.
Meryl Comer (00:35):
This is Brainstorm and I, Meryl Comer. Today's edition builds on our series of podcasts dedicated to breaking through the silence and stigma of Alzheimer's disease. My guest is Dr. Deborah Tan, author of the Race of Dementia and recipient of the 2023 Bright Focus Foundation Community Impact Award. She juggles her advocacy while caring for her husband at home with dementia, who is nearby in the background during our taping. As caregivers know and appreciate in the early stages of dementia, a loved one shadows the person closest to them for both comfort and support needed to define their world. Welcome, Dr. 10. Thank you for joining us.
Debra Tann (01:22):
Oh, yes, my distinct honor. Thank you for having me.
Meryl Comer (01:25):
You write in your book The Race of Dementia, and I quote My story could easily be your story. What has driven you to become such a strong dementia advocate in the rural southern community about Augusta, Georgia?
Debra Tann (01:40):
The major game changer for me, Meryl, was when my husband received a diagnosis, so that had a tremendous impact upon the family, and that was my introduction, if you will, to this subject of dementia. I remember as a very little girl, I think I was in a fourth grade and I was extraordinarily close to my great-grandmother and she came to visit my grandmother and I was thrilled to be able to visit. She was traveling from Mobile, Alabama, but what my family, my mother, and my grandmother failed to prepare me for was my grandmother's health. And so I had baked her this really unique cake. I had just won a Susie Homemaker oven and I had baked a cake with my own hands, and so I was just so delighted to be able to present her with this cake, and she usually would meet me with such exuberance and that southern vernacular, she would say, come here gal. But this time Meryl, she did not say that. In fact, she looked at me as though she did not know who I was. And when I looked to my mother and my grandmother, they had no answers for me. And so now Merl, it's very important that I encounter people and help people so they can have answers.
Meryl Comer (02:57):
Deborah, tell me about your community. Okay.
Debra Tann (03:00):
I jokingly say most people pass Valdosta making their way on Interstate 75 heading straight to Disney World, and just forget about Little Town Valdosta. We're the last bigger city, if you will, before you hit the Florida line. It is definitely the rule South is no doubt about it. There's a digital divide here. No doubt there's no public transportation here. In rural. It is the most wonderful place for me to do the work that I do because there's not a lot going on. So I become the vessel, if you will, to disseminate dementia information and it works very well for me, and I'm excited to be able to pour into this community.
Meryl Comer (03:39):
Well, after spending 30 plus years in higher education in both community college and university levels, you are now the CEO of Reminiscent of Brain Health Organization. What key myths associated with dementia are you trying to debunk?
Debra Tann (03:56):
Dementia is not a disease. It is the symptoms thereof, and so you should be asking yourself thereof a what? Dr. Tan? Well, now I'm talking about Alzheimer's disease, Lewy body disease, Parkinson's disease, frontal temporal disease, and of certainly vascular disease, the dementia is the symptoms of those particular diseases. So if you don't remember anything else that I've said, remember that dementia is not a disease, it is simply symptoms, hallucination, delusion, repetitiveness, moodiness, agitation, irritability, loss of keys. Keys are a nemesis with people with dementia and there's a host of others. But yeah, symptoms. You guys, very important
Meryl Comer (04:39):
For communities of color. In what way is, does stigma impact diagnosis and access to early treatment and quality care?
Debra Tann (04:48):
Oh, powerful question. Powerful question. That is one of my biggest nemesis is to break the barrier of what has happened historically because Meryl, I have to balance that because in all actuality, the atrocities did occur as it relates to what happened with, say, for instance, the Tuskegee study. So those things are real. They're not figment of our imaginations. So I have to address that and recognize that those things did occur, but at the same time, I have to reassure groups of people how important it is now to recognize that, make sure we never forget that history and move forward with the care that we need for our loved ones now. So that creates a different dynamic and it really takes the empathy, if you will, the ability to recognize and to empathize what happened in our past, but how we have to move the needle and move forward.
Meryl Comer (05:47):
According to a report by the Commonwealth Fund, 26% of Americans, 65 or older who have Medicare face financial barriers that prevent them from accessing mental health services. Are you concerned by the latest CMS ruling that if it stands limits access to Alzheimer's therapies approved by the FDA and only exacerbates the issue of racial disparities?
Debra Tann (06:13):
Oh, absolutely. It troubles my heart in a major way because access is the key. Without access, you don't get in, the doors are closed, and so we have to be very sensitive to that. And so yes, I'm very concerned about that, which is why my job is so important to make sure I get the word out in terms of information and how valuable and powerful that knowledge is. So yes, it does concern me, but I can't let it concern me to a degree where it handicaps me from doing what I need to do. And I really believe this, and I'm just gonna say it candidly, no one should be denied the possibility to be healthy for belonging to a group that has historically been economically and socially disadvantaged. I just believe that, and I tout that and I speak to that, and that's very important to me. So then we need to talk about that subject matter of access methods towards inclusion. That's a big word for me. I know it's a buzzword, but it's important. So we need to talk about access, which is equivalent to inclusion and what that looks like
Meryl Comer (07:22):
In communities where there are disparities when people act out in behaviors that are not understood, but there's nothing you can do about it. There's a degree of normalization. That's my crazy uncle, my aunt, when it is really masking a medical issue. How do you manage that dynamic in the way you educate?
Debra Tann (07:44):
We have to change our language, but you have to heighten the consciousness of people because sometimes we're not always aware of the words that we speak. I knew immediately, immediately with my husband that this was medical. I knew it. It was just in my essence that I knew that this was a medical concern, that it was nothing else short of that. And so we have to recognize what is, and we have to not stereotype our loved ones and what we do on the side, we diagnose, and so it's not crazy Uncle Joe and senile grandma Sarah. It's more to it than that. But we have to start that conversation as to why do we do that? Why do we even do that? To begin with
Meryl Comer (08:30):
Your book, the Race of Dementia is used in nursing programs at Texas Christian University and Georgia State. What is lacking in the clinical setting and how do we overcome those low clinical trial participation rates?
Debra Tann (08:46):
I'm glad that my book is being utilized. Clinical trials are important to me, Meryl, because I am convinced beyond a shadow of a doubt that that is where the cure is going to come from clinical trials, but you have to build up to that, and I have been working that in my community for over a year. We're talking about 18 months now, just building relationships so people will trust and there will be access so we can create access for clinical trials. Clinical trials is the way for me.
Meryl Comer (09:19):
Scientists are now reporting a higher risk of what we call self-harming behaviors after a new dementia diagnosis, especially with those with underlying medical conditions like depression, and women tend to suffer depression at a much higher rate than men. As a certified dementia educator and trained memory care screener, how important is that psychosocial and mental health support kick in early after a diagnosis?
Debra Tann (09:48):
I have to take those steps slowly because when we start talking about mental health, I don't want it to be conflated with the dementia. So I always start with the dementia piece first and then we segue when necessary, given the right time and opportunity into the mental health piece. But I think if we're utilizing our brain pillars of health, our exercise, our engagement, our sleep, no smoking, and all the things that we really talk about for brain health, brain and heart health actually, then once we start to modify those types of behaviors, I think that it'll affect in a profound way. The mental piece.
Meryl Comer (10:27):
You facilitated an online support group. What are the biggest current issues facing caregivers? Have they changed in any way?
Debra Tann (10:36):
The biggest thing that I often reiterate is how are you taking care of yourself? What are you doing? What did you do last week to take care of you? What did you do today to take care of you, the caregiver and or care partner? And I am finding that it's like a continuum that I have to remind individuals that I engage with of the utter importance of taking care of yourself. I think I do that half of my day with most clients and most people I engage with in respect to the caregiver or care partner, what have you done for yourself lately?
Meryl Comer (11:15):
I used to laugh, Deborah, when people would tell me, oh, take time, take good care of yourself. When I was in the middle of juggling very challenging situations and I just said, thank you, and then went on
Debra Tann (11:29):
One, taking care of themselves is something that I have to push on a regular basis for sure, and remind them, you can't do this alone. You cannot care alone. You're not on an island. There's so many resources. You need help. You just need help.
Meryl Comer (11:46):
Deborah, you've shared that you're a fan of us against Alzheimer's A-list. Tell me why
Debra Tann (11:52):
I say that because there's so many facets to it. There's so many components. You know, you've got the military, my husband's retired military, so you got the veterans, but you got the women's piece. You just seem to have something for everyone at the table, and I like that. And so for years, ever since I started on this journey eight years ago, I've made sure I say it in contact with it. And also as it relates to the surveys, I love doing those. I'm gonna tell you why. I love how you poll us to see what we feel and to see what we think. Then you call that information and you give us the feedback from it and from that mural I use in my presentations, and it turns out to be wonderful because I can back it up with stats, and I love that.
Meryl Comer (12:34):
My greatest concern was that we needed to validate both those living with the disease and their care partners and then feed them back the information so they knew they weren't alone in their journey.
Debra Tann (12:47):
And you are doing that. I am so proud to be able to utilize the information, the data that you guys give back and is substantiated. It just warms my heart to be able to have that readily available for me. So yes, I support us against Alzheimer's for sure. What
Meryl Comer (13:04):
Do you think motivates advocates like so many of us who have cared for loved ones, who are caring for loved ones with dementia, to keep up the fight?
Debra Tann (13:15):
We have to because day in and day out continually run into people who need the help. We hope to think that things have gotten better, and perhaps they have, but there is so much more lacking that it calls for people such as yourself and myself to stay on the dementia journey, to stay in the trenches because Merl, the truth of the matter is there are so many people that need help that we can't give up now. We haven't made a strong enough indentation in the knowledge piece. People are still suffering. People are hurting. That has to be addressed. And so it's advocates responsibility to want to do that. So you have to want to do this, Meryl, this is innate. This is in your soul. This is the essence of who you are because you come across so authentic and people believe you. Sometimes they're mere hanging on is by your words. So our work is quintessential still.
Meryl Comer (14:21):
The thing that drove me, and I feel that it probably drives you as well, is that no matter what I did at home for my husband or my mother, I knew the disease was going to win out in the end, and that was unacceptable to me, as I'm sure it's unacceptable to you.
Debra Tann (14:40):
You're absolutely right. And I just think that's what keeps us going because we know that there's a need. We know that there's a need, and it's so true. What former First Lady, Rosalyn Carter said, from our great state, you are a caregiver right now, will be, have been or may need one. And that's real talk right there.
Meryl Comer (15:00):
My guest today has been Dr. Deborah Tann, CEO of Reminiscent, a brain health organization and author of the Race of Dementia. That's it for this edition of our continuing series, breaking Through the Silence and Stigma of Alzheimer's Disease. If it's time for you to share your personal story, please contact us at brainstorm@usagainstalzheimers.org. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now, we'd like to hear what's on your mind, what are the topics and guests you'd like to hear featured on brainstorm? Send your comments to brainstorm@usagainstalzheimers.org.
Closing (16:00):
Support for brainstorm by us against Alzheimer's comes from asci. For four decades, acis commitment to Alzheimer's disease has never wavered. Even when faced with complexities and challenges that cause others to relinquish pursuit, ACI has never given up on developing therapeutic and ecosystem solutions for people and families living with Alzheimer's and other neurogenerative diseases. Subscribe to brainstorm on your favorite podcast platform and join us on the first and third Tuesday of every month.