Thriving through dementia: Mayo conference focuses on well-being
An elderly couple walks down a hall in Easton, Pa.
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If you listened to the program Tuesday, you heard a conversation about Lewy Body Dementia, or LBD. This week as October turned to November, LBD Awareness month turned to National Caregiving Month. But for patients and caregivers, living with dementia is a daily reality.
The Mayo Clinic in Rochester, Minn., is hosting a conference Saturday to talk about how to make the most of life when dealing with decline in memory and cognition.
MPR News guest host Chris Farrell talked with neurologist Vijay Ramanan and John-Richard Pagan, who lives in Virginia with Lewy Body Dementia. Both will be at the conference.
Use the audio player above to listen to the full conversation.
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Audio transcript
CHRIS FARRELL: This is Minnesota Now. And the time is about 12:16, and I'm Chris Farrell. I'm in for Cathy Wurzer. So if you listened to the program on Tuesday, you heard a conversation about Lewy Body Dementia, or LBD. This week, as October turned to November, LBD Awareness Month turned into national caregiving month. But for patients and caregivers, living with dementia is a daily reality.
The Mayo Clinic in Rochester is hosting a conference Saturday to talk about how to make the most of life when dealing with a decline in memory and cognition. Our next two guests will be there. Joining me is neurologist Vijay Ramanan and John-Richard Pagan, who lives in Virginia with Lewy body dementia. So thank you both of you for coming on the show.
JOHN-RICHARD PAGAN: Thank you for having us.
CHRIS FARRELL: So John-Richard, you've been living with a diagnosis since 2016. How did you decide what kind of life you wanted to live when you got a diagnosis that you have LBD?
JOHN-RICHARD PAGAN: The life I wanted to live was I wanted to become a clinical psychologist, but my doctorate program got cut short, and instead I'm using those skills to become an advocate for others living with Lewy body and other forms of dementia and teaching others that life doesn't end just because of a diagnosis.
CHRIS FARRELL: And so elaborate a little bit on this. So what kind of strategies, what kinds of support makes it possible for you to do what you want to be doing?
JOHN-RICHARD PAGAN: Well, to be honest, social support is probably one of the most important. If you don't have a good social support, you need to find one. There are a lot of great support groups online, as well as in person. The Lewy Body Dementia Association does have an online Facebook support group for living with Lewy. I also have a stronger spiritual life, thanks to my diagnosis. And that gives me a lot of strength and encouragement to live in purpose.
CHRIS FARRELL: And Dr. Ramanan, let's get some definitions in here, what we're talking about. We've been discussing LBD, which as I understand, that's the second most common form of dementia. Alzheimer's is the first. So what are the forms of dementia will you be talking about at the conference?
VIJAY RAMANAN: Great question. So it turns out that neurodegenerative diseases are very, very common, and they become more common occurrences as we get older. As you mentioned, Alzheimer's disease is the most common, but there are other members of that family, and Lewy body disease is right there behind it. And each of these diseases-- Alzheimer's, Lewy body disease, frontotemporal dementia, all of them have their typical presentations and they have their variant or less typical presentations.
And adding to the nuance of that is that these diseases can look different from person to person. And so as much as we are learning about them, we also recognize that heterogeneity, that just like with other common diseases, things like high blood pressure, high cholesterol, diabetes, individuals can be more mildly affected or more severely affected. There may be some individuals with certain types of symptoms or troubles and others with different experiences.
And so this conference is really going to attempt to be comprehensive and holistic. Talk about all of these different disorders and discuss not just the medication therapies and optimizations that are available for them, but also think about some of the exciting advances in research, as well as non-medication supports, exactly the kinds of things that John-Richard was mentioning earlier, which are critical for care as well.
CHRIS FARRELL: So John-Richard, as I understand it, you're active with the Dementia Action Alliance, and you've spoken about seeking-- finding community as a gay man with dementia. So what do you think are some of the added challenges, or are there added challenges for the LGBTQ community people living with dementia?
JOHN-RICHARD PAGAN: That's a very good question. The LGBT community, as a whole, we have a very different social environment. We've had to create often our own families that are not necessarily blood relatives. Also as we get older, not all of us are with couples. So when somebody is diagnosed with Lewy body dementia, or any form of dementia, the level of support they may have will differ. They may or may not have children. They may or may not have spouses.
They may be unable to go to parents or siblings because of disagreements with who and what they are. There also is the issue of trusting the medical environment because for many of us, we've had bad experiences in medical care in the past.
CHRIS FARRELL: And Dr. Ramanan, there is or is there research that shows that LGBTQ people could be at higher risk for dementia? And if that's the case, what could be contributing to the greater risk?
VIJAY RAMANAN: That's another great question. And I think stepping back, we need as much research as we can get our hands on because it's absolutely fair to recognize there are active disparities in neurologic care, including for disorders like Alzheimer's and Lewy body disease. And what we really need are data and diagnostics and therapeutics, which are broadly applicable to all of our communities.
And so what I'm excited about in part for the conference on Saturday is the theme of the conference really focusing on well-being. Because what we recognize is, as John-Richard alluded to, management of these diseases does not follow a single one-size-fits-all playbook. It has to proceed from trust and confidence and individualized decision-making between clinicians, patients, and other support individuals.
And we recognize that options which may work for one individual with a diagnosis may not be the best approach for another. And so part of the theme of this conference is really taking that broad look, understanding some of the foundations and exciting advances about these disorders. Recognizing there are some things we don't fully know and haven't yet fully untangled, but really tying together all the expertise that we have to make sure that our patients, their loved ones, and all of us in the field are doing all we can to support our patients.
CHRIS FARRELL: And, you know, John-Richard, dementia can be a scary topic. I've interviewed people who they have a loved one is diagnosed with dementia and all of a sudden people don't show up anymore, even though it's not contagious, but they act as if it is. So why is it important to you to talk about dementia, to sort of be very open about it?
JOHN-RICHARD PAGAN: Well, to be honest-- and again, thank you for a great question. But to be honest, when I first got diagnosed, I was terrified. I was under the impression I had 6 to 8 years to live-- 2 to 8 years, I'm sorry. And all I had for me, fortunately, were my parents to go to and tell, and we were just wrecked. We didn't know where to go. It's important that people know that this may not be a death sentence immediately.
I mean, we can cross the street and die, but the fact is that living with dementia can go on for years. And we need to be aware of that. Also, that you're not alone. There are so many others out there with this and we support each other. We help each other to find purpose. And that changes the whole dynamics.
There was a time when somebody would go ahead and get diagnosed and they would age very quickly. They would get very ill. They would develop symptoms very quickly, and then they would fade. Today, we actually have an opportunity to do medications or non-medication nature methods. We have the ability to really extend life and make it worthwhile.
CHRIS FARRELL: And Dr. Ramanan, and we got just only about a minute left but I'm sure you get asked this question all the time, particularly with something like Alzheimer's or LBD. What can be done to slow cognitive decline?
VIJAY RAMANAN: Great question. And as John-Richard mentioned, medication and non-medication approaches are entirely on the table. For both Alzheimer's and Lewy body disease there are pill medications, which may not stop or cure the disease, but they work on chemicals which are helpful for mental functioning. The goal is to live as long and high quality and rewarding life as possible. Those medication therapies can help with that.
There are emerging treatment options for the early stages of Alzheimer's disease. Again, not cures for the disease, but for those patients who are mildly affected, medically healthy, they may be options and they're options that we didn't have access to years ago. So there's room for optimism here, and the broader goal is if you know what you're dealing with, you can optimize your plan to manage things. Just as you would for other medical conditions, acknowledging that things like Alzheimer's and Lewy body disease are scary-- we have to face that, but there are management approaches.
CHRIS FARRELL: Well, thank you very much for both of you. I'm really glad that we were able to have this conversation. Vijay Ramanan is a neurologist with the Mayo Clinic, and John-Richard Pagan lives in Virginia and is a member of the Dementia Action Alliance. And both are speaking this Saturday, that's November 4, at the Mayo Clinic Conference on Brain Health and Dementia.
The Mayo Clinic in Rochester is hosting a conference Saturday to talk about how to make the most of life when dealing with a decline in memory and cognition. Our next two guests will be there. Joining me is neurologist Vijay Ramanan and John-Richard Pagan, who lives in Virginia with Lewy body dementia. So thank you both of you for coming on the show.
JOHN-RICHARD PAGAN: Thank you for having us.
CHRIS FARRELL: So John-Richard, you've been living with a diagnosis since 2016. How did you decide what kind of life you wanted to live when you got a diagnosis that you have LBD?
JOHN-RICHARD PAGAN: The life I wanted to live was I wanted to become a clinical psychologist, but my doctorate program got cut short, and instead I'm using those skills to become an advocate for others living with Lewy body and other forms of dementia and teaching others that life doesn't end just because of a diagnosis.
CHRIS FARRELL: And so elaborate a little bit on this. So what kind of strategies, what kinds of support makes it possible for you to do what you want to be doing?
JOHN-RICHARD PAGAN: Well, to be honest, social support is probably one of the most important. If you don't have a good social support, you need to find one. There are a lot of great support groups online, as well as in person. The Lewy Body Dementia Association does have an online Facebook support group for living with Lewy. I also have a stronger spiritual life, thanks to my diagnosis. And that gives me a lot of strength and encouragement to live in purpose.
CHRIS FARRELL: And Dr. Ramanan, let's get some definitions in here, what we're talking about. We've been discussing LBD, which as I understand, that's the second most common form of dementia. Alzheimer's is the first. So what are the forms of dementia will you be talking about at the conference?
VIJAY RAMANAN: Great question. So it turns out that neurodegenerative diseases are very, very common, and they become more common occurrences as we get older. As you mentioned, Alzheimer's disease is the most common, but there are other members of that family, and Lewy body disease is right there behind it. And each of these diseases-- Alzheimer's, Lewy body disease, frontotemporal dementia, all of them have their typical presentations and they have their variant or less typical presentations.
And adding to the nuance of that is that these diseases can look different from person to person. And so as much as we are learning about them, we also recognize that heterogeneity, that just like with other common diseases, things like high blood pressure, high cholesterol, diabetes, individuals can be more mildly affected or more severely affected. There may be some individuals with certain types of symptoms or troubles and others with different experiences.
And so this conference is really going to attempt to be comprehensive and holistic. Talk about all of these different disorders and discuss not just the medication therapies and optimizations that are available for them, but also think about some of the exciting advances in research, as well as non-medication supports, exactly the kinds of things that John-Richard was mentioning earlier, which are critical for care as well.
CHRIS FARRELL: So John-Richard, as I understand it, you're active with the Dementia Action Alliance, and you've spoken about seeking-- finding community as a gay man with dementia. So what do you think are some of the added challenges, or are there added challenges for the LGBTQ community people living with dementia?
JOHN-RICHARD PAGAN: That's a very good question. The LGBT community, as a whole, we have a very different social environment. We've had to create often our own families that are not necessarily blood relatives. Also as we get older, not all of us are with couples. So when somebody is diagnosed with Lewy body dementia, or any form of dementia, the level of support they may have will differ. They may or may not have children. They may or may not have spouses.
They may be unable to go to parents or siblings because of disagreements with who and what they are. There also is the issue of trusting the medical environment because for many of us, we've had bad experiences in medical care in the past.
CHRIS FARRELL: And Dr. Ramanan, there is or is there research that shows that LGBTQ people could be at higher risk for dementia? And if that's the case, what could be contributing to the greater risk?
VIJAY RAMANAN: That's another great question. And I think stepping back, we need as much research as we can get our hands on because it's absolutely fair to recognize there are active disparities in neurologic care, including for disorders like Alzheimer's and Lewy body disease. And what we really need are data and diagnostics and therapeutics, which are broadly applicable to all of our communities.
And so what I'm excited about in part for the conference on Saturday is the theme of the conference really focusing on well-being. Because what we recognize is, as John-Richard alluded to, management of these diseases does not follow a single one-size-fits-all playbook. It has to proceed from trust and confidence and individualized decision-making between clinicians, patients, and other support individuals.
And we recognize that options which may work for one individual with a diagnosis may not be the best approach for another. And so part of the theme of this conference is really taking that broad look, understanding some of the foundations and exciting advances about these disorders. Recognizing there are some things we don't fully know and haven't yet fully untangled, but really tying together all the expertise that we have to make sure that our patients, their loved ones, and all of us in the field are doing all we can to support our patients.
CHRIS FARRELL: And, you know, John-Richard, dementia can be a scary topic. I've interviewed people who they have a loved one is diagnosed with dementia and all of a sudden people don't show up anymore, even though it's not contagious, but they act as if it is. So why is it important to you to talk about dementia, to sort of be very open about it?
JOHN-RICHARD PAGAN: Well, to be honest-- and again, thank you for a great question. But to be honest, when I first got diagnosed, I was terrified. I was under the impression I had 6 to 8 years to live-- 2 to 8 years, I'm sorry. And all I had for me, fortunately, were my parents to go to and tell, and we were just wrecked. We didn't know where to go. It's important that people know that this may not be a death sentence immediately.
I mean, we can cross the street and die, but the fact is that living with dementia can go on for years. And we need to be aware of that. Also, that you're not alone. There are so many others out there with this and we support each other. We help each other to find purpose. And that changes the whole dynamics.
There was a time when somebody would go ahead and get diagnosed and they would age very quickly. They would get very ill. They would develop symptoms very quickly, and then they would fade. Today, we actually have an opportunity to do medications or non-medication nature methods. We have the ability to really extend life and make it worthwhile.
CHRIS FARRELL: And Dr. Ramanan, and we got just only about a minute left but I'm sure you get asked this question all the time, particularly with something like Alzheimer's or LBD. What can be done to slow cognitive decline?
VIJAY RAMANAN: Great question. And as John-Richard mentioned, medication and non-medication approaches are entirely on the table. For both Alzheimer's and Lewy body disease there are pill medications, which may not stop or cure the disease, but they work on chemicals which are helpful for mental functioning. The goal is to live as long and high quality and rewarding life as possible. Those medication therapies can help with that.
There are emerging treatment options for the early stages of Alzheimer's disease. Again, not cures for the disease, but for those patients who are mildly affected, medically healthy, they may be options and they're options that we didn't have access to years ago. So there's room for optimism here, and the broader goal is if you know what you're dealing with, you can optimize your plan to manage things. Just as you would for other medical conditions, acknowledging that things like Alzheimer's and Lewy body disease are scary-- we have to face that, but there are management approaches.
CHRIS FARRELL: Well, thank you very much for both of you. I'm really glad that we were able to have this conversation. Vijay Ramanan is a neurologist with the Mayo Clinic, and John-Richard Pagan lives in Virginia and is a member of the Dementia Action Alliance. And both are speaking this Saturday, that's November 4, at the Mayo Clinic Conference on Brain Health and Dementia.
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