For individuals concerned with memory loss, the first few steps for screening and diagnosis can be the most intimidating. Dr. Cynthia Carlsson discusses recent progress in Alzheimer’s disease research, health disparities some groups face with the disease, and advice for individuals and caregivers who have concerns about memory loss. Guest: Cynthia Carlsson, MD, MS, professor, University of Wisconsin School of Medicine and Public Health, and director, Wisconsin Alzheimer’s Institute
- What is the current state of Alzheimer's disease research? 1:41
- Is there more funding toward Alzheimer's disease research and care? 2:59
- How has awareness of Alzheimer’s disease impacted diagnosis? 4:12
- What are the health disparities we see in Alzheimer’s disease? 7:46
- What are the benefits for early screening for Alzheimer’s disease? 11:07
- How does an early diagnosis affect family members or caregivers? 13:36
- Where should individuals concerned with memory loss look for resources? 15:06
- Are there ramifications in research for early diagnosis? 16:08
- What is your advice for individuals concerned with memory loss? 16:50
Nathaniel Chin: Today's guest is Dr. Cynthia Carlson, a geriatrician and Alzheimer's disease researcher at the University of Wisconsin School of Medicine and Public Health. Dr. Carlsson treats Veterans with memory concerns at the Veteran's hospital in Madison, Wisconsin, and also studies vascular risk factors for Alzheimer's disease, such as high cholesterol and high blood pressure. Since 2018, Dr. Carlsson has served as the director of the Wisconsin Alzheimer's Institute at the University of Wisconsin–Madison, and she is also a member of the U.S. Department of Health and Human Services advisory council on Alzheimer's research, care and services. Dr. Carlsson, welcome back to Dementia Matters.
Cynthia Carlsson: Thank you, Dr. Chin, it's great to be here today.
Nathaniel Chin: Now I want to set the stage for our listeners about Alzheimer's disease. So according to the Alzheimer's Associations 2020 Facts and Figures Report, more than 5 million Americans are living with Alzheimer's disease, and it's the sixth leading cause of death in the United States. Now there are more than 16 million Americans who provide unpaid care for people with Alzheimer's disease and other causes of dementia. Now, these statistics are staggering and these numbers are projected to rise in future years. So can you give us some good news about this disease and tell us how we as a country are making strides and addressing treatments and support for people and families who are affected by Alzheimer's disease and other dementias.
Cynthia Carlsson: That's a great question. So again, we work with patients, families, caregivers on a regular basis, and I think some of the good news is even captured in the name of the National Council on that is addressing care, services and research. So again, you know, while we're trying to find ways to prevent Alzheimer's, which is something we all want to work toward, there's a lot more effort being made by national institutes of health and other research organizations and finding ways to identify the disease early, treat it and try to prevent it. But there's also coordinated efforts in how to provide better care in the clinic and out in the communities and better support for caregivers and families. I think governments, state governments, counties, and other philanthropic organizations are recognizing that we really need to help support people who are already affected by this disease, as well as finding ways to prevent it in the next generation and treat people effectively.
Nathaniel Chin: And so it seems like in addition to your typical clinical providers, there are more community organizations. There's more researchers, there's more activity as far as not only trying to find the cure, but help manage those who are already affected. And isn't it true that we have more funding each year, fortunately, toward these efforts?
Cynthia Carlsson: Yes, there's more funding by the U.S. government into the National Institutes of Health and other agencies that they support to help us identify good treatments, but also better care. So, you know, what is the best way for families to be supported during this time? Or, you know, if caregivers need tools to be successful in caring for someone with Alzheimer's, how can they get the best tools and what are the best ways to train them in the limited time they have to devote to that. So there's a lot of different types of research out there. You know, how can we affect our lifestyles? How can we better care for people with dementia? Are there better medicines to take or to avoid? So a lot of different progress we made, a lot of different facets here, which will hopefully will chip away at the impact of this disease.
Nathaniel Chin: Now, there are a number of reasons why we likely see Alzheimer's disease cases rise over time. And some of those include a growing population and also a growing population of people who live longer. But another reason is general awareness about Alzheimer's disease and a higher percentage of people actually receiving this diagnosis, going out and seeking an evaluation. Is everyone with the disease getting a diagnosis, and how has that changed in recent decades?
Cynthia Carlsson: There have been some estimates that only about 50% of people who have Alzheimer's disease actually have a diagnosis. And there's a lot of reasons why people don't get a diagnosis. One is that a person may think that memory changes are part of normal aging. And so they may think, Oh, that's just me getting old, but I can't remember how to manage my finances or can't remember how to get to my daughter's house when driving. So some people think that's normal aging. And so that's one aspect is that we need to get the word out that there are certain things like may take longer to learn new information as we get older, but that forgetting how to do things, we used to be able to do that that's not normal part. So again, one is dementia awareness, trying to help people see what's normal aging, what's not. There's also the stigma. Some people know that something's probably going on, but they don't want people to label them as crazy. Or, you know as dumb or stupid. And so they may hesitate going in because they've always prided themselves on their intellect and they don't want to have that part of them taken away by getting a diagnosis. The other thing too, is that many clinicians don't have the training or skills or time to help someone work through a diagnosis of dementia, and don't know what to do, what kind of community resources there are to help people once they do get a diagnosis. So that's one thing, again, that our teams are looking at, both in the research and clinical context is to help people to realize that you know, dementia is not a normal part of aging, but it's common. It doesn't mean you're stupid or crazy, but that it's a disease that's happening in the brain. They're helping train clinicians so they diagnose it correctly, and also helping clinicians know about the great community resources to support the patients and caregivers once they do have a diagnosis.
Nathaniel Chin: And I think you ended it perfectly, there is support for people. I mean, we don't have the therapeutic treatment that we're hoping for at least right now, but there are things that we can do, not only for the person with dementia or with cognitive change, but also their family members. And so I think that's an important thing for you to mention that there are still a lot of things that can be done and should be done. And the earlier you come in, the more opportunity we have to help people.
Cynthia Carlsson: Yes, definitely. I think a lot of patients and families will say, you know, they'll either read information, I give them, or we'll talk about the symptoms. And once they kind of understand that it's part of a group of symptoms, that there's an explanation for this, that it's not their loved one in denial or their loved one being obstinate in that and trying not to remember something, that they realize it's a disease it's affecting the brain. And sometimes people find comfort in just being able to understand that, even though it's so frustrating, there's lots of challenges, still being able to understand it and put it in context takes a lot of the anxiety and mystery out of the disease. But there's still a lot of other things we can do to help families and caregivers through an early diagnosis.
Nathaniel Chin: Can you speak to the health disparities in Alzheimer's disease? While Alzheimer's is the sixth leading cause of death in the U.S. overall, the National Brain Health Center for African Americans states that is actually the fifth leading cause of death among African Americans. We also know that African Americans and people in other underrepresented groups are likely to receive a diagnosis later in the disease process. So how can physicians or health centers and other people involved in supporting people with dementia, reach people of color and people living in rural communities?
Cynthia Carlsson: That's a great question. Again, there's only 50% of people who have dementia being diagnosed, but as you mentioned, even smaller proportion of persons of color, African Americans, Native Americans, Latinos, Latinas, and also people in rural communities; and for a variety of reasons, most likely again, the stigma and maybe different in different communities. So there may not even be, you know, the word for dementia in Spanish, I don't think there's a clear word for that. So you're trying to think about how do you describe what dementia is and what it's not in different communities is difficult. But also there's more hesitancy to gain access to care. There may be concerns that this person, again, feels like they are being put down or stupid; there's family concerns about raising concerns and it feels like they're telling on their family member who's has the cognitive changes. And then also just being able to get to a clinic where people feel comfortable, like they can trust the physician, the health care center. So for example, do the people taking care of them look like them? Do they come from the same cultural background? Do they feel at ease with telling them about something very sensitive, like memory concerns. And then people in rural communities, do they have a clinic within a reasonable driving range to go in to be evaluated? Are there telemedicine services available? So there's a lot of barriers to addressing and getting an early diagnosis in general, but even more so in communities of color and rural communities
Nathaniel Chin: And organizations like yours, the Wisconsin Alzheimer's Institute, is working to address that by training providers in rural America and throughout the urban settings, as well as trying to reach as many people as possible through public service announcements and through educational seminars.
Cynthia Carlsson: Yeah. So our team has worked closely with our county-based Aging and Disability Resource Centers, their dementia care specialists, Alzheimer's Association, Alzheimer's and Dementia Alliance of Wisconsin – a lot of county-based and local organizations to help people access clinics and services that are attuned to cultural differences, and trying to improve access to training primary care physicians and doing dementia care in rural towns so that they actually have someone who has expertise. They wouldn't have to travel hours and hours to get to a clinic, but they could go to their local doctor who has extra training in dementia care. So we've helped develop and have about 41 clinics throughout the state of Wisconsin that have received extra training through Wisconsin Alzheimer's Institute. But again, also several in Native American communities, Latinx communities, or African American communities.
Nathaniel Chin: So what do you see are the benefits to patients when they seek help early for those memory concerns?
Cynthia Carlsson: We strongly encourage people to come in early. I know some patients will say, well, what if it's nothing? Then I'll feel bad that I wasted their time, or, you know, wasted my own time. But we always say, you know, it's much rather it's much better to come in early than to sit at home and wonder, is this something of concern? So in addition to getting additional helpful educational information, it's also helpful because some memory concerns are reversible. So for example, we commonly will see people who are on medications, so sleeping medicines or some medicine for gut health or other things that could affect cognition. And so by going through those medicines, either tapering them down or switching to another type, sometimes that'll improve their cognition. Sometimes people have sleep problems or other conditions that if those are treated adequately, like things like sleep apnea, then maybe their cognition would improve, and maybe it's not a condition like Alzheimer's disease. So there are some medicines and medications, but also medical conditions that can be treated. And sometimes the cognitive changes can go away completely. Sometimes they improve somewhat. So getting in early could help you figure out not only you know, is this a neurodegenerative process or brain primary brain condition like Alzheimer's? Or is it something that I didn't know about, like my depression, my sleep problems, my sleep apnea, my medications I used for pain. So it really helps people to be able to put in context what they're experiencing and also helps people to plan for the future. For example, if somebody had a stroke and it caused cognitive changes and there's no signs of Alzheimer's, then they can expect their cognition to stabilize and get better, to some extent, as long as they don't have another stroke. Whereas if somebody's dementia or cognitive problems are from something like Alzheimer's, then they may want to do some planning ahead and put some safeguards in place to as their cognition declines over time. So there are a lot of benefits getting caregivers plugged in with caregivers, support, getting things set up so there's no big crises, they can kind of know what to expect and have kind of a plan in place for those future changes.
Nathaniel Chin: And you just alluded to my next question, which really is how does an early diagnosis help family members or caregivers of people who are experiencing memory change?
Cynthia Carlsson: A lot of times, caregivers and family members want to know, you know, what can I expect, how quickly is this going to decline or will it decline at all? And so, while it's not always easy for us to predict how quickly things will decline, if it truly isn't Alzheimer's dementia that will progress, then we can help them to look for different signs conditions that might, they might experience. So putting them in touch with caregiver support groups, you know, look at putting them in touch with their aging and disability resource center or some community resources that may be helpful. If they're Veterans, there may be some benefits to the VA hospital as well. So helping them to take advantage of support networks around them. And also just letting them know that they're not alone. A lot of family members feel very isolated with this condition even more so now during a pandemic. But again, trying to help them feel connected, make sense of what's going on and feel supported. And sometimes there may be some funding to help with extra care so that the caregivers can get out, do some errands, take some time for themselves, get some rest or exercise. So again, an early diagnosis can really help families and caregivers kind of come together and put a plan in place for the future.
Nathaniel Chin: And where should people go if they have memory concerns, is this a conversation they should have with their primary care provider or neurologist or geriatrician, or should they seek an appointment at a memory clinic right away?
Cynthia Carlsson: I think it depends on the person and the degree of impairment they are noticing, but I think you can always start with your primary care physician or a geriatrician or neurologist. There's also, again, the Aging and Disability Resource Centers -- a lot of them have training to do cognitive screens there. In some contexts, maybe their primary care provider isn't as convinced there's a memory problem, and the family is, and they can set up an appointment directly at a memory clinic. Again, we really, you know, encourage that there's no wrong door to get help. So whether it be through a community-based organization, calling the Alzheimer's Sssociation, talking to your primary care provider … any of these avenues is fine, just make sure that you get your questions answered about the memory complaints you have.
Nathaniel Chin: And are there any ramifications in the research world for having an early diagnosis?
Cynthia Carlsson: An early diagnosis in the research world, again, it gets more complicated the more we learn about the disease, because we can see now through research scans, research tests, we can see some of the earlier changes related to early changes of Alzheimer's disease before memory symptoms start. So there may be more opportunities actually for people who have early diagnosis to get into studies, to be able to see if they could contribute and learn for themselves if there are therapies to help slow down this disease or stop this disease,.
Nathaniel Chin: What advice do you give people who might be listening at home and have concerns about their memory or might have concerns for a family member or a friend?
Cynthia Carlsson: I've had a lot of people ask me this. And again, including some of my own family, friends, neighbors, you know, again, I think what I always try to emphasize is that the goal of the memory clinic and the goal of the memory assessment is really to help protect people's memories. It's not meant to label someone. The goal is to help protect people's memories and to help keep people functioning well long into their lives. And so I think with those goals and knowing that it's not about labeling or taking away privileges, it's really about helping people protect their memories. So trying to talk to a family member and say, let's get in and see if there's some medicines that are contributing to your cognitive symptoms, see if there's anything else, vitamin deficiencies, medical problems, we could get treated and help protect your memory. Or if there is the beginning stages of Alzheimer's or another type of dementia, let's get things in place so we can keep you safe and healthy and doing things in a doing things you like to do, but in a way that's safe. Sometimes people say, I don't want to go in, I don't think I have a problem, and I'll just encourage people to say, well, tell your family members that you think they should go in for a memory check and find ways to help protect their memory. Even if our onset of Alzheimer's is delayed by a year or two, that's an extra year or two of good memories with our grandkids and our families and neighbors. So really anything we can do to help protect our memories and preserve those, those priceless memories that we develop over time, I think it's worth it getting in for an evaluation.
Nathaniel Chin: Well, with that, I'd like to thank you, Dr. Carlsson for your time, and for being able to share with us the importance of getting an early evaluation and possibly an early diagnosis.
Cynthia Carlsson: Thank you, Dr. Chin, this has been great to be a part of the program today.