A new study made national headlines, estimating that in the next three decades, around 42% of adults over the age of 55 will develop dementia. Allison Lindauer is a researcher and an associate professor of neurology at the Oregon Alzheimer’s Disease Research Center at OHSU. She joins us to share what we know about dementia and what people can do to prevent it.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Geoff Norcross: This is Think Out Loud on OPB. I’m Geoff Norcross. New research suggests the risks for developing dementia are much higher than we thought. According to a study published earlier this month in the journal Nature Medicine, more than 2 in 5 people over the age of 55 in the United States will develop dementia in their later years. And a million people a year are expected to develop some form of dementia by the year 2060.
We wanted to check in with the Oregon medical community about where our understanding of this disease is right now and what we can do in the face of this coming wave of cases. Allison Lindauer is an associate professor of neurology at the Oregon Alzheimer’s Disease Research Center at OHSU, and she joins us now. It’s good to have you. Thank you.
Allison Lindauer: Thank you.
Norcross: Allison, when you heard about these new findings about the coming wave, were you surprised?
Lindauer: No, not at all. We’ve known for years that the wave is coming. We haven’t really had signs that it’s decreasing and I’m certainly not surprised to hear that it’s gonna continue to increase. Our population is aging and the number one risk factor for most dementia is older age. We don’t really have any great therapies to stop it. So unfortunately, I’m not surprised.
Norcross: OK, what is dementia?
Lindauer: Yeah, good question. Dementia occurs when the cells in the brain, the neurons, die in a progressive manner. It’s caused by many things, but usually it’s a biological cause. The cells misfire, there’s problems with traumatic brain injury, protein malformations, many things cause it. But it’s a neuroprogressive disease that causes memory trouble but also causes behavioral changes and eventually functional changes. So for a person to have dementia, they have to have both cognitive or memory changes as well as functional changes. That’s kind of where our diagnosis rests in the interview.
Norcross: We talk about dementia like it’s this big thing and it encompasses a lot of different conditions. Can you talk about the differences?
Lindauer: Yeah, thank you. Dementia, that term, can be thought of as an umbrella term. There are many different types of dementia. So for example, we talk about viruses. “Virus” is the umbrella term and COVID is one type of virus. So if we think of dementia as the umbrella term, there are several types that we see commonly. Alzheimer’s is the most common. It’s the most common type of dementia in people over the age of 65. Other dementias, such as frontotemporal dementia, are more common in people under the age of 65. In our community, we call it FTD, F for “find” T for “timely” and D for “diagnosis.” It’s very hard to get a diagnosis for FTD, but it’s important because it affects people at the apex of their careers and family lives.
Norcross: Go on.
Lindauer: There’s also vascular dementia, which can be provoked by high blood pressure and unmanaged cholesterol. Then there’s a type that we see quite frequently in our work, which is Lewy body dementia. Each of these dementias I’m talking about do have support organizations. And I would encourage your listeners to really explore that.
Norcross: You were talking about the many different forms that dementia can take. And that resonates with me hard because I have a father-in-law who passed away from some form of dementia. I have a mother-in-law who has Alzheimer’s. I have a mother who has dementia that was probably caused by a stroke – that’s the vascular part that you were talking about. And just last week, I lost my stepbrother to frontotemporal dementia, who was only 68. I only bring this up because we’re talking about my immediate family, the people who are closest to me. And that kind of touches on just how pervasive this disease is, doesn’t it?
Lindauer: It really does. Everywhere I go, when people ask me what I do and I tell them I’m a dementia specialist, they have a story. My plumber, my mother, my sister, my uncle. It’s very, very common. Not only is it common, but there continues to be a fair amount of stigma associated with it. As a society, we need to bravely step forward and really recognize that this is a biological illness that we have to address. It’s not a fault of anybody or a representation of how they live their lives. It’s a bad thing that happens to families.
Norcross: Can you talk more about that stigma? Where do you think it comes from?
Lindauer: I think it’s an old, anachronistic belief system that helps us cope with the fear that comes with dementia. Dementia is terrifying. People who’ve received the diagnosis … it’s a very hard thing to hear. So to understand it and cope with it, we like to think, “well, they did something different than I did” or “they lived a different way.” In many, many cases that is not the situation. I’ve met some brilliant people with dementia and nobody’s done anything wrong. It’s just a disease process.
Norcross: Yeah, just within my own family sample, we have people who are very sociable and people who are not. People who ate one way and people who ate a different way. People who were engaged and people who were not. There just doesn’t seem to be any through line for any of it.
Lindauer: In some cases, there are things that we can do to help families. For example, in vascular dementia, we can try to prevent it with good heart health practices, lowering blood pressure, keeping cholesterol under control. But in most of the cases we have very little control over why somebody develops it, right now.
If I may, what we do need is more research. We really need to understand why people develop dementia of all types – Alzheimer’s, FTD, Lewy body. We need to understand various treatments. We need to understand how to care for caregivers. There’s just so much work that needs to be done. What’s interesting is that a lot of people who experience dementia don’t recognize that they can participate in research. And they don’t realize that they really can make a contribution.
Norcross: So how can they make a contribution?
Lindauer: Your team has put our Alzheimer’s Disease Research Center’s website address on your site, so they can just check in there. Our site is one of 37 NIH-funded Alzheimer’s Disease Research Centers around the nation. And not only do we do all types of research – technology, caregiving, medication – but we really want all Oregonians to contribute. We are eager to have rural families participate and we have studies for rural families. And I’d also like to thank the African American community in Oregon, which has really stepped forward to help us understand how to manage dementia. Dementia is more common in African American families, so we really need to take this very seriously.
Norcross: Why do you think that is?
Lindauer: I’m not an expert as to why it is. I can only speculate. And again, a lot of that work is still being done. Our history, as you well know, with research with African American families, is sobering at best. So these families are of course reluctant to join us in the research process, but when they do, they really help us learn and we’re learning more about why it happens.
Norcross: Let’s go to Zach, who joined us [by phone] from Portland. Zach, welcome to the show.
Caller: It’s just really poignant that I turn on OPB today and hear this, as my mother is currently in transit to memory care. She was diagnosed with early onset dementia in 2019. And we’ve been bearing witness to her decline, the stress it’s given my stepfather as her primary caregiver, the cruelty of the disease, and just how it takes the ones we love the most in such a slow and painful fashion.
Norcross: Thank you for sharing that, Zach. How does that resonate with you, Allison?
Lindauer: Oh boy, I hear you. Of course our own family’s been affected. But I think what I’m really hearing in Zach’s voice is the grief. Some of my work is around this concept of pre-death grief. We know that when a family hears of a diagnosis of dementia, they kind of start grieving. And then the grief kind of continues across the spectrum of the disease. You lose a person little by little by little. You’re not quite sure when and how to grieve because it’s so complicated.
Then after death, families often experience a strange experience of both grief and relief. It’s really complicated and I really encourage families to talk to their support systems, friends, families, counselors, professionals. Because grief is a very real and important experience, and can really undermine your sense of well-being.
Norcross: And how should we go about starting that conversation with our loved one who we see possibly slipping and getting in front of that pre-grief?
Lindauer: For some families, that’s the hardest thing, to get an assessment. But it is the most important thing when you notice some changes in memory. A diagnosis can be frightening, but a diagnosis opens the door to so many things. It opens the door to potential treatments. It opens the door to engaging in activities that can slow progression of disease. It opens the door to research opportunities. There are so many good things about getting a diagnosis.
The thing that I noticed with families I worked with – I work with caregivers quite a bit, that’s where my research focuses on – it’s often a weird sense of relief. One family told me, “We just kept fighting and fighting, and I thought I was just being awful. But the reality is, it was the dementia that was getting in the way of our relationship.”
So to your question, what I tell families is if they’re worried about somebody in the family having memory trouble, you can ask them to go with you to get an assessment, and make that a gift about you … “Mom, I am worried about your memory and it would help me a great deal if you could come with me and get an assessment.” Make it about you, so that mom doesn’t feel like she’s being targeted or [being put] in an awkward position. She really is going to do this to help her daughter, to help her son, to help her family – which she is. When a person with memory trouble goes to get an assessment, it’s a very brave way to help their family.
Norcross: We asked for comments on our Facebook page on this topic and Elizabeth Lenzen-Lombardi said: “Support for patients and their care providers is so important. Our society doesn’t easily support care in place versus putting family members in care centers. I work for an employer who preaches work-life balance, but the lack of understanding of what it is to care for a dementia patient is not well understood or supported.”
How do you respond to that?
Lindauer: Elizabeth is singing my song. I’ve really been doing caregiver research with families with dementia for the last 10 years. And there’s so many components to supporting families. What I and my team work on is helping families learn how to deal with the behavioral symptoms that come with dementia, and all of our research is by telehealth. We recognize that families can’t just drop everything and go to OHSU and sit in on a research project. We need to come to them.
But to Elizabeth’s point, there’s so many other parts of care. And for families that work – which is very hard – I do encourage them, as soon as they can, to fill out their paperwork for family medical leave. So that when the time comes that they need more support, they can get more support. It’s not perfect. We have a lot of work to do. She’s right.
Norcross: Cheryl joined us by phone from Lake Oswego. Cheryl, welcome to Think Out Loud.
Caller: My question is about the genetics of vascular dementia. My husband had vascular dementia. He was diagnosed in 2017 and died in 2023. And that was the cause. But his mother had it. All of her sisters had it. His sister has it. His adult children are terrified that they’re going to develop this condition, as is his other younger sister. I’m a geneticist by training, so I know a bit about what I’m talking about. But when it comes to vascular dementia, is there anything known about it? Is it familial very often, or is that an outlier?
Lindauer: Well, Cheryl, I feel like you probably know the answer better than I do because with vascular dementia, I personally am not aware of the genetic component. What I do know is that vascular dementia often co-occurs with Alzheimer’s disease. And we know, in many cases, Alzheimer’s disease is a random occurrence. But there is a genetic component. So that’s where I would be thinking the vascular part certainly is part of it. But we do know that they happen together. So I would definitely look down the Alzheimer’s path because I know there’s a lot of work around that these days.
Norcross: Thank you for that, Cheryl.
We also had a question from Ed Bishop on Facebook, talking about particular factors of dementia. Here’s one: “What is the current state of research regarding the role played by cerebral-spinal fluid circulating through the brain to clean out plaque-forming proteins during REM sleep?”
I think this is a very specific question, and I know that sleep is critical. Do you have research in the front of your brain on that?
Lindauer: You’re absolutely right. Sleep is critical and one of our center directors, Miranda Lim has done some fabulous work in that arena. But I’ll be honest, it’s not my specialty, other than we do know that sleep is critical for brain health. So when we see a person in our clinic who has cognitive problems, one of the first things we do is assess whether they have sleep apnea. Do they have sleep troubles? And if they do, we wanna jump on that right away. There is a component of cleaning the brain of amyloids, but that’s an area that I just don’t specialize in.
Norcross: This gets at the research question. You spoke very well about how important it is and how much more we need. Can you give me a sense of just the gaps in our knowledge? What do we need? What do we know that we need to know?
Lindauer: There’s so much we don’t know, so certainly from understanding why and how people develop memory. For example, at our center we have longitudinal studies where people come in every year. We do cognitive tests and they help us learn more. We need to know more about how to support caregivers, to Elizabeth’s question. What is the effective way to help them thrive in this very stressful situation?
We need to learn more about biomarkers. What are the blood tests and the brain tests that we need to do to really help us narrow down the diagnosis? We’re getting closer on that one. We know, for example, that PET scans can be very helpful to identify what’s going on in the brain. And there is some early commercial blood work. It’s not perfect, but we’re on a track of learning more.
There’s just so much we don’t know, but we keep trying. Every year the Alzheimer’s Association has an international conference, where thousands of scientists come together and grapple with these difficult questions. At those conferences there are scientists working on everything from the very specific cellular changes, all the way to population health.
So not a great answer for your community that’s struggling, but I want you to know that there are a lot of people working on this. We need more volunteers. We definitely need more volunteers from underrepresented groups – rural, African American, Asian, even people from lower socioeconomic groups.
Norcross: OK. Kathy Paxton[-Williams] on Facebook wrote the big question here, that I think is very helpful for all of us: “What simple things can people do to help prevent dementia?”
Lindauer: I love that question. Dementia is not like a heart attack where I can tell you do this, this and this, and it won’t happen. It’s not perfect. But I have some ideas and it’s based on the science. Every couple of years The Lancet, a popular journal, comes out with studies that show what can be productive. As middle-aged adults, the most important thing we can do right now is prevent and treat hearing loss. About 7% of the causes of dementia are attributed to hearing loss.
Norcross: This was surprising to me.
Lindauer: Yeah, it kind of makes sense. If you can’t hear it, you can’t remember it, right? But we do think it’s much more on a much more cellular level. And we do think what the research is hinting at is that correcting hearing loss can help. Control that cholesterol. If you have high, low density lipoprotein, LDL cholesterol, get that down. Treat depression. Then the other one that’s really important is to be social. Spend time with friends. Spend time out of your house and be with people that you enjoy.
Those are the top ones. The other really big one is early childhood education really can help prevent dementia, as a person ages.
Norcross: It has to be said, though, you obviously rely heavily on NIH funding for your research. And in the current environment, federal funding for anything is pretty wobbly. How do you move forward with this necessary research in the current political reality?
Lindauer: I wish I had a terrific answer for you. It’s stressful. You’re right, we depend on funding from the National Institute on Aging. We’re all a little bit anxious, but we’ve been through tough times before and the United States really wants to support us. So I’m hoping that it’ll pan out. Some of us have secured our funding. My caregiving studies are, thankfully, well funded and going. I’m in good shape but many are worried about it. We’re especially worried about our early stage investigators, who are trying to get a leg up. This must be a really tough time.
Norcross: Yeah, and thank you so much for that. I’d like to get some optimism in here if I can. What do we know about dementia that we just didn’t 10 years ago?
Lindauer: Well, I think the hearing loss is, because we know hearing aids are more affordable and more available, so that excites me. The other thing that we were learning 10 years ago, but we know even more now, is that exercise can help prevent or slow the progression of dementia. By exercise, we mean 150 minutes per week. Break a sweat. This is not just a stroll around the park. You’ve got to work out. We know so much more about how to care for caregivers and what they need. And we’re starting to see that people are living longer and they are able to maintain function, even with some impairment. We need to keep that hope alive.
Norcross: Allison Lindauer, thank you so much. This was a great conversation.
Lindauer: I hope so. Thank you for spreading the word.
Norcross: Allison Lindauer is an associate professor of neurology at the Oregon Alzheimer’s Disease Research Center at OHSU. You can find links, resources, and ways to sign up for trials at OPB.org/thinkoutloud.
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