Early-onset Alzheimer’s Disease: What to Know and What to Expect

People diagnosed with Alzheimer’s disease before the age of 65 are said to have early-onset Alzheimer’s disease. While this diagnosis is rare, the condition is very serious for the patient and their loved ones. Our guest helps define the disease and its symptoms, walks listeners through a diagnosis, and points to unique considerations for patients and their caregivers. Guest: Susanne Seeger, MD, associate professor (clinical) of neurology, University of Wisconsin School of Medicine and Public Health 

Key Moments:

  • Defining early-onset Alzheimer’s disease and its symptoms: 0:58
  • Differentiating vascular and frontotemporal dementia from early-onset Alzheimer’s disease: 7:19
  • Most common memory and thinking complaints: 9:27
  • Diagnosing early-onset Alzheimer’s disease: 11:15
  • Issues people face after an early-onset Alzheimer’s disease diagnosis: 12:50
  • Where to go for help after a diagnosis: 14:35
  • Genetic considerations for patients and family members: 19:36

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Dr. Susanne Seeger

Transcript

Introduction: Welcome to "Dementia Matters," a podcast presented by the Wisconsin Alzheimer's Disease Research Center. Our podcast is here to educate you on the latest research, caregiver strategies, and available resources for fighting back against Alzheimer's disease. I'm your host Nathaniel Chin. Thanks for joining us.

Nathaniel Chin: My guest today on "Dementia Matters" is Dr. Susanne Seeger, a neurologist with expertise in headache and memory disorders. She sees patients at the UW Health Neurology Memory Disorders Clinic, specializing in Alzheimer's disease and other dementias. In addition to her clinical work, Dr. Seeger is also a teacher and a coach at the University of Wisconsin School of Medicine and Public Health, where she mentors medical students in patient-centered education and skills development. Welcome, Dr. Seeger, to "Dementia Matters."

Susanne Seeger: Thank you.

Nathaniel Chin: On today's program, I want to focus on early-onset Alzheimer's disease, a condition more often seen by a neurologist. So can we start by having you define this condition for our listeners?

Susanne Seeger: Early-onset Alzheimer's disease is diagnosed if the cognitive difficulties start before the age of 65. Most of the patients with early-onset Alzheimer's disease that I see in my clinic are in their 50s or early 60s, but the youngest was 39.

Nathaniel Chin: So we can have people that in their 30s and 40s with true disease.

Susanne Seeger: That is correct.

Nathaniel Chin: Wow. Okay. Well how is early-onset Alzheimer's disease different from late onset?

Susanne Seeger: In most cases, these patients will also present with memory complaints, just like the late-onset Alzheimer's patients. But there are also a substantial number of patients who have non-memory complaints. For example, some patients may have great speech difficulties or language difficulties where they have a harder time expressing themselves, a harder time understanding what somebody is saying to them, a harder time repeating conversations or directions.

Nathaniel Chin: So there's more variation, would you say, with an early-onset patient compared to someone I would see in my geriatric clinic?

Susanne Seeger: Absolutely. Another possible manifestation is this so-called visual-spatial impairment. These patients appear like their glasses are not working, although they are, their eyes are just fine, but their brain cannot interpret what they're seeing. So what they may experience is, for example, they're looking for something in a cluttered environment and they just can't find it. The classic example is they open their refrigerator looking for the milk and just can't see it, although it is right in front of them. Another example is they try to read and keep losing the line. They may trip over things. They may have run into things and obstacles. And the most serious manifestation, as you can imagine, is getting in a car accident because they just didn't see the other car.

Nathaniel Chin: Wow. You know, another question that people ask me is that do people with early onset progress faster than people with late onset?

Susanne Seeger: Unfortunately, that's often the case despite the fact that younger patients of course are younger and healthier, but the disease course seems to be much more rapid. We cannot always predict who is going to progress rapidly and how fast. But the tendency is definitely there.

Nathaniel Chin: As far as I know, we're still exploring the underlying mechanism for Alzheimer's disease in general. But do we think it's different in people with early onset versus late onset?

Susanne Seeger: There are three known genetic mutations that are inherited in an autosomal dominant fashion, and they lead to fast accumulation of amyloid and different processing of the amyloid

Nathaniel Chin: And when you say autosomal dominant, you mean that when it's passed on, you only need one version of it?

Susanne Seeger: That is correct. So somebody who has that gene will have Alzheimer's disease or will develop Alzheimer's disease for sure. And all their first-degree relatives have a 50% chance of developing Alzheimer's disease.

Nathaniel Chin: So is early-onset Alzheimer's disease more difficult to diagnose than late onset?

Susanne Seeger: In many cases, yes, it is more difficult to diagnose. I think there's often the tendency to just not believe that somebody who's that young could have dementia, and then the families, the patients, we as physicians try to find all kinds of excuses why they are like this. Maybe they just got a divorce. Maybe they just had a new baby. Maybe their daughter is acting up at school. Or their job responsibilities have changed. So we often try to find an excuse for why they are the way they are, but eventually the reality will sink in.

Nathaniel Chin: On the flip side of the word excuse, there are other reasons though why a person could have cognitive impairment, especially in someone young. So can you give us other non-stress related cognitive impairment causes?

Susanne Seeger: People who are under the age of 65, of course, are less likely to have a dementing illness, even if they have memory complaints. They may just have a hard time concentrating. In addition to all the stressors that we just talked about, they may be depressed. They may be anxious without getting treatment for it. They may have a sleep disorder, especially obstructive sleep apnea — if left untreated it can lead to cognitive impairment. They may have a thyroid dysfunction. They may have vitamin deficiencies. And another very important one is medication side effects. So let's say somebody struggles with their sleep, they take sleep medication and then take more sleep medication and then they get something over the counter and eventually they will have a toxic mix of medications that make it harder to think and concentrate.

Nathaniel Chin: So there's a whole bunch of variables that we have to consider, but for you in particular in early-onset dementia, there are other various causes of brain disease.

Susanne Seeger: That is correct. So let's say we have got everything else that could explain the cognitive difficulties and we're sure now that they either have mild cognitive impairment or dementia. We need to consider non-Alzheimer's dementias as well. And still under the age of 65 the most common cause of dementia is Alzheimer's disease, but the two runners up so to speak are vascular dementia and frontotemporal dementia.

Nathaniel Chin: Can you explain for our listeners your definition of vascular dementia and then what you see in frontotemporal dementia?

Susanne Seeger: Vascular dementia is fairly easy to diagnose. That occurs if somebody has had a stroke or more than one stroke and develops cognitive difficulties. And then when we get a picture of the brain, an MRI for example, we can see the strokes. That's a relatively straightforward diagnosis to make. When it comes to frontotemporal dementia though, there are different manifestations. Some of them overlap with Alzheimer's disease again, so it can become more tricky. But one of the manifestations is language impairment. So again, these patients will have difficulties expressing themselves, understanding, repeating and so on. And the other one is the behavioral variant of frontotemporal dementia. And often these patients have changes in their personality.

Nathaniel Chin: Not necessarily a memory complaint, but rather just that kind of change.

Susanne Seeger: Yeah. And you can imagine that those would be very hard to diagnose. And often these patients are first treated by a psychiatrist, or they're simply declared as a complainer or somebody who just doesn't want to work. So they may have faced those obstacles in their early course because people just don't believe that they have a dementing illness. And the behavioral variant, frontotemporal dementia can have two different manifestations. There are those who become more apathetic — they lose interest in the hobbies or any kind of activity. And then there are those who become more dis-inhibited — they do socially inappropriate things. They may do reckless, careless actions and they can sometimes result in substantial financial consequences or even legal consequences. And if the diagnosis is not made early, there is a potential for all those complications.

Nathaniel Chin: How common is it for someone under the age of 65 to have a memory or thinking complaint?

Susanne Seeger: Any memory or thinking complaint? It's pretty common. The more we all hear about Alzheimer's disease, the more we become afraid of it. So if we just walk into a room and forget why we're there, or if we can't find our key, we think, Oh my God, do I have Alzheimer's disease? Whereas if our kids do that, we just say, well you are just not paying attention. So it's very common that people complain about memory. But people who have definite disease as an underlying cause, probably a minority.

Nathaniel Chin: And what is the most common complaint in your clinic?

Susanne Seeger: The ones that I just mentioned, right. I walked in the room, can't remember why, or I lose my key, I forgot a doctor's appointment. And quite frankly, that's part of normal life, especially in middle age because that's the time in our life that can be quite stressful. Parents are getting older, they need more help. They may have dementia or kids have become teenagers, which is an a whole different challenge on top of it. Life becomes harder. Usually people in middle age have more responsibilities at work. So live is just much harder. And that by itself can interfere with sleep and with the ability to care for yourself — the ability to really make sure you get enough sleep and enough exercise. So there can be multiple factors making people more forgetful and inattentive.

Nathaniel Chin: And so given all of these multiple factors, how do you determine whether a condition is due to dementia or due to something else like these other factors? What tools do you have?

Susanne Seeger: The most important tool is just talking to the patient and their family. So one really needs to gather a lot of information from the patient, from their family members, from others who know them well. So we take a very thorough history, again, emphasizing their stage in their life, their work situation, their lifestyle. Other tools are the physical exam; we need to do a good physical exam, and a good neurological exam. And then in our clinic, of course, we perform the so-called memory testing, which is, you know, more than just memory testing. We test multiple cognitive functions, and that often gives us a clue as to what's going on.

Nathaniel Chin: And I appreciate you initially starting off by saying it's also the report from the family. So often people think, okay, this is my experience. I'm going to tell you and that should be enough, but we actually need to get input from those that know the person the best.

Susanne Seeger: That is correct, and this is not always easy. If you meet with a patient and his or her spouse in clinic, often the spouse doesn't feel free to talk about it. It can be a little bit embarrassing. They might be a little bit more tongue-tied, so we try to interview them in separate rooms so that everybody can speak their mind.

Nathaniel Chin: Now patients with early-onset dementia are faced with special circumstances that patients in my clinic with the late-onset dementia don't typically encounter. So putting the disease itself to the side, what kinds of issues do you see in your clinic?

Susanne Seeger: That can be multiple issues. Let's start with work. Some of them may still be working. They may even be the main bread winner or the sole bread winner. They may be the ones who carry the insurance. So the family depends on them still working, but the workplace may not be the right place for them anymore. Some of them, by the time they see us, have already made mistakes at work, they've already been disciplined. They may already been demoted; they may even have been fired already. So the loss of a job or the threat of losing a job is always there. And that's one of the biggest issues we have to face. The other thing is kids. Some of them may still have young kids at home, and the role of the parent changes. So somebody who is a father and develops dementia may just not be like other fathers anymore. And it's tough for those kids. They find different ways to grieve. Some of them may grieve, but some of them start acting up. They become more difficult. They drop their grades at schools. So that's a factor. Of course, the other spouse struggles with holding on to their own job while caring for the patient with dementia. So that is sometimes a very, very difficult social situation.

Nathaniel Chin: It almost feels overwhelming. And so what do you recommend to people or where do people go for help?

Susanne Seeger: In our clinic, and in your clinic, of course, we're blessed with a very, very good social worker. And social workers at memory clinics usually know a lot about the resources in the areas about caregiver organizations and home care agencies. They can help with applications for disability, which eventually is something that happens. So there's definitely help out there. Also the caregiver or future caregiver needs to learn a lot about the disease. So we usually encourage early to attend seminars, classes, read things online, join caregiver support groups, and so on. Because it is so important to know what's coming and to plan ahead.

Nathaniel Chin: People are not alone. Right. And unfortunately there are other people in similar situations and so they shouldn't try to do this alone. They should really reach out to the community, to the health care system to get more information and training. I like the way you said that.

Susanne Seeger: Absolutely. And they should also reach out to family members and friends. And that's a situation where you find out pretty quickly who your real friends are.

Nathaniel Chin: Now what things should patients with early-onset Alzheimer's be doing as far as legal matters in healthcare? Because you brought that up. Should they be going to an attorney, or is this something the social worker would be able to handle?

Susanne Seeger: Well, the answer is both. At the minimum there should be a healthcare power of attorney and a financial power of attorney and you can do those forms on your own at home. The signature though has to be witnessed. It does not have to be notarized and the witness cannot be a healthcare provider or a family member. So ideally this would be witnessed in the clinic by the social worker or it would be witnessed by somebody at the bank and that's usually a service that's available for free. And the attorney costs money of course, but if the family needs to work on a will, it's probably better to get an attorney involved.

Nathaniel Chin: And then when it comes to working, as you mentioned, I know it's a case by case basis, but would you say for some people you could continue to work at least for a short while or should it everyone who gets diagnosis stop working?

Susanne Seeger: It really depends on how far advanced the diagnosis is or the disease is. It depends on what kind of work they're doing. It depends on how supportive the employer is. I have seen employers who are incredibly supportive and allow this person to stay on staff for as long as possible, even if their responsibilities change and at the end they may not contribute much anymore. But at least they have a home in terms of their work and their relationship with coworkers. But we have to be realistic that in many jobs, in most jobs, a mistake can either be very costly or can be dangerous for the patient or for coworkers. So it really depends what the job is. It's better to stop working rather than being fired.

Nathaniel Chin: And in addition to those obstacles for people with early-onset dementia, spouses and other family members may face their own challenges. So what do you tell family members after you give this diagnosis?

Susanne Seeger: When I give the diagnosis, I acknowledge that it's going to be a shock for the patient, for the family. There is no way around it. That's going to be a sad day. And I tell them it's okay to grieve. But the next thing I tell them is that we are there for them. So there's definitely resources out there and we are there for them. But they do need to plan ahead, and unless there are other family members who can provide care when the spouses at work, sometimes, unfortunately it means that the spouse will either have to cut back on their work hours or even stop working for a period of time, go on medical leave and so on. There are adult daycare centers, so sometimes that helps, so that the spouse can still go to work and then drop off their loved one and pick them up after work. So that's definitely an option for a period of time.

Nathaniel Chin: Now planning is key. And I guess switching from the patient to the family member, because early onset has a genetic component, do family members often ask one for a blood test for the patient or two if they should get a blood test to see if they have this gene?

Susanne Seeger: We often have that conversation, but it's a difficult conversation to have. For the patient, it's really not that important to know — they already have the disease. It might be important to know if they are planning on enrolling in a clinical trial, specifically for familial Alzheimer's disease, but the vast majority of patients choose not to have the test. I also talk to their first-degree relatives — their siblings or the adult children — about it, and I tell them that if the genetic test is positive, you will know with 100 percent certainty that you will get early-onset Alzheimer's disease. And you're really have to think about what you're going to do with that information. It's going to be very tough to deal with it. And I would say the vast majority of relatives choose not to go ahead with the testing because we don't really have any treatment.

Nathaniel Chin: And that's important to know because for late onset there's a genetic component, but it's merely a risk factor if you have it. It doesn't mean you're getting the disease. So there is a difference between what we're talking about with early onset and with late onset.

Susanne Seeger: That is correct.

Nathaniel Chin: For our audience members who have a loved one with early Alzheimer's disease. What have you learned in your experience that you want them to know?

Susanne Seeger: I think the most important thing to realize early on is, and we said that before, you're not alone, there's help out there, but you do need to plan ahead. Unfortunately I often see that family members start to try to cope by just ignoring the facts for a while. But then when their loved one reaches the later stages of dementia and cannot be left alone anymore or have some behavioral manifestation, it suddenly turns into a crisis. Once you have a crisis, it's very hard to fix things. So we need to plan way ahead to make sure that things go smoothly and that people progress in the caregiver role and also in the way care is provided. In some cases, patients with early-onset Alzheimer's disease will have to be placed into a memory care unit, and we cannot do this overnight. That needs to be planned ahead.

Nathaniel Chin: And then would you also say that by being prepared, you are allowing for a better quality of life because you're avoiding crisis moments? You're avoiding these very stressful times later on in the disease.

Susanne Seeger: Absolutely. And one other important factor to consider is yes, we want to provide quality of life for the patient who is affected with Alzheimer's disease. We want to maintain their dignity, but we also need to make sure that they're safe and sometimes it's hard to keep them safe and maintain their dignity at the same time. And that's a big struggle for families to sort this out and make sure affected patient doesn't get treated like a child.

Nathaniel Chin: These are not easy issues, which I believe is why it's so important that people have neurologists like yourself and geriatricians to go to, to help answer some of these questions. So with that, I'd like to thank you for being on "Dementia Matters," and we hope to have you on in the future.

Susanne Seeger: Thank you very much. It was my pleasure.

Closing statement: "Dementia Matters" is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.