Until recently, it was difficult for doctors to diagnose Alzheimer’s disease with the limited tests available. Thankfully, there are now many different options to help doctors make an accurate diagnosis of Alzheimer’s disease, even in its earliest stages.
In this episode of the "Rethinking Alzheimer's Disease" podcast, we learn about the tests that can help doctors tell whether someone is at risk of developing Alzheimer’s disease.
Dr. Sharon Cohen, who knows about Alzheimer's both as a doctor and through her own family, shares how important it is to catch the signs early. She explains the steps of figuring out if someone has Alzheimer's, starting with noticing small changes in memory or mood, to more detailed checks by doctors, and even special scans that look at brain health. She also talks about the different reasons someone might start forgetting things or acting differently, and why it's crucial to get these symptoms checked out. It's not always Alzheimer's; sometimes, other health issues could be the cause.
Until just a few years ago, treatments could only help treat symptoms, not actually slow down the disease. Now, there's hope with advances that can change the course of the disease. Dr. Cohen stresses that knowing about Alzheimer's early gives people more choices, like planning ahead, deciding on treatments, or joining studies for new medicines.
The episode wraps up by encouraging people with Alzheimer's and their families to learn more and get support from organizations and doctors. This way, they don't have to face Alzheimer's alone and can find the best way to deal with it.
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Rethinking Alzheimer’s Disease was made possible with support from Eisai Inc.
[01:49] Personal Insights from Dr. Sharon Cohen
[02:31] What are the four steps to an Alzheimer's evaluation?
[03:05] Step 1: Identifying early signs and symptoms
[06:10] Step 2: Getting initial assessments - cognitive tests and medical history
[08:19] Step 3: Referral to a neurologist and biomarker testing
[11:01] Step 4: Diagnosis and management of Alzheimer’s disease
[12:33] Navigating diagnosis and treatment options
Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk.
©2024 Mission Based Media Ltd • April 2024 • AD-M2059
[00:00:00] Russ Paulsen: There are new screening tools coming out that will detect the cognitive symptoms early and easy and help your doctor make a determination - is this Alzheimer's?
[00:00:13] Dan Kendall: For decades, doctors had very few ways of diagnosing Alzheimer's disease. And the only available treatments were used to address the symptoms of Alzheimer’s, but which couldn’t alter the course of the disease. Thankfully, that's no longer the case.
[00:00:27] Dr. Sharon Cohen: There are treatments available. There is a disease modifying treatment fully approved in the US, so this idea that there's nothing that can be done, we really have to get past that.
[00:00:37] Dan Kendall: Even with these advances, you may be asking yourself, do I really want to know? What could I even do?
[00:00:44] Dr. Sharon Cohen: There's a whole lot you can do. You can get your affairs in order. You can decide what treatments to avail yourself to, what support services. You can seek information, you can join a clinical trial. Somebody who may have pre-symptomatic Alzheimer's could join a prevention trial and have the advantage of a medication that may slow progression to more symptomatic stages.
[00:01:07] Dan Kendall: I'm Dan Kendall, and this is the Rethinking Alzheimer's Disease Podcast.
The Rethinking Alzheimer's Disease Podcast was created by Mission Based Media with support from Eisai. This series is for educational purposes only, and is not a substitute for formal medical advice, diagnosis, or treatment. The opinions expressed are the individual views of the speakers themselves and do not necessarily represent those of any organizations. If you have questions about a medical condition, talk to your qualified healthcare provider. For our list of resources about Alzheimer's disease, please visit healthunmuted.com/resources. All guests participated voluntarily and did not receive any form of compensation for their involvement.
[00:01:49] Dr. Sharon Cohen: Both of my parents developed Alzheimer's disease, which was so tragic. Wonderful, talented people, each with their own journey with this disease.
[00:01:58] Dan Kendall: That's Dr. Sharon Cohen, who was also featured on earlier episodes. She’s a behavioral neurologist and the medical director of the Toronto Memory Program. Like so many people, Dr. Cohen has a personal connection with Alzheimer's.
[00:02:12] Dr. Sharon Cohen: And it really helped me understand from a personal perspective what this disease is all about, what this means to the person going through it, to family members, and the absolute need for dignity and listening to patients and families as to what they feel is important.
[00:02:31] Dan Kendall: Her personal experience fuels her passion for Alzheimer's care. In this episode, Dr. Cohen walks us through the four steps of an evaluation process. Historically, diagnosis of Alzheimer's disease has been based on documenting noticeable symptoms like mental decline. At that point, Alzheimer's disease has already caused a lot of damage to the brain. However, as Dr. Cohen points out later in this episode, and in previous episodes, the process of being evaluated for Alzheimer's disease can begin years before symptoms arise.
Let's start with step one, identifying early signs and symptoms.
[00:03:10] Dr. Sharon Cohen: It's important that individuals look out for changes in their memory, changes in word-finding, navigation, less ability to multitask or to use day-to-day objects, set the microwave, set the alarm clock, use the TV remote. And often it's the person with symptoms that will notice them first, but sometimes it's the family member who notices, because the part of the brain that allows one to reflect on how one's doing is sometimes affected early in the disease. So it may be the family that needs to be vigilant as well. So detecting early changes and not ignoring them is really step one.
[00:03:46] Dan Kendall: The earliest symptoms are subtle. It may feel like you or a loved one are just stressed, overworked, overtired. And everybody involved can easily slip into denial.
[00:03:57] Dr. Sharon Cohen: Some people think, oh, this is normal aging, but in fact, this is the beginning of a serious disease. And over time, the memory problem becomes more substantial.
[00:04:07] Dan Kendall: Early symptoms can include mild cognitive impairment - or MCI - which is when your memory and ability to think start to be not as good as they once were. But MCI is not exclusively related to Alzheimer’s disease.
[00:04:21] Dr. Sharon Cohen: There are many causes of MCI or mild cognitive impairment. Alzheimer's disease is certainly one cause, but there are other diseases that can lead to, progressive loss of cognition.
For example, people may develop mild cognitive impairment in Parkinson's disease, and that may progress to Parkinson's disease dementia. Not all mild cognitive impairment, however, is progressive. For example, one may have a side effect of a medicine they're taking that affects their memory . So they may have some fogginess in thinking and it stays the same, it doesn't progress and lead to a dementia.
Alcohol can be a cause of mild cognitive impairment. It can also be a cause of alcoholic dementia.
So there are many things; a head injury, a stroke. You can see that there's a whole range of things that may be progressive or not progressive or may improve.
So, quite a lot of variety. And again, if somebody has mild cognitive impairment, one might be worried about Alzheimer's, get it checked out. There's so many different causes.
[00:05:27] Dan Kendall: There's also mild behavioral impairment, which can cause changes in behavior and personality.
[00:05:33] Dr. Sharon Cohen: Irritability, there can be apathy, there can be frustration, so somebody may be less motivated to do things. If I don't feel as confident, even if I'm able to function well, and nobody else knows that I'm not doing well, I may withdraw from conversation, from socializing, from certain work activities.
[00:05:53] Dan Kendall: Before seeing a health professional, it may be helpful to make a list of some examples of behavioral and cognitive impairment so you can remember all the examples you'd like to discuss. It can also be helpful to ask other family members or friends if they've noticed anything as well.
After identifying early signs and symptoms, step two of the evaluation process is getting initial assessments.
[00:06:18] Dr. Sharon Cohen: Anybody who's noticed symptoms in a loved one should approach a health care provider and say, “could you please help us check this out? We're concerned.” And hopefully some screening cognitive tests will be done, a general neurologic examination to rule out other causes of memory problem, Parkinson's disease, other things. It's not all Alzheimer's. At this early stage here, we're wanting to cast the net pretty broad.
[00:06:45] Dan Kendall: As we discussed in episode 3, your health care provider can assess your cognitive abilities using simple tests. These include written and verbal tests to evaluate memory, and imaging tests to visualize changes in the brain and can take 10 minutes or less. These tests may ask you to repeat back words or draw simple items from memory, such as a clock. They can help any changes get noticed quickly. Your health care provider will also want to know more about your history.
[00:07:11] Dr. Sharon Cohen: We want to know, does the person have sleep apnea? Are they drinking excessively? And try and get a better handle on what the possible causes of the memory symptoms might be. And some blood work to rule out things like under-functioning thyroid, insufficient vitamin B12 levels, things that we know are important for brain function. And then it would be very helpful to have a structural scan of the brain - that would be a CAT scan or an MRI scan.
[00:07:38] Dan Kendall: All of these services can be ordered by your primary care provider.
[00:07:42] Dr. Sharon Cohen: And then depending on the results, if Alzheimer's disease is still under consideration, the next step would be to refer to a memory specialist.
[00:07:51] Dan Kendall: And remember, if you don't feel that your concerns are being taken as seriously as you like, it's okay to ask for a referral.
[00:07:59] Dr. Sharon Cohen: If I feel my memory’s failing, even if my doctor is not finding anything, it worries me, and I want to know that we've looked into this thoroughly. So, I would say, “okay, that's great if you're not too worried, but I'm concerned and could I see a memory specialist?”
[00:08:19] Dan Kendall: That brings us to step three in the evaluation process: Referral to a neurologist. A neurologist is a physician who specializes in disorders of the brain and nervous system.
[00:08:30] Dr. Sharon Cohen: A neurologist will review the history, will look for risk factors, will do some more cognitive testing, and will then move on to confirm with biomarker assessment.
[00:08:44] Dan Kendall: A biomarker is a sign or measurement in your body that can help doctors understand your health. Since amyloid and tau can begin to build up in the brain up to 20 years before clinical symptoms appear, biomarkers may help increase doctor’s confidence in diagnosing Alzheimer’s disease earlier.
[00:09:00] Dr. Sharon Cohen: It's that early symptomatic stage that we really focus the biomarker testing on the mild cognitive impairment and mild dementia stage, because their biomarker testing would be the gateway to potential new treatments.
[00:09:13] Dan Kendall: Biomarkers can be assessed in two primary ways: Either by undergoing a PET scan or by having a procedure called a lumbar puncture.
A PET scan involves an appointment at a hospital or a center that does imaging tests. Before the scan, an injection is given that allows healthcare providers to detect the abnormal buildup of amyloid on the brain.
An alternative test is called a lumbar puncture, or sometimes it’s referred to as a spinal tap. A small amount of cerebrospinal fluid is sampled through a minimally invasive procedure. This detects amyloid and tau markers in the cerebrospinal fluid.
[00:09:46] Dr. Sharon Cohen: Some people are really nervous about spinal tap. They think that's scary, it's going to be painful, they might be paralyzed. We explain to people exactly what's involved and that we do it all the time.
We don't go into the spinal cord. That's something that people tend to misperceive. It's the fluid around the spinal cord. But it's actually at a lower level in the back where the spinal cord has already ended. The nerve roots are floating there in the spinal fluid, but the spinal cord is not actually in the way. And then, usually by gravity or drip, we allow the spinal fluid to take its time to drip.
What you get out of that procedure is the cerebrospinal fluid, or CSF, and that's the specimen we send to the lab.
[00:10:30] Dan Kendall: While PET scans and lumbar punctures are common methods of detecting Alzheimer's disease biomarkers, there’s also a blood-based testing method that isn’t widespread yet.
[00:10:39] Dr. Sharon Cohen: There are blood tests being developed. This is very exciting because these will be less expensive, more accessible, and it will allow family physicians and other health care providers outside of memory clinics to get into the game.
[00:10:54] Dan Kendall: We discuss blood-based tests in Episode 6 of this series.
Step four is the final step in the evaluation process. This is when a diagnosis of Alzheimer’s can be made, and any treatment options are explored. Understandably, facing this diagnosis can be scary, but it’s an important step in understanding what the next options are. Laura described what it was like when her husband, Andrew, was diagnosed with Alzheimer’s.
[00:11:20] Laura Murphy: I was reluctant for three months to do anything, because then, of course, that made me have to admit that Andrew was sick.
[00:11:27] Dan Kendall: Although it’s hard to confront, an early diagnosis provides more options for the person with Alzheimer’s, and the people who care about them.
[00:11:35] Dr. Sharon Cohen: Alzheimer's creeps up very gradually. Brain changes go on for many years without there being any symptoms for preclinical Alzheimer's disease, even though we have diagnostic tools that can detect amyloid, that early protein change in the brain, we can detect that even before symptoms arise, just the way we do with cancer medicine. We don't say, “Oh, this seems too subtle, go away and come back when the lump is large .” And we shouldn't be doing this with the brain. If there are subtle symptoms, that's our opportunity to see what's going on.
[00:12:06] Russ Paulsen: Earlier diagnosis is so important for people.
[00:12:10] Dan Kendall: That’s Russ Paulsen, whom we met in previous episodes. He’s the Chief Operating Officer at UsAgainstAlzheimer’s.
[00:12:16] Russ Paulsen: The earlier you catch it, the better off you are. You might be a good candidate for treatments, but there are also lifestyle things and other possibilities of things like controlling your blood pressure through blood pressure medication.
[00:12:33] Dr. Sharon Cohen: If someone is diagnosed at the mild dementia stage of Alzheimer's disease, then symptom treatments are also indicated. So medications that are taken by mouth daily that can boost brain functioning and bring about some improvement in memory or other cognitive abilities, and disease slowing medication would also be an important consideration.
[00:12:59] Dan Kendall: An emerging class of anti-amyloid therapies with the potential to slow disease progression is becoming available.
[00:13:06] Dr. Sharon Cohen: And so further investigation to determine whether this individual would be eligible could be undertaken. And that might include things like reviewing the MRI, making sure we have had a previous structural brain image. And then, access to an infusion center, access to the various things that would be needed to roll out treatment.
[00:13:29] Dan Kendall: An infusion center is a place where people receive treatment intravenously – which means directly into their bloodstream.
Early diagnosis allows more time for education, planning, and monitoring disease progression. If you’ve gone through this evaluation process and received an Alzheimer’s diagnosis, there is a lot of support available for you. Speak to your doctor and care team about treatments that may be available for you, and seek out help from organizations like Us Against Alzheimer’s, the Alzheimer’s Association, Hilarity for Charity, Black Health Matters, and other organizations. Lorenzo’s House is a good resource if you are looking for support for younger children who are impacted by the disease.
You can find links and learn more about these organizations by visiting our website at healthunmuted.com/resources.
[00:14:14] Dr. Sharon Cohen: These are important resources for people so that they're not alone dealing with a challenging disease.
[00:14:20] Dan Kendall: On the next episode of The Rethinking Alzheimer’s Disease Podcast: What’s the role of a caregiver?
[00:14:26] Joel Ebuh: Alzheimer's is not just a disease that impacts the patients. Alzheimer's caregivers have worse health. The financial burden on the caregivers is staggering as well.
[00:14:41] Dan Kendall: This is the Rethinking Alzheimer's Disease Podcast, hosted by me, Dan Kendall. This show is part of the Health UNMUTED audio library by Mission Based Media and was created with support from Eisai. To listen and learn more, visit healthunmuted.com/resources and follow our show on your favorite podcast player.