Can Alzheimer’s disease be diagnosed properly today? Lisa discusses this age-old question and shares the most recent and updated answers in order to vanquish the confusion.
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About the Host:
Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.
Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.
So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.
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Hi, everybody. Welcome back to another new episode of the Truth, Lies and Alzheimer's show. I'm Lisa Skinner, your host, and I have a question for you. Are any of you feeling totally confused about how Alzheimer's disease is even diagnosed these days? I even get confused sometimes because a lot of people will say, Yeah, my mother has been diagnosed with Alzheimer's disease or my father has been diagnosed with Parkinson's disease. And the word diagnosed is a very common term that we use. And when our doctors tell us that our loved ones have been diagnosed or have Alzheimer's disease, we believe that's an accurate diagnosis. So I want to dispel that confusion and really clarify the diagnostic process for Alzheimer's disease and some of these other brain diseases that cause dementia, because it's vague, and it's confusing. So as of this broadcast, I want to tell you and I updated the research, I want to give you the most updated information. There still is no single definitive test for diagnosing Alzheimer's disease. Unfortunately, we're just not there yet. Diagnosing Alzheimer's disease typically involves a combination of medical and neurological evaluations. So doctors can test for certain diseases that might mimic or cause the similar symptomology that we see in Alzheimer's disease and some of the other brain diseases that cause dementia. So they can pretty much rule out what it's not. But in terms of a definitive diagnosis, there's only still one way to determine if somebody has Alzheimer's disease. And that is, after their passing. For brain autopsy is performed, the doctors can see if somebody's sprain is filled with the plaques and tangles that cause Alzheimer's disease. So this is the process that a doctor will take you through to make his best educated and professional determination as to whether or not somebody is possibly suffering from Alzheimer's disease. And the other thing, there's so many other complicated factors that go into the mix that I'm going to cover with you in just a minute. But I've mentioned this before people live with what we call mixed dementia, so they can have Alzheimer's disease and another brain disease that causes dementia happening simultaneously in their brains. I'll use Parkinson's disease as the second example, you can have Alzheimer's and Parkinson's happening at the same time. And guess what, there's no definitive test yet for Parkinson's disease either. And that's what really makes these diseases so, so complicated and difficult, is that through process of elimination, doctors can yes eliminate it's not this. It's not this, it's not this. And I'll go into a couple of examples in a little bit, but to actually have a definitive test, like we have for cancer and some of the other medical conditions we all we suffer from. As of right now there is nothing that will definitively tell us if somebody truly has Alzheimer's disease, or even Parkinson's disease and some of the other diseases that attack our brains that fall under the category of dementia related diseases. So the doctor will take your medical history, including your symptoms, and your neurological function. Your overall health, your medications, those are very important to know what medications you're taking. They will perform physical and neurological exams. They will probably administer a couple of mental status and cognitive tests that they use routinely to test your cognitive function, they'll get blood tests to see if there's an underlying disease or medical condition happening, that might be contributing to the symptoms that you're presenting with. They do we do have brain imaging tests. But the tests that we have available right now can indicate possibly that something's going on in the brain, but there's still nothing that definitively shows up. So while all these tests and evaluations can strongly indicate the presence of Alzheimer's disease, a definitive diagnosis can only be made with certainty through a brain autopsy after death, and I think this is really important to understand. However, advances in brain imaging and biomarker research are finally leading to the development of more accurate and reliable diagnostic tests for Alzheimer's disease. And research in this area continues. So I want to share with you a true couple two stories. Those of you and I'm dating myself, and who remember Kris Kristofferson, that very dynamic and a handsome musician and actor who played with Barbra Streisand in a stars born and he was one of the highway man with Johnny Cash. Kris Kristofferson was a perfect is a perfect example of not being able to definitively diagnose Alzheimer's disease, he was showing a variety of symptoms that resembled and mimicked Alzheimer's disease, many, many, many symptoms. He was put through a battery of tests, and the doctors that he was working with finally concluded that he truly had Alzheimer's disease. And he was treated for three years for Alzheimer's disease. And then one of his doctors got the idea to test him for Lyme disease. And guess what turns out, the man had Lyme disease. So they stopped treating him for Alzheimer's disease, and started treating him for Lyme disease. Urinary tract infections, can mimic the same exact signs that we see with people living with dementia. So one of one of the brain diseases that causes the symptomology that we see that those brain diseases like Alzheimer's cause the different says, if you have a urinary tract infection, and if you don't know this, both men and women get urinary tract infections. The symptoms come on quite, quite suddenly. And that's not the case with Alzheimer's disease or some of these other brain diseases.
It's a very slowly progressing disease. When I worked in a building years and years ago, I had a woman I was the Community Care counselor, and I was responsible for admitting new residents and doing all the assessments. And I had a woman come in to my office one day and she said, Lisa, you have to help me you have to help me, my mother, just all of a sudden has developed dementia, and I need to to get her into your memory care unit. And I said it came on that suddenly. And she said yes, just like out of nowhere, she's confused. She doesn't know who she is. She doesn't know where she where she is. She barely remembers her name, let alone what she had for breakfast. And of course, that was a huge red flag for me, because I've been working with families and dementia and people suffering from it for 30 years now, and I just don't see it. Come on that quickly. So I said to her, before you conclude that your mom has Alzheimer's disease or a related dementia, I would strongly suggest that you take her to the doctor and have her tested for a urinary tract infection because we know I said I see this all the time that urinary tract infections can bring on the same and similar symptoms, but they come on very suddenly. She's well I just had her at the doctor They didn't offer to test her for a urinary tract infection. I said, Well, I think we need to eliminate that first. So long story short, she takes her mom back to the doctor, she insists on a urinary tract, urinary infection test. And sure enough, she has a urinary tract infection, she had had it for a while it went septic, it was in her blood. And once it gets into your blood system, then you start seeing very similar symptoms to Alzheimer's disease and related dementia. Fortunately, those symptoms can be reversed with a urinary tract infection. So while once you get on an antibiotic, the antibiotic can kill the bacteria that's causing the urinary tract infection. But once it gets into your blood, it's going to take weeks for it all to clear out. So even when if they complete their regimen of antibiotics, it will take several more weeks before you see those symptoms subside completely and go away. Parkinson's disease is another very interesting brain disease, I mentioned there is no definitive test for it, which there is not, again, another process of elimination. But one thing that makes Parkinson's disease. So unusual, versus Alzheimer's disease is Parkinson's disease can be accompanied by dementia, once it starts damaging the brain. But people live with Parkinson's disease without the dementia component to it like Michael J. Fox, he's been living with Parkinson's disease for over 30 years, but his brain has not been affected by the Parkinson's disease. And then we have, you know, probably half the other people who develop Parkinson's disease, and they get the dementia with it. So you see the confusion. Probably the strongest hallmark of Parkinson's disease are hallucinations. So people hear things that aren't there, they see things that aren't there. This is very, very common in Parkinson's disease. But it's also very common with Alzheimer's disease. And again, throwing that extra layer of complication into the mix, a person seriously can have both of them happening at exactly the same time, which just you know, makes the whole situation that much more difficult to manage and to understand, and to deal with. A lot of people aren't aware of this. So I want to make sure you understand that. There is an a fairly new, it's not brand spanking new, but it's one of the newer imaging tests are available. It's called the PET scan. And it's a pet is short for Positron Emission Tomography. And they actually can be used to detect the presence of beta amyloid plaques and tau tangles in the brain, which are, by the way the hallmarks of Alzheimer's disease. But there are several reasons why PET scans are not universally used as a primary tool for diagnosing Alzheimer's disease in routine clinical practices right now, and the reasons why it or the cost of PET scans especially those using specialized tracers to detect the beta amyloid or Taos can be extremely expensive and cost prohibitive. So the high cost as a result, may limit access to these scans for some patients, and they may not be covered by all insurance plans. Had imaging facilities with the capability to perform scans for the beta amyloid or tau are not as widespread as facilities offering other types of imaging, such as the MRI scans, or the CAT scans the CT scans. This limited availability can restrict widespread use of PET scans for Alzheimer's diagnosis, while PET scans can detect the presence of beta amyloid plaques or tout tangles. Here's another complication. The interpretation of these findings in the context of diagnosing Alzheimer's disease is not always straightforward. And this is because the presence of these biomarkers, the test that plaques and tangles does not always correlate perfectly with the presence or severity of cognitive impairment. Some individuals may have significant beta amyloid or tau pathology. In other words, their brains are filled with these plaques and tangles. But they don't show the symptoms of the disease, while others may have dementia symptoms without significant levels of these biomarkers. Another problem with PET scans and why they're using it primarily in clinical trials right now, is availability, cost, the cost perspective of it, and the fact that insurance companies just aren't routinely covering it now. So again, it puts limitations on this as a resource for helping diagnose Alzheimer's disease it is it's, it's, it's not an accurate diagnosis, as I just mentioned. So the PET scans are typically performed at specialized imaging centers are hospitals that are equipped with PET scanners. But they're not all equipped with them. Not every special imaging center or hospital even has a PET scan. These facilities have the necessary equipment and trained personnel to conduct PET scans and interpret the results. So if you do have a prescription or a referral for a PET scan, then make sure you're being referred to a place that has a specialist train, to conduct them and to interpret them. PET scans can be helpful in supporting the diagnosis of Alzheimer's disease, especially when used in conjunction with other clinical assessments. And when interpreted alongside a patient's clinical symptoms and other diagnostic information, they can contribute to the overall assessment of Alzheimer's disease. But once again, nothing certain nothing definitive. So the other thing I want to share with you and I ran across these years and years ago,
and this is one of the reasons why I personally have been aware how complicated and difficult the diagnostic process is for Alzheimer's disease. And this I want to tell you about something that I came across, I don't know 20 years ago, called the nun study. It was a longitudinal research project that began in 1986. And it involves the study of a group of Catholic nuns in the United States. The study was led by Dr. David Snowden, a neuroscientist at the University of Minnesota and then later at the University of Kentucky. The Nun Study aimed to investigate the relationship between early life factors, cognitive function, and the development of Alzheimer's disease and other age related conditions. The reason why he chose nuns for the study is because they all had a very, very similar lifestyle. So he felt he wasn't going to have to factor out a variety of different lifestyle factors that played into the study. They all live together, they all work together, they are all the same age group. And what he did was for everybody who agreed to participate in his study, he asked them that after their passing, would they agree to having their brains autopsied after their death, and every one of them agreed, and that's what made this study so fascinating. And contradictive and this is what I found fascinating. So what they did was they filled out detailed health and lifestyle data And they detailed information about their early lives, their educational backgrounds, their cognitive function, and their health histories. This rich data set allowed researchers to explore the potential influences of early life factors on cognitive aging and Alzheimer's disease risk. Then, of course, they all agreed to donate their brains for autopsies and neuro pathological examination. So here are the insights on what the study found, and why it was so important. The Nun Study contributed to our understanding of cognitive reserve, which refers to the brain's ability to maintain normal cognitive function in the presence of neuro pathological changes. This study provided evidence that some individuals with significant neuro pathological changes in the brain did not exhibit the clinical symptoms of Alzheimer's disease during their lifetimes, suggesting that factors such as education, and cognitive stimulation may contribute to cognitive reserve. I'll explain what that is in just a second. Overall, the net the nun study provided valuable insights into the complex interplay of biological lifestyle and environmental factors in cognitive aging and the development of Alzheimer's disease. The findings from the study have contributed to our understanding of dementia risk factors, and the potential protective effects of certain early life experiences and cognitive engagement. So what is this mean? Again, what the study concluded, after the autopsies were performed, was it seven of these nuns were found to have their brains were completely engulfed in plaques and tangles. And by all means, they should have been by the times of their death, they should have been in the advanced stages of Alzheimer's disease and showing advanced symptoms of Alzheimer's disease. They showed no symptoms of Alzheimer's disease. There are other nuns who upon their autopsies showed little, very little to no plaques and tangles in their brains, the hallmark of Alzheimer's disease, but they were symptomatic in their lifetime. So they went through the progressive brain changes that happen with Alzheimer's disease from mild to moderate to severe. So that's a conundrum right there a quandary that nobody can really answer and have pretty much drawn the attention to other factors that attribute to our risk of developing the symptoms of Alzheimer's disease. There was another study done after the nine study at a retirement center in a retirement community in Florida, same thing may gather, I don't know over 100 residents that were in their 90s took very detailed and lengthy health histories, medication histories on these people and then studied them as they aged, and they all agreed to donate their brains for an autopsy. And guess what, they found the same results as they did with the nuns, some of the people who had passed away, showed plaques and tangles in the brain that showed no symptoms in there while they were alive in their lifetime and vice versa, just like the nuns study. So this is part of the reason why there's stronger evidence now that it's just not set in stone, a conclusion that if your brain contains plaques and tangles, you definitely have Alzheimer's disease, you do have Alzheimer's disease, but you might not be showing any symptoms of Alzheimer's disease and vice versa, which is just complicates our whole situation, even more. So what is cognitive reserve? It is known that one of the risks factors that could increase a person's risk of developing Alzheimer's disease at at a later stage in their life is their level of education. And one of the things that we know is, the higher our level of cost of education, all the way up to, you know, a JD or PhD, will not prevent us from developing Alzheimer's disease. I have seen many, many, many very intelligent people, scientists and doctors and lawyers who live with Alzheimer's disease. But the higher level of education you have, the lower your risk will be of developing it. And the reason why is because the more you use your brain, at a younger age and higher level of education, you build up what is called a cognitive reserve. And what that does, is refers to the brain's ability to maintain normal cognitive function despite the presence of those plaques and tangles and other in other words brain pathology, such as that associated with neurodegenerative diseases like Alzheimer's. The concept of cognitive reserve suggests that individuals with higher cognitive reserve may be better able to withstand the effects of brain changes before exhibiting noticeable cognitive decline, and or the symptoms of dementia. cognitive reserve is thought to be influenced by a combination of genetic develop mental, occupational complexity, intellectual and social engagement by lingual ism, in other words, speaking more than one language, and it is believed to be a form of neuroplasticity, which reflects the brain's ability to adapt reorg reorganize and function effectively, despite underlying neuropathology. So if you weren't confused before,
I'm sorry, if you're feeling even more confused now, if these diseases are just so complicated, and there's always something be additional being thrown into the mix, to keep us confused to confuse this more, you know, there, the scientific community is feverishly out there working to try to find treatments, cures causes, of how what we can do, and lifestyle choices that we can make to lower our risk of developing Alzheimer's disease. We know that the projections are by the year 2050, the number of people living with Alzheimer's disease is projected to triple by then that's only 21 years away, off. So the more we know, the better off we're going to be. This information is really all based on evidence based scientific studies. So we know that most of this, they have found direct correlations to Alzheimer's disease. So that's the show this evening. I hope this has been really helpful. And I hope that this really has clarified some of the questions that a lot of you have as to whether or not there is as of right now a definitive diagnosis to determine if any of us are suffering from Alzheimer's disease. So I'll be back next week with another new episode of the Truth, Lies & Alzheimer's show. Again, I'm Lisa Skinner, your host. I appreciate you being here so much and I look forward to seeing you again next week. Thanks so much for being here.