It’s so important to keep up on all the updates when it comes to Alzheimer’s disease and related dementia. Things change so rapidly, and therefore, Lisa is committed to bringing you the most current information available. Finding a cure or even an effective treatment has been extremely difficult, but now, after billions of dollars have been spent on research and more than 100 drugs failures, advocates are celebrating the most current breakthroughs which Lisa shares on today’s episode.
Don’t miss this very important episode! Some of the highlights include:
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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Lisa, Hi everybody. Welcome back to a another brand new episode of the truth, lies and Alzheimer show. I'm Lisa Skinner, your host, and I want to share with you a really interesting article that I came across. Part of the reason is I've mentioned this before periodically, when I see updates on Alzheimer's research, on new medications, on new information that I think would be useful and helpful for anybody who is dealing with Alzheimer's or dementia situation, because the information changes pretty quickly. So I like to keep everybody informed. And this one came from Kiplinger magazine, and the title of it is breakthroughs in Alzheimer's research give cause for optimism, and I felt pretty optimistic after I read it, so I want to share it with everybody. An estimated 6.7 million Americans currently are living with Alzheimer's disease, which is the most common form of dementia and one of the leading causes of death among people 65 or older. This is in the US by 2050 an estimated 13 million Americans will have the degenerative brain disease, according to Monica Moreno, who oversees care and support efforts for the Alzheimer's Association, these are kind of startling statistics Here, one in 20 people aged 65 to 74 which is more than 10% of people age 75 to 84 and 1/3 of people age 85 or older will have Alzheimer's disease and finding A cure or even an effective treatment, as we all know, has been unbelievably difficult now, after billions of dollars in research and more than 100 drug failures, advocates are celebrating breakthroughs, including drugs that, for The first time, treat the underlying causes of the disease, experts are optimistic that we may be on the precipice of significant changes in how the disease is treated and potentially even prevented a gentleman by the Name of Percy Griffin, who is the Director of Scientific engagement for the Alzheimer's Association, is hopeful about major advancements in the near future. He says it's a very exciting time for Alzheimer's research. This is the most optimistic time in the field, while the new treatments are useful for patients in the earlier stages of the disease, he believes these advances will spur research that finds answers for patients with more advanced Alzheimer's disease, But he he also emphasizes that we're by no means stopping here. In addition to drugs that treat the underlying causes of Alzheimer's, some of the new developments include patients experiencing one of the most common and challenging symptoms, which is agitation. Actually got a pharmaceutical option last year when the FDA approved the antipsychotic drug resulting. I don't know if you've all seen the commercials. I see them regularly now, and this was this medication has been approved for the treatment of agitation associated with dementia due to Alzheimer's disease. Again, the name of it is result rexalti. And this is really interesting to me. Researchers are discovering how important lifestyle modifications have and also give a consequential impact on Alzheimer's mitigation and management, and are working to give patients detailed guidance on changes they can make. These studies, as I've discussed on other. Episodes, and I've gone over risk factors and how to minimize your risk of developing Alzheimer's disease, and they all include, you know, lifestyle choices and things like that, but they're finding even stronger evidence that lifestyle modifications can make a huge difference, and I have also read they can make a huge difference, up to 40% in people just by making lifestyle modifications and managing and treating health conditions. Also, blood tests may soon be available to enable routine early diagnosis, potentially even before the onset of symptoms. Also, Medicare has expanded access to PET scans, where before they were limited to once in a lifetime, but that these PET scans aid in early and accurate diagnoses. Eric Ryman, the executive director of Banner Alzheimer's Institute in Arizona, explains that delaying the onset of the disease, as some new drugs promise to do, obviously, can be extremely significant. He says, If you could delay the clinical onset of Alzheimer's disease by only five years, you could reduce the number of people who developed the disease by half, because it doubles every five years. And he also says there's a chance to do even better than that. So along with medical advancements, attitudes towards Alzheimer's are improving. There has been an increase in the general awareness and the willingness of society to talk about Alzheimer's and other dementias. I say woo hoo, because, as you all know, I have been involved in this professionally for 30 years now, and I tell people all the time on my show, I have not seen much change in people's attitudes towards the disease until very recently. So that's a confirmation for me that I'm not just seeing things, that we really are seeing some movement in people's attitudes towards Alzheimer's disease, because we need to do that to remove these stigmas. But of course, challenges still remain, while new treatments for the disease and its early stages are considered major advances. Few advances are immediately seen for long time patients, meanwhile, patients and family caregivers desperately lack needed financial and emotional support. That's another serious component of Alzheimer's disease and dementia as we know currently, the Alzheimer's Association estimates that 11 million unpaid caregivers, including family members, provide 18 billion hours of care worth almost $340 billion a year, versus 345 billion in paid care. And these numbers are only projected to grow substantially as the population ages, with an estimated 40% of unpaid caregivers experiencing depression. The toll on society is daunting, and keep in mind that the World Health Organization and the Alzheimer's Association are telling us that unless a cure or treatment is found by the year 2050 the number of people who live with Alzheimer's disease is expected to triple from the number of people who are living it with it worldwide Today,
and while early diagnosis is key to the success of new treatments, it's not routine. It's uncommon for a busy primary care physician to ask about memory and thinking problems during their often, typically eight minute visit, partly due to the misconduct. Exception that there's nothing one can do about it anyway, and partly because of the inability to provide clear answers just yet. And this is something that this Eric Ryman has expressed based on his research. For that reason, 60% of patients with Alzheimer's dementia have never even had an evaluation or a diagnosis in their lifetime. As Ryman describes it, the experience for many is physicians who diagnose this is quote, unquote, diagnose an Adios, even when a patient is seen by a specialist in a memory center, the standard of care has been more of a consultation model. In other words, to evaluate individuals for clinical severity, to rule out conditions or medications that may be contributing to their symptoms, and perhaps offer symptomatic medication treatment. This seems to be the current standard of care across the board, with a diagnosis, the patient and family caregiver might be given a referral to a local chapter of the Alzheimer's Association or another support group, but not much else. And this is very consistent with reports that have come out in the last couple of years that say that there is a serious lack of post diagnostic process and care for people with dementia. Now, he also says it would be helpful for patients and families to know what the course of the illness is. I know from listening to 1000s of family members over the last three decades that this is the Absolute Truth, if they're not going to fall off a cliff, that there's life after diagnosis of Alzheimer's or other dementia, and that there are certain strategies that can help to improve the quality of life, even in the absence of a slowing decline. Ryman says this is he's talking about a person centered approach to care. Ryman says patients and families should know that there are treatments, including drugs, that can have small but meaningful impact on memory and others that can mitigate the other effects of the disease. These are the things that we talk about pretty much every week, on truth, lies and Alzheimer's. One of the common challenges is repeating rituals. He says, a patient might repeatedly ask, Where's my mom? Where's mom? A family member typically responds by reminding the patient that their mother has actually passed away, making the person anxious and relearning a very unpleasant fact. This can cause a panic in somebody that believes their mother is still alive and well. Ryman says a coping strategy is to help families live in the person's reality and then refocus their attention, if needed. So instead of repeating that the mom has died, the family member can bring up a memory about her mother and engage the person in a conversation about her. Griffin says there's a robust pipeline of 140 different therapies being tested in clinical trials that address different aspects of how the disease attacks the brain. Since 2021 the Food and Drug Administration has approved two drugs that, for the first time, treat an underlying cause of the disease, I have shared this one with you, and in several the episodes, one of them is called Le chembi, or lecanemab, and the other one is add you hem or aducanumab. And they target a protein called beta amyloid that collects between neurons in the brain. Early clinical studies showed that lecanemab slowed cognitive decline by as much as 27% in early Alzheimer's patients compared to a placebo. Well, this translates. To a delay of about six months in the progression of the disease over the 18 months of the study that was done, the FDA granted lecanemab full approval last July. Now while aducanumab the first of the two drugs to get accelerated. FDA approval also reduced beta amyloid in the brain. Its clinical effects are not as clear as lecanemabs. The FDA approval of the drug over the objections of an advisory panel, were controversial, generating a clinical Congressional investigation. It never received full approval from the agency, and its use appears negligible. So that's the current status of that medication access. Now here's the downsize of what can be access to lecambi is limited even among Early Stage patients, partly because it's administered administered intravenously every other week, and partly because the drug has been studied only on people who meet strict requirements, including general health and body mass index to be covered by Medicare, the physician must participate in a qualifying registry with an appropriate clinical team and follow up on the patient's care. So research in August of 2023 concluded that just a small percentage of older adults who are in the early stages of Alzheimer's disease meet these eligibility criteria to even receive the lekembi treatments. On top of that, these drugs are prohibitively expensive. The drug maker Biogen set the price level it can be at $26,500 a year. An independent nonprofit that advocates for cost effective medical care, estimated it should be sold for as little as $8,900 a year based on its effectiveness and Medicare Part B will cover lekembi covering about 80% of the cost for eligible beneficiaries and the patients responsible. Responsibility would still be $5,300 a year.
The long term effects of this drug still remain to be seen. Studies so far followed patients over 18 months with a disease that can last decades as patients are prescribed the medications, ongoing clinical studies track whether the drugs continue to stave off decline and whether they pose long term dangers. Still, advocates say the drug breakthroughs are meaningful beyond the specific patients who receive them and will spur further research. As Mr. Ryman describes it, what this has meant is, not only do you have clinically proven treatments and compelling evidence that amyloid aggregates like plaques, are involved in the development of Alzheimer's disease, but you now have increased confidence that the same benefit, that the same treatments, if started even earlier, will have a more profound benefit. The other issue, and I've talked about this on several of the truth lies in Alzheimer's episodes, is the lecanemab, because it's being administered intravenously, has been found not to completely penetrate the blood brain barrier. And what that means is that the medication is not all getting into the brain where these plaques and tangles live, to clean them up, and there has been research that ultrasound can open up this blood brain barrier to give the drug more immediate effectiveness, crossing the blood brain barrier, but I don't think that's even available yet. It's still in its research phase, so there's a lot of questions about le can be treatment as of. Today, researchers are also studying possible vaccines that may prevent or change the course of the disease. Other drugs being studied currently will address the tau protein that develops abnormally in the brains of Alzheimer's patients, according to the National Institutes on Aging, evidence does suggest that Alzheimer's related brain changes may result from a complex interplay among abnormal tau and beta amyloid proteins and several other factors. A third monoclonal antibody called dononimab, which is another medication being developed, targets beta amyloid and tau proteins, and it's expected to receive an FDA nod fairly soon. It has been shown in clinical trials to slow the progression of Alzheimer's disease by 60% where the other one was only 27% and this is compared to a placebo. According to information from the Alzheimer's Association, significant benefits were also seen in more advanced patients. So stay tuned, because I will definitely follow this and keep you updated on donanemab Griffin says additional possible treatments focus on inflammation and the involvement of the brain's immune cells and Alzheimer's similar to HIV and cancer. He says Alzheimer's may eventually be treated in all its biological aspects, with the ultimate goal being a combination of therapy that also works with lifestyle changes to mitigate or hopefully avoid the disease altogether. Various studies have found the brain benefits from everything to volunteering to reading and doing puzzles, along with a traditional healthy living lifestyle, such as exercise, the nutrition and they've also the research has shown that social engagement has been found to benefit our aging brains. Some of the most exciting research has been in the area of lifestyle modification, as opposed to using pharmaceuticals. Says Christina zandy's a geriatric psychiatrist at UConn Health at the University of Connecticut. She says This gives our patients a lot more control. They can be doing things actively on their own. Lifestyle modification options are empowering for the patients and can also be utilized on a broader public health level. I could not agree with her more, and I have seen this be so effective now, limiting alcohol and not using tobacco are two steps that people can take, as well as maintaining a low fat, healthy diet and continuing to engage in social activity. The bottom line is, researchers hope to drill down on specific results from a spectrum of lifestyle changes. Griffin says a newly initiated two year study known as the US pointer study will also allow researchers using 2000 volunteers to look at a variety of lifestyle changes and treatments in an effort to compile what amounts to a recipe book for ways to minimize Alzheimer's disease and related dementia. Did you know that it can take Alzheimer's disease up to 20 years to start showing symptoms. Yes, it's a fact. The main way to diagnose Alzheimer's now is by looking at proteins in the spinal fluid. But researchers believe diagnosing and treating the disease before the onset of memory issues can be key to effective treatment, which could also lower side effects. So to that end, scientists say blood tests are expected to soon be available to. Easily diagnose the disease earlier, potentially before the symptoms appear. Yazid Meg heyda, a geriatric physician at UConn health, says new blood tests aren't yet useful. I'm going to repeat that the new blood tests are not yet useful as definitive diagnostic tools, but he expects in the future they will be as reliable and easy to use as blood sugar and urine test. I think that's very promising. And Griffin says it may be possible in the near future to diagnose Alzheimer's disease with a finger prick blood test. That's really exciting. In October of 2023 Medicare expanded access for patients to receive the PET imaging tests, which helps identify evidence of Alzheimer's in the brain. So how that works is, according to the Alzheimer's Association, the P, E, T, or PET imaging enables clinicians to distinguish Alzheimer's disease from other causes of dementia or memory loss. Until the expansion, patients were limited to coverage of one PET scan in their lifetime, enabling more frequent use of PET imaging. Griffin says means more people will be diagnosed earlier. We've got a ways to go on that, but these are things that are all in the works, so it's a step in the right direction. So based on what I just read to you here, um, it's still, according to this explanation, the PET scan is still a tool to use to eliminate what's causing the symptoms, but not a conclusive diagnosis of Alzheimer's disease. Early detection of Alzheimer's, I think everybody is in agreement, is critically important.
Dr Moreno emphasizes that, but not just to increase the success of treatment. Oh, that's a woman we also know. She says when someone goes to the doctor to get a diagnosis early, that allows the person with dementia to be part of the planning process, rather than waiting for when they can't make decisions on their own. And we don't want families to have to struggle with what decisions they would have wanted. A key to effective treatment of Alzheimer's is detecting the disease as early as possible. So ultimately, researchers hope that some of these new tests will enable routine diagnosis before symptoms appear, which typically takes years after the disease is already developed in the brain. So in conclusion, According to the Alzheimer's Association, some early dementia symptoms contrasted with normal signs of aging are and these are kind of some of the key red flags to look for memory loss that disrupts daily life, forgetting recently learned information, important dates or events, asking the same question over and over and an increasingly meaning to rely on memory aids or family members for things you used to handle on your own, a typical age related change in memory that isn't necessarily cause for concern would be just Occasionally forgetting names or appointments but remembering them later, also looking for challenges in planning or solving problems, changes in a person's ability to develop and follow a plan or work with numbers that person may have trouble following A familiar recipe or keeping track of their monthly bills, they may have trouble concentrating and take much longer to do things than it took them before on the other hand, it's normal to make occasional errors when managing finances or household bills. Another red flag, difficulty completing familiar tasks. You The person may have trouble driving to a familiar location, organizing their grocery list or remembering the rules of a favorite game. It's not particularly concerning. However, if that person occasionally needs help using a microwave or recording a TV show, two more to look out for is noticing confusion with time or place the person developing Alzheimer's may lose track of dates, seasons and the passage of time. They may have trouble understanding something if it's not happening immediately. Sometimes they may forget who you are or how you got there. But on the other hand, it's not unusual if they get confused about the day of the week, but then they figure it out later. So these are all really important differences to look for between normal aging forgetfulness and something more serious developing. And then the last one is trouble understanding visual images and spatial relationships so the person could experience vision changes that may lead to difficulty with their balance, or trouble in reading they might have problems judging distances and determining color or contrast, causing issues with driving, and this is very different from vision changes that are related to cataracts. So hopefully you have found this information in this article that I've shared with you, very helpful, very useful, very interesting. And I want to add extremely exciting, because I think it's, it's continuing to be going down a very positive path in terms of understanding more and more and more about Alzheimer's disease and how to live with it on a day to day basis after the diagnosis. So that's what I have for every one today you are listening to the truth, lies and Alzheimer's show. I'm Lisa Skinner, your host, and I will be back next week with another new issue of the truth, lies and Alzheimer show. So I wish everybody a happy, healthy week, and I look forward to having you back next week, thanks again, bye, bye.