Alzheimer's and Dementia Thread

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  1. Prospector

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    prognosis
    A Blood Test Can Predict Dementia. Trouble Is, There's No Cure
    By
    Kanoko Matsuyama
    May 21, 2019, 3:00 PM CDT
    • Roche, Quanterix join Shimadzu in advancing predictive tests
    • Diagnostics and drugs market to reach $11.1 billion in 2024
    [​IMG]
    Koichi Tanaka Photographer: Shoko Takayasu/Bloomberg
    Nobel prizewinner Koichi Tanaka says the predictive blood test for Alzheimer’s disease he and colleagues spent almost a decade developing is a double-edged sword.

    Without medications to stave off the memory-robbing condition, identifying those at risk will do nothing to ease the dementia burden and may fuel anxiety. But used to identify the best patients to enroll in drug studies, the minimally invasive exam could speed the development of therapies for the 152 million people predicted to develop the illness by 2050.

    “We must be cautious on how the test is used because there’s no curative treatment,” Tanaka said in an interview at Kyoto, Japan-based Shimadzu Corp., where he’s worked for 36 years. The 59-year-old engineer, who shared the Nobel for chemistry in 2002, said he hopes the test he helped pioneer will one day be administered routinely, but right now it belongs in the hands of drug developers and research laboratories.


    More than a century after the telltale signs of Alzheimer’s were first seen under a microscope, and billions of dollars in research spending by Roche Holding AG, Eli Lilly & Co., Eisai Co. and other companies, there’s still no drug slow down the disease.

    In the absence of medical breakthroughs, the worldwide cost of dementia is projected double to $2 trillion by 2030.

    Read More: Alzheimer’s Plague Is Price of Victory in War on Death

    While scientists debate the cause of Alzheimer’s, most agree that no treatment is likely to work on patients with significant cognitive impairment. That’s because their brains have been irreversibly damaged by clumps of misfolded and abnormal proteins that jam nerve cells.

    Nature Study
    “There are many reasons why drugmakers have failed to develop a cure for Alzheimer’s disease, but it’s too late to start treatment when patients already show symptoms,” Tanaka said.

    In a study published in Nature in January last year, Tanaka and colleagues showed it was possible to use a novel biomarker discovered by his lab to accurately quantify minute traces of amyloid-beta from a teaspoonful of blood, and gauge the progression of Alzheimer’s -- allowing identification of people likely to develop dementia over the coming decades.

    Previously, the brain changes that occur long before Alzheimer’s symptoms appear could only be reliably assessed by magnetic resonance imaging (MRI) and positron-emission tomography (PET) scans, and from measuring amyloid and another errant protein called tau in spinal cord fluid -- methods that are expensive and, in the case of a spinal tap, invasive.

    “Our finding overturned the common belief that it wouldn’t be possible to estimate amyloid accumulation in the brain from blood,” Tanaka said. “We’re now being chased by others, and the competition is intensifying.”

    Roche, Quanterix
    About a dozen companies and research groups from around the world, including Roche, Spain’s Araclon Biotech SL, and Lexington, Massachusetts-based Quanterix Corp., are pursuing blood-based diagnostic tools for Alzheimer’s and other neurodegenerative diseases.

    “These blood tests are very important to that aim of trying to get these groups identified and ready to go into trials, and make them faster and less expensive,” said Christopher Rowe, a neurologist who heads molecular imaging research at the Austin Hospital in Melbourne. “That, in turn, is the greatest hope for having a significant impact on the epidemic.”

    Risky Endeavor
    Estimated cost of developing a drug through to regulatory approval

    Source: Cummings, J, et al (2018)

    The global Alzheimer’s disease diagnostics and therapeutics market is predicted to reach $11.1 billion in 2024 from $7.5 billion last year, ResearchAndMarkets.com said in March.

    The greatest benefit from screening blood tests for Alzheimer’s will come once treatments are available to prevent dementia symptoms, said Randall Bateman, the Charles F. and Joanne Knight distinguished professor of neurology at Washington University School of Medicine in St Louis. Bateman and colleagues presented in 2017 a new method for measuring plasma amyloid levels using a similar approach to Tanaka’s group.

    ‘Exceptional Accuracy’
    “You really get exceptional accuracy,” said Bateman, whose lab studies the causes, diagnosis and treatments of Alzheimer’s disease. “I could see that easily becoming a clinical standard.”

    [​IMG]
    Shimadzu’s AXIMA series mass spectrometer.

    Photographer: Shoko Takayasu/Bloomberg
    Both the Shimadzu and Washington University groups use an analytical technique called mass spectrometry that can search for a particular compound based on its specific molecular weight and charge. The method was found to be 90% accurate when it was checked against brain scans, Tanaka and colleagues said in their Nature paper.

    Tanaka likens the approach to fishing with bait that only a specific fish will take. It enabled him to more precisely quantify amyloid in blood than an older, antibody-based method, he said.

    New digital technology has bolstered the antibody-based test, with Quanterix using it to detect the errant proteins associated with the start of Alzheimer’s disease, as well as neurofilament light chain -- a marker of neurological injury that can be elevated by conditions including concussion, Parkinson’s and multiple sclerosis.

    “There’s an incredible opportunity to transform brain health by understanding your neuro baseline,” said Kevin Hrusovsky, Quanterix’s chief executive officer.

    ‘Game-Changing’
    Several drugmakers are trying to get tests for neurofilament light chain validated clinically as a complementary diagnostic tool because they will enable patients’ responses to medications to be monitored in real time, providing an early signal of efficacy, Hrusovsky said. “There’s a lot of evidence that this is going to be game-changing,” he said.

    Roche is evaluating the use of Elecsys, which tests cerebrospinal fluid for signs of Alzheimer’s, in blood plasma, the Swiss company said in an emailed response to questions.

    The global demand for tests that can provide an early and accurate Alzheimer’s diagnosis, as well as predict the disease trajectory is “enormous, with 50 million people already affected today and many more people going undiagnosed,” according to Roche. “It’s a market that has room for many different technologies and players, from digital biomarkers to imaging and protein biomarkers.”

    [​IMG]
    Tanaka is a senior fellow at Shimadzu.

    Photographer: Shoko Takayasu/Bloomberg
    Shimadzu finished analyzing amyloid levels in blood-serum samples from 2,000 patients in March, Tanaka said. The company is preparing to offer the service in the U.S. this year before extending it to Europe and China.

    “One thing we are looking into is running prospective cohort studies targeting people who have started to build up amyloid in the brain and see whether anything -- food, exercise -- can intervene to slow the progression of the disease,” the Nobel laureate said. “There are many things to be done.”

    — With assistance by Jason Gale, and Tim Loh
     
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  3. Prospector

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    NPR's Fresh Air ran this yesterday.

    On Aging
    'Dementia Reimagined' Asks: Can There Be Happiness For Those With Memory Loss?


    While caring for her mother, who had dementia, bioethicist Tia Powell began imagining a different way to approach the disease. Her new book looks at long-term care options and end-of-life decisions.

    Dementia Reimagined
    Building a Life of Joy and Dignity from Beginning to End

    by Tia, M.D. Powell
    Hardcover, 310 pages

    purchase

    TERRY GROSS, HOST:

    This is FRESH AIR. I'm Terry Gross. There's no cure for dementia, and there's unlikely to be one in the foreseeable future, which is why my guest, Dr. Tia Powell, is focusing on questions like, how can we devise a viable strategy to pay for long-term care? How do we preserve dignity? How do we balance freedom and safety? What is a good death for someone with dementia? And how do we help people who are losing their memory find some joy?

    Powell is the author of the new book "Dementia Reimagined." She is the director of the Montefiore Einstein Center for Bioethics and is a professor of psychiatry and bioethics at Albert Einstein College of Medicine. Some of her knowledge about dementia comes from having taken care of her mother when she had dementia. Powell's grandmother had dementia, too.

    Dr. Tia Powell, welcome to FRESH AIR. There is a story in your book that you tell about when your mother was taking care of your grandmother, and your grandmother had dementia. And I want you to tell this story to our listeners. It's a story about how your mother takes your grandmother outside on a beautiful day, seats her in a comfortable chair with an afghan covering her. Tell us the story.

    TIA POWELL: So my mother got my grandmother out onto the porch, which was pretty difficult. She was really at the end stages of dementia and couldn't move easily. But my mother got her out there and put her in an easy chair and put her feet up and tucked in, around my grandmother's legs, an afghan that my grandmother herself had crocheted many, many years before, when she'd been able to do that kind of thing.

    And after all this effort, she looked at my grandmother and said, there, Mother, how is that? - incredibly proud of her work at trying to make her mother comfortable. And my grandmother had been mute for many months before that, as commonly happens at the end of dementia. But you could see that she was struggling to say something. And she struggled and struggled and with great might pulled out a single word. She looked at my mother and said, lousy.

    It hurt my mother's feelings. But for me, hearing that, I thought, wow. It was really lousy for my grandmother. And it made me think about, well, that's too bad. (Laughter). I mean, does it - I mean, yes, dementia's lousy. Cancer's lousy. Serious illness is lousy. But isn't there something more we can do here? Is there a way we could think about this? Is there a way you could help that mother and that daughter find a dementia that's maybe a little bit less lousy?

    GROSS: I think that story is really important too because it shows how emotionally challenging it could be when your loved one has dementia and is not appreciating what you're doing for them. And not only that, they're sometimes, like, fighting you or insulting you as you're giving all your time trying to help them.

    POWELL: Yeah, it's really tough. It's tough on all sides. Figuring out how to communicate better, how to listen better to people with dementia while they can speak and even potentially afterward to figure out, what could I do? What actually would be helpful, not from my point of view but from yours? What actually would make things better? Maybe there's nothing. But if we haven't looked, we wouldn't know.

    So I think - dementia's really frightening. It's a disease that most frightens America, more than cancer, more than AIDS. And I think because of that we haven't really entertained the idea of happiness within dementia. And if you don't look for a solution to a problem, you're very unlikely to find it. You might not find it if you look. But if you look, you're at least a little bit more likely to find the answer. So for me, I think we ought at least to ask, is there such a thing as happiness in the context of dementia?

    GROSS: People think of memory loss as the defining and the worst symptom of dementia. And you say it's really not the worst. So what is?

    POWELL: Well, you know, worst is a personal choice (laughter)...

    GROSS: True.

    POWELL: ...It might be the worst for somebody. But dementia is really complicated. It's certainly not only memory loss. It's a loss of executive function, the capacity to make organized decisions. You know, you have three errands to do. Should you pick up the cat at the vet and then go to the grocery store and then drop off the dry cleaning? Or if you're doing all that on foot, is there a better order of those activities? It's something most of us just take for granted all day, every day. But if you don't have that, you can't really get around the world very well anymore. So there's that...

    GROSS: But I was thinking more of the - like, the depression and paranoia and anxiety...

    POWELL: Well, all of that. Yeah.

    GROSS: ...And wandering. And I was wondering, like, why do - depression I guess I can understand coming along with dementia, but why paranoia? Why the anxiety? Why the wandering? Do we understand, like, the roots of that?

    POWELL: You know, as a psychiatrist and a medical school professor, I have to say, I don't understand (laughter) the roots of all that. And even depression - you know, we think, well, that makes sense. It's kind of a rotten spot you're in. But being in a rotten spot doesn't actually correlate all that well with depression. You know, the rates of depression after stroke are higher than after cancer. Those are both tough spots to be in.

    So, you know, dementia is a brain disease. And so is depression. And so is anxiety. Those are all things that reflect the kind of unfortunate alteration in how your brain is doing. So paranoia, you know, maybe we could explain part of it by saying the world doesn't make sense to you anymore. You're sure that you put a pencil down over here, and it's not there. Has someone moved it? Is the world against you? And it may just be, well, it was three days ago you put the pencil there - or three years ago. You don't remember anymore.

    So sometimes people elaborate, you know, very complex theories about where that pencil went. But it may be more chemical than that. It may be - you know what? - the wires are crossed. It's just something is firing that is folding information that you're getting into a wrong theory of what just happened. So I think that's true for depression. It's probably true of anxiety.

    Although, certainly, if we do a thought experiment and imagine a world where you don't know what just happened a minute ago and you don't know what's going to happen a minute from now, that would be - you'd be pretty anxious. It's pretty frightening. Somebody comes to you and says, take off your clothes; I'm going to bathe you. And you have no idea who this person is. What's going on here? That doesn't sound like a good idea at all. It's - It is frightening.

    So I think, among other things, we need to have a bit more empathy for people in the circumstance of dementia and figure out, wow, what would I want in that circumstance? How could I - what would help me have that be less frightening?

    GROSS: Your mother and your father died at the same age.

    POWELL: Eighty-five.

    GROSS: Eighty-five, yeah. So your father died a few years before your mother. And he had kidney cancer. Your mother was already in, I think, the early stages of dementia when he died. And so when she died, she was a widow. Her children, like you, were grown, so she was living alone. And so I think she wanted to go to an assisted living facility. She wanted some kind of social connection, but there were problems that that presented as well. So I'd liked you - as just a case study here - to talk about some of the advantages and disadvantages for your mother in an assisted living facility with dementia.

    POWELL: So this is one of the hard lessons for me in thinking that as a medical school professor, I should know about all of this. I should be a real ace here. And discovering the, you know - not for the first time - that I didn't know anywhere near as much about something as I thought I did. So I thought that everybody with dementia wanted to be at home and that home would always be better, you know. And for my mother, that wasn't true. She was really miserable at home. She had an attendant who was with her all the time. They didn't get along. The attendant wanted to watch TV, and my mother didn't. She had a lifelong loathing of daytime TV, so she really was better off in assisted living. For her, it was great to be around people.

    My family background is Catholic, and the assisted living place where my mother started out was part of a kind of campus where there was a little parochial school, and a church and the assisted living facility. So she could look out her window and see the little kids in their Catholic school uniforms, and I think that was a really happy sight for her. She, one day, had been a little kid in a Catholic school uniform. She'd had six kids who also wore their little Catholic school uniforms. So I think it was, for her, a kind of a thread that led back to a happy past and brought back some of that happiness for her.

    But it was also hard. I mean, institutions are hard. Inevitably, they really have to fight against the tendency to evolve to serve the needs of the people who work there. So no one in this case, I don't think, did this to be mean. But things become about the convenience of the staff. So I mean, it's such a small thing, but I note in the book that my mother loved taking baths. So they told her that she could do that in the assisted living facility, but it turned out not to be true because that meant, because of fear of liability and safety issues, that a staff member had to stand outside of the partially open door the whole time she was in there to make sure she didn't drown. So they didn't have the staffing. They didn't want to do that. So they told her, forget it. That's not happening. Go take a shower.

    And it was such a small defeat. But if your life is at a point where there are relatively few things that actually make you happy, why would you want to give up on such a small thing? But for somebody with dementia, really, that could be pretty big. That could be the one, you know, sort of spot of sunshine during your day. Why would you want to take it away?

    GROSS: Let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is bioethicist Dr. Tia Powell. She's the author of the new book "Dementia Reimagined." So we're going to take a short break. We'll be right back. This is FRESH AIR.

    (SOUNDBITE OF MUSIC)

    GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. Tia Powell. She's the director of the Montefiore Einstein Center for Bioethics and the author of the new book "Dementia Reimagined: Building A Life Of Joy And Dignity From Beginning To End."

    So one of the problems your mother faced - and I think this is typical of people who are in assisted living or in nursing homes in the latter part of their lives - is that she had to get transferred several times from assisted living to the emergency room or to the hospital, you know, back and forth. And it ends up being a downward cycle. And you talk about how stressful that is for patients in general, but maybe particularly for people with dementia. Why is that more stressful for people with dementia?

    POWELL: Yeah. So when you take a frail, older person with dementia - and most people with dementia are frail elders with lots of other medical illnesses and, you know, arthritis. And you're 85. And it's really uncomfortable to lie on that gurney in the cold. You get to the emergency room, and let's say you have pneumonia. Well, there's also a guy that just came in with a gunshot so you're going to wait. You're probably going to wait for hours and hours. That's certainly true in most crowded, urban emergency rooms.

    And you have no idea what's going on. It's really dangerous for you. You're probably kind of raised up in the air and lying on a gurney. Well, it's a nightmare for everybody if you fall off. So you know what? They probably have to restrain you. And people can't really necessarily be with you all the time. Maybe they've contacted your family, but maybe they're not there yet. Or you're there for 10 or 12 hours, and they got to pick the kids up at school. They can't be there the whole time.

    It's an awful thing. If it's an awful thing that will really bring you benefit, OK. That's what medical treatment's like. You know, it hurts when I give you this shot, but if it keeps you from having a terrible disease, OK. That's what we're going to do. That's a good tradeoff. Lying for hours and hours before you get help and then maybe getting help that's going to be complicated, you really have to ask, what's the balance here between burdens and benefits?

    I think we need to plan better. I think doctors need to be better about communicating. I think family members and people with dementia need to be better about educating themselves. It's a fatal illness. It comes to an end. And dealing with that straight up makes it more likely that you have a comfortable end.

    So maybe if you're in the end stage of dementia and somebody says, she's got a fever, I think she has pneumonia, maybe the answer is to say, OK, then that must mean we're at the end. Why don't we stay here - wherever here is for you - make sure you're comfortable. Maybe they can give you antibiotics in the assisted living facility or at home with visiting nurse. Maybe they can't. But unless somebody says, if you do this, I know I can get something really good for you then I'm not sure we should do it. And right now, the standard conversation is, we have to do this. She has pneumonia. She's got to get out of here. She's got to go to the hospital.

    Well, show me how that helps. You know? I think for a lot of people, we go to great effort to provide them with miserable deaths. And I don't think it's the best use of our technology. And I'm not even talking about the money part of this, although it's very expensive to provide those miserable deaths. I'm just talking about getting people what they want.

    GROSS: So what is the stage of dementia in which you think maybe you shouldn't go for the hospital of pneumonia care, maybe it's best to just stay at home or in the facility that you're in and get some antibiotics, if you can, and just be comfortable? Are you talking about, like, the very, very end stage or, like, where? 'Cause that's such a difficult judgment call to make, and the patient can't really make it because they're cognitively impaired.

    POWELL: Dementia, you know, like all diseases, it's been carefully studied and broken up into - by doctors into different stages. So there's an end stage of dementia where there's various criteria. So at that point, the person is likely to be completely bedbound, cannot get up out of bed by himself or herself, may not be able to swallow, probably cannot at all or not very much take in food by mouth, is unlikely to be able to speak, probably doesn't recognize the people that they love and is likely to have a general deterioration, can't walk, can't do lots of things, is incontinent. So that's the final phase. For me and for a lot of people, the important thing then is to say keep me comfortable. We can't fix dementia. There's no cure coming. And most - many people who have that final stage of dementia may also have other diseases that are also rattling along towards a final conclusion. They may have end-stage heart disease, a form of cancer. There's lots of other comorbidities. They're very common with that end stage of dementia.

    So for me, personally, I think I do have a voice. I can make an advance directive saying, guys, I get it. Dementia can be fatal. When I'm at that final stage, absolutely, please give me comfort care. It's not no care. It's - don't do anything for me. It is very aggressively do everything you can to make sure that my end is comfortable.

    GROSS: So you're saying it's helpful if you're in the early stages of dementia to write a good advance directive for what you want in the final stages. How do you know you're in the early stages of dementia? 'Cause I think that a lot of people who are over 50 or 60 or 65 or in their 70s think that they're in the early stages of dementia because they don't remember things as well as they used to, but not remembering things as well as you used to is a standard sign that you're getting older. It doesn't necessarily mean you have dementia. And, you know, so how do you know?

    POWELL: Right. So there is absolutely normal cognitive aging. If you really want to know if you have dementia, you can go talk to a geriatrician or - if you're at the right age for that - or get cognitive testing. But, really, it has to do with function. Can I still do my job? Can I still handle my finances? And if you're unsure about that, by all means, get tested, consult somebody. Now, here's where I feel medicine has kind of fallen down on the job. Unfortunately, there are still doctors who think it's not right to make the diagnosis of dementia even though they know that's what's happening. We can't cure it. They figure, why upset people?

    Listen; I'm, in my day job, a bioethicist. The information that has to do with you is your information. You have a right to know it unless you say it's too scary for me, don't tell me, tell my son. You really have some plans to make. So you can get - you should be able to get a diagnosis from a doctor. And if your doctor gives you a fishy answer, get a better doctor.

    GROSS: You strongly believe that since there is no cure for dementia. And there is unlikely to be any in the near future. And even if there was, a lot of people have already started to develop it, whether they're symptomatic or not, so the cure would maybe be too late for them anyway, so we'd better find ways - like, better ways - of dealing with the long process of dementia. And you're hoping that we'll be able to find ways that can add some joy or increase the joy of people who have dementia. And we're not talking about, like, end-stage dementia. We're talking about the steps toward that end stage. What are some of the things you've been thinking about that can add some joy in life even if you're losing your memory and things that you're thinking, like, you'd like to have if you end up having dementia?

    POWELL: Well, music is one of the great things. The part of your brain that deals with music - man, that thing is built to last. It really (laughter) stands up to dementia. So that's why there's a wonderful program developed by a man named Dan Cohen called Music and Memory where he goes around to nursing homes and tries to build playlists for people with dementia and in nursing homes. And when you play that music, if you get the right song, people really can kind of just perk up. They really look happy. It's such a small thing. So one of the thought experiments that I do in the book is I make a playlist for myself, you know, and I've got Aretha on there. I've got all my old favorites. And it's music that now makes me really joyful. And that's my best guess for the kind of thing that might help if I really go to the land of dementia. Here's something that I might be able to pack up and take with me.

    And there are other things like that. I love the natural world. I love gardens. I'd love to figure out if there's a way that I can just be outside and kind of looking at plants and birds. That just makes me happy. It always did as long back as I can remember. So although I may change, my guess is that I'll still be like that when I have dementia. And small things like that can make a difference.

    GROSS: My guest is bioethicist and psychiatrist Dr. Tia Powell, author of the new book "Dementia Reimagined." After a break, we'll talk about the dilemma she faced when her mother had dementia. Should she be given a pacemaker to prolong her life? And Justin Chang will review the new film "The Souvenir." I'm Terry Gross, and this is FRESH AIR.

    (SOUNDBITE OF JENO JANDO PERFORMANCE OF BEETHOVEN'S PIANO SONATA NO. 14 IN C SHARP MINOR, OP. 27, NO. 2, "MOONLIGHT")

    GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Dr. Tia Powell, author of the new book "Dementia Reimagined." She writes about issues pertaining to long-term care, preserving dignity and helping the person with dementia find some joy. And she reflects on the question, what is a good death for someone with dementia? Powell is the director of the Montefiore Einstein Center for Bioethics, and she's a professor of psychiatry and bioethics at Albert Einstein College of Medicine.

    So as we were discussing earlier, your mother and your grandmother had dementia. And the doctors wanted you to decide whether your mother should get a pacemaker. And this was a really big and important decision. And I'm sure a lot of our listeners have been through this or will go through this. Your grandmother had a pacemaker when she had dementia, and you had a lot of second thoughts about that. What went wrong with your grandmother having a pacemaker?

    POWELL: My grandmother had six kids. My mother had six kids. (Laughter) When my grandmother had six kids, the doctor approached them and said, she has dementia and she has heart block. She has to get a pacer. And they went, OK. And they all regretted it. And I think she did, too, to the extent she was capable. She lived way into her 90s. I think she was 97 when she died. And she was really uncomfortable. Her last years were pretty miserable. And I think all six of my grandmother's children thought, we shouldn't have done that to her, and we certainly don't want that for ourselves.

    GROSS: They shouldn't have kept her alive to just experience discomfort on the way toward death?

    POWELL: Yeah. It was basically extending a process of dying and of misery that was hard to treat. So all of my - mother and all her five siblings basically thought, please don't do that. Don't do it to me now. Don't do it to me later. So my mother had been super clear. But, you know, she started getting these funny episodes, and a cardiologist came and said, this is so great. We have a solution. She needs a pacemaker. And I am also one of six kids. So, you know, six kids, 14 opinions. Everybody thinks they know what's best. And we had a big debate about, could you do a pacemaker now, while my mother seemed fairly comfortable, and shut it off later?

    And that's not as easy to do as it should be. Cardiologists can be very picky about pacemakers. They really carve out a special status for them, saying, it's just this little thing. It's just a tiny little piece of machinery. It doesn't hurt anybody. Why don't you just leave it on? Why, why? You know, nobody needs to die of heart block. But it's - to me, this is a real problem with medicine. That is an idiotic way of looking at it, an idiotic way pursued by many really smart people (laughter).

    But basically, if you're going to die and somebody says, you shouldn't die of this, who are they to say that? Maybe the this that's on offer is way better than the that that's facing you in the future. And that's really an issue with dementia. It's not, frankly, a great way to die. It's a slow death. And for most of us, a slow death is not a recommendation.

    So I think the pacemaker decision was really a tricky one for us. But we decided it wrongly. My mother actually fixed it. The cardiologist came. And she said, what are you doing here? And he said, I came to take you for a pacemaker. And she basically said, get away from me, young man. You know, I mean, you guys do too much stuff to old people. Get away. I don't want a pacemaker. So she took care of it.

    GROSS: So why is it so hard to turn off a pacemaker - ethically hard, (laughter), to turn off a pacemaker in a patient who is actively dying of dementia?

    POWELL: I think it's a psychological issue. It is, in fact, technically unbelievably easy to turn off a pacemaker. You just sort of wave a little wand, in effect, a kind of magic wand, and it shuts down the batteries and the thing has stopped. And it doesn't impair the natural functioning of your heart. It's, you know, it's just - you know, just shut the thing down. It's easy, technically, to do. But I think doctors have this notion that they are goalies. I'm on goal, and if I'm a cardiologist, nobody gets a shot on cardiology. You know, you're not going to die a cardiac death. And that makes me a good doctor.

    It's, however, an incredibly foolish notion. A person is not a heart. A person is a complex entity with lots of things going on. And if death is, you know, at the doorstep, I don't know that the doctors get to take a vote and say, you know, which is the exit door. It should be up to the person, to the extent possible, and it should include thinking about not what we can't do, but what's the benefit of that and what are the burdens of that? What should we do?

    And I think this is a conversation that's going on now in medicine, but it's not as routine as it should be. Doctors are uncomfortable with it.

    GROSS: They'll be afraid of being sued, also. Right?

    POWELL: They're afraid of being sued. But, actually - of course, that's the reality, but I don't actually think that's the most powerful lever here. I think the most powerful lever is some kind of understanding that, I should prevent death, and here are the kinds of death that I can prevent so I'm doing my job if I stop that.

    GROSS: I think the feeding tube question has become a big and profoundly difficult question for families of people who have dementia. And first of all, explain, like, why do people in final stages of dementia stop being able to eat or swallow?

    POWELL: Right. So dementia is a brain disease, as we said earlier. It's not just memory. It has physiologic effects. Your brain is the control tower of the whole operation. And as it deteriorates, you're not going to be able to walk. You can't get your balance. You can't move your legs when you tell them to. You don't even remember to tell them to. You don't know how to do that. And that's true of all of your muscles, including the ones that control swallowing. So the vast majority of people who make it all the way to the end of dementia will have difficulty swallowing, something like 98 percent. So that's pretty tricky.

    The interesting thing is, over decades, we have gathered really incontrovertible evidence that a feeding tube in end-stage dementia certainly does not increase your quality of life, but it actually doesn't even increase the duration of your life. So I think the GI doctors who put in feeding tubes in and the nursing homes that prefer them, frankly, because it takes less staff time to hang the nutrition from the feeding tube, you know, they're not really actually looking at this in terms, I think, of what's best for the patient.

    GROSS: Well, let's take a short break here, and then we'll talk some more. If you're just joining us, my guest is Dr. Tia Powell. She is the director of the Montefiore Einstein Center for Bioethics and the author of the new book "Dementia Reimagined." We'll be right back after a break. This is FRESH AIR.

    (SOUNDBITE OF THE WEE TRIO'S "LOLA")

    GROSS: This is FRESH AIR. And if you're just joining us, my guest is Dr. Tia Powell, director of the Montefiore Einstein Center for Bioethics and author of the new book "Dementia Reimagined."

    A lot of health care is determined by where are the profits and where are the losses. And you say some nursing homes are getting out of the long treatment business and moving instead to short-term care. What are the financial reasons behind that?

    POWELL: So Medicare, which is the government health plan that takes care primarily of the elderly, pays better than Medicaid, which is a state and federal kind of partnership program that helps pay for care for the poor. So weirdly, we've decided that long-term care should not be covered by Medicare, the program for the old, but should be covered by Medicaid, the program for the poor. OK. So that's, on the surface of it, kind of an odd idea. And the long history of how that came to be - I think people were terrified that if we covered long-term care insurance for everybody who was older, everybody would need it, and it would break the bank. I mean, breaking the bank - we certainly don't want to do that but just sort of not giving people a way to pay for the help that they need does not prevent people from needing that help. So we have kind of a major blind spot in our health policy globally. And we are, as far as I can tell, not in a likely situation to fix it.

    But what it means is that a lot of nursing homes are closing. A lot of nursing homes are going out of business. And the ones that are staying in business, particularly the for-profit ones, are generally shifting away from long-term care, which is compensated at the lower Medicaid rate, and just doing the shorter term care, which sort of ends at 100 days that's paid for by Medicare. So if you go into the hospital and you're older than 65 and you need a little bit of rehab, you know, sort of get back up on your feet, you were lying in bed for two weeks, now your muscles are all weak, you need some physical therapy and some other stuff, you can get Medicare to pay for that shorter term stay in the nursing home. And they can stay afloat doing that. It's a lot tougher to stay afloat if you really cover that long-term care that somebody with real advanced dementia may need. And it's a problem because we need long-term care.

    You know, we have a situation now where there are a lot of older people. Maybe they're both, you know, 85. One has dementia. The other one's also 85. And they're trying to keep that person at home. And, frankly, sometimes it's dangerous. Sometimes it's really bad for both of them. It might be better if we could get that person safely into a good and comfortable nursing home. But unless they give up all their assets, unless they go on Medicaid, unless they can get a facility that accepts Medicaid, they may not be able to do that. So it's - we're in a tough spot here.

    GROSS: But that's the thing. A lot of people who are middle class choose to become poor in order to qualify for Medicaid so that they could be in a nursing home that they otherwise wouldn't be able to afford.

    POWELL: Yeah, but that's a dwindling option. So Medicaid budgets make up a big chunk of a lot of state budgets. And the states are trying to drive down that Medicaid budget. So even though lots of people in the middle class are trying to become poor and to qualify for Medicaid, the state is sort of chasing that cycle and saying, no, no, no, no, no, we're going to make it harder to qualify for Medicaid. We're going to have fewer beds available to pay for Medicaid. We're going to try and keep more of you at home. Some states have good programs that try to help keep people safely at home, and some do not. And in some states even with good programs, there are not enough of them to go around. So we have more and more people trying to jump into the lifeboat of Medicaid, and the state is trying to push them right back out into the waters. We've got an ugly situation, which is likely to get worse because more and more of us are getting older. Our population is aging.

    GROSS: Of course, there's the option of home health care aides, but, you know, the paradox there is that it's extraordinarily expensive to have a home health care aide on a daily basis. And a lot of people really need it on a daily basis. And even if your spouse is there, if your spouse isn't strong enough to lift you out of bed and get you to, you know, a commode or a bathroom, you need help. You need somebody who's going to be able to do that. But the aides are paid as if they're totally unskilled and not respected. On the other hand, you pay a fortune to hire them. And the difference is usually, like, the agency that is hiring the aide and that you're working through to get the aide, they make - I think they make a fairly decent profit. But the people doing the work, from what I can tell, are very underpaid, and they don't get any benefits. So, like, that's the - that's a dilemma that I don't see anybody trying to fix.

    POWELL: There are some people working on it, but I don't think that - no one would argue that we have fixed it. By the way, I don't find it so unskilled. I don't know if you've ever had the occasion to try and get somebody who's agitated, who's bigger than you, into a bathtub, onto a toilet. It takes some real skill. And...

    GROSS: Absolutely. And you have to know how to do that to a person without, like, dislocating their shoulder. I've seen people do such a...

    POWELL: Or yours.

    GROSS: Or yours. I've seen people do such a kind of terrible job knowing - and I know, like, they're really hurting the person. But a really good home health care aide who's experienced and has some training can do all that without causing any harm.

    POWELL: Yeah. I mean, this is a really big issue, and it's kind of a scandal actually. There are many, many people - the vast majority of them are women. Many are women of color. Many are immigrants. This is not - it is hard work. This is low paid work. This is not work, by the way, that Americans who are citizens are lining up to do, saying, yes, I absolutely want to get the agitated older person into the bathtub and have them punch me in the face while I do it. It is really tough work. And the people who do it well are geniuses. They are really just Jedi masters of kindness, of intellectual and a sort of emotional intelligence. So there are some groups that are doing that. There are a number of groups who are looking at how do we support wages? How do we either do unions or figure out how to guarantee minimum wages? You know, for a long time, home health care agencies were exempt from paying minimum wage to their workers. There are other people who offer jobs to people without an agency to make sure that whatever they're paying - the family - all of that money goes straight to the worker. A lot of that goes with cheating on taxes and Social Security, so it was very tricky.

    We need more really smart people to think about how do we get good people doing this work. And how do we use them and deploy them most efficiently and most effectively to get, you know, safe and comfortable living arrangements that are great for the person with dementia and their family and the people doing this work?

    GROSS: So when it comes to writing an advanced directive, a living will, what advice do you have so that it's specific enough so that people really know what you want and that they don't have to have, like, long family fights interpreting a vague directive?

    POWELL: Right.

    GROSS: Of course, you don't necessarily know what you're going to be dying of when you write your advanced directive.

    POWELL: Yeah, the advanced directive is the best we've got. But it's actually not a great invention. (Laughter). It's - there's no informed consent. You're asked to comment on stuff that - you don't know what things we're talking - we don't know what intervention we're talking about and what the risks or benefits are. So the best plan is to record your goals and your values. Unless there's some specific treatments that you think you're likely to need, I wouldn't get into the specific interventions because as soon as you write a list of 20 things, we're going to invent something the next day that's not covered in your list, you know?

    So if you know what's sort of maybe heading your direction, you know, fine, comment on that. But I wouldn't get too caught up in the specific interventions. I'd focus on what it is that you're hoping to accomplish. And that, for me - and, you know, I work with these - we work with these all the time in our hospital.

    The best directive is the one that focuses on the goals. What is it that you're hoping us to use the tools of medicine to get to? And that, I think, is really important. And it's great to have that conversation. You know, it's a hard conversation. But it's actually a lot harder to not have it. You're much more likely to get the end that you would prefer than if you pretend it's not coming and let somebody else set the thing up.

    GROSS: So this is a tough question to answer now. But since your mother and grandmother had dementia and you're concerned about the possibility of having it yourself in the future, you have two adult children. What role would you want them to play? What role wouldn't you want them to play in your health care if you get dementia?

    POWELL: Well, the last thing I want is really to ruin the lives of my children. And it would be horrible to me to think of my two kids who are, you know, really kind of loving adulthood and, you know, working at work that's hard and interesting - I don't want them to quit their jobs and take care of me at home. That would be, for me, the worst possible outcome. I don't want that. I don't want to be alone. So I'm glad if they have to - can they help manage my care? Can they keep an eye on me? Can they make sure I'm doing OK?

    But I don't believe in taking prisoners. I think we have to get away from the notion that particularly daughters need to kind of give up everything and go take care of their parents. That's honorable work. I admire the people who choose to do that. I think we should make that choice possible. I don't think that we should shun and embarrass people who think, that's not right for me. That's not the right choice for my family.

    GROSS: Dr. Powell, I want to thank you so much for talking with us.

    POWELL: It's been a real pleasure. Thanks so much for having me.

    GROSS: Dr. Tia Powell is the author of the new book "Dementia Reimagined." After a break, Justin Chang will review the new film "The Souvenir." This is FRESH AIR.

    (SOUNDBITE OF DANIEL FREEDMAN'S, "LOVE TAKES TIME")

    Copyright © 2019 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.
     
    Beeds07 likes this.
  4. Prospector

    Prospector I am not a new member
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    My mom was diagnosed about three and a half years ago.
    Was doing fine until last November and had a massive loss of cognitive independence.
    We moved her into a Alz facility in Jan.
     
    GGCD, Beeds07, Nelson and 11 others like this.
  5. Tricky Gator

    Donor TMB OG
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    dump, FarmerBrown and tigr2ndbase like this.
  6. Tiffin

    Tiffin GOATs
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    My Grandma has Parkinson's. Not the same, but it does have some dementia/hallucinations attached to it. Fucking sucks.
     
    Saul Shabazz, dump and LetItSoak like this.
  7. blind dog

    blind dog wps
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    My wife's great grandmother died from this. Her great aunt is currently in a memory loss home and has completely lost her mind, we can't even take her to dinner anymore. Her grandmother is starting to get forgetful

    :ohdear:
     
    dump and LetItSoak like this.
  8. Tiffin

    Tiffin GOATs
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    This was my grandma. Had my aunt living with her and was managing for a couple years but it became too much and they moved her into assited living in December.
     
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  9. Lyrtch

    Lyrtch My second favorite meat is hamburger
    Staff Donor

    Sorry to hear it, maybe my biggest fear is getting it.
     
  10. Prospector

    Prospector I am not a new member
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    my kids are terrified of it. Both their grandmothers have it and their maternal great grandmother
     
    Lyrtch likes this.
  11. chuckles

    chuckles Well-Known Member
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    Alzheimer's runs in my mom's side of the family. Every time she repeats herself or anything like that I hurt inside knowing it's likely just a matter of time :tebow:
     
    LetItSoak likes this.
  12. tylerdolphin

    tylerdolphin My spoon is too big
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    I can't think of a worse way to go for me. I'd like to think I'd off myself before it got too bad, but I'm not sure I could. Feeling what I know as me slowly slipping away has to be awful.
     
    LetItSoak likes this.
  13. football501

    football501 I once ate a Twix with the wrapper on it
    TMB OG
    Nebraska CornhuskersKansas City RoyalsEvertonAvengersUnited States Men's National Soccer Team

    My grandma on my mom's side was the world's sweetest woman, which was good because my grandpa was a world class jerk, and she went through dementia. Thankfully, all of the sweetness remained but the memory and ability to put names with faces evaporated rapidly. Near the end she would see grandkids and even her kids and would say "now I can't remember your name, but I know that I love you" :tebow:

    My Ts and Ps are with any of you who have to watch someone go through it, it's rough.
     
    IV, Lenin, Taffy and 9 others like this.
  14. Henry Blake

    Henry Blake No Springsteen is leaving this house!

    My mom had it. Thankfully it was a gradual decline. Last year or two were pretty rough.
     
  15. Odin

    Odin social distancing since 1990
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    Alabama Crimson TideAtlanta BravesChelseaMetal

    My mother has recently decided to smoke some weed everyday to try to delay such things. Not sure if it will actually do anything but hey whatever helps her sleep at night.
     
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  16. tigr2ndbase

    tigr2ndbase Well-Known Member
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    Mississippi State Bulldogs

    Disease sucks. I’ve started a fund raising campaign if any of you feel moved to donate a couple dollars. My dad is the last remaining sibling of his 4 siblings that all passed from it. Taking the trip with him last year was one of the best things I’ve ever done.

    http://act.alz.org/site/TR?px=15867852&fr_id=11896&pg=personal
     
  17. pnk$krtcrÿnästÿ

    Donor
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    My mom was dx'd about that time too. Still doing ok, but she's slipping faster and faster. 62 years old.

    Not comfortable to sit around with that looming in your family history. But as the article mentions, nothing we can do about it. Just live life I guess.
     
    nolecpa likes this.
  18. Prospector

    Prospector I am not a new member
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    yep her last couple of weeks before we moved her, we had a great time, lots of laughing etc
     
  19. DeToxRox

    DeToxRox We dug coal together
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    My wife’s grandfather was skiing on his 83rd birthday. Six months later, he was in a long term care facility for dementia. It’s terrifying how quickly he went downhill.
     
    Prospector likes this.
  20. Emma

    Emma Wisconsin
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    4 years ago or so, senior year of college, my grandma was admitted to a residential home in the same city as me. I loved being able to see her every few days for a couple hours.

    At that time, her lewy body dementia was taking a drastic turn for the worse.

    Not to be funny, but I can't tell you how many times my dog or I would end up with soup thrown at us because she would forget who we are halfway through our visits. Horrible to see, even worse for the individual going through the experience. I assume I'm in for it too after the amount of concussions I've had.
     
  21. Detlef Schrempf

    Detlef Schrempf Well-Known Member
    Donor

    Lost my Dad in November, he’d had it for 5 years or more but it had gotten progressively worse in the last two years. My wife and I moved across the country to be near and help out Mom with everything that comes with the territory and it’s just a terrifying disease.

    Confusion a lot of times leads to anger because they can’t figure out why they can’t figure things out. Dad knew my name until a week or two before he died, but there were multiple times especially over the last two years that he wouldn’t use my name in conversation but you could see in his eyes he knew I belonged there but wasn’t sure who I was.

    The sun downers side of it is particularly scary as Dad would wake up from having super vivid dreams and think someone was breaking into my parents house and would run around the house with a knife. Luckily I had my mom remove all of his old rifles and guns from the house a few years ago in anticipation of the disease getting worse. It was crazy because sometimes I could look him in the eye and he was just a completely different person, the disease makes you grieve differently because you have to accept you’ve lost your loved one before they actually die.

    Was really lucky to be back here for the last couple of years and my Dad got to see my daughter, and even though there were some extremely frustrating and sad times, it was incredible to watch him with my daughter, it almost helped him turn back the clock a little bit and he loved spending time with her, helped me get a little piece of dad back in the year before he passed.

    Terrible disease.
     
  22. bertwing

    bertwing check out the nametag grandma
    Staff Donor
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    My grandmas had it since 2007 or so. She’s been in a couple different facilities since 2010. It’s been really hard on our family because she was such a badass and now can’t even feed herself.

    Worst disease there is
     
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  23. Lyrtch

    Lyrtch My second favorite meat is hamburger
    Staff Donor

    wish people in general, but especially family that don't come around much, understood this fully
     
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  24. Detlef Schrempf

    Detlef Schrempf Well-Known Member
    Donor

    It really is tough to understand until you’ve lived it. I remember when my wife and I got married we could barely get my dad on a plane to come to the wedding, not because he didn’t love me or was t happy that we were getting married, but that kind of change and travel is just nearly impossible for someone with dementia (and this was 3 and a half years ago before it got really bad, although it was still bad), and I had to explain to her a week before the wedding that I wasn’t sure if my Dad was coming (he ended up coming). Part of that conversation was me explaining to her that I’d already grieved because I’d lost the Dad I grew up with, and it was really hard for her to understand at first.

    I talked with her before we got married (we lived out west) and I had to walk her through in detail how my dad’s condition was deteriorating, and that if it significantly declined we would need to go back to Florida, and luckily I married someone who’s a way better person than I am and she understood.

    Six months after we got married we had to make the move, and as soon as we got here it clicked for her and she really got it, but it’s a difficult thing to understand before you live it.
     
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  25. houtex716

    houtex716 let's have a beach party
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    I work in home health and the toughest patients are those with advanced dementia. Shit sucks
     
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  26. jbr

    jbr Well-Known Member
    Donor TMB OG

    My dad is 7 years into a Parkinson’s diagnosis. He is just starting to really be affected by it both physically and mentally. He has been going downhill for years, but the brakes have come off in the last six months. Let me tell you, it fucking sucks to watch your dad cry about how much of a burden he is for everyone and how guilty he feels about it all.
     
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  27. Wu

    Wu Cusses a little and falls short of The Creed
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    When my grandpa passed, my grandma didn’t really know what was going on (didn’t really know where she was much less anyone’s name). The night before the funeral, she woke up in the middle of the night, had remembered he died, and was standing in the middle of the living room, inconsolable.

    It’ll be a sight etched into my memory as long as I live. I’ve given my siblings permission to put me out of my misery if I ever get to that point.
     
  28. DriveByBBQ

    DriveByBBQ Well-Known Member
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    I work in Senior Housing and have toured hundreds of facilities/communities across the country that cover the entire spectrum of care. AMA.
     
    Saul Shabazz likes this.
  29. TC

    TC It’s a lawless nation for the flamingo
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    I can’t wait to forget everything I know about Gamecock football.

    Jk, Alzheimer’s and dementia are very sad conditions. Heart goes out to anyone dealing with them in their family
     
  30. Prospector

    Prospector I am not a new member
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    Business
    Pfizer had clues its blockbuster drug could prevent Alzheimer’s. Why didn’t it tell the world?

    <iframe width='480' height='290' scrolling='no' src='' frameborder='0' webkitallowfullscreen mozallowfullscreen allowfullscreen></iframe>
    By Christopher Rowland
    June 4 at 7:05 PM
    A team of researchers inside Pfizer made a startling find in 2015: The company’s blockbuster rheumatoid arthritis therapy Enbrel, a powerful anti-inflammatory drug, appeared to reduce the risk of Alzheimer’s disease by 64 percent.

    The results were from an analysis of hundreds of thousands of insurance claims. Verifying that the drug would actually have that effect in people would require a costly clinical trial — and after several years of internal discussion, Pfizer opted against further investigation and chose not to make the data public, the company confirmed.

    Researchers in the company’s division of inflammation and immunology urged Pfizer to conduct a clinical trial on thousands of patients, which they estimated would cost $80 million, to see if the signal contained in the data was real, according to an internal company document obtained by The Washington Post.

    ADVERTISING
    “Enbrel could potentially safely prevent, treat and slow progression of Alzheimer’s disease,’’ said the document, a PowerPoint slide show that was prepared for review by an internal Pfizer committee in February 2018.

    [The most expensive drug on the planet will treat infants with rare disease. The market fight focused on cost and safety is just getting started]

    The company told The Post that it decided during its three years of internal reviews that Enbrel did not show promise for Alzheimer’s prevention because the drug does not directly reach brain tissue. It deemed the likelihood of a successful clinical trial to be low. A synopsis of its statistical findings prepared for outside publication, it says, did not meet its “rigorous scientific standards.’’

    The surprising reasons why drug prices in the U.S. are higher than in the rest of the world

    Pharma companies have raised prices for new drugs and commonly used medications causing many patients to order their much-needed medications across the border. (Luis Velarde/The Washington Post)

    Science was the sole determining factor against moving forward, company spokesman Ed Harnaga said.

    Likewise, Pfizer said it opted against publication of its data because of its doubts about the results. It said publishing the information might have led outside scientists down an invalid pathway.

    Pfizer’s deliberations, which previously have not been disclosed, offer a rare window into the frustrating search for Alzheimer’s treatments inside one of the world’s largest drug companies. Despite billions spent on research, Alzheimer’s remains a stubbornly prevalent disease with no effective prevention or treatment.

    Some outside scientists disagree with Pfizer’s assessment that studying Enbrel’s potential in Alzheimer’s prevention is a scientific dead end. Rather, they say, it could hold important clues to combating the disease and slowing cognitive decline in its earliest stages.

    [Why coming up with a drug for Alzheimer’s is so devilishly hard]

    [​IMG]
    Despite promising preliminary data in an internal analysis, Pfizer opted against conducting a clinical trial to see if its drug Enbrel could prevent Alzheimer's disease. (Spencer Platt/Getty Images)
    Pfizer did share the data privately with at least one prominent scientist, but outside researchers contacted by The Post believe Pfizer also should at least have published its data, making the findings broadly available to researchers.

    “Of course they should. Why not?’’ said Rudolph E. Tanzi, a leading Alzheimer’s researcher and professor at Harvard Medical School and Massachusetts General Hospital.

    “It would benefit the scientific community to have that data out there,’’ said Keenan Walker, an assistant professor of medicine at Johns Hopkins who is studying how inflammation contributes to Alzheimer’s. “Whether it was positive data or negative data, it gives us more information to make better informed decisions.’’

    Internal discussions about possible new uses of drugs are common in pharmaceutical companies. In this case, Pfizer’s deliberations show how decisions made by industry executives — who are ultimately accountable to shareholders — can have impact well beyond corporate board rooms.

    As its Enbrel deliberations ended early last year, Pfizer was getting out of Alzheimer’s research. It announced in January 2018 that it would be shutting down its neurology division, where Alzheimer’s treatments were explored, and laying off 300 employees.

    Meanwhile, Enbrel has reached the end of its patent life. Profits are dwindling as generic competition emerges, diminishing financial incentives for further research into Enbrel and other drugs in its class.

    “I’m frustrated myself really by the whole thing,’’ said Clive Holmes, a professor of biological psychiatry at the University of Southampton in Great Britain who has received past support from Pfizer for Enbrel research in Alzheimer’s, a separate 2015 trial in 41 patients that proved inconclusive.

    He said Pfizer and other companies do not want to invest heavily in further research only to have their markets undermined by generic competition.

    “Someone can pop up and say, ‘Look, I’ve got a me-too drug here,’ ’’ Holmes said, referring to the advent of generic versions of Enbrel. “I think that is what this is all about.’’

    'A missed opportunity'
    The broader market forces that critics say discouraged Pfizer from investing in Alzheimer’s clinical trials are rooted in Enbrel’s “life cycle,’’ the 20-year period of patent exclusivity when a brand manufacturer reaps monopoly profits from a drug. By industry standards, Enbrel, an injectable biologic drug, is relatively old, with FDA approval for rheumatoid arthritis in 1998. It also has been approved to treat psoriasis.

    [Drugmakers alleged scare tactics may hold back generic competition]

    Pfizer got rights to market it internationally when it acquired drugmaker Wyeth in 2009. But Enbrel, which earned Pfizer $2.1 billion in 2018, now faces generic competition.

    Drug companies often are criticized for extending the patent life of a drug — and winning new profits — by merely tweaking a drug’s molecule or changing the method of delivery into the body. But it is a “heavy lift’’ for a company to win regulatory approval to use a drug for a completely different disease, said Robert I. Field, a professor of law and health care management at Drexel University.

    “Our patent laws do not provide the appropriate incentives,’’ Field said. Drug therapy for early Alzheimer’s “would be a godsend for American patients, so we should be doing everything we can as a country to encourage development of treatments. It’s frustrating that there may be a missed opportunity.’’

    As Enbrel’s life cycle winds down, Pfizer has introduced a new rheumatoid arthritis drug, Xeljanz, that works differently from Enbrel. Pfizer is putting its marketing muscle behind the new treatment. While Enbrel revenue is shrinking, Xeljanz revenue is growing. The Xeljanz patent expires in 2025 in the United States and 2028 in Europe, according to Pfizer’s public disclosures. The drug is on track to make Pfizer billions more each year for the foreseeable future.

    [Pharma giant profits from HIV treatment funded by taxpayers and patented by the government]

    Wagering money on a clinical trial of Enbrel for an entirely different disease, especially when Pfizer had doubts about the validity of its internal analysis, made little business sense, said a former Pfizer executive who was aware of the internal debate and spoke on the condition of anonymity to discuss internal Pfizer matters.

    “It probably was high risk, very costly, very long term drug development that was off-strategy,’’ the former executive said.

    Another former executive, who also spoke on the condition of anonymity to discuss Pfizer operations, said Pfizer offered virtually no explanation internally for opting against further investigation in early 2018, when the internal debate ended.

    “I think the financial case is they won’t be making any money off of it,’’ the second former executive said.

    'Impeding research'
    Drug companies frequently have been pilloried for not fully disclosing negative side effects of their drugs. What happens when the opposite is the case? What obligation does a company have to spread potentially beneficial information about a drug, especially when the benefits in question could improve the outlook for treating Alzheimer’s, a disease that afflicts at least 500,000 new patients per year?

    A medical ethics expert argued that Pfizer has a responsibility to publicize positive findings, although it is not as strong as an imperative to disclose negative findings.

    “Having acquired the knowledge, refusing to disclose it to those who might act upon it hides a potential benefit, and thereby wrongs and probably harms those at risk of developing Alzheimer’s by impeding research,’’ said Bobbie Farsides, professor of clinical and biomedical ethics at Brighton and Sussex Medical School in London.

    Another health-care ethics specialist cautioned that the demand for drug company disclosure should remain focused on information collected during clinical trials.

    “I do think you have to draw some limits, and say that not every piece of information they have in their files has to be disclosed with others,’’ said Marc A. Rodwin, a law professor at Suffolk University Law School in Boston.

    Pfizer markets Enbrel outside North America. Another drug company, Amgen, which holds rights to market Enbrel in the United States and Canada, says it knew of the Pfizer data and similarly decided the findings held little promise. Amgen said market factors played no role in its deliberations.

    “Unfortunately, our exploratory work did not yield results strong enough to warrant further studies,’’ Amgen said.

    Analyzing insurance claims
    Sometimes doctors prescribe drugs for uses that have not been approved by the Food and Drug Administration. But none of the experts interviewed for this story said such “off-label’’ use of Enbrel would be appropriate for Alzheimer’s, because of the very limited nature of the data thus far. Nor, they said, do they believe such prescribing is happening to any significant extent.

    The role of brain inflammation in Alzheimer’s recently has been getting closer attention among academics after the failure of multiple experimental drugs that targeted the buildup of plaques on brain tissue. In 2016, researchers from Dartmouth and Harvard universities published a study of insurance claims data — similar to Pfizer’s internal findings — that showed a potential benefit of Enbrel. Enbrel “shows promise as a potential treatment’’ for Alzheimer’s, the study found.

    Pfizer’s analysis about potential Enbrel benefits in the brain sprang from the company’s division of immunology and inflammation, based in a large Pfizer office complex in Collegeville, Pa.

    Statisticians in 2015 analyzed real world data, hundreds of thousands of medical insurance claims involving people with rheumatoid arthritis and other inflammatory diseases, according to the Pfizer PowerPoint obtained by The Post.

    They divided those anonymous patients into two equal groups of 127,000 each, one of patients with an Alzheimer’s diagnosis and one of patients without. Then they checked for Enbrel treatment. There were more people, 302, treated with Enbrel in the group without Alzheimer’s diagnosis. In the group with Alzheimer’s, 110 had been treated with Enbrel.

    The numbers may seem small, but they were mirrored in the same proportion when the researchers checked insurance claims information from another database. The Pfizer team also produced closely similar numbers for Humira, a drug marketed by AbbVie that works like Enbrel. The positive results also showed up when checked for “memory loss’’ and “mild cognitive impairment,’’ indicating Enbrel may have benefit for treating the earliest stages of Alzheimer’s.

    A clinical trial to prove the hypothesis would take four years and involve 3,000 to 4,000 patients, according to the Pfizer document that recommended a trial. The document said Pfizer would gain a positive public relations “halo effect’’ by investigating an Alzheimer’s treatment.

    Enbrel reduces inflammation by targeting a specific protein called TNF-a. The Pfizer analysis of claims data added to a growing body of evidence that broadly targeting TNF-a in the body has the potential to prevent Alzheimer’s, said Holmes, the professor of biological psychiatry at the University of Southampton.

    Holmes is among the few researchers who have gained access to the Pfizer data; he won the company’s permission to use it in a grant application for a small clinical trial he is undertaking in England.

    “If it’s true in reality, if you did it in a clinical trial setting, it’s massive — it would be huge,’’ Holmes said. “That’s why it’s so exciting.’’

    One reason for caution: another class of anti-inflammatory therapies, called non-steroidal anti-inflammatory drugs (NSAIDS), showed no effect against mild-to-moderate Alzheimer’s in several clinical trials a decade ago. Still, a long-term follow-up of one of those trials indicated a benefit if NSAID use began when the brain was still normal, suggesting the timing of therapy could be key.

    Pfizer said it also was skeptical because Enbrel has only a limited effect on the brain. The Enbrel molecule is too large to pass through the “blood-brain barrier’’ and directly target TNF-a in brain tissue, the company said.

    Yet Alzheimer’s researchers believe inflammation outside the brain — called peripheral inflammation — influences inflammation within the brain.

    “There is a lot of evidence suggesting that peripheral or systemic inflammation may be a driver of Alzheimer’s disease,’’ said Walker, the Johns Hopkins researcher. It is a fair hypothesis that fighting inflammation outside the brain with Enbrel will have a similar effect inside the brain, he said.

    “I don’t believe Enbrel would need to cross the blood brain barrier to modulate the inflammatory/immune response within the brain,’’ Walker said.

    “There is increasing evidence that peripheral inflammation can influence brain function,’’ said rheumatologist Christopher Edwards, of the University of Southampton in Britain.

    “It’s important that that’s published, and in the public domain,’’ Edward added of the Pfizer data. “It needs to be out there.’’

     
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  31. RonBurgundy

    RonBurgundy Well-Known Member

    Shit article is shitty.

    Using insurance claim data to prove a drug affects a completely different disease process is so incredibly unreliable and unscientific.

    Any of these scientists and researchers who are quoted as being offended or shocked by Pfizer’s decision are certainly free to get a grant and do the leg work themselves.

    Correlation =/= cure/prevention. Could have more to do with Enbrel reducing RA patients from going on to develop AD because of reduced inflammation, not actually preventing it in the general population, which becomes a very, very small number of patients that would benefit anyway. You’d have to check similar data to other biologics/DMARDs to see if it’s a class effect or RA specific disease effect too. That’s an incredibly complicated and twisted research path to go down.

    Also imagine the consequences/morbidity of putting 50 million geriatric patients on Enbrel to prevent AD progression. Big yikes.
     
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  32. Kinghorn817

    Kinghorn817 Well-Known Member
    Iowa State CyclonesTexas RangersDallas MavericksLos Angeles Rams

    My girlfriends grandmother has dementia and Alzheimer’s. It’s really bad now. She’s in her mid 80’s and has been diagnosed for close to 10 years now.

    Her family won’t put her in a Alz living center because they feel like they’re abandoning her if they do that so it’s really hard on her entire family. They bring in care takers to be with her everyday but she needs to go to a home. It’s really sad to see what it does to the mind. She hasn’t started to be affect physically yet.
     
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  33. Constant

    Constant Meh
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    I'm terrified of this disease. My brain is my second-favorite organ (high-fives Woody Allen). I have no real reason to expect it...my Mom and Dad had all or most of their faculties until the end.

    But the thought of the whole world and everything and everyone you love just gradually slipping away from you is unbearable. Smother me with a pillow in my sleep.
     
  34. BrickTamland

    BrickTamland You're not Ron...
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    Florida State Seminoles

    I forgot about this thread.
     
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  35. You and You

    You and You Well-Known Member
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    I feel you so hard on this. My grandmother has been in a facility for prob 7 years now. Doesnt speak to anyone, doesn't know who anyone is. Some times my mom will have a seemingly completely different recollection of recent events than anyone else, and I've told her to see someone, but she's stubborn and insists there's nothing wrong.
     
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  36. BellottiBold

    Donor
    Oregon Ducks

    Hey so if you care about research into this stuff don't vote GOP, thanks.

    - guy with a mother who was diagnosed with tau protein buildup
     
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  37. Constant

    Constant Meh
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  38. devine

    devine hi, i am user devine
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    That’s not abandoning her at all. Quite the opposite, actually
     
  39. Prospector

    Prospector I am not a new member
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    How do they keep her from wandering off?
     
  40. Kinghorn817

    Kinghorn817 Well-Known Member
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    Trust me. I’ve said this to them a million times. If anything, the Alzheimer’s care center would give her the help she needs and know how to deal with it...

    There is someone by her side every moment she is awake. Whether it’s the care taker they hire or one of my girlfriends parents or her siblings or the grandmothers sister or her other children.
     
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  41. Detlef Schrempf

    Detlef Schrempf Well-Known Member
    Donor

    This is going to break their family. As someone who’s been through it, luckily we were forced into a position due to Dad’s health where we had to do it which made the decision much easier.

    You don’t forget about them when they’re in a care facility unless you personally choose to by not visiting, keeping up on their care, etc.

    When the time came to making the move for Dad I consulted with his neurologist (who used to be our neighbor) and his neurologists ARNP, who my Dad was in her wedding, having people you trust assist with the process is invaluable, but so is lifting the uncarryable burden from their loved ones who at a certain point are no longer capable of providing the level of care that their family member now needs.
     
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  42. Detlef Schrempf

    Detlef Schrempf Well-Known Member
    Donor

    This is going to break their family. As someone who’s been through it, luckily we were forced into a position due to Dad’s health where we had to do it which made the decision much easier.

    You don’t forget about them when they’re in a care facility unless you personally choose to by not visiting, keeping up on their care, etc.

    When the time came to making the move for Dad I consulted with his neurologist (who used to be our neighbor) and his neurologists ARNP, who my Dad was in her wedding, having people you trust assist with the process is invaluable, but so is lifting the uncarryable burden from their loved ones who at a certain point are no longer capable of providing the level of care that their family member now needs.
     
  43. Saul Shabazz

    Saul Shabazz Every Coach Is Trash
    TMB OG

    the facilities that are underfunded/staffed that just have a memory care "Hall" or floor.....its some of the most brutally depressing shit I've ever seen
     
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  44. Bo Pelinis

    Bo Pelinis WE GO HARD ON EARTH
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    I used to visit my Great Grandmother (never officially diagnosed Alz but pretty damn sure because she progressively went backwards in her understanding of the present over ~5 years) when I was quite young and saw so many people muttering to themselves in a wheelchair unattended.
     
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  45. Lyrtch

    Lyrtch My second favorite meat is hamburger
    Staff Donor

    Used to visit tons of these places, there was one specifically that was absolute nightmare fuel. Just dirty, impossible to track down staff members, and after breakfast they'd put every resident in the common room so they were easier to keep an eye on.

    Was night of the living dead walking through there.
     
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  46. Saul Shabazz

    Saul Shabazz Every Coach Is Trash
    TMB OG

    sounds exactly like the place my grandpa was at
     
  47. Saul Shabazz

    Saul Shabazz Every Coach Is Trash
    TMB OG

    I know you only make 11 bucks an hour without benefits and been working for 13 hours..BUT...my manz down here in 127 been sitting in piss since breakfast
     
  48. lechnerd

    lechnerd They say Monaco is a sunny place for shady people
    Donor
    Texas AandM Aggies alt

    My :twocents:

    Alzheimer’s gets all the attention but I see way more vascular dementia and I see people misdiagnosed with AD all the time when in actuality they have VD. Risk factors include high cholesterol, high sugar, high blood pressure, smoking, obesity and excess alcohol intake. When those blood vessels in your brain tick off they don’t come back, enough die and you’ve got vascular dementia. The treatment is prevention.

    Last but not least get your vitamin D checked. A low vitamin D has been correlated with all types of dementia. They haven’t shown causation but the correlation is strong.
     
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  49. DriveByBBQ

    DriveByBBQ Well-Known Member
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    I visited a skilled nursing Medicaid facility in rural Texas with a secured wing for convicted sex offenders. One of the more disturbing places I’ve ever been. I’ve been to some extremely sad places but that one was one of the few where I legitimately felt unsafe.
     
  50. Detlef Schrempf

    Detlef Schrempf Well-Known Member
    Donor

    I will say this, there’s an extremely wide range from really great to inconceivably poor for memory care facilities. There’s an even wider range in cost as well, my Dad was in an incredible place that had multiple activities designed to help stimulate brain activity daily, had multiple guest performers throughout the week, and the care staff was legitimately incredible. They knew my name and my Mom’s name, the person that ran the facility gave me her cell number and told us to call or text anytime, and she even texted me and Mom both multiple times checking in on us, she was incredible. That said, expect a fat bill for this level of care, I believe it ran $9,000 a month.
     
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