At age 76, Susan Faludi's father underwent sex reassignment surgery. When Stephen became Stefanie, the feminist writer sets out on a journey to better understand her father -- an exploration that becomes an inquiry into the meaning of identity.
Alzheimer’s disease affects nearly five million Americans a year. But that number is expected to triple in coming years as our population ages. The cost of treating sufferers is also predicted to rise – to $1 trillion by 2050. For many years, Alzheimer’s struggled to achieve the funding levels of more prominent diseases. And breakthroughs have been few and far in between. Now, the White House has brought together a team of experts to develop a national plan of action for the illness. Join us to discuss what the new plan will mean for sufferers, their families and the medical community.
- Deborah Rubenstein director of consultation, care management and counseling, Iona Senior Services
- Dr. Scott Turner professor of neurology and Director of the Memory Disorders Program at Georgetown University Medical Center
- Robert Egge vice president of public policy at the Alzheimer’s Association
- Howard Koh Assistant Secretary for Health, Department of Health and Human Services
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Medical experts, government advisers and advocacy groups are meeting here in Washington to help finalize a draft national plan to tackle Alzheimer's disease. Here with me: Robert Egge of the Alzheimer's Association, Deborah Rubenstein of Iona Senior Services and Dr. Scott Turner of Georgetown University Medical Center. But first we'll go to Howard Koh. He is assistant secretary for health at the Department of Health and Human Services.
MS. DIANE REHMHe's taking time out from the meeting to speak to us on the phone. Good morning, sir. Thanks for joining us.
MR. HOWARD KOHThank you very much.
REHMWould you tell us about the national Alzheimer's plan, the role of this particular meeting in helping to develop the plan?
KOHSure. We all understand that Alzheimer's disease is a major challenge for the country and for patients and their families, and, until now, we have not had a unified national effort to address this challenge. So a year ago, the president signed the National Alzheimer's Project Act into law, and through his commitment, this law requires our Department of Health and Human Services to establish the first-ever national Alzheimer's plan.
KOHAnd this will coordinate research and services and accelerate treatments and hopefully galvanize the country to do more in the future. So at this point, we have a draft framework for that plan. Through the act, a very important advisory committee was established. We have that advisory council meeting right now to weigh in on this draft plan. And through the input from experts, but also particularly from patients and families, we want to finalize this plan in the very near future and really move forward as one nation to address this challenge.
REHMGive me an idea of some of the specific goals of the plan.
KOHWell, there are a number of major ambitious goals for the plan to optimize care for patients, to bolster support, not only for patients but also for families and caregivers who are experiencing tremendous burdens, not just emotional but also financial with respect to care of loved ones. We want to enhance public awareness because there is, unfortunately, still a stigma related to this condition.
KOHWe want to track progress over time, of course. And the most important overriding goal is to prevent and effectively treat Alzheimer's disease by 2025. So that's the framework moving forward.
REHMAnd I was interested in that year, 2025. Why not set the goal earlier?
KOHWell, we want the goal to be aspirational but also achievable. And this is an area where important work has been done in many parts of the planning for the future, but we haven't had an opportunity to really unify it yet. So this is the first time to unify around one set of goals and one plan. So we feel the '25 -- 2025 is both an aspirational but achievable goal.
REHMIt sounds to me as though this is a plan, as you said, to educate to public, to make sure that people understand that it should not be stigmatized. But where is the money going to come from in terms of, for example, financial health for those caregivers?
KOHSure. Well, we really understand in respect that there's tremendous need throughout the country, and we understand that Alzheimer's imposes a tremendous and enormous burden on society, not just medical but also financial and emotional. We have some money in the public system.
KOHApproximately $500 million through federal government, a lot of that at National Institutes of Health. We want to use that money as effectively and as efficiently as possible. And then we are hoping, Diane, that with the release of the plan, that we can galvanize more investments, not only financial but also human resources and stimulate further investments, not just on the public side but also on the private side as well.
KOHWe have seen in so many years of public health where public-private partnerships can really accelerate momentum and financial investments, and that's what we hope this plan will do as well.
REHMSo what are you hoping for with the $500 million at hand? Are you looking for more federal funding for Alzheimer's research and its causes? What are you hoping to achieve?
KOHWell, our greatest goal, Diane, is to meet the need. And we understand that so many people are suffering in a devastating way with this condition. It's affecting not just patients but also caregivers and families. We understand that we need a broad strategy here that tries to accelerate research but also services to people in need. We have to coordinate the efforts of people in organizations around this country better.
KOHThere are many heroes in communities who are working in roads of isolation on these issues, and we're hoping this plan will galvanize support, really integrate these efforts and catalyze action moving forward.
REHMAnd as one who's deeply familiar with these concerns, it strikes me that there are kind of conflicting things going on here. You've seen states cutting their own Alzheimer's budgets. So how does the federal government make up for that?
KOHWell, what we hope to achieve by finalizing and releasing this plan in the very near future is to align all the efforts. We have some states and communities doing a tremendous work advancing their efforts. There are other states that are reeling from financial stresses that are moving in a different direction. We're hoping with the first-ever national plan that we can align all the forces together -- the human resources, the public health commitments and the research efforts -- and help this nation move as one community moving forward on this very important area.
REHMI hope so. Howard Koh, he's assistant secretary for health in the Department of Health and Human Services. Thanks for joining us and good luck to you.
KOHThank you very much, Diane.
REHMAnd turning to you now, Robert Egge, what are you hoping to see in this plan?
MR. ROBERT EGGEWell, we're excited that, finally, we have the opportunity to deal firsthand and take on the Alzheimer's crisis in a very meaningful way. Right now, we're well aware across the country, Americans, about what the crisis means in terms of families, in terms of their lives, in terms of the nation as a whole. We see what it means in terms of the burden that families face. Alzheimer's is not just a little memory loss.
MR. ROBERT EGGEIt is a disease that devastates and breaks families in terms of what's required of them to meet the obligations of caring for people with Alzheimer's and coping with it themselves as they're going through this disease. We also see the financial impact of this disease. It has a tremendous toll for American families as they have to think about how to juggle work as their caregivers and give up their own work sometimes, as it hits people earlier in life.
MR. ROBERT EGGEAnd then, for the nation as a whole, it has a very strong impact on Medicare and Medicaid. So with all this reason to act, we're excited that now there is, as Assistant Secretary Koh was laying out, the framework to take this on. And so what we're looking for is a comprehensive plan that hits the elements that Howard laid out in terms of, first of all, research. We need to have a way to tackle this disease, but also the care and support, the health care system being adopted for people with Alzheimer's, and then public awareness.
REHMAnd turning to you, Dr. Turner, Alzheimer's has not really received the kind of attention that you believe it should in terms of all the other research into killer diseases out there.
DR. SCOTT TURNERYes, I would agree with that. I think Alzheimer's disease and dementia in general is one of the most underfunded areas that would have a significant impact on public health and certainly is deserving of more funding given the cost of the disease.
REHMHow does it compare, for example, to moneys appropriated to other causes of death, for example, diabetes?
TURNERWell, for example, the NIH budget has an annual budget of $6 million (sic) for cancer research, and so there's been great progress in cancer treatment in the last several years. In contrast, Alzheimer's disease NIH budget is about $500 million.
REHMOh, so you said $6 billion for...
TURNERThat's correct. Right.
REHMAll right. For cancer. And $500 million for Alzheimer's.
TURNERAnd Alzheimer's also has a significant impact on public health as far as cost. And so if you look at the investment versus the cost of the disease, then Alzheimer's is severely underfunded.
REHMDo you agree with that, Deborah Rubenstein?
MS. DEBORAH RUBENSTEINI do agree. As a social worker in an on-the-ground senior service provider, many of the people that we're serving -- and I think this is a nationwide trend in the senior service network -- have some form of memory loss, dementia, Alzheimer's. And we see every day the toll that that takes, first, on the person with the disease because what happens when someone has a form of dementia is that, as they lose their memory and their cognitive ability, they also lose their ability to function independently -- something that we hold very dear in this country -- everything from driving to balancing the checkbook to, ultimately, if the disease advances, to the very basics of living.
MS. DEBORAH RUBENSTEINAnd, of course, along with that come then the related social losses of no longer being able to fulfill roles that they once held. And then their families, as they're trying to care, are trying to compensate for both that lack of ability to function independently and the changes in roles.
REHMDeborah Rubenstein, she's director of consultation, care management and counseling at Iona Senior Services. Do join us, 800-433-8850. Send us your email, your postings on Facebook or tweets.
REHMAnd we're back, talking about a hope for plan that will affect the millions of Americans who suffer and are diagnosed with Alzheimer’s disease. Every year, the number of those who are affected is expected to rise as the population ages. That also means the cost of treating them, the cost that family caregivers bear is also expected to rise. The White House is now bringing together a team of experts to lay out a plan that would, we hope, be in effect by 2025 to deal with the broad range of problems that those affected and their family members affected by Alzheimer's.
REHMHere in the studio: Deborah Rubenstein of Iona Senior Services, Dr. Scott Turner of the Georgetown University Mental -- Medical Center and Robert Egge of the Alzheimer's Association. We'll open the phones very shortly. I look forward to hearing you. Are we, Dr. Turner, in your view, headed for some kind of epidemic?
TURNERWe are definitely now in an epidemic. And part of this is because of increasing population, and part of it is because of prolonged life expectancies in this country, which are still increasing every year. We also see a higher rate of Alzheimer's disease and dementia in minority populations. And as we know, minorities are now, in some places, becoming the majority, and so this is also contributing to the epidemic of Alzheimer's disease.
REHMI have heard some indication that there is a relationship between diabetes and Alzheimer's. Is that correct?
TURNERThat is correct. Having diabetes in midlife or having diabetes for many years increases the risk of having Alzheimer's disease, and we also know that there's an epidemic of obesity and diabetes in this country, which is -- may increase the epidemic of Alzheimer's in the future.
REHMWhat do you see is that connection? How is it made between diabetes and Alzheimer's?
TURNERI don't think we really know exactly what the connection is. There are theorized mechanisms, and one is perhaps an increased risk of stroke or small strokes. But I don't think we really know the answer to that question.
REHMRobert Egge, are there factors, in addition to diabetes, that can really help us identify who might be at risk for Alzheimer's?
EGGEThere are, and the greatest risk factor is age. So as we look at -- and that ties back into the point that has been made about not only the size of the epidemic today, more than 5 million Americans, but the fact that, because we have an aging population now, as the baby boomer's age, the numbers are going to rise and lock step with our population. And so we can look to as much as tripling by mid-century. That's why it is so urgent that we act now to get on top of this, not just for the burden today, but for where we're heading.
EGGEIn terms of risk factors, though, I think another point that Scott made that's really important is there's a lot we don't know right now. And so, fundamentally, we need to get on top of this, so we understand what the mechanisms are and can do something about it. And that's why all of this that we're talking about today really ties together. We need research so that we can provide better care, better guidance today, and we need, as well, the support that will make a difference immediately.
REHMDeborah Rubenstein, how do we know when someone is simply experiencing memory loss that's sort of normal with the aging process and when it moves into what we would call the disease process?
RUBENSTEINWell, I've heard sort of a shorthand that if somebody can remember they forgot, you don't need to be as worried. Of course, it's more complicated than that. When -- it's when memory loss interferes with functioning in some way that we begin to get concerned.
RUBENSTEINFor example, it's one thing to forget an occasional appointment. But if somebody is no longer remembering to go to their doctor at all, that might be a sign of a change.
REHMOr if someone is out driving and perhaps forgets where he or she is going?
RUBENSTEINYes. Driving is one of the biggest areas of concern. Many families come to us at Iona, specifically to consult with someone to say, what do I do? Because here's the challenge. When someone is showing signs of memory loss, what they really need is medical assessment. But often the person with memory loss finds it very difficult to even consider that possibility. Many families come to us to consult and say, how do I talk to mom or dad about getting to see a doctor for the assessment they need? How do I have that very difficult conversation about taking away the keys?
REHMScott Turner, it used to be that one could only know that an individual suffered from Alzheimer's through autopsy. That's no longer the case. Deborah talked about assessment. Tell me about assessment.
TURNERSo I would agree with that. Alzheimer's disease is very common, and I think we have a fairly good degree of accuracy, especially in specialty medical clinics, of making a diagnosis of Alzheimer's disease. With the other dementias, we have a little bit more trouble and are less accurate in our diagnosis. But given the history, the clinical examination, the diagnostic testing, I think we can make a fairly accurate assessment of Alzheimer's disease.
REHMGive me a general understanding of that assessment, how you go about it.
TURNEROK. So we bring in the patient and a knowledgeable caregiver. We take a separate history from the patient and the caregiver, which is often very discrepant as you might imagine. And we hear things like repeating questions, forgetting conversations, forgetting things in general, having difficulty with complex activities of daily livings, such as driving and shopping and handling financial affairs and handling daily medications. And this is sort of the typical clinical scenario that we would find. We then order a neuroimaging test, a CAT scan or MRI of the brain. We would...
REHMDoes something show up?
TURNERIt's -- this is mostly done to rule out other disorder, such as strokes or other lesions in the brain, and usually comes back with some atrophy and white matter changes, typically with an early Alzheimer's patient. And we also do our physical examination and memory assessment and putting all...
REHMHow does that go?
TURNERAnd we test memory in the clinic, memory, language, visuospatial, what are called executive or frontal functions of the brain, planning and foresight and reasoning. And we put all of this together and come up with a diagnosis. And so our diagnosis is often mild dementia due to Alzheimer's disease. Now, I have to recommend that people do come in for an evaluation. There's a lot of negativism out there in the community.
TURNERThe patient will often deny having problems, will say they're just senior moments and all of my friends are having senior moments. But when it begins to have an affect on function and daily life and you could see this pattern of decline from a previous level, then you begin to get concerned. And I would definitely seek an evaluation, starting with their own health care provider and then perhaps referral, if needed, that there is value in getting assessment and diagnosis and treatment.
REHMRobert Egge, is there a way to screen for Alzheimer's?
EGGEWell, that's a great question. And so what we emphasize is, really, you need to know the early warning signs of problems, what to look for. And so one of the great opportunities with the plan right now that's being discussed, that's on the table, is a nationwide awareness campaign -- we heard that referenced already -- to make people aware of when they should go have these conversations that we've just been talking about 'cause that leads to a diagnosis. And that's the foundation for good, effective care like we've provide today.
EGGEWe had 130 town hall sessions in late summer in support of this activity that's going on now and spoke to Americans across the country. One of the key things we heard is how important it is and what a missed opportunity it's often been to have early diagnosis that allows people to get the care and support that's already out there. So we see this as absolutely one of those near-term opportunities from an effective unified plan.
REHMMy concern is that there's really no treatment for Alzheimer's. And you can be diagnosed, you can get the care you need, but there's no treatment.
EGGEAnd that has to change, absolutely. That is a fundamental fact that we have to deal with, the fact that the leading cause of death today, Alzheimer's stands alone as the only one without a cure or a way to prevent or to slow its progression. That said, though, there are very, very important reasons today to get this detection to take place in a diagnosis, whether it's support, more accurate support from health care providers.
EGGESo, for instance, your diabetes that you might have at the same time could be managed more effectively. That's extremely important, so your hospitalization occurs more smoothly, but also the kinds of services that Deborah was referring to in the community, that you know where to get help. As a caregiver, also, you know what to expect and how to deal with these predictable crises that occur as Alzheimer's and other dementias unfold.
REHMDeborah, how do people come to you? What do they say? What are they asking for?
RUBENSTEINWell, every day, when our professionals answer our question-and-answers helpline, they are hearing people say things like -- often, it's something like, I'm concerned about my parent or my spouse. Maybe there is already a diagnosis, and I'm not sure what the next steps are. Where do I start? Because this isn't like cancer where there's a whole medical protocol. Instead, people need to start doing planning on a variety of fronts.
RUBENSTEINThey need to do critical, legal and financial planning. They need to think ahead about where they're living and where the person with memory loss is living and what's the best place that's going to be. They need to be educated about the wonderful range of services that are out there in the community. That, I think, is important. It's true that we don't have medical cures for this disease yet, and we need them. But there are many wonderful supports out there in the community, things like adult day programs, a part of the spectrum of care that lots of folks don't know about.
RUBENSTEINWe have a center like this at Iona, and they're all over the country, places where people with dementia can go and find community and support and the services they need. And their caregivers get valuable respite, often allowing people to stay at home for much longer than they otherwise would. So when we get calls, what we're trying to do is to let people know that our organization can provide the services that people need to stay in the community with quality of life.
REHMDeborah Rubenstein, director of consultation, care management and counseling for Iona Senior Services here in Washington, D.C. And you're listening to "The Diane Rehm Show." Scott Turner, I said there are no treatments for Alzheimer's. You disagree.
TURNERYes, I would disagree with that statement. Obviously, what we are looking for is better treatments and more effective treatments. And that is what the 2025 deadline for this plan was a very ambitious, but hopefully achievable goal. But when we do our evaluation in clinic, we look for other causes of memory problems, and this could be just thyroid disease or vitamin B12 deficiency, or perhaps mild depression and other causes.
TURNERSo -- and sometimes people are taking medications that could adversely affect their memory. So we screen for those things. And so there -- as I said, there is value in getting an evaluation and treatment and getting a correct diagnosis. And if it...
TURNER...if it is Alzheimer's disease...
TURNER...there are several safe and effective medications that are already FDA-approved, and we commonly prescribe these to patients with Alzheimer.
TURNERSuch as Aricept and Razadyne and Exelon and Namenda, which are prescribed and do have some benefit, but, obviously, we would like to have more effective medications.
REHMAnd from various doctors I've spoken with, Aricept, Namenda, others of these drugs, provide some help, but not a great deal.
EGGEThat's right. You know, it's -- so I agree with everything that's just been said. But it's symptomatic relief, which should not be minimized. That's important. And if that's a tool that works for a time, that's outstanding. But, of course, what everybody is hoping for is a way to stop this disease, and that's what we don't have. And that's what we really need to pursue aggressively.
REHMOnce it's diagnosed, is there any way to slow its progress?
TURNERThere currently is no known way to slow the progress at the moment. We have several treatment strategies in the pipeline. These are called immunotherapies for Alzheimer's disease. We are hopeful that these are targeting amyloid and will -- this may perhaps slow down the progression of the disease. There's some slight benefit currently from the medications that are now available, but these are more, as we call, symptomatic treatments and not disease-modifying treatments.
REHMSo what is available is help for that person in the way of stimulation. Iona Services provides various kinds of classes, activities, that sort of thing, to try to stimulate the activity in the brain.
RUBENSTEINYeah. The right environment is a critical treatment and support for someone with memory problems of any kind. In addition, a key piece is the support that they're going to need to compensate for their inability to do things -- like Dr. Turner mentioned -- like manage their own medications. So what Iona and other organizations are often looking at is helping caregivers locate needed services such as help in the home so that the caregiver isn't on the job 24 hours a day, which no caregiver can do.
REHMWhat would it take to develop a cure for Alzheimer's, Robert Egge?
EGGEWell, I think there's a few different ways to answer that, and I won't try to answer from a scientific perspective. I'll tell you at the Alzheimer's Association, we're working on that question right now in terms of talking to experts like Dr. Turner about what is needed. But I'll answer from a different perspective, which is to say sort of what kind of commitment do we need to research?
EGGEWe know -- it's already been mentioned -- that when we have invested in other diseases that have been mentioned like cancer, like HIV/AIDS, we have made a difference. We have developed those therapies. I think we all agree right now, as we're looking at this problem together and the advisory council -- I was at the meeting yesterday -- it seems to be a shared sense that we need to do a lot more if we're going to hit that very appropriate goal, a real deadline by which we're going to change this disease.
REHMAnd do you believe that commitment is truly there?
EGGEYou know, I think we're going to -- I think there is a real wonderful opportunity that's been created by this administration, and we're really looking to see those next steps laid out.
REHMAll right. Robert Egge is with the Alzheimer's Association. When we come back, your calls, your comments.
REHMAnd we're back. It's time to open the phones, 800-433-8850. Let's go first to Andalusia, Ala. Good morning, Thomas. You're on the air.
THOMASThanks for the call, Diane.
THOMASSince Alzheimer's is so closely linked to diabetes, and, in some circles, Alzheimer's is even called diabetes of the brain, how can the government ethically consider a treatment plan for Alzheimer's and still subsidize the low-cost high-glycemic grains that cause diabetes?
REHMThat's really an interesting question, Robert Egge.
EGGEYeah. I think the question does point to the need for holistic approach to this. You know, one of the things that was mentioned earlier I want to go back to again in response to this question, which is that we really need to shore up our understanding of what's driving this. And then, I think, once we have those questions answered, there are going to be really rich policy implications from what we learn.
REHMAll right. To Norfolk, Va., good morning, Ian.
IANHello. How are you this morning?
REHMFine. Thank you, sir.
IANJust a couple of comments, a very, very brief story. I ran a business for a number of years. And my mother gave me a call and informed me that my father, who was the former chaplain of Westminster Canterbury, had been diagnosed with stage IV cancer. I immediately shut down the business, spent two years as a caregiver for him and watched him die. After he died, I realized I've been so ineffective and really did not know enough about giving proper care. It didn't matter what I was giving care for.
IANSo I started attending caregiver classes, a number of which are offered through Alzheimer's Association. And I discovered an unbelievable world of really very little knowledge and certainly, you know, very little knowledge with, you know, the vast population that we have. So I took a number of courses and then started teaching the course to assisted-living facilities and to home-based caregivers.
IANNow, one of the things I discovered was that, even though we're having a difficult time trying to keep up with the illness in terms of science, we are sociologically not prepared to deal with many issues that caregivers have, i.e. anger issues, the ability to recognize when it's important to step back from a problem. And many of our caregivers aren't educated enough to be able to handle these. I took an anger management course, which I found has been fantastic in the teaching.
RUBENSTEINI think these are some excellent points. I've said it before. No caregiver should go through this experience alone. These strong emotional reactions are normal. There's nothing wrong with you as a caregiver if you are experiencing strong feelings, but you need help dealing with them. He's absolutely right. Part of this is education, everything from how do you most effectively communicate as a caregiver with the person you're caring for, to dealing with your own feelings. And you must get support.
RUBENSTEINI am a big believer in caregiver support groups, which are places where people can share their experiences and get both practical help and emotional help from others. That's something that Iona and organizations throughout the Senior Service Network and the Alzheimer's Network use, and people should take advantage of them.
REHMThanks for calling, Ian. To Indianapolis, good morning, Chris.
CHRISGood morning, Diane. How are you doing?
CHRISGreat show, great show, you guys. My mom has Alzheimer's. It kind of crept up on her real quick. I mean, my mom is the epitome of a person that you wouldn't think that would get Alzheimer's. She exercised. She ate right. You know, she could quote the Bible back and forth, upside down and all of that. But it came on her in a rapid pace. And we need to speed up our research on this, too, you guys. I mean, I'm going on 56 years old, and us baby boomers are getting right to that edge.
CHRISAnd this has been around for quite a while now. I mean, it's not like Alzheimer's just snuck up on us. I know we try to hide it and say, you know, it's just, oh, you know, the I'm just getting old. I'm starting to forget, yada, yada, yada. That's not the point. I look -- like the doctor there said -- I think there was a doctor that said about a holistic approach to this. You know, we need to -- it's in our -- to me, I think it's in our diet. It's in our environment. It's, you know -- because this just -- I mean, this is just captivating, and it kills you. I mean, it just doesn't impinge you. It kills you.
REHMThat's a very passionate and understandable statement, Robert Egge.
EGGEThat's right. And, you know, you bring up a few different points there. One is about research. We think about that as always, you know, in the labs with the test tubes in terms of our imagination. There are important areas of research that are contemplated by this plan that deal with how do you provide support as well. How do we rigorously evaluate the best ways to support caregivers? That's a very important theme in this research.
EGGEBut I also -- you know, one thing I was struck by with that comment was I think he captures a real growing sense in America that Alzheimer's can't wait. This is the time to tackle this disease. As I look at sort of what the baby boomers have tackled as they've aged, a number of diseases have been focused on and dealt with. I think we're really sensing right now that there's a growing consensus that this is a disease, you know, we've put off too long in taking on.
REHMI think Chris, like many children of those with Alzheimer's, is also worried about himself and whether there might be a genetic factor, Dr. Turner.
TURNERYeah. The major risk factors are getting older, which is aging and also family history or genetics.
TURNERThere is one gene that is linked to Alzheimer's disease which is the APOE4 gene. And I would encourage people to find out about clinical research opportunities that are available right now. If we are to make progress in this disease, we really need more volunteers.
REHMTo do what?
TURNERTo join the clinical research study. One...
REHMBut what does that mean?
TURNERSo one of them is called ADNI, the Alzheimer's Disease Neuroimaging Initiative, and this is looking to discover biomarkers, new biomarkers of Alzheimer's disease such as PET scans and proteins in cerebrospinal fluid. This study is across the country and is recruiting right now at many places. In Washington, D.C., we're recruiting at Georgetown and Howard universities. And this study is begging for patients and volunteers to join by -- to join the fight to discover new biomarkers.
REHMBut help me to understand what those volunteers would be subjected to.
TURNERSo they would be subjected to history and clinical examinations and MRI, PET scans, spinal fluid collection.
REHMThat's the part that bothers me, really. I mean, how many volunteers are going to be up for spinal fluid collection?
TURNERWell, there are many who actually do volunteer. And it is like going to the dentist. It's just a little bit unpleasant, but it's possible. And -- but we certainly need more volunteers if we're going to make progress.
EGGEYeah. That's what the -- we hear a lot is, you know, if you're dealing with this disease, you want to fight back and do something about it. And there are great opportunities to do so across the spectrum. One is just what Scott was laying out in terms of volunteering. At alz.org, there's a program called Trial Match. Wherever you are in the country, you can look there and see what opportunities are local for you to participate in these kinds of trials.
REHMAll right. Thanks for calling, Chris. Let's go to Linda. She's in Potomac, Md. Good morning to you.
LINDAHi. Good morning, Diane. I've been taking care of my mother now for nine years. And she doesn't have Alzheimer's. She has vascular dementia. And something that hasn't been mentioned yet, there's -- we've talked about the cost, the investment in research dollars, but the cost to the economy in terms of economic loss is enormous. I was a senior vice president on Wall Street. I had to give up everything to take care of my mother.
LINDAAnd, thankfully, my husband has an income that can support us right now. But I don't know how other people can do it. Every other day, I have to go to the nursing home and take care of her just to save cost to me because we're running out of money. And every month, you steal from Peter to pay Paul when the bills come in. And it is an unbelievable cost and burden. I haven't been on vacation in years.
LINDAEvery day -- every hour of every day I spend thinking about how am I going to manage my mother, and my mother-in-law is 91. And it's just -- it's this tsunami coming down. And I think one number that is missing in this conversation is the absolute cost to the economy of what it cost when I left the market -- when I left the job market and what it cost my family just in dollars and cents.
REHMLinda, my heart goes out to you. I think your call represents millions of other people. Robert Egge.
EGGEThat's right. She does represent millions of people. And there's two ways to look at this cost, and either way, the numbers are so big, it's almost hard to get your hands around them. In terms of what we know as sort of the formal cost when people actually write a check for it, whether it's a government or families, it's $183 billion today. And it's going to skyrocket in the years ahead as the cases skyrocket.
EGGEBut also, you know, there's this other issue that was raised, which is, what's the uncounted cost? And we've looked at that. Today there are 15 million unpaid caregivers in America who are working these demanding roles, often trying to hold down jobs because they must at the same time. They work 17 billion hours each year in this unpaid capacity. And if you put a price tag on that using the accepted ways to do so, that is also $202 billion per year in this unpaid sort of shadow cost.
EGGEAnd then you have the impacts that aren't even rolled in here, like productivity on the job when you've been up all night and you show up the next day and you can't concentrate on what you're doing. All of this is taking a toll on our country.
REHMYou know, there are lots of folks, and one of our callers is one who believe that there are environmental factors going on here. And that's part of what has some people referred to as this Silver Tsunami that's happening. What could these possible causes in our environment, in our way of living, in what we drink, what we eat? You know, we've talked about diabetes, but it seems to me there's something we're missing.
EGGEWell, you know, one way to get a handle on this, 'cause I think there are all these hypotheses, many of them, when they've been evaluated -- I am sure Scott has more to say about this.
REHMFor example, aluminum ware.
EGGEThat's right. That was one of the early ideas years ago, and it's the example of hypotheses that were tested and largely ruled out then in terms of a focus of research based on randomized controlled trials. What we need is an infrastructure for evaluating all these different ideas. Those are -- you know, Scott would tell us that the jargon is here a longitudinal trial, where you're tracking people over time and can start to see how they're living their lives, what the effects may be, and evaluating these different ideas.
EGGEThere was an evaluation done by the NIH, the National Institutes of Health, recently in Alzheimer's specifically. And what they concluded from this evaluation literature is there isn't much we can say now, but we need to answer these questions. And they have listed a range of the kinds of projects that we, as a country, should be investing in. And none of them are doing --are being done today at the scale that we required.
REHMIt's so interesting that HIV/AIDS was thought to be forever a killer disease and is now something that people live with chronically, thanks to drugs, thanks to various kinds of approaches. And yet all that's come out of Alzheimer's is Aricept or whatever else, but they're not really full treatments.
TURNERWell, I would say they are better than no treatment, but we certainly need...
REHMWell, and that's why I'm asking, with this huge population of people who are suffering from Alzheimer's, why hasn't there been more up to now?
TURNERI think one is that it's a more difficult target disease to treat. And also because HIV/AIDS has received much more funding -- research funding and has -- much more has been made in HIV compared to Alzheimer's disease. And so this program is a call for action, is a call for awareness, for increased funding levels, for making progress in this disease. And I think this is really sorely needed.
REHMHere's an email from Laura in Cincinnati -- and, by the way, you're listening to "The Diane Rehm Show." Laura in Cincinnati says, "Do your guests believe that family care as well as maintaining familiar surroundings for the patient staves off progressive movement of this dreadful disease?" Deborah.
RUBENSTEINWell, I know that many families, just as the caller from Potomac, Linda, make extraordinary efforts in part because that is their belief. And Dr. Turner could talk to the research of this, but I think just -- we observed that people in familiar surroundings, in association with the people that they love, certainly do better. And that's one of the reasons why these caregivers play such extraordinary effort into looking after the people that they love, even at great personal cost.
REHMI'm going to take one last quick call from Cathleen in Longview, Texas. Good morning to you.
CATHLEENGood morning. Thank you for taking my call. I am 54 years old. I was diagnosed with dementia at the age of 50. I would just like to call attention to the fact that absolutely nothing is being done for people like me who has no one to act as a caregiver for them.
EGGEYou know, I'm so glad we took this call. Today, for what's called younger-onset Alzheimer's disease, we estimate there are 200,000 Americans today who are below the age of 65 with Alzheimer's. This, in itself, would be a major disease, just this group.
REHMDo you think it's different from the aged people who developed dementia? Are these different diseases?
TURNERThey're really, very clinically, the same disease. It just happens to affect younger people. So these often come for re-evaluation, second and third opinions.
REHMDo they move more quickly when they're diagnosed at younger ages?
TURNERUsually not, unless they have one of the very rare familial mutations that cause Alzheimer's disease and these can move more quickly. But the typical younger age-onset moves at about the same speed.
REHMBut, you see, she has no children. She has no caregiver such as a spouse.
RUBENSTEINI think this raises an important policy issue. There is a senior service network throughout the country funded, in part, by the Older Americans Act that normally serves people 60 and over. We're seeing these younger people who need the kind of services that we offer in the senior service network. And we need to figure out how to make it available to them.
REHMCathleen in Longview, Texas, I hope you'll search that out and find some help for yourself. Thank you so much for sharing your story. And thanks to you, Robert Egge of the Alzheimer's Association, Deborah Rubenstein of Iona Senior Services and Dr. Scott Tuner of Georgetown University Medical Center. He is looking for volunteers. Thanks for listening, all. I'm Diane Rehm.
ANNOUNCER"The Diane Rehm Show" is produced by Sandra Pinkard, Nancy Robertson, Denise Couture, Monique Nazareth, Nikki Jecks, Susan Nabors and Lisa Dunn, and the engineer is Tobey Schreiner. A.C. Valdez answers the phones. Visit drshow.org for audio archives, transcripts, podcasts and CD sales. Call 202-885-1200 for more information. Our email address is firstname.lastname@example.org, and we're on Facebook and Twitter.
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