As we will talk about, many of those with alzheimers and dementia happened to be at the highest risk of covid19. To early thisback year as the pandemic was becoming known. The first cases in the u. S. Being identified in february. How did your organization brace for what was to come . We were watching the news about covid19 and thinking in operational terms. Ofhave a very large Group Advocates from around the country fly into washington, d. C. That takes place in march. We were looking at whether it was responsible for us as an organization to ask people to come in to washington for this event. In hindsight, it is a clear decision. At the time as we were watching these developments, the first cases identified in the u. S. , we were figuring this out by talking to Public Health authorities and other sources. It quickly became apparent that was not a good idea. One of the things we were learning quickly as we had the first cases in the u. S. And the , in washingtons state, in a longterm Care Community. We saw who was vulnerable. Not just does this impact our operations as it would impact people across the country, but a distinctive role for us to play in safeguarding those at highest risk. Lets see what your thoughts are on the comment of a viewer on twitter saying, it seems that Nursing Homes were caught sitting on their hands when the pandemic first began, did not take precautionary measures or were too busy counting their profits. They abdicated their responsibility to protect their vulnerable residents. What are your thoughts . Guest i dont see it that way. The way i see it is the world was caught on their hands. Its largely unproductive in those early months to look backwards. Across the board, we were scrambling to adapt to an unprecedented situation. This certainly hit Nursing Homes hard. The stories we have read about what his and folded in many of these what has unfolded in many of these communities is deeply disturbing. They are often deeply attached as workers as much as family or others. It has been a very difficult situation. These cases are unacceptable. Without pointing fingers, that does not change the fact that what is going on in these communities has to be a top priority. Some fats make this clear. Saw, we areent i trying to piece together with incomplete information what is going on. It was reported by the New York Times about a week ago. The basic facts are striking. Livethan 1 of americans in these kinds of settings. Longterm care nursing home settings. 10 of cases are people who are within the settings. West than 1 live there. 10 of cases. 43 of deaths are among this 1 nationwide. 43 of those who have died across the country have been among those less than 1 living in these communities. We are not talking enough about this issue. Our guest is robert eg ge. We welcome your calls and comments. We have broken the lines out by time zone. Eastern and central 202 7488000. And pacific 202 7488001. If you have had experience with alzheimers, you or a Family Member or friend, 202 7488002. Give us a definition on alzheimers, what that means, what it encompasses. Does that expand into other forms of dementia . Uset it is a term we often somewhat interchangeably. Havet 5 million americans alzheimers disease. It is a disease of the brain. There are other diseases of the brain that also cause dementia. Dementia is basically the symptoms of cognitive decline. When you cannot think the way you once did. Those are common presentations of it. Essentially that is what dementia is. Alzheimers is the largest cause of dementia. Dementia of cases of are caused by alzheimers disease. There are other important contributors. There are cardiovascular causes of dementia, strokes, for instance. Back to the issue of Nursing Homes. Why covid19 took a devastating homes, people in nursing what was the number one factor . Guest the number one factor, im tempted to cheat and say two of them. The number one factor is that Nursing Homes tend to have the most Vulnerable People susceptible to deaths from covid19 as a factor of their age and Underlying Health conditions. If i were disciplined and stick to just one, that is the one i would choose. Ast i lost you there for second. Finish up your thought. Guest i do want to cheat and say a second cause. The fact that the settings where these wonderful people are, we know this is a major cause. How likely are you to get exposed to covid19, and then what happens when you are exposed to this virus . That first part, how likely you are to be exposed, that is where a lot of problems came. You have People Better living very close together. Something we call congregant care settings. People are sharing rooms. People come in and out of these communities. The second part that i mentioned , once you have that exposure, how vulnerable you are because of your age and other health conditions. That combination has caused these terrible cases host . These terrible cases. Host from what you have seen, were most Nursing Homes prepared to deal with it . Guest i dont think so. Who was prepared . I have not met that person yet. That applies to Nursing Homes at the front lines. Hospitals at the front lines. Absolutely right there with them. The interplay between hospitals and Nursing Homes has been one of the toughest scenarios. Hospital, when to move them back into a nursing home. That is where we have seen some of the most difficult problems arise. Host you are the policy director for the Alzheimers Association. We have been talking this morning about the surge in cases across the country. Part of the recommendations for your organization was surge activation. As hotspots occur, they have to be dealt with quickly. If conditions warrant, strike teams will be employed by the facility to provide needed support until the outbreak is contained and eliminated. It looks like we are in one of those times where a surge is happening. What are you looking for across the country . Guest one of our principal recommendations is the ability to respond rapidly. Is that aental notion can be doing as they should. Nonetheless, it can be as that first case develops, what needs to happen even if it is a single case . We should treat it as a crisis. We should do everything we can to get on top of it. Nursing homes can have a lot of expertise within their facility. Some of them are quite good at this. Some are not. Regardless, they should be able to tap into outside support that can be rapidly deployed. Make sure that person receives the best of care, but is no risk to others, whether they be workers, residents, or others. We have people responding and providing outside support to supplement that nursing home as rapidly as possible. Host several congressional measures have been passed into law. Has enough been done . Enough Financial Support given to Nursing Homes across the country . Guest i dont think so yet. We are all figuring out what is needed. There is more that is needed. There have been important provisions in each package so far. Pending in the senate is the next major package. This idea of strike teams, having more funding to provide that. Some have been innovators. Some have shown they can be very powerful. Some have shown they can be complicated. That concept is going to be a key part of our solution. As a reminder, we have a special line for those of you who have experience with alzheimers or dementia, you personally, your family, a close friend. 202 7488002. First is steve in alabama. Stroke my mother had a almost two years ago. My sisters and i have been with her every day of the week for a year and eight months. We were all locked out. My complaint is the nursing home, they have a lot of patience. I can understand how they would want to do Everything Possible to save the lives of the patients, but they put everyone time theyat the same ,ave got all of their employees a tremendous number of employees in three shifts seven days a week, they are going in and out getting their temperature checked. They have had one test since this started. I have had one test since this started. Can i go in and see my mother . She still has her mind, but she is like a threeyearold. Looking through the glass and talking on the phone does not cut it because she cannot hear good enough. Every time she sees me or her outside, sheg cannot hear the phone. She gets frustrated. She starts crying. She always motions with her one good hand. She waves at us to come inside and visit with her. Host sorry to hear about that. Guest thank you for calling in. One person captured it poignantly, just like your called it. Call did. In some cases we are saving people from covid19 only to lose them to social isolation. We should all be deeply concerned for the reasons you outlined. It can be a health issue. When theyat people are isolated, especially those with dementia, can decline much more quickly and perhaps never recover. It is important that we are able to allow those in these settings to be together with their loved ones. We also have to be deeply concerned about protecting them. This dilemma is a terrible one. The way we put together recommendations hinges on this. The other way i think about it is every analogy has its problems. Basically, you want to protect homes almost like a walled castle. Out,u can keep the virus and the unknowns of who has it is how it comes in. Out,u can keep the virus that is a promise. You have many Vulnerable People you can protect together if you can keep them separated from the virus. When you do that, if you do it in a way that you just stop there, nobody wants to be inside of a walled castle, cut off. Especially if you cannot understand what is going on because of dementia. We have to do better than that. That is what leads us to emphasize the foundation for making this work beyond treatments and vaccines, which are critical, and we fully call for and support. We need testing. Not the kind of testing that gives you results a week later. We have testing that needs to be better at the point of care where you can get results rapidly within 15 minutes to an hour. This is the standard we need to reach so we can have visitors come once weers know that facility is free of infection so we dont have to stop people coming in. We are not ready to do that yet, but we have to be ready because that is what we need to be successful. Very important initiatives going on right now funded by congress, which we deeply appreciate the work that is going on to develop these kind of capabilities. That needs to be at every single longterm Care Community across the country. Frank,ets hear from arizona. Caller my mother, i have not been able to see her for months. Spike. She isbig in a special ward for these illnesses. Been able to see her through a window or anything. Taketherinlaw, we dont him anywhere because he likes to go to the stores because he is sick, and we are afraid of him getting covid. There is nothing we can do. It hurts for me not to be able to see my mother. I worry how she is doing. They dont tell you anything. How do you get information from her . Do you have to call the nurses . Do they give you regular updates . Caller my brother is the one who is power of attorney. He calls when he can. He will let us know how she is doing. They dont tell you too much. I want to see her face. She recognizes your face. She will stare at you. I miss my mom. Host what is your guidance for how families can better advocate for their parents, loved ones, in Nursing Homes, dementia awards, or otherwise . Im an advocate at heart. If i did notmiss say call your members of congress. Angrily,ot have to be but call them with the urgency of what is going on. Look them up on the internet. With your stop federal numbers. Tell numbers of congress how important this is. Then call your state representative. Reach out to your governors office. Policymakers need to hear from us right now. They want to know that americans need this to be a number one priority. That is my fundamental piece of advice. Many are approaching this in different ways. Im sure they know about your eagerness to see your loved one. They are in a difficult situation. There are some innovative approaches that work in some cases. An example of this would be one we are involved in, project vital with the state of florida. We have been working with them to provide tablets. Be some schedule when you cannot be there with that person, at least you can connect digitally. Depending on that present, that might or might not be the right solution. In many cases, it does. Be part of our solution even as we are looking for the fundamental solution so you can get in safely with your loved ones again. Egge,our guest, robert serves as the chief policy officer for the Alzheimers Association, heading the alzheimers study group, serving on the Hhs Task ForceAdvisory Council on alzheimers research. What connects you to alzheimers . Guest if i were to try to connect it in terms of this conversation, when i was in college, most of us have a story like this. Family provided care to our elderly grandmother. It turned out that the right place for her at the very end of residential in a setting that provided excellent righto her and was the environment for her as her dementia progressed. That left a real impression on me. Years later, working on health meicy, it became clear to the most was one of neglected crises facing our country, both what was happening then and now and where alzheimers was going. Already large numbers of people are dealing with alzheimers either directly or as a care provider, that number is set to increase in ways that are analogous to covid19 in a slowmotion but massive way. By 2050, the numbers of alzheimers could triple as baby boomers age. Facts that drew me into focusing on this as my passion to deal with this issue. Many of the things i have found interesting about covid19 connected to alzheimers, fundamentally what we need to do is we need a treatment, whether it is alzheimers or covid19. That is something we are not too good at doing as a country. We are not too good at seeing in the moment the wisdom of investing aggressively to avoid now and into the future. Alzheimers, we have a lot more to do, but we have had tremendous progress because of bipartisan support from congress that has quintupled support for ofheimers to the kind program that allows us to advance multiple Research Strategies to address this disease so we do not have to talk about it anymore. In the same way that congress is doing covid19 a massive influx of funding. About whatou talk you might describe as significant investments in alzheimers or covid19, it pales in comparison to what we are spending to deal with the consequences of it. Covid19, what we are spending, the best we can tell 100 of what we have already spent from the federal government to deal with this disease. We are still a fraction of what we are currently paying to deal with this, let alone the quality of life issues we are talking about. Host we will go to jasmine, texas. Caller thank you and good morning. Toquestion is in reference the poverty aspect. Im an advocate for the organ project oregon project. What could be the overall impact of covid19 on alzheimers Patients Living in poverty in developing countries . Guest that is an interesting question. An important question. I have not been focusing as much on these issues overseas. Up a little bit from an alzheimers and dementia perspective. We know that this is a massive problem in every country. Uteis especially ana c problem for societies where people have tended to live longer. Of lifeage age poorer countries is increasing, and as that happens in india and china and concerns causing great how those countries are going to provide care and support. Issue tied withn poverty. Most countries dont have the supports,rks of formal networks of support, Nursing Homes and others. I think it is a really good question that leads to an important area of focus that we need to be thinking about the in ourat alzheimers country has tremendous economic toll on families, whether that is because a caregiver decides it is time to put somebody into a residential setting, or they foreve the best solution their loved one is to keep them at home. That can be expensive in terms of someone leaving the workforce you their way, even in a will be country like ours, on average a wealthy country, even here, its a tremendous economic strain. Lets hear from karen in tulsa, oklahoma. Good morning. My husband is a vietnam veteran and he has been diagnosed with alzheimers for the last almost three years. He had been receiving a payment , but becauseystem of covid, since march, we have not been able to participate in that. I have some health issues, so i have not been able to do some of the things that he would receive in a daycare situation but im worried about putting him into a nursing home situation based on things that are going on, all the comments that have been made this morning. Right. , didnt mean to cut you off but it is a story that is happening nationwide. Recommend, where there is a right kind of program can be an adult day important part for someone living with dementia the best they can, finding experiences in those settings. We hear that quite often. Ande cut off from that, what that does to you as a caregiver, tending to your own needs, it is taught. Tough. I understand why they feel the need to cancel, bringing people like that together can not be saved, particularly for those individual to congregate like that, and then go back home to other settings. Understanding the reason why they did and why that is the right publichealth stance, but also understanding what a terrible burden that must be for you and for him as well not to have access to that program. It goes back to the things that we talked about. Your point is a great one also in terms of expanding this conversation beyond where it needs to focus on longterm care, but more generally, as people make choices to stay out of those settings, as you are considering that is one consequence. Thoser consequence is People Living in the community, lets see what the effects are of not living in a longterm setting. We have got to make sure that we are not neglecting this part of the story as well. Imagine,ally, i would for a case like yours, we have to accelerate things like vaccinations, better care, and testing. That is the only path forward that i can see right now for this. As i mentioned, the federal hearnment they need to people in congress appropriating funds. Im familiarhat with is the rapid acceleration of diagnostics for covid19. 1. 5 billion in funding several months ago. The whole point of this program is to make sure that we have, by september 1, access to those kinds of tests i described. Day setting. Ult you would hope you could go get tested, and if it is valid in to, in terms of sensitivity pick up the disease, you could drive around for a half hour, get the results on your smart phone, and then know if it is safe to bring your loved one. That is not science fiction. That could be just months off, and could change the story here, but it only happens with aggressive and disciplined investment involving the federal government with the private sector to make that happen. That is what we have to continue to urge congress to fund and support. Host some numbers from the Alzheimers Association, 5. 8 million americans aged 65 and older are living with alzheimers. It is the sixth leading cause of death in the u. S. Alzheimers and other dementias costing the u. S. 305 billion. Americans16 million provide unpaid care for those patients. Back to your calls, larry in indiana. Hi. Caller hello, robert. My name is larry. My mother passed away from progressive alzheimers. There are two kinds, progressive and slow. Comments. When i put my mother in a nursing home, she had a federal pension and medicare. The Nursing Homes got that. She had the title to her house. My son is a physician, he said, homen attorney, have the assigned over to you, and the car. When i went in to fill the paperwork out in the nursing home, you could see their jaw dropped when i said i had a title to the home and car. Some Nursing Homes are just in it for the money. Sometimes they have three people in one room. The further you go into the nursing home, you get the stench of urine. You can tell a good nursing home from a bad one, just by the smell. You known smell urine, it is a bad nursing home. I dont think they have enough registered nurses in these Nursing Homes. They have a lot of nursing aides with maybe a year or two of college, but if these Nursing Homes could pay a good salary for registered nurses, i think they would be better run. The state should have a strikeforce for accreditation, like hotels. A person can look online to find their best nursing home. Had progressive. It is a very simple test. I could not believe it when i was in the room, the doctor giving my mom the test. Not do host i will let you go there. Several ideas. Robert egge, your comments . I have heard people say, people are in it for the money. It is a tough place to make money. I dont know if that is necessarily the driver. Industry, aany variety of motivations by business owners. Would not expect this industry to be any different from that. But that said, a lot of people who choose to make this their career, they would be easier places to make money. It is a demanding setting to work in. And it is expensive. The cost of providing this kind between the workforce that is needed, all the different factors, it is pretty expensive. What is our believe as a country, how much should we prioritize this . Supportnt to have as a for those who cannot afford this and for many americans, it is life int to spend your a setting that you would like. It is expensive. Conversationnwide thats been happening that is long overdue. Whatever consensus we reach as a country, we need to reach it together. What sort of consequences are we willing to deal with based on that decision. And thank you for others saying that quicklyrs can progress in some people, slowly and others. That is true what you described. Once you are at the point of symptoms, there are some good tests that physicians can administer to get a pretty good sense of what is going on, when you reach that point. The other thing i want to policy on is more of a transparency. What isity to know going on in these residential settings, is an important one. The agency and the federal is the federal, agency that works with state agencies, totheir regulate Nursing Homes. They have started to have some steps to provide that same credentialing. Where you have to report and the public can look at it. I think we need to do more in that area, building on that foundational work. That is absolutely true with covid19. One thing that struck me early on, we are trying to piece and thesedata are human lives and we are talking about in terrible circumstances but the data of what is going on in certain homes, in some places, it is impossible to tell what is going on. I am in my home, just like everyone else in this area. I was told on my phone where my amazon package was. If we could have that kind of technology for a book coming my way and not be able to tell that in the same member who, across the country, whatever it may be, that is not a technology problem. That is a priority problem that we have not developed that yet. There is nothing technologically standing in our way to have that same kind of transparency. Right now in the state of virginia, where i live, the best we can tell, about 60 of the deaths in these states have been in longterm care settings. The last i checked, it was only reporting at the state level, not setting by setting. I dont think that is right. The stated reason for this was concerned about privacy. I am presuming other states are reporting at the facility level and have figured out how to do so. I dont hear that as a concern among families. It is not a solution itself, but it is important, and should be , and with that protection of privacy, we should have an expectation of what is going on in these facilities, in these communities and homes across the country. Host harold is in california. Good morning. Caller good morning. I have heard alzheimers is caused by plaque on the brain. If that is true, could the plaque be coming from the water with chloramines in the water andh contains ammonia, ammonia will not disappear until it goes into the ground and , canadato nitrates nitrates be turning into plaque . Host we will get a response from robert egge. Guest i would be in trouble if i went to far on this with my y scientific colleagues. I have not heard that one, personally. But there are some important points that i could tie to this. Increasing federal funding. We know quite a lot about alzheimers and other dementias but there are things that we dont know in the way that we need to to get the treatments that we need. Alzheimers is one of the top 10 causes of death today in the u. S. Some things that are encouraging and emerging. Bit at aarning quite a rapid pace about the things that we can do to slow alzheimers. Is we are seeing strong evidence emerging that simply controlling your Blood Pressure can help. That,re general point on maybe we cannot say with certainty yet the way that we would like to soon, and maybe funding from the federal government will allow us to, but there are some wise things that you could do right now out of concerns of alzheimers. One is working with your health care provider, doing the most physical activity that is safe for you, wherever you are in life. It is never too late. Whenwith your provider on you can do to be active. Even if you been diagnosed with alzheimers, there is reason to believe it can be helpful in that case, too. The second thing is diet. We need more authoritative evidence, but generally speaking, eating healthy is a good decision, if you are concerned about this. Making some good, solid decisions about that. I wont go further there, but that is a promising area where the Alzheimers Association is studying now to say more definitively about what is the right recipe. The right style of eating to help. Eating healthy is a good idea, cutting out sugars. You cannot go wrong. If not for alzheimers, we know that it attributes diabetes. The last thing is sleep. I know sometimes you cannot sleep the way that you would like to, but to the extent that you can be disciplined, sleep as best you can. Prioritize it. That seems to be an example of where the science is heading regarding dementia. Egge, chief Public Policy announcer coming up, a discussion on russia under vladimir putin. Love coverage at 1 00 p. M. On cspan. Today, there will be a 2021, thefiscal year appropriations bill, at 4 00 p. M. Eastern on cspan, online it cspan. Org, or listen live with the free radio app. More of your calls in a moment of the impact of the rising coronavirus cases in the country. Mountain and pacific, 202 . 488001 congress is out this week, several hearings going on. We will tell you more about that in a moment. The appropriations subcommittee meeting for the 2021 spending year. Later this week, the president will be going to new hampshire, a Campaign Rally set for portsmouth. With what isico