Why Alzheimer's Disease is a Public Health Crisis

PSA Programming
Saturday, June 23rd
On this week's episode of "Boston Community Affairs," Alex interviews Dan Zoto, the director of public policy for the Alzheimer's Association's Massachusetts chapter. With June being Alzheimer's and Brain Awareness month, Alex asks Dan about the latest work being done to improve Alzheimer's care, and why he considers the disease to be a public health crisis.

Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Good morning and welcome into another addition of busing community affairs and WEEI in my name is Alex streamer now June is alzheimer's in brain awareness month. I and as a result I wanted to spend at least one episode here looking out. Alzheimer's disease and raising awareness for it is well. Like many of you out there after personally affected by it and the grandfather. I was diagnosed alzheimer's and is out mid to late fifties. And that's pretty much value. He was static it was a diagnosed. In the late 1990s so Iowa is 67 years old when he was officially diagnosed in. I was really telling you heard the parity of my life. So. Like many I've been affected with this disease so I thought it would be good to raise awareness. Despite out. What I don't think a lot of people even have a great grass still of what it is. You know is it just normal part of aging now it is not and losses the incredible care costs in the Tola takes on people. I had the six leading cause of death the United States tells more than breast cancer. And patriotic cancers so either taught takes is incredible. On and T help but shed light on this I would welcome Monday and so on us he's director of public policy for the Alzheimer's Association it's Massachusetts. And New Hampshire chapter has since stand is the director public policy he primarily ricks the state governments here in Massachusetts and New Hampshire. Pitchers of passing legislation in regards alzheimer's disease. Big accomplishment of the Alzheimer association here is in 2012 they got a bill passed that mandated those who work interrogating facilities have to specific training. To care for alzheimer's disease. It's incredible that part it's when he talked that was not place. But now it is think's a great worked out at the end of the folks and the Alzheimer's Association. Have diets are good conversation at the end zone us that's coming up next three wrapping up its spots mean if there's a W yeah I miners actually X I was from us. And welcome back to Boston community affairs on the phone and right now we have Dan is so it's had a season director of public policy for Alzheimer's Association. The Massachusetts and New Hampshire and New Hampshire chapter Dan Harriet. I have well thanks for the opportunity. Not think a better state. Up on the line is that on a date which is a great fundraising. Opportunity that we all have a it goes and at the big public awareness. But what we do so excited beyond that. Yes in the Sussex things beats you on the line stadium because acted as the days get shorter which reads amount has already get out the shovels. So that's that's all water. So my first question is data we have a lot of ground to cover here but for those who don't know what kind of work teach you at the Alzheimer's Association. Short so I am the director of public all at the map which is entered chapter. And one of the big pillars of our organization and the work we do is. Interacting with government. You know using government as a tool a better. The millions of people we're dealing with alzheimer's and dementia and their families and caregivers. So. I won't really work is eight local governments as well are members of congress. Really helped move the eagle on policy implications. And on the federal level. Secret source alzheimer's disease research funding for the Nationalists is out. And died and how long you've been in this position. Thought it'd been two years in July Alex. And what's the big initiative that you've accomplished and are working on now. So hopefully we'll have a big accomplishment. I will I won't take credit for what done before it started here but I will say. Massachusetts has been a leader health care as we know. And the work he alzheimer's disease is actually down here in Massachusetts over the years it's really helped. A move that needle in terms of the quality care that we're here for folks living with alzheimer's and dementia. In the form of training I want sportsman officers'. Training and requirements for nursing homes and is it living facilities. About the a lot of ground work accomplished here Massachusetts as well as they all. The work I've been really focused on work our app for volunteers and am about focus on. For the past few years actually been pretty monumental piece of legislation calls now alzheimer's and dementia. Well 41 scene which unanimously at the Massachusetts House of Representatives. At the end of January. Right now trying to get the senate. And oh lead to governor acres. Yeah yeah and I will say out of it in the eat a lot built by. It's. Pretty landmark in terms of what it would accomplish an innovative though. We are really X. What Mo what would it accomplish since you brought it up. So right now in Massachusetts. And 48 states across the country their state all of our plan and that's really what. Government saying we need to do something about all of this is the public health crisis. In fact over five point seven million mayor and now of course one grew. Is here with my grandmother's so this is my job you know the impact. This is a personal level or so. We're really on the front lines what does the public health crisis on the state level so the first part of this bill really create the framework. To have accountable state alzheimer's plan. Through the Massachusetts legislature they actually have political leaders members of the community family and caregivers would sit on eight advisory council. Top vote on that. I'll inform policy forward that's just one part of the bill. The largest part of the bill that would really US workforce training preparing our clinicians specifically. Physicians registered nurses and TE two have training in the detection and diagnosis of all I've. And right now currently at the stands in the country. 60% of Americans all these are not there right now and of those now. Where I first place. Currently there's no requirement. For training and alzheimer's and dementia and the medical space so. As I said before Massachusetts has been a leader out here we could get that out I think we really set the stage for the country all soon. On state level you're really well changed that alarmingly low. And. Yeah half that's incredible and why is that. You know there's there's a number of read it. A public awareness growing back in terms of the and that is he's in a lot to say and what I bird. Abducted as well we're what 1960. When note. It's fairly sure. Something a lot harder to. You know show and demonstrate that but what we learned in the work week is that's really not that. Group public policy work. As well as their parents support within. The agent we know that there is hope for. There's airplane out there for people living with that we actually. App that bill congress that would mandate airplane through met there. So there's options the point. That we were really at different space right now as we they'll grab it short of the disease. Through research funding and privately. Well. Seen mentioned they're requirements very nursing home character is and in people who I give cared if folks and alzheimer's die in Massachusetts what are the requirements now. And what are you hoping to make them are hoping to improve on them I guess is the question. So absolutely the beltway. You know setting the stage long term care facilities where it's very important initiatives that the it has been working. Crop the country wrecked their workers. Open to improve their quality care. Currently I mentioned in a position our end it there is no requirement. That nine. Not at all well and. He says is absurd and you could work her nursing home where my grandfather. Disease and that's where he led to the final odd years in his life to live to us for years and years with on and a lot of people in the east in nursing facilities out. Alzheimer's or dementia as you tell me your work there and you're gonna care effort presumably at. Significant percentage of people have alzheimer's disease the you don't have to be traded in dollars training Jimmy airport at all. No start out so because of the work we've done you're due. Out and the match for the specific silly. But legislation. Speaking to earlier more generically for the action there is no require got you got you. Let's say you're aren't working under because of the bill we tapped the well you would you have previously didn't. You did not. That's incredible is pretty remark we need. You know like that I wanted it with my grandmother and luckily. We were right on the street and are so I grew up. Every day at school when we head over and with my grandmother and make sure that we're all it was a par. And if that's and that's the biggest. Challenging you're talking about Alzheimer disease IBC the research in is a whole separate and debate cited it really is about the care and they any in new incredible cost to it takes as well right. Yeah I mean Alex. Is. The biggest issue we're looking at here we actually the opposite is great I got back. Yesterday. We went down with it's. Folks from map which is it. Joining. 12100 other app. Across the country. Are all are out there are at war we call it. And we got down here or in search on national institute at L. And really the way we and eight important. Personally. But. The most expensive the need America. Alzheimer's disease. 787 or. Now. That's amazing and so how about Medicaid Medicare. Today cover costs for alzheimer's dementia. How does that work. Yep absolutely so it's obviously there right statement of course here in Massachusetts. Yeah I want. That certainly rabbit hole goes down but I will say we are eager now is that it's been. I'm map belt from the work that been done in this state. But on top of the work of the Alzheimer's Association and specifically our advocates. When we were Donald Washington DC yours prior we were fighting for a bill. It actually sponsored fire there on under Ed Markey called hope for alzheimer's. And this is a federal legislation. That ended up actually getting. After the senate Medicare Medicaid Services as a rules change up because the DC. In bad omen that district for the first time between seventeen. It went to bill Medicare. Professional they are planning services around all these that was never an option force or release shows the power of situated for it. Meeting with their members of congress and going to Washington DC equally important the cost implication that impact that it would be on their family. It completely change of policy. Integrity and soon as he is the director puck policy or the Alzheimer's Association here it's Massachusetts. A New Hampshire chapter I'd Dan on a similar note to be Affordable Care Act what impact house of on alzheimer's care and wider and what are the effects and it's feeling now given the truck administration's efforts to repeal portions of it. Sure app so. Obviously extremely important questions. I will note the Asian and our sister as they all have a impact movement. We're nonpartisan organization we work with all sides of the idol on important initiative. To be frank we're really concerned that a lot of the conversation. In the sort of all civility over the past year. We issue a number of statements around potential changes and obviously. Aggressively fight to ensure strong medic aid on the state level as well. On so. For the most part we felt. Okay we're definitely concerned and strongly concerned in nature we boys are Indians. I will say you'll see such success that we've done because it's been very focused. On our initiative on our priorities and state level. When we go down Washington DC what we're back here in the district but. It's definitely a notable. You to be about we watch it very closely. What specifically make the Affordable Care Act what's this what specifically did and offer. Not people I guess against him insurance but in addition what specifically does does the insurance cover with alzheimer's and dementia that may be wasn't. Offered previously prior to it being put in place. Yeah I mean that when you're at. It which is largely Medicaid expansion on the exact. If you're standing. Funding to states are looking at improving. On the availability of moment in the services which we know it's so important for oil was little dementia but more in there where it would get. The way we are able ship those are partners as well so obviously very supportive of having won in. Yes and down I kind of a larger ninety and we touched upon this a little bits you mention alzheimer's it's the sixth leading cause of death. A United States a surprise to read it think and European nations website kills more people than breast cancer and pancreatic cancer combined so my question would be. Why is the all time alzheimer's awareness why does that not seem to match the Tola takes on people in this country. A movement that really think that that was the city. You know that means that we seen on around cancer for example or HIV aids. There's that. It has been mentioned around alzheimer's and dementia. And specifically linked to policy. We have seen or historic years of alzheimer's research funding increases from congress. And that it was. That was thousands of don't know Washington DC. And actually advocating for a all he changed to look at. Professional judgment budget calls and not to get too wants you here but the reason I bring that stuff is there's only the recent eases some of what all the professional. Judgment budget. Which is that science it's but researchers at and I it's telling congress. This is what we need research. To get things done that would cancer HIV aids and then alzheimer's is the a reported fourteen. Right right that that's certainly answered needed thing deceit going I'm in that direction because you know I think I think there's some. Yeah there's some there's some myths about alzheimer's you know one thing I think a lot of people believed and it's totally affects all people. But I can tapers and it's not the case my grandfather's in his late fifties when he got to do so yeah so it is it's a waste of the reasons you think an Aussie or maybe some people are captain Derek do you like him alzheimer's dementia it's. Not really does a lot of people don't want to be out you know the public with that site and there'll number of factors as well. You know Alex you're absolutely right it's a lot of the work we do. Well is wasting public awareness of this is not normal part is actually ate the Jenner the plane did see. So. So important keep having a conversation. At eight. The work we've been doing now it's really re aiming inherited and the conversation out. This is essentially a public health crisis this is not just an aging. The big part of that work on it obviously as you mentioned and that statement issue of the crop support a lot of work in Massachusetts. Over the past year in the state budget on it actually. On underserved populations across the commonwealth specifically African American Latino. We're up to two times more likely to develop all. Why is. You know that the number of reasons Alex you can look at a lot of research. That's been done it in the days right now you're looking like so. Obviously socioeconomic issues I it. Exercised better so I don't think I put my son specifically on one. Aspect but we see that a lot of it was a disease in film as well. Actually goes to the next senate questions on that topic you about who do we know anything about it's. Lifestyle diet how and you've got contributes to alzheimer's it seems like we do is you just referenced it. Yeah out and I'll do you know my my focus my expertise is really in the political the year end all be on and the nature network where. Quite a bit. We you're just in Washington DC we actually heard from. Doctor Francis Collins head up the alzheimer's where the national institutes of hell. And I say not. Feel more comfortable. Now in terms of his expertise and a lot of the conversation. That was going on L lifestyle choices. And the impact an incident dementia. There was actually study. That was released better annual research conference at each year at your it was one. And because of association funded study. We've got 33% reduction in alzheimer's within that group by its hearing to strictly Mediterranean diet. That we should show. The impact of white dial what eating. Physical activity strapped another big thing now you mentioned conduct differences on indeed he would week. So this shows. You know obviously on the political side seeking a Q or. The more. Direct level with them what happened at the pathology in the blame but also lifestyle choices are really get to. What I was mentioning before as alzheimer's disease that they public health crisis and you can probably blame. That merited like what it has been done with smoking. Yeah well sleep and stress and spurred them on how. Is a hereditary. Do you hear that is well. Yet there are there is hereditary links as well I would you know I can't beat that app and I would probably say that conversation directly for. Some researchers then neurology at the deal right. So in general and now they year you will go with circle back to politics records at the interview by so generally what is. The age drained three should start looking for signs of alzheimer's dementia because as I mentioned there's a perception out there. Oh it's a sold people but like we've discussed isn't just old people. Yeah you know I went and offered to give you specific you need a very good point out that this is not just the disease of old people we know. The pathology of alzheimer's disease can start you know demonstrating. Very early on in life and really showed so much later potentially so. Not suggested that the actual research funding but it's important to note that while we continue to strive for a cure. And protect. Preventative treatment on the research front. That's really all the work that elements of bio mark is right now be able to attack. The incidence of plaques and tangles in the plane at a earlier age though there are more susceptible alt. So. So important that we keep on search and get them being able to hack. Incidents that likelihood of the bell. Is there. As you mentioned it's a bipartisan effort we see that research spending increasing. I mentioned your grandmother. A couple times in this interview how did you experience. Giving care to hurt. Which he had the disease that I did that influence your decision to be involved at the Alzheimer's Association today. Not Alex I appreciate. The question my grandmother huge inspiration to me oh my grandmother my grandfather emigrated from Albania. In the 1930s. As she was always. An inspiration to me super in the politics so I am I grew up with that important and it was stopped it says in the early to mid 2000. Really translated caregiver. It's where it into the house sold it to be able. Help her out eventually moved earth watch their ability. I. As I mentioned before pretty much everyday after school I got picked up there and I'm currently nursing homes so. I was feeling a lot of consulting work up a New Hampshire. Number of years ago closely aligned seeing all of the works. The alzheimer's strokes are dealing and it really got me energized. But you know what I want more I went went all in a couple years ago absolutely over for a while this job every day's new adventure. Everyday look different and it's really the people that you get so worked with the app is the volunteers. And the families that really gets you up in the morning go in that really. The city. And you mentioned dies in this city has passed in 2012 about the requirements what do those where it's requirements look like appeared caregiver wants stored in a nursing facility. What what what kind of additional training do you. Have to undergo in order to be certified to care efforts people with the disease. Short so that's what it. A number of requirements that worked Opel legislatively. And then on the side. But the way it's spelled out now the chief suspect that some of them more stringent requirements which you get it. It eight hours. Training initially and then four hours on. And the link step back to the current bill you know you're really seeing a dynamic approach where across the board we are. Helping educate physicians aren't isn't I'll see him as well. And I will if you don't mind that the in the 01 really important part though mr. We've been working with the hospitals in Massachusetts. And there's a mandate in the bill for all obstacles that operational plan in place. We're dealing with folks and alzheimer's and dementia. We know just because of how difficult these diseases and dementia is hospitals are inherently chaotic systems are just not as well prepared to deal folks. So it's on a personal level very stressful and hectic for them. It's also big cop measure are well you know. The readmission rate there's someone with alzheimer's or dementia. In Massachusetts a 22 point 5% remission rate. Make you are in a thirty day period I'm on the ball should sell big cost saving measure. And also so stressful. Are all namely being an app and fired there's not proper training and proceed and play. That is then eight concerted effort with the department of public health. Was awful but crop the commonwealth of really been great working on the initiative so we're excited that goes. Now what those rather disease who don't have immediate family members or don't have. Close friends happens to them. Well that's. You know a lot of the work my friend as the association's it was well I know that's such a top piece there's is that he's really does take a village. In terms of dealing with it and that journey so. In other options out there in terms as. Since we call the Alzheimer's Association at 8247. Outline. How people work there is some of those most typical moment as well as. Chair consultation. And getting folks pointed in the right direction for where they can achieve help. As credits say again Dan's got us he's director polar policy for the Alzheimer's Association the Massachusetts in New Hampshire chapter sedan it is end of June right now. British circle back with you at the end of the year what is the one thing that you'd like to see accomplished before 2018 is out. Go out I'm going to be totally frank mentioned the map alzheimer's and dementia act. We have about thirty days wrap up there at this bill is currently in Massachusetts State Senate. I would love folks that call their senator it's still party app but it's currently in the state senate. Essentially we need folks to call their senators and they've that is important mean at least been impacted. On that you please app is legislation. Why is it still hung up in the sun. I'll say that the number of reasons there's a lot on the agenda right now before formal session and at the end of July. I know there is also is some turbulence within that body earlier in the year. And things up as well as we now so. The good news is we're hearing really good thing out of the building right now at a big rally that made it. Most of 350 advocates in the state house talking about this bill and sharing their personal stories which is one of the most important thing you can do. The Indians notice director Pollack possibly Alzheimer's Association Massachusetts and New Hampshire chapter Dan picture coming on. Austrian affairs necessary appreciated thanks or thanks again. How much. Thanks again go out today and sodas he's the director of public policy for the Alzheimer's Association. Massachusetts and New Hampshire chapter anchor coming on the show this week acting got an interesting in wide ranging conversation. I and you know keep going back to it one of the main takeaways I had from that interview. Is a carry giving cost just how astronomical it is in how many different facets there are two. I was reading nests on the Alzheimer's Association website. Sixteen point one million Americans provide unpaid care for people with alzheimer's or dementia they provide elicited as. Eighteen point four billion hours of care that's valued at 232. Billion. Dollars so when you talk about the cost alzheimer's these teeny talk about those who who it affects. Retouched like with those who get not just like health care costs were talking about the cost for the people the family members the friends who are also providing care. For people with this disease. They're providing eighteen point four billion hours of that's a lot of time that is eighteen point four billion hours that they're not spending at work trying to make a living. So what happens to now. What assistance that make it's and that's why I think Dan I never thought of it in this way by. He's vastly right when he says this is a public health crisis. And what makes it different in cancer and other fatal diseases is that. Those who are reflective balls divers can not think for themselves they cannot help themselves they cannot manage its they have to have somebody with them. At all times and somebody with them who. Ideally is specialized alzheimer's care specialize in dementia care but as we now in every state there aren't requirements. I members in need friends of course aren't certified either so it's just. It's a mess it's a mess it's a mess and Manning Dan is absolutely right to college. A public health crisis. I and I think a big. And I think a big big hurdle in terms of guys getting more alzheimer's awareness is to eliminate the statement eliminate the state. Eliminates them and it's this is not just capital people. It happens any. Act anatomy is opposite 50% of people with the disease and even get diagnosed. You believe that you measure that says of people with the lead with breast cancer pancreatic cancer ticket diagnosed unbelievable. And the dark ages. When 2018. Midway through 2018. And we still at 50% of people with alzheimer's and dementia don't even get diagnosed. So how can you attempt to find a cure for disease rep to people habits don't even know they. It's it's unbelievable to think about. All the medical advances in this country and Dan reference there have been a lot of accomplishments all the terms of research Richards of care legislation which is stand there and expertise. But still ways to. So it is now alzheimer's a brain awareness month that it would be appropriate to dedicate an episode of the show to the disease. And it takes Danza is for coming on and as always if you have a topic you want to hear me address on the program. Alex are at WEEI dot com is my email in box is opened to from listening have a great rest of your weekend what tacky next Saturday morning and Austin community of.