Welcome, Introduction, and Council Business
Okay. Good morning everybody thank you for coming to our, Advisory. Council on Alzheimer's research. Care and services. My. Name is Laura Gitlin and I, will, be chairing, today's very exciting, day and it's. Great to see everybody, back although I feel it's a little sparse we do have about five people on. Line we're. Gonna go around and introduce ourselves and, I'll ask each of the council members to indicate. Who they are and. What. Committees they work on I should say I am a non-federal. Member, and I am on the research and long-term care subcommittees. And I'll, start by going to my left. Jerry. Epstein liubao, a geriatric, psychiatrist. Non-federal. Member and the non-federal, chair, of the clinical care subcommittee. Good. Morning I'm Angela Taylor I am a, non-federal, member, I am the chair of the research subcommittee, and I'm with the Lewy body dementia Association. My father had LBD. Good. Morning I'm Cynthia huling, hummel a person living with Alzheimer's, disease and, I, am on all three, subcommittees. Richard. Hodes National Institute on Aging and research subcommittee. Good. Morning my name is Katie bran I'm a non-federal, member, I'm the, director, of caregiver, support, services, at the Massachusetts. General Hospital frontal. Temporal disorders, unit I'm a former FTD, caregiver, from my late husband and a current Alzheimer's, caregiver, for my dad. Good. Morning I'm a federal. Employee I'm from the National Science Foundation my name is Debra Ulster I'm on the federal, research subgroup. The. Morning I'm sure one day to China I'm on. The long term, services. And support, subcommittee. And I'm. A former. Caregiver for, my mom who had. Alzheimer's. And, a present, caregiver, for my son who, has Down syndrome. Good. Morning I'm Lisa McGuire and from the Centers for Disease Control and Prevention in Atlanta where, I read lead, the Alzheimer's, disease and healthy aging program and. I am on the long term services and support, and research subcommittees. And also. A caregiver, for my mother who has dementia. Robert. I eat chief public policy officer with the Alzheimer's Association and, serve on the three subcommittees. Good. Morning I'm Erin long I'm with the administration, for community living and I serve on the long term services and support subcommittee. Good. Morning I'm Deborah cherry I'm executive vice president at, Alzheimer's, Los Angeles, and I chair, I'm a non-federal, member, cherry the long term services and support, subcommittee, and I sit on the clinical care subcommittee. Good.
Morning I'm Arnie Owens, on the deputy assistant secretary in. The office, of the assistant secretary for planning and evaluation. Hi. Everyone I'm Helen Lamont I am also an Arnie's office and Aspie and. I am the designated federal officer I'm. A Fed and I work, closely with Laura. And. Welcome Arne so. We have some people on the phone and I'll call your name if you could introduce yourself Ellen. Hi. This is Ellen blackwell, I'm a senior, advisor in CMS's. Center for clinical standards and quality. Thank. You, Susan. Cooley, good. Morning I'm Susan Cooley I'm chief of dementia. Initiatives, at the, Department. Of Veterans Affairs in, the office of geriatrics and extended care I coordinate. The input, to all three of the federal, subgroups, and today, I'm also sitting in sort of we're sitting not, in, there but I'm covering. For dr. Mary Ann Shaughnessy, who is out. Sick today and she is. Representing. VA, as. A day as the designated. Federal member. Thank. You Susan ken can it get any louder or. Okay. Okay. We're having some difficulty hearing, everybody, online, we're. Gonna try again Bruce Finke. Good. Morning this man Bruce Finke I'm with the Indian Health Service and I, hope, to be with you all in person but had travel difficulties this morning, and will be joining unfortunately. My phone and. I'm, on the clinical. Care subcommittee, and the long-term services, and support, subcommittee. Thank. You Bruce Joan, Weiss. Good. Morning, I'm Joan Weiss I'm a senior advisor in the division of Medicine, and Dentistry at the health resources and Services, Administration. And the, agency, lead for geriatrics. Workforce, enhancement. And development. Program programming. And I, am one of the clinical, care subcommittee, and the long-term services, and support, subcommittee. Thank. You Thank. You Joan is anyone else on the line that we've missed. Yes. Alan levy. Ellen. Libby here. Hi. Ellen go, ahead, I'm. A non-federal, member, I am the, chairman, of the Department of Neurology at Emory University and director with the Emory Alzheimer's, Disease Research Center, and a practicing. Neurologist and, researcher, member. Of the research. And clinical care subcommittee. Thank. You anybody, else by phone. Okay. I'm gonna ask Brad if, you could introduce yourself I'm, Brad I mean I'm a neurologist up in Mass General a, non-federal, member, I'm, on the research committee. And. The. Clinical Care Committee and. I. Do. Work. In Alzheimer's, disease and also I'm a caregiver for my mother-in-law, great. Thank, you and welcome, everybody and we we have a, quite. A few people on the phone and we'll be, inferred, we'll be, calling on you to ask questions or, please, feel free to, email. Helen. If you wanted to make a comment and we didn't give, you a chance, so. We have a very exciting, agenda today primarily.
Prepared. By Gary, Epstein, LeBeau and the clinical care subcommittee, we're, going to start with a series of, updates and introductions. And then very. Quickly move, into the. Sessions, that are, structured, over three different sessions but, all. Looking. At implementing. Person-centered, planning. To support people living with cognitive symptoms so, I think we, will be very much enriched, by. These presentations. Which, will, affect. How we think about our, recommendations. As we move forward so. To, begin with we, have a series, of recommendations. And, I'll ask Helen to begin. By, talking about, the new, member slate okay. So you. All probably remember, that. We. Have four year. Four. Year overlapping terms, and so we have a group a cohort that is going to be rotating. Off this summer and we'll be soliciting. Nominations for, a new cohort I've, got a lot of interest and when we're going to be soliciting nominations and, that will be in late May, early June it, will be a Federal, Register notice, and if you don't happen to check the Federal Register we. Will also send a notice, out on the listserv so think. About who, would be good additions, to the council and, would would be willing to serve on it and. Look for that notice, if you have any questions, let. Me know and, then as a result of our, leadership. Rotating. Off we're going to be meeting new. Leaders for our new chair and new. Leaders for two. Subcommittees. For. Gary subcommittee clinical, care and for Angela subcommittee, research so, we're. Working right now to figure, out who should be the chairs and to make sure that we can have a mentoring, process and maybe. Have an opportunity to shadow during the July meeting and we, will be announcing, those at the July meeting so, stay, tuned for, that. And. I did want to just emphasize. Your. Last point in that is we want to have that July meeting as a transition. Time and. Use that as a smooth, way of moving, from one leadership, to the other. Hi. Becky good morning would you mind just introducing, nurse and herself we just went around the room and on the phone good. Morning my name is Becky Kurtz and I. Work. As the Area Agency on, Aging director. In metro, Atlanta nice. To be with you thank you thank you for being here. Okay. A couple, of other. Summaries. And. Announcements. We. Have, been developing an, executive, summary to go along with the 2018. Recommendations. We. Are a little bit, I guess we. Have an unusual timeline. This year, but. We will be on track next year and, I'm going to ask of Rob who's really taken the lead in, organizing, the. Executive, summary to summarize.
What's, In it and our, process, in deriving these. Executive. This executive summary, which is about a page, and a half and what, our plans are. Great. Thank you so thanks. To all the each. Subcommittee, for compiling, together, their summary, of the recommendations. In those different three different areas and, we. Have then, put. Them into similar language, I guess you could say and compiled and try to make it as concise as possible without losing important. Points as overall. Context, of course we pointed out that the. Recommendations, themselves that these are derived from our public domain in the best sense and all, are welcome to summarize as they see fit. Focus, on their specific areas where that be a state or a particular lens. That they're looking through that. Said, this executive summary, I'm, just gonna highlight a few points as from. Each to, give you a flavor for it in the. Area of research, in the, context, of climb for sustained. Commitment. Increases, in research funding. It. Also highlights, the following, one is the. Importance, of research, on the intersection, of care. And support, a, common, theme that we've talked about a lot. Second. Of all the, standardization, of terminology. Third. Clinical, trial recruitment, and. Fourth. Data. Sharing especially in the international context a as you can see I'm just giving. Quick. Phrases that. We link to past conversations. Second. In the area of clinical care, in. The context of calling for this to be a higher priority to address, those with Alzheimer's dementia and, related dementias, in the, US, healthcare system. Quick, points, are first of all improving. Clinical. Care service delivery, based. On scientific. Evidence of course, second. Educating. The public about early, detection and diagnosis. Also. Improving. The, work force that. Deals, with this community, and supports. Them in the health care system, third. Fourth. Excuse me encouraging. Value bette value-based, healthcare, models, and then. Support, for comprehensive, dementia, care programs, that, link the medical, system with, community, supportive, services, and also engage, caregivers, in this process, and then. The final. Long-term. Services, and supports, so. Again in that context, up pointing. Out the, importance, of this of the system in also. The cost of those. With. Alzheimer's. Disease and really dimensions, to the Medicare Medicaid, system excuse me, some. Highlights are first. Increasing. Funding, for ACLs. Alzheimer's, disease program, initiative, and the, National, Fair kamilly. Caregivers, support program I don't think I said the outset, but this is a recommendation of course from the non-federal members, second. Adapting. Education. And supports services to meet the needs of underserved populations. Third. Promoting. Innovative health care models to integrate again this theme that's so important clinical. And community based care and then. Finally, addressing behavioral. Symptoms. So. Important, for, those with. Alzheimer's, other, dementias and, training. Providers and family caregivers, to draw on these evidence-based. Interventions. So. This will be available for. All to draw and it's a great time in terms of Congress, as there. Are many new members and those returning, and studying agendas, to have this resource available to them as well. As the full underlying, recommendations. Sorry. Each of the the. Subcommittee. Chairs have reviewed, and as Rob said provided, some of you know the recommendations. And, Rob. Kindly. Edited, and put it together and this, we, have a few tweaks and then, we're going to be sending it out to the non-federal, members for, their use as you, as you.
All See fit in terms of working with in your own state and. Then, we will be considering, how we can get in front of Congress in different. Subcommittees. And so forth so, we'll. Have more announcements, about that sometime. In July yes. So. I understand. That this is a good time to get, an executive summary like this in front of the Senate, Appropriations Committee. And I just mentioned that I think we have a window. Of opening, for the non-federal members until, early. In June. Lorie, you'd also asked if I just have a quick is this the right time for a quick rundown okay, because, it Deborah. I couldn't agree more with your point there. So. Also. Laura. Had asked for just a quick take. On what's happening right now with 116th, Congress, which is now well. Underway and, coming. Back from recess and so, a few highlights along these lines, first. Of all as Deborah said we're, right already, in appropriation, season, the. House subcommittee. That. Deals with. Alzheimer's. Related issues fundamentally. Dementia, is. Going, to mark up their subcommittee. Bill on. Tuesday tomorrow, so. The, Alzheimer's, community I think every. Alzheimer's, or related dementia. Group that I'm aware of has, the. Same ask, of both the House and the Senate Appropriations, committees, there, may be some additional things, that different groups emphasize, but the core. Points. Of the community are increase, at 350, million dollars in research. For. Alzheimer's, or related dementias. At. The NIH and then, a twenty, million dollars the authorized amount in the bold infrastructure, for Alzheimer's act to, begin that work a, few. Other quick notes of legislation. That have been introduced, and there's always a dilemma. Here in terms of specificity how broad do you go guess broad bills can certainly, impact our community, but I'll just keep it a little bit narrow and do quick, mentions. One. Bill, is. Called the improving, hope Act it's a reference to the hope for Alzheimer's. Legislation. That, is essentially. Thanks. To CMS, now a Medicare. Benefit, and this, would focus on provider education so dovetails, well with the discussion, upcoming as, to. Other bills. I'd flag are related, to the critical, reauthorization. Of the older Americans, Act which is so important, in so many ways one. Of them is called, supporting. American America's. Caregivers, and Families Act which. Would increase the, resources available for, these critical programs another. One which, which, matches, this, council's, deliberations and, recommendations. Focuses. On younger onset and, extending. Those benefits, to those below the age of sixty a. Few, other quick notes that. Bill Paquita, that we've talked about which was in palliative and hospice care has been reintroduced the. Change Act which focuses, primarily on. Detection. And diagnosis. And having a supportive care system for that to happen has. Been reintroduced in, Congress. This year and, three. Other quick notes the supporting, American excuse, me to notes that. Also, relate a lot to the conversation, we have coming up one is a study, calls, for a study on the use of antipsychotics. And non, nursing, home settings, and then, finally, a geriatrics. Horse workforce, Improvement, Act there, are many other important, bills that, we know the groups support, but, those are some highlights that are, focused.
Specifically. On this community and or. Dovetail, really well with this discussion upcoming, and then, finally Laura's you mentioned will look for an opportunity with the new Congress and new members especially. You have a briefing, there's real strong receptivity, from, the house we're in conversations, with them about setting. This up at appropriate time in the next stretch, and one. Of the things we had look to do is to recap, where this Advisory, Council, has been interpretive, recommendations, a second. They'll be beneath, that you could say is an overall foundational, understanding, especially for new members and staff on on, what, this. Process is all about what. We're charged to do and things like the angling refresh strategic, plan. That's. Excellent thank you so much I, will. Open it up for questions but I actually, have a question for you Helen and I think the. Number. Of legislative, acts and where, they are in progress, could. Inform. The work of the subcommittee's, and I'm, wondering if we could have some kind of cheat sheet that, summarizes, what they are and, what. They intend to do and where they're at in. Terms of passage. At the house or the Senate and that that be shared with each of the subcommittee's, because. There may be ways of thinking through recommendations that, either augment. Strengthen. Build. Upon, or. Endorse. Do. You think that would be possible absolutely. Although Rob's. Staff, might be, better positioned, to pull those all together if you've already got them all. Together our, legislative, office, could also do it at HHS, but if you guys have already got it then that might be you know it's. About you Helen and if, that's the right way to do it yeah. I. Think that would be very very very helpful so yeah, great thank you any. Questions for Rob. Anybody. On the phone questions. Thank. You Rob going, to turn it over to a Debra who has an interesting announcement. That. She just learned about in the hallway. Legislative. Thank. You about. 34, percent of, people in Medicare, are and Medicare Advantage plans, and I was, just told and then had it confirmed in writing that. In the rate setting for 2020. The rates for Medicare, Advantage plans. Are going, to have annual capitation. At. A, higher, risk. For, people who are diagnosed, with dementia, and, this was set, in April, and is going into effect in July is. What I'm told though I don't understand when, T goes in effect in July, could be could be he meant January, but. But, this is a real opportunity, for, those. Of us who do work with Medicare Advantage plans, to, encourage them to do, earlier, identification. Of people with dementia. And actually, do something to support these members, so. It's good news. Good. News on a Monday money thank you, very. Good okay one. Other announcement, and, that is that the, as. You know the. March, there, was the summit. On Alzheimer's. Disease and Alzheimer's disease and related disorders and, a.
Rod Corriveau. Could not come today but, he will be here in July to give just a very high-level overview, of. What. The summit produced. And. Then he will be providing of course a milestone report. In in. November, and and, then in 2020. The, council will receive the full report with recommendations and. So forth but, rod will be here, next, time on the agenda for, a high-level overview of, some, of the recommendations. Okay. Okay. So. Okay. So, now we're gonna go on and talk a little bit about measuring. Progress, the. Intriguing, moonshot. Group and. A, little. Bit of where we're headed, okay. Okay. So if you recall at our last meeting we, talked about using this year to document, the progress that we've made since the inception of Napa in 2011. In. The process we discussed, was having the, agencies. And the folks who are working for, the federal government around the table, submit, some measures of the areas that they've seen a lot of progress and what an. Impact that Napa. Has had on their, programs so I sent out a call to our. Federal colleagues and, asked them to submit, what, different measures of progress they would like, to show. We've. Made. Progress on since 20:11, so. There's a few examples up here I've gotten a few more since I put this slide. Together, and. They, are closely, related to the programs that our, agency is run and I, think will show a great, increase since 2011. So, we discussed, the. Subcommittee's. With, the non feds and the feds providing. Feedback on, these. Measures. During, the May meetings. And. Then the agencies, would submit data for each of these measures, in in some, time in June, some, of them the data is easy to get some of them will take a little bit of time to get them but that we would have a draft progress, report for our July meeting to share with the Advisory Council and then to, be able to once, it was blessed put, out later, in the summer so we think this is a good process. The, feds, are certainly open to some feedback on the recommend, on the recommended measures, but. Keep in mind that they take some time and energy to get the data for so, we can't, get everything and. Yeah. I'm gonna go. Back just for one second to frame it in terms of where we started, last, year with the driver diagram, to. Map our recommendations.
On The, drivers, to. Determine, the best to, see where we were at basically, as, a way, also, to then move forward with recommendations and. From. That what, we. Concluded. Was. You know this the essential, question, of how do we evaluate what. We've been doing and the, progress and. There's a lot of progress in a lot of different areas it's, very difficult, to capture and. So I just wanted to say that the driver diagram drove, this and, here. We are thinking, about. You. Know high-level ways, of measuring to. Get some indication, that. We can move, forward in terms of our legislative, debriefings, even in terms of the progress of the work, of the committee I, think, also, this, may. Influence. Some of the subcommittee's. Discussions. In terms. Of recommendations. That. May, be for. Example providing. Some. Resources. For. Systematic. Evaluation, again. Along, the measures that are identified. By the federal, and non-federal members. Of the committee so, I just wanted to put, that that's a great point and I would encourage the subcommittee's. To look at the. Second. Or third column and the driver diagram but if you're looking in the plan it is at the strategy. Level so not the goal, level but the strategy you know insure a workforce, that has the education, and. Skills they need to provide care for example and, so, some, of these measures should line up with with, those. Strategies, and if they don't or if there are strategies that don't how many measures. That, might be a gap that we look at for next year. Okay. Okay. So. Okay. Sorry. Okay. So, in terms of the. Schedule. That we will be following the subcommittee's. Are going, to continue. To meet. Under. The current leadership in July we'll have that transition, and leadership, and. In July we will be, looking. At recommendations, again and voting on them the, thought is that the, subcommittee's, will be looking at the 2018, recommendations. Determining. Whether they remain, whether, they need to be tweaked whether. They should, be refined, or added, to then. As Helen. Indicated, we. Will also in July be looking at progress in terms of measures, and, we'll. Revisit the driver. Diagram again thanking. Bruce very much for introducing that concept and, this. Is again a working, tool so. The July meeting will be very very, very critical, and. Also, represent. This transition, phase okay. Any questions. Comments. Anybody. On the phone. You're, good, okay. Okay. So. I'm going to talk, a little bit now about our. Moonshot. Group. Which. Is, has. Caused some I think very positive, controversy. And, has enabled, us to take. A look, at where, we're going, what, we can achieve by 2025. Possibly. In just a different way than. We have before, so, the. 2025. Goal of, preventing. And treating Alzheimer's. Is a moonshot, in itself and. The purpose of this, subcommittee. Was. A tiny, bit different. Which I'll explain in a moment but let me just say that the moonshot, group, did. Meet, last. Week and. Participating. Was Cynthia, Lisa. Gary Angela. Katie Rob, Helen. And myself deborah, Becky, and sherry, and we, had a very robust, conversation. And we'll, continue. With. After. This meeting with another moonshot. Meeting. So, the, point, of this group was to think, through. Ways. That, we, could, build on existing, evidence. And. Actually. Make, it implementable. And scalable. And. Available, to. Individuals. With, living. With dementia, and, their family, caregivers and, the, idea is to think through particular. Approaches. And strategies. Grounded. In the evidence that. Are ambitious, but are absolutely. Attainable. And can, make a real difference so. We don't have real answers yet, I'm just going I'm just giving you a work if this is a work in progress, we. May in, the end change. The term from moonshot, to something else but, the concept. Of having a moonshot and something that's in our grasp I think really. Invigorated. Us to think very, differently. Possibly. Than before, and at, a more, concrete level, so some of our recommendations, are part, of a, moonshot, but then how do you realize, those recommendations, very, concretely, in order, to truly get at the moon we. Talked, about, framing. Moon. Moon, shots in terms of prevention, slowing. Progression, and improving, lives for people living with dementia and their caregivers and, without. Really, a, lot, of debate about these categories, our discussion, very. Much gravitated. To, improving. Lives, for, people living with dementia and their caregivers and. So we, had, what's called a brainstorming, session where. We throughout, a variety. Of you. Know a wide range of different ideas without. Judgment. If you will and, now what we will do is come back and look at each of those ideas and take, them apart and, figure.
Out The steps to get there so I'll give you a very concrete. Example. Of an. Idea, so actually. We had about, seven. Eight, eight eight, different. Potential, moon shots and they're not exactly unrelated. But. They, are. A little, distinct, but for example in our brainstorming. One area which, came from. The. Pre-work. Of the. Long-term. Care committee. Was. Moonshot. Could be taking. Promising, non pharmacological. Treatments, for behavioral, symptoms. To. Reduce antipsychotic. Use not, just in nursing homes but in other settings, in home and community-based, settings and so, if you think of that about this one area for example from, a moonshot, perspective. It's what, has to be in place and that involves. Many, of the recommendations, we already have but then how concretely, can we move it forward for example through workforce. Preparation, for. Example for changing, the, educational. Elements, within, our, medical, colleges, and nursing. And health professions. Educating. Existing. Health professionals. Possibly, changing. We're. Using Medicare Advantage. You. Know codes and looking, at payment mechanisms, and kind of putting together a strategy so. Again. We have about, eight, different. Types. Of moonshots. The. Notes, are still being prepared. And in. Our next session will, be picking. Those. That. Are. Really. Within shot, and. Then fleshing, out, the, different strategies, that get us there that, may in turn influence. Recommendations. Or. Definitely support, recommendations. And. Then we'll bring it back to the council in July as well and we'll, make a decision about how best to proceed this. Also, stimulated. The discussion, about. 2025. And what. Happens after that and I. Think that's a very important. Discussion. Point that. We. Felt. That we should begin to discuss, that next meeting. We're. Not prepared to talk about now but thinking, through what does that mean and again this is definitely, related, back to evaluation. Of where, we've been and what, needs to be achieved so.
July Is a good time to look at that because we will have some, understanding through, measures. Where. We've been where. We need to go and then, what, does that mean in terms of 2025, and what, potentially, would be a strategy to either, continue, something like, an advisory council or another. Another, form but we felt this group felt it really, imperative, to begin to think about life beyond, 2025. Yes. Comments. I. Think you just clarified, it but to add for, the clarification there. Had been some earlier, discussion, about a potential. Recommendation. To update the plan this year that might include some due diligence that the. Non-federal federal, members would do to put, forward a recommendation. To continue, past 2025 but we're deferring. That because there's plenty of time. And we'll, begin. That process and. Not look to recommendations this, year, that would be, specific. About a continuation. Could. A recommendation, be, to continue that discussion, do. You know so it's in the public record, that this, how this should be done so it might look. Do. You see what I'm saying oh so a recommendation. Is, that the council, have. Discussion. About. Measurement. About. What's, the, the impact, where, we've been and where we need to go and hence. What happens after 2025, epic so the recommendations do, you see what I mean is about the council's, work in that regard. All. Right so does. That make sense that. Was what I was hoping to clarify, because well there's there's to, craft, each of the recommend of the language, we, because, 2025, is several, years away we, could, allow. That language. To be crafted, next, year we don't necessarily, need to do it for the recommendations, this year. I'm. Recommending that, we have a recommendation. But. That's reconsideration, of the group, Laura. What would it take to to. Put that recommendation forward, I'd be happy to do that I think. That. It. Would be a discussion as part of the subcommittee, and then we'll bring it to the group in July, okay. And you're, on all three committees you, got, you're ready you know Thank. You Cindy. Okay. Any comments. Or questions. Okay. So. Again. I just wanted to say that this becomes. About, when you think of them of a moonshot, to end or moonshots it. Becomes again just another way to think about having impact, which is what we're all here for so very important. Okay. Anything. You would like to add home. Okay. Okay, oh. Okay. We're just trying to figure out we're a little early and. We want to make sure that we can move, on to our, main. Session. I'm just I want to check to see if. Gretchen. Al-khaimah and Jessica, briefer French are on the telephone line we've unmuted, it. Okay. In. That case we're. Going to take a short break of about, ten minutes and we'll reconvene at, ten of ten and. Then we'll, be ready to go with our our. Main topic. Thank. You. Produced. By the US Department, of Health and Human Services at, taxpayer, expense.
2019-05-09 02:33
