Public Comment Index for the National Alzheimer's Project Act . 2014 Comments

11/20/2017

2014 Public Comments

 


 

DECEMBER 2014 COMMENTS

E. Long  |  12-04-2014

Attached, please find Anthem's comments to the Advisory Council on Alzheimer's Research, Care, and Services. Anthem appreciates the opportunity to submit comments to the Advisory Council on Alzheimer's Research, Care, and Services. We share the Council's goals to improve health outcomes, enhance quality care, and meet the needs of individuals, their families, and caregivers who are facing Alzheimer's Disease or Related Dementias (ADRD). We look forward to working with each of you and showing how Anthem can help improve the lives of those living with Alzheimers. Please see our expanded comments detailing our work in this area.

ATTACHMENT:

Anthem appreciates the opportunity to submit comments to the Advisory Council on Alzheimer's Research, Care, and Services. We share the Council's goals to improve health outcomes, enhance quality care, and meet the needs of individuals, their families, and caregivers who are facing Alzheimer's Disease or Related Dementias (ADRD).

Anthem is working to transform health care with trusted and caring solutions. Our health plan companies deliver quality products and services that give their members access to the care they need. With nearly 67 million people served by its affiliated companies, including nearly 37 million enrolled in its family of health plans, Anthem is one of nation's leading health benefits companies. Anthem companies serve members as the Blue Cross licensee for California; and as the Blue Cross and Blue Shield licensees for Colorado, Connecticut, Georgia, Indiana, Kentucky, Maine, Missouri (excluding 30 counties in the Kansas City area), Nevada, New Hampshire, New York (as the Blue Cross Blue Shield licensee in 10 New York City metropolitan and surrounding counties and as the Blue Cross or Blue Cross Blue Shield licensee in selected upstate counties only), Ohio, Virginia (excluding the Northern Virginia suburbs of Washington, D.C.), and Wisconsin. In most of these service areas, Anthem does business as Anthem Blue Cross, Anthem Blue Cross and Blue Shield, Blue Cross and Blue Shield of Georgia and Empire Blue Cross Blue Shield, or Empire Blue Cross (in the New York service areas). It also serves customers in other states through its Amerigroup, CareMore and UniCare subsidiaries. To find out more about Anthem, go to AnthemInc.com.

Though important work continues on prevention of ADRD, we believe it is vitally important to address necessary systematic improvements in health care quality for individuals living with ADRD. As you are acutely aware, ADRD and the effects of these diseases can be devastating for individuals, as well as their families and caregivers. Over 5.2 million Americans of all ages have Alzheimer's disease, including 5 million individuals age 65 and older and 200,000 individuals under age 65.1 Additionally, it is estimated that 13.9 percent of individuals age 71 and older have dementia.2 Individuals with ADRD are also more likely to have other chronic conditions, such as chronic kidney disease, congestive heart failure, or chronic obstructive pulmonary disease and these individuals are more likely to be hospitalized when compared to those without ADRD3. With an aging population and estimates that 13.8 million individuals or more will have Alzheimer's by 2050, barring medical breakthroughs, there is an urgent need to find a better solution to improve the quality of life for individuals affected by ADRD.4

CareMore Health System, an Anthem subsidiary that operates Medicare Advantage plans, including Medicare Advantage Special Needs Plans (SNPs), provides proactive and innovative solutions to the complex issues associated with aging and chronic conditions, including ADRD. To address fragmented care and to ensure individuals with ADRD are receiving optimal care at the right time, CareMore developed and implemented a Brain Health Pilot Program (Brain Health Program).

CareMore's specialized Brain Health Program is holistically centered on each individual member and excels by simplifying access to quality care, increasing communication, and providing a high-touch, timeintensive process of care. A multidisciplinary team consisting of a primary care provider, social worker, nutritionist, neurologist, neuropsychologist, pharmacist, education specialist, care manager, and other specialized ADRD caregivers work together to ensure care is appropriately tailored to each individual member.

Our ultimate goal is to increase each member's quality of life. To achieve this, the Brain Health Program focused on the following objectives:

  • Reduction of unnecessary hospitalizations
  • Reduction of falls and accidents, with an increase in overall safety
  • Reduction of medication errors
  • Optimization of medications across all chronic conditions
  • Increased treatment adherence
  • Increased coordination of care
  • Increased member, family, and caregiver satisfaction

The impact of CareMore's Brain Health Program has been striking. Over the course of a six-month screening period, we were able to significantly impact health outcomes leading to improved quality of care, while also supporting families and caregivers. Specifically, our care model resulted in:

  • 100% reduction in unnecessary emergency department (ED) visits and hospitalizations due to Behavioral and Psychiatric Systems of Dementia.
  • Significant reduction in falls. Prior to joining the Brain Health Program, 71% of participants had a documented fall, with 40% requiring an ED visit. Throughout the Brain Health Program falls were reduced, with only 14% experiencing a fall. Notably, none required a medical visit. CareMore was able to impact and reduce falls through a comprehensive program, including: home safety evaluations which helps families identify even hidden dangers; increased education; regular visits with a social worker; a complete pharmacy review to identify any drug interactions; a dietary review with a registered dietician to ensure optimal nutrition; and regular meetings with care staff to provide continuing support.
  • More caregivers began taking an active role in medication monitoring. We saw a trend where individuals with dementia were allowed to manage their own medications. Through education, we were able to impact medication safety, with 76% of caregivers stating they had an increased understanding of safety issues.
  • 67% of caregivers made changes to increase safety. We work with members, families, and caregivers to provide education and training about home safety, social safety, and public safety. We also connect members to the Alzheimer's Association and other community-based programs.
  • 68% of members in the Brain Health Program made dietary and hydration changes. Members with ADRD experience changing tastes, and proper hydration needs to be watched closely. We work with registered dieticians to provide education and to assist the member as their tastes change. Additionally, the ability to chew food declines as disease progresses. Chewing evaluations are completed to take into account food-related choking hazards.
  • 100% reduction in emergency department visits for urinary tract infection (UTI). Prior to joining the Brain Health Program, 19% of participants had a history of UTI, with 5% visiting an ED. This is often due to reduced hydration. We were able to impact proper care management and help support families and caregivers through nutritional education and dietary assistance.
  • 94% reported the Brain Health Program improved their understanding of ADRD.
  • 94% of caregivers stated they feel satisfied and supported, and are better caregivers since participating in the Brain Health Program.

By providing high-touch care management and social support, we were also able to help primary care providers, hospitals, and EDs see more patients in the right setting, as shown by the reduction in unnecessary and preventable visits. We also believe that premature placement in skilled nursing facilities will be prevented.

CareMore's Brain Health Program has made a significant difference in the lives of our members and their families and caregivers. However, these innovations are not widely available as Medicare doesn't properly identify or reimburse for ADRD care.

Medicare SNPs are able to limit membership to individuals with specific diseases or chronic conditions, allowing SNPs to provide effective, specialized, and innovative care. SNPs provide all Medicare benefits, while offering tailored supplemental benefits and low to no out-of-pocket costs. Chronic-care SNPs are able to tailor their benefits for certain chronic conditions or diseases, as defined by the Centers for Medicare and Medicaid Services (CMS). Today, Medicare does not allow for specialized ADRD SNPs.

CareMore started the Brain Health Program because it is the right thing to do for our members. By focusing on ADRD we have been able to directly improve health outcomes as we detailed above. However we, as an industry, can do so much more with appropriate attention and resources. Systematic barriers to ADRD quality care need to be removed. Allowing SNPs to offer specialized and innovative choices for those with ADRD would help recalibrate the system, leading to improved health outcomes and lower out-of-pocket and system costs for more individuals impacted by ADRD.

In addition, Anthem believes the current Medicare risk adjustment model consistently under-predicts the risk scores for high-cost populations, which results in underfunding vulnerable subgroups like those with ADRD. Currently, dementia care is not represented in the risk model therefore plans providing this care are not appropriately reimbursed, which in turn limits plans ability to provide more robust care. As you know, there is no single test that can diagnose Alzheimer's disease with complete accuracy during a patient's life. A diagnosis is made through a complete assessment. Anthem understands that in order add Alzheimer's and dementia care to the model there needs to be a standard process for diagnosis. The Brain Health Program follows the Alzheimer's Association Cognitive Assessment Toolkit.

In sum, to ensure individuals with ADRD have access to sensitive, effective, and innovative care, we encourage CMS to use its authority to:

  1. Permit health plans to develop and offer SNPs for individuals with ADRD, so that all members stricken with these diseases have increased access to high-quality care; and,
  2. Ensure proper payment for care provided to members with ADRD. We urge CMS to add Hierarchical Condition Categories (HCC) codes within the Medicare risk adjustment model to ensure individuals with ADRD continue to have access to innovative and effective models of care.

We applaud your continuing dedication to the individuals with ADRD, as well as their families, and caregivers. We too believe Medicare can and should do better for individuals with ADRD. There is a real opportunity to improve care and the lives of individuals with ADRD, as shown by our Brain Health Program's improved outcomes and high member, family, and caregiver satisfaction. We would like to further discuss our experiences and how we can all work toward improving care for those touched by these diseases. In addition, we would like to invite you to visit a CareMore Care Center to experience our innovative member-centric model of care. Should you have any questions or wish to discuss our comments further, please contact me

  1. Alzheimer's Association, 2014 Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia, Volume 10, Issue 2. Available at: http://www.alz.org/downloads/Facts_Figures_2014.pdf
  2. Id.
  3. Id.
  4. Hebert LE, Weuve J, Scherr PA, Evans DA. Alzheimer disease in the United States (2010-2050) estimated using the 2010 Census. Neurology 2013;80(19):1778-83.

 

NOVEMBER 2014 COMMENTS

M. Ellenbogen  |  11-13-2014

Based on the question I believe I was asked by George, I decided to expand on it since I may have not painted the right picture an may have rambled a bit. I will share to attached documents that have been edited for me. This email will be completely unedited and you will see firsthand how my writhing and word finding has been impacted. I decided to give you an idea on what is like for me to plan and be at NAPA.

It all starts almost at the end of one of the meetings. I need to add it to my outlook otherwise I may forget about it. Once I get that information I will probably check it 3 or 4 different times just to insure I entered it right. I cannot begin to tell you how I want to select a certain date and instead I choose the wrong on. I can tell you I cannot understand that as I was such a perfections.

As we get closer to the date I search for hotels that I can get a better rate. I cannot begin to tell what burden it cost this is to me. My wife and I are not always in agreement in doing this and I feel so guilty of spending the money. When I final find a hotel I give the information to my wife to do the booking. I am so afraid that I will do something wrong or even book the wrong date or even misunderstand what they tell me. At one time in my life I would have made this trip all in the same day even though it would have been exhausting. Now days because of my location and in order to be of useful when I attend I need to arrive the night before so I am not stressed out. I am a little without the drive already. When I am finished the meeting I am so stressed and over whelmed that I would truly be a risk of driving all that way. My head feels like it is in the clouds and so unclear. I cannot begin to tell you how I need to unwind an relax after the meeting. It may be easier to possibly take the trains to get there but that would add to the cost and so much more confusion to me to try to interconnect with the trains and find the different ways to get to them from one train to the other and on time. I know this may be hard to understand as it is for me who once traveled regularly this way but when you cannot find the signs and get lost finding room numbers in a build then you would understand what all those other things do to you and the amount of pressure and stress it creates. ( on a separate note. I went to one of the congress buildings with a room number. I must have spent over a half hour or more trying to find it. I keep asking people to point me to it but somehow I just kept missing it. I cannot begin to tell you why. Thank god I finally ran in to someone that I knew and I asked them if they could personally take me there. I cannot begin to tell you how embarrassed I felt that I could not find my own way and do something so simple. Even with asking for people to point me I could not get there. It is even hard for me to understand why I cannot do that. That is why I am terrified these days to travel the trains, airports and metros but I will If I have to. I just know that it may have some issues along the way, Just hope they are not costly. I do real hat that to because I was so cost conscious in my life so that creates another level of stress)

As we get a month out I try to recall what new issues need to be addressed that may be important. Not necessary related to your topic. That would be tomuch to even begin to figure out. I also hat to be repetitive as so many tell me I should be. I believe you are all smart people and get it the first time. I cannot begin to tell you what pressure it si to try to stay within your time frame and I am not even sure I can even figure that out. I usually come up with so many topics and must limit it because of the time. I really have trouble prioritizing any more. To me they are all important. I believe part of the problem is in order to do that one needs to use executive functions that I no longer have or capable of using. I do believe they are there, just some broken path to the highway. And I do have the thought an times but just cannot seem to get them into words because as I try to think of what I am thinking to translate it stress me out that I forget what I am trying to write. It is crazy by far. It like I can only handle one task at a time and anything else is overload to me. Go figure, people say I had one of the most stressful jobs in my career and I thrived on it while others could not keep up with me or even handle it. It is so hard to write these days because I cannot remember what I said in the previous sentence. In fact as I write as sentence I make so many errors and by the time I go back at the end of the sentence to reread it I have so much difficulty trying to even know what the words were that I was using just for that sentence. I can take so much time trying to do that part. As I right and all I can say is thank good for Word. I can assure you if that did not exist today I would have died by now. It takes what I can no longer spell and make sense of it for me. Not always sure it using the write words. Sometimes my spelling is so bad and I cannot even being now to even spell the word for it to even help, so frustrating.

Now after probably many days of working on my speech I sent it to Emma Steel who is my editor all the way in the UK. She is the only person I could find that was willing to help volunteer her time. I had reached out to so many local like high schools, colleges and no one would give me just a little time to help in editing my work, not even a friend who was teacher who said she is to busy to help. All I wanted was one or two things a month. So many people offer there help but when it comes down to asking them for it they don't . Very frustrating for one that always help others when they were in need. I need it now so badly just the be heard as I am slowly losing my abilities and there is no one there for me. While I ask my wife on some It so much for her to handle as I have already added to burned on her already.

Emma does such a beautiful job especially with the poor information I give her. I could not even image what it must be like for her because I cannot even figure it out and I wrote it. Takes a special kind of person. She does all this from the goodness of her heart and I am demanding at times.

When I get the work back some time we need to go back a few time because some of points may not be there with the passion I like to put in this. Many times I just settle just because it's not worthy of the added work I would need to place on her and don't want to make her feel bad. Sometimes I amy go to someone else to help in order to get it closer to where I feel it should be. To many times in my writing I go over board and they all tell me to tone it down which I do many times but I have learned in life that on very important issues you need to be very direct if you want something done and it may need to be unpleasant if you tell the truth. While you folks my not believe it I hate it every time I must say something negative to you. It does hurt me inside and I continuously think about it as it may possible jeopardize the relationship we have. This works on me from before the meeting to weeks later. Even more because when I speak there are no comments made to even get a sense to how you feel. Any way once I final get my speech I send it to two trusted individuals who are in the dementia arena for guidance. Based on their comments I may change or remove something. I always want to insure I get it right since I may no longer be the best judge for that. These people have been extremely important to me in making all this possible.

If everything is okay with the speech then I need to get it ready so I can read it. First I change the font size to 18. Then I need to place unusual spacing in there so I can continue to read it and so I can stay focused. If I do not do this the words all look like they are shifting. I have trouble f keeping track of whereI am and if the font is to small I see the entire page of data coming at me as one, and cannot focus on a simple word. This what I have been able to figure out to help me cope and to be able to continue.

A few day before the meeting I must write an agenda of the places I need to be it with the complete address information. I will check that over at least 3-4 times to insure I did not error. If I am to meet with someone and have a phone number I will ask my wife to added to the cell phone so I have it in the memory. I can no longer do that. Kind of strange for someone who was responsible for Data and Voice for 70,000 people and was always a gadget person. I have become fearful of much of technology because I struggle to use it and cannot remember the mistakes I make so I don't do them again.

The day of or night before I need to get ready and pack what I need. I really rely on my wife to do much of it any more as I cannot keep it straight and remember what I need or packed. It also seems that I lost the ability to kind of plan to organize ahead matching cloths which I was once very good at. I would have never allowed my wife to just select something and be okay with it. I try to place as much as possible in the car as soon as possible so I don't have to many things I need to worry about when I leave. I even add my wallet to by brief case because I have ben know to forget it recently.

The day I leave I need to insure I am not in one of those days that my mind is all foggy. If that happens I would probably need to cancel the trip because I would not be able to drive that long under those conditions. I worry about that for while till I get on the long stretches of high way. When I do start out in my car I add the address to my GPS. From that point on till I get there I am on autopilot and following what it tells me to do. I don't always understand so I may take the wrong turn but the great thing about it is it will recalculate and get me there no matter how many mistakes I may make. Cannot even image what life would be like without it. I never even needed a map before. It was like I had built in GPS. While I am driving I am using ever once of energy that I have to try to stay focused and alert to what I am doing and the road and cars around me. I cannot begin to tell the amount of stress that is created when I drive now days. While I drive good it takes so much energy to do it. I feel like I am leaving my finger prints embedded in the steering wheel. I pretty much tune out everything else. Since I consecrate so much on the road, I sometimes have difficulty in following the road signs following on where to turn but that is okay because I have learned to not panic or get upset as much. That is the worst thing when can do with this disease is get stressed out because it leads to a serious snowball effect that can really make the mind go into a cloud and so unable to think. That is probably the most important think one can teach us. Not to panic and remain calm. I believe if we can master that it will go a long way. While I have driven to DC so many times it would sure be nice to look at place on the road as a landmark so I can gage about how close or far I am. Many place I see appear like I seen them while others look so new to me and cannot even understand. Sometimes all of a sudden I thing I know where I am going to only realize I am confusing it with some other road or place and it had nothing to do with where I am headed.

I was once the person that waited to run on fumes in the car before getting gas. Today I start to panic as I head to DC because I have gotten caught in paying super high prices for gas because I went to the wrong location. I still had tree bars but concerned of not being able to find the next gas station because I cannot follow directions. Because of that today I now try to fill up before Dc and I still pay more that I would like to but I do so many other stupid things to day that just keep adding to my cost of living because of lack of memory. It amazing how much one needsit and how we take it for granted until you lose it. When I final get there it is such a sense of relief to be able to check into the hotel. I call my wife to let her know I got there. Sometimes she calls me as in this last time because it took me much longer to get there and she was wondering why. Lots of traffic. In the hotel it can be easy or embarrassing when you need to fill the form out. I may not remember the type of car I have or even how to spell it. I do get my address wrong from time to time now. I usually don't understand all they tell me with their instruction on the internet and all the other things they say. I almost need a hotel for dummies on a piece of paper to read as I needed for what they tell me. Then I go to park my car which some time is challenge. I try to use the handicap spaces because It makes it easier to find, Just need to get to the right level. But as Leave the car and others are around me I feel so guilty by taking that spaces as they see me carrying all this luggage and walk without any issue. It has already happened where I could not find the car, so this method works.

When I get in the room I am very careful to put my items in one or two places in fear that I may lose track of them and forget them. It takes me many hours to finally unwind from that drive. Before I leave the hotel room I go thought some kind of a ritual every time. I feel all my pockets multiple times that I have all what I need. My instructions paper that also has the address, my room key and other things.I probably do this 2 -3 times because I may not remember I did it on unsure. As I am going down the elevator I may be rechecking again. I am not sure if it because I have total lost self confidence in myself or if its I forget I had checked.

Now that it's time for dinner I would like to really go somewhere else, but close to hotel makes it easier since I don't to risk getting lost and don't like driving when its dark. Especially when I am out of my comfort zone. When I return I call my wife to let her know I am safe so she does not worry. I could only imagine what goes through her head when I leave. But she wants me to keep my impendence for as long as I can even if that means there will be issues along the way. Sometimes she may need to guide me of setting up my alarm or the internet on my tablet. I do call the hotel for a wakeup call but like to have a backup in place. That night I try to prepare most of what I need for the next day so I am not forgetting something and to keep my anxiety down. The next morning I am head for my NAPA meeting and of course doing my rituals. I have even more to do because there is so much more I must take with me this time, like brief case with all my information, pens, business card.

This last time it was such a pleasure because someone was kind enough to offer to pick me up from the hotel. If not I would have receive a ride to the metro were I would have difficulty in adding money to the metro card. I really need someone to help me do that. Gas stations is even a problem some times because they are to quick and I am slow at replying. They need an AD mode to select. If I had the card then I only need to wonder if I get to the writ track. People are not so friendly when you are stopping them on the way to work as they are rusting for their train. Oh and the noise in those places really create a problem for me because I cannot filter the sound out so when the person is speak to me which I would have hard time understanding any way and remembering the noise only raise the bar for my failure.

Once I get to the sop if I am lucky to get off at the right one because I find the signs that tell you the stop a bit confusing at times. It's also hard to process as the train is coming into the station to read what is on the walls with the anticipation of trying to get off and all those people around me. Once I do get off it becomes a problem of asking lots of people to guide me so I can find my way at NAPA. I always ask two people because so many send you the wrong way. Not sure why people can just say they don't know.

Now that I made it I start to unwind because all this builds new stress. It makes it challenging going thru the metal detector because I don't always remember what I should remove. When I get up stairs I always feel a bit awkward because I cannot remember people's names and not always even sure of their face. Sometimes I think I met them but I did nt. I never had those issues in the past in fact most were surprised by my recall. I actually look forward to see people with name badges as that helps me a lot. Not that I am always able to read it as I am starting to speak with them. Can not multitask. I was a bit disappointed at this last meeting because they did not use the tags. When the morning gets started I am pretty good. It takes so much energy for me to sit there and try to focus and concentrate on what is being said. It's like using 110 present of all my power during that time. (I know this is hard to relate to but picture a moment in your life were it required full concentration and all your attention to insure you did something right. It feels like you are drained if you did it for a while. That is what happens to me most of my day as I do what most of you just easily cruise through the day) When you folks talk I do not necessarily hear everything you say. Well I guess I do but my mind doe not process it fast enough. So I am constantly trying to fill the gap for missed words and trying to make sense of it all. As I get back from lunch I am stating to feel the drain on my body which is huge by then. That whole afternoon I am fighting so hard to keep my body engaged to continue the process of absorbing what you are saying. I start to lose some of that ability but when topics of real interest come up I do get more out of it. You will me going out more often or standing. I am trying to keep myself calm as I am real having a very difficult time being there at that point. Just try to image that you had to concentrate on one thing all day. This time it was great because you made it so much better because of the technology. I could hear very one because of the new microphone. I cannot being to tell you what an improvement that was for me. Not so much when we lost the projector. I could not follow and had lost of difficulty. In fact those handouts are useless if you cannot even read the print. You may as well save the tress if it cannot be read. When the meeting stops it's like instant relief and I start to unwind. I do like to speak with many of you after. I am okay at that time but still winding down..

The trip back to the hotel is about the same but this time my head is a bit foggy. Ok for a short drive but not long.

The next day when I leave DC I always know I am going to get lost. There are two areas that I keep making mistakes and for the life of me I cannot remember were to go. One day I made the same mistake 3 times. This was during rush hour traffic. Can you image to turn wrong and it takes 20-25 minutes to get back to where you turned wrong original and you still not sure where to turn and turn the same wrong way again. That day I was almost ready to just pull the car off the road and call for help. Lucky something in my mind told me to take a completely different route for a while and this way the GPS final figured out a new way. Talk about frustrations that day. That is why I no longer drive home the same day. It is so much more relaxing to leave DC at 6:30 AM. I just want you to remember because so many of you are thinking why is this guy driving? I and many others who see me drive agree that I do very good. I need to keep an eye on that as I know it won't be long before I can't. But don't confuse ones driving capability to being lost or getting lost. That is hard for many to understand. I have been put in many recent situations where my reaction was needed to avoid any accident and I did better a normal person may have reacted. My wife was in the car. My reactions are still good. They may be slower then they were, but stall faster than many on the road without AD. My biggest fear is to be in an accident and it as absolutely not my fault, but because I have the AD someone may take action to make themselves feel better. After all mydoctor made the recommendation 6 years ago to stop because I would not know the day on my own. Just think how many good years would have been taken away from me. As you can see I did skip a lot from my trip but when I arrive home I finally have this huge sense of relief that I was able to make it to the meeting without any major issues. I continue to wonder if I can make the next or was this the last.

I must tell you I did not even think of all these things being that bad until I wrote this. Is even worse by far when something unexpected happens like getting lost or went down the wrong metro lane. I waste so much time an energy all day long just to correct mistakes.

I do believe I did much better in this wring than usual. I really spend a long time putting this together. About 11 hours and it seemed to be clear headed.

I cannot tell you how please I was that someone asked me a question at the last meeting.

I hope this more of a incite for what it is like to be in my shoes.

I always welcome your questions because that is the only way people will learn.

P.S, Whilethis letter was not edited I did share it with my editor who made the following comment.

Ironically this is the clearest I have seen you write in long time, your spelling is almost spot on, and so is you word usage etc.

Not sure why but I did spend a lot more time on it. I just hope you read it all.

ATTACHMENT #1:

Alzheimer's Disease, My Daughter, and Me

I am not sure how much longer I can take this. I truly miss my daughter, who lives in New York. She is so much closer to home nowadays than she was four years ago. This weekend she decided to come home to visit. While I wanted to have some kind of conversation with her, I struggled and could not seem to figure out what I should say. I am so glad when she is here.

It was Sunday afternoon when my wife said my daughter would be leaving in about 45 minutes so she could catch the bus. They were both sitting at the kitchen table. I felt like I should go there and spend some time with her before she left. So I turned off the TV and sat at the table. I sat for almost 50 minutes and hardly said a word.

That whole time, I kept thinking that I must and need to say something, but I just could not figure out what to say. I felt like crying so many times because I just could not come up with any words. My mind was so empty, without any thoughts. During the last 10 minutes I felt even more pressure to say something, but I had no thoughts in mind nor could I even be creative enough to start a dialogue.

I cannot understand why it is so hard. I can jump in on conversations once in a while to make a comment, but I struggle so much to have some conversations. I really do not believe people understand how painful Alzheimer's disease can be.

Twenty minutes after my wife and daughter left, I began writing this. I was doing everything possible to hold back my tears. Is this what I am becoming or have become?

So many people say to me, "You don't seem like you have Alzheimer's or dementia." I only wish they could see the pain I go through on a daily basis. I am not sure I want to continue down this lonely road much longer. I only wish my daughter remembers me for who I was and not for the person I am becoming.

I love you so much, Jamie, and I wish I could still show it. I am so proud of who you are and have become. I only wish you could feel the same way about me. Just another bad day for me, but it was so wonderful to see you.

I am so fearful that it will become even worse, not that I am sure how that is possible since I did not say much at all.

I pour my heart out to you not for your pity, but for you to do something to change the course of dementia. No one should be forced to deal with this. There are no excuses for doing nothing.

M. Ellenbogen [http://michaelellenbogenmovement.com/] was diagnosed with Alzheimer's at age 39, in 2008. He has since started a campaign to raise awareness of the daily struggles of people living with Alzheimer's and dementia. His new book, From the Corner Office to Alzheimer's [http://www.amazon.com/Corner-Office-Alzheimers-Michael-Ellenbogen-ebook/dp/B00EPI0ZHQ/], is available on Amazon. Follow him on Facebook [https://www.facebook.com/MichaelEllenbogenMovement] and Twitter [https://twitter.com/MichaelEllenbog].

ATTACHMENT #2:

Imagine if you will waking up one morning and going about your daily business, you have had breakfast and are about to leave for work, but you can't remember where you left your keys. Common enough you say; we have all done that at some time or other. Your wife hands you your keys and off you go. Life carries on as normal for a few weeks then one day, while at work you have to call a colleague, but you have inexplicably forgotten his extension number; an extension number you have called numerous times a day for the past 10 years. You feel silly but put it down to being tired. You work hard and hold a high profile position in a financial institution so it is understandable that you will have memory lapses now and again. Like the key incident you laugh it off.

Over the next few months things start to get worse, you are forgetting people's names even though you have worked with them for many years, you are making stupid mistakes at work, you are forgetting to go to meetings, you are finding it really difficult to do the simplest of tasks, you continually forget where you parked the car. Again you are told by friends and colleagues and doctors that it is down to stress; that you need to slow down, maybe take time off etc. But you know there is something wrong, you know that it is more than stress.

So you start keeping a record as best you can and you pester your doctor for answers. One day you get the answer. An answer no one expected.

An answer that will change your and your family's life forever.

You have Young Onset Alzheimer's Disease.

Alzheimer's is an incurable, progressive loss of brain cells. In the beginning it targets the memory and speech, as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech/writing abilities, repetitive behaviour, mood swings, and depression. Then in the final stages of the disease it is not just the mind that is affected; the body is rapidly declining also. In the late stages of Alzheimer's there will be difficulty swallowing, a needed for assistance when changing position or moving from place to place, there is increased vulnerability to infection and a complete loss of short-term and long-term memory. Death is slow, painful, undignified, and inevitable.

My name is M. Ellenbogen and this is my diagnosis.

For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease. Why do I have to campaign? I do it because over five million Americans have Alzheimer's, and other forms of dementia. And what is more shocking is the lack of knowledge out there about this illness.

I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer's disease. While some may be sympathetic in the moment, there appears to be little follow-through.

People look at me and think there is nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can see, hear, speak and listen...... but not for much longer.

I am dying; day by day hour by hour my life is ending.

So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass have become frustrating difficult and for me to perform. I leave things lying around the house; not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.

I was once a very sociable person but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound. I don't understand what people are saying; the words run together and they may as well be speaking a foreign language.

I can no longer write or speak like I used to, what you a reading now has been written by a friend of mine who helps me put my words onto paper. My friends have become distant and even when in their presence they will address my wife, even when enquiring after me they rarely direct their questions to me. This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.

Grocery shopping with my wife is time consuming and frustrating as I find it difficult to make decisions and plan ahead for meals. Eating out was something I used to enjoy but now I am unable to read the menu and assimilate the information into a decision. At home my wife has to assemble my meals in a series of individual decisions.

There was a time when I could follow a map and easily get from point A to B. Now I rely on my wife for navigation, I know that it won't be long before I can no longer drive and that really upsets me because I love going out for long drives in my car, it is the last vestige of independence I have left.

I used to be smart, I worked hard, and I accomplished a lot. Seeing all my failures today are giving me a new appreciation for the things I was once capable of doing. I was a very different person, but that intelligence still shines through occasionally as I am challenged to invent new coping strategies to respond to these changes.

This disease is costing me money in so many ways because of the problems and issues I create; I have broken gardening tools because I have forgotten how to use them properly.

Personal grooming is a problem as well; as I can never remember the last time I washed my hair or changed my clothes.

In meetings I will lose track of the subject matter if the information is shared in long sentences. If I am speaking at events or meeting I must have my speech printed a large font size with clearly marked punctuation.

Sometimes my mind does not communicate with the rest of my body; I had to turn the grate on my fireplace but instead of tentatively feeling if it was hot or not I just picked it up and badly burned my hand.

I can no longer use my video recorder. I had trouble remembering which way to turn off the water in the garage for the hose

I lost my job because I could no longer function in the environment, so now I spend my days advocating for Alzheimer's it gives me a reason to get out of bed in the morning, it stimulates what is left of my mind.

Do you know what the worst part of this is? I have to watch my wife struggling to do the things that I once was capable of doing, and know I cannot do anything thing to help. I see my wife becoming stressed, depressed and overwhelmed, and know it will only continue to get worse.

My wife is on the road to hell; I have not even reached the worst stage. That scares the hell out of me.

I am losing my mind and I can see it happening, but I cannot do anything to change the course. I am slowly becoming a child again, and will soon be a body with no mind.

At what point should I give up? At what point would give up?

What do I have to look forward to?

Why should I put my wife through any more pain and sadness, do I really want her to watch me slowly die in front her eyes?

Any chance I had at a good life and a happy retirement has gone; my life is pretty much over. If you were in my shoes would you want to carry on, knowing what is in store for you?

I want to die on my own terms, I want to die with dignity, I want to die while I can still make the decision to die, and that is a very small window because I know in the not too distant future even that choice is going to be taken from me.

The laws we have in place today do not take into account the needs of people suffering from dementia; we need to rethink not only how we regard people with this disease, but also how we look after them. We need to have things in place not only to help those suffering live vital and productive lives, but also provide the means necessary for them to die with dignity and at a time of their choosing. We need to take our heads out of the sand; we can no longer turn a blind, this is a very real problem, this is happening now to millions of people across America.

We need your help!

ATTACHMENT #3:

I have three issues I would like to address briefly today. Please contact me via telephone or email if you have would like additional information concerning any of these issues.

As many of you know I have shared with you my vision of dementia friendly communities. I believe Project Lifesaver International should be part of our future plans. Project Lifesaver provides timely response to save lives and reduce potential injury for those who wander due to dementia including Alzheimer's.

The task of searching for wandering or lost individuals with cognitive conditions is a growing and serious responsibility. Without effective procedures and equipment, searches can involve multiple agencies, hundreds of officers, countless man hours and thousands of dollars. More importantly, because time is of the essence, every minute lost increases the risk of a tragic outcome. This is a program that must be offered in all states. We currently use tax dollars to pay for these bands that track prisoners under house arrest, we need to make this technology available to those with dementia, at no cost, to keep them safe. Statistics show it will save money and produce better outcomes if we all invested.

My next concern involves the verbage associated with certain medications. For many years now most in the medical community, non profits and I have been preaching what I believe is questionable information to others. I have been telling people that (colon - ester - ace) cholinesterase inhibitors, such as (Dan - ep- azil) Donepezil and (Meh - man - teen) Memantine may work for only 50 % of people and when they do they only work for 6- 18 months. This is the information reported by drug manufacturers, physicians and patient education portals. I have learned that this is reported because that is the longest length of time that the drugs have been clinically studied. Recent information, circulated by many experts in the field, suggests that these drugs can continue to be effective for a longer period of time.

The language concerning the use of these medications must be changed if we are going to help people. The benefit of continuing medication is a complicated question as I have found in the last 6 months. People are encouraged to check with their clinicians and make an informed family decision. While further research needs to be conducted, whether it's best to continue or discontinue (colon - ester - ace) cholinesterase inhibitor use I believe we need to error on the side of caution and include some language that states that it could have a negative effect if one was to stop taking it. It can also include that more scientific studies are needed. I have spoken to many doctors over the past few months who are also looking for clear direction. I would think we should make the decision on the side of caution and keep the patients best interest in mind. I believe that if the patient started taking these drugs and they did benefit from them originally then they should stay on them until the end, even if the benefit is small. When your brain function is at a very low capacity, any help is good. I say this as long as they do not have any serious side effects from the medication. I have a comprehensive bibliography on this topic and suggested guidelines in medical language that I can share. It includes information from many doctors/experts in the field. The reason I am so concerned is because I constantly hear others who are on the drugs question whether they should still be on them after they have been taking them for over a 1 1/2 years. I have also spoken to some who stopped it and realized in a week or so that they were not performing as well and went back on the drug. Then I have heard some horror stories where they stopped taking the drug and realized it had helped. When they went back on they never seemed to recover to the same level of cognitive function as they were before. I say all this based on their own viewpoints and those of their care partners. They regret ever doing this, but they only did it because of what they heard about effectiveness only lasting 6-18 months. Please help change this confusing data.

Finally, as you know I have been pushing for the World Purple Angel to be the same as the Pink Ribbon or as the handicap sign. We have now trademarked that here in the US and in the UK. It is free for use with our permission if the guidelines are met. Please adopt this symbol as part of your continued support for dementia. We need to stand as one on this cause.

On one Final comment - At our last meeting I think some of my comments were taken personally. The goal behind them was a call for action. Many outside of the committee told me that they would have liked to have said those things also. My response to them is don't be afraid to speak up honestly and from the heart.


 

M. Malloy  |  11-09-2014

I am a US citizen currently earning my Master's degree in Public Policy at the University of Cambridge in Cambridge, England. Previously, I worked in the Criminal Division of the US Department of Justice.

Right now I am working on a policy project addressing the global challenges of dementia, and ways to promote the international agenda following the December 2013 G8 Dementia Summit.

I am writing to you today because I have a few questions concerning US's efforts to address dementia since the Summit, in particular with regard to long-term care. While the Summit was held in London, it seems that the US has been leading this issue since 2011, with the enactment of the NAPA. I want to make sure the US perspective is clear in my report.

Please let me know if an HHS representative is available to briefly speak with me via email or Skype. Please also let me know what time works best for you.


 

M. Ellenbogen  |  11-07-2014

It was nice to see you all at the last meeting. What I am about to say should not be taken in any negative way about you, as I have the highest regard for all of you. I have four key points I would like to make. They are by no means in order of importance as they are all of the highest importance and should be treated as such:

Urgency is a word that I believe should and must be in your plan, preferably at the top of your list. I am very unsure as to why this word was not considered given that this disease is our greatest national health and economic threat in this century. Lack of action now will have serious consequences.

Additional Council Representation by People living with dementia -- As one who has sat through and heard many Council meetings, I am convinced that you need a few people living with early-stage dementia as Council members. They bring a unique perspective and feedback to the issues you are addressing, just as the caregiver representatives do. It is very frustrating to be a public observer at these meetings because there are issues that I am "uniquely qualified" to address; but am not allowed to do so. I believe listening to the needs and preferences of those actually living with this condition would enable the Council to "take a new view" on the importance of honoring our personhood; having community-based services to enable meaningful participation in our communities and our nation. You have heard all this before. THE TIME IS LONG OVERDUE TO ENHANCE COUNCIL REPRESENTATION.

Transparency - As an outsider I believe lack of full transparency is a serious issue for this Council. It should not matter whether you are from the government or the private sector. When you are on this committee you should all be equal to each other except for the chair. All information should be shared.

NATIONAL ALZHEIMER'S PROJECT ACT - PUBLIC LAW 111--375--JAN. 4, 2011

Based on the comments I heard at the committee meeting I was appalled by some of the possible misunderstanding of what power The Advisory Council. This group should all be on the same level playing field and titles should not matter other than for the chair of the committee. Every single person has the capability of making recommendations without any concerns of financials. All recommendations should be consider and recommended that actual benefit those with dementia. Both the Federal and Non-Federal members have the right to submit their recommendations to Congress. Below is a sentence from the law.

ANNUAL REPORT.--The Advisory Council shall provide to the Secretary of Health and Human Services, or the Secretary's designee and Congress

The legislation says that the Advisory Council will pass its findings on to Congress, and leaves it open so that the findings can go directly to Congress from the AC, or can go from the AC, to the Secretary of HHS and then on to Congress.

I find it sad that the government officials felt they could not share this information with their own members when in reality the recommendations could be seen by anyone in the world with Internet access as soon as they were posted to the ASPE website. While the public may not see the transmittal to Congress in its entirety, and clarity on who it was sent to, The Advisory Council should have access to this information.

I consider that extremely disrespectful to your colleagues. I personally saw this problem when you had removed the public comments. After many complaints I was assured it would be resolved; but a year has gone by and there is still no change.

Expectations - I believe that some on members of the Advisory Council have the wrong idea about the expectations for their role. You have been chosen to play a very critical role. This came down from the President. He tasked all of you to identify the problems in dementia research, treatment and care and provide recommendations to advance efforts across all these areas. What an honor. You need to think differently in this role. For all of us who are living with dementia, we need the Council to examine our needs regarding better dementia care services and supports so that we can remain living in our communities as long as possible with our families. The Council needs to consider: What are the resources and funding needed to make that happen; and include them in specific recommendations. We all want a cure and understand that takes a great deal of funding. But millions of us are living with dementia right NOW and NEED community-based service recommendations NOW. You all have the opportunity to make one of the biggest impacts in your life. I and so many others are counting on you to do this. Don't be the person to kill the idea before it is presented.

Make the recommendations for what is needed to assist people living with dementia remain in their communities. Tell Congress what they need to spend to actually make those recommendations a reality, including research. Let the President and top government officials make the final decision. It is your mission to tell them the truth of what is needed; not to determine if it is possible or can even be funded. Yes, you may be asking for too much, but you will be doing what millions of us living with dementia need and want.

Today I believe many of the comments made and actions taken create short falls of reaching inspired goals. Please change that for me and the others that are truly counting on you. That would mean so much to me.

I truly hope I did not upset you again, but someone needs to speak up for all of us.


 

OCTOBER 2014 COMMENTS

S. DeKosky  |  10-24-2014

Thank you for your patience! Here is R. Egge's email and attachment.

==========

I've told those who were interested in attending the upcoming meeting that space was not available to do so. I also conveyed your offer to have read aloud a written comment should they send one to you in advance.

They have decided to do so. S. DeKosky (copied) will send a comment from he and several of his colleagues later today to the address napa@hhs.gov. I mention just so you can be on the look out for it.

ATTACHMENT:

Thank you for this opportunity to provide public comment.

Among the several laudable goals of the National Plan to Address Alzheimer's Disease is the first one: to prevent and effectively treat Alzheimer's by 2025. We believe the National Institute on Aging (NIA) took a profoundly important step forward by releasing research milestones for each year between now and 2025 to guide federal efforts and allow all stakeholders to assess whether efforts are on track to meet this goal. Just as importantly, was the NIA commitment to revisit these milestones regularly, and revise them as warranted based on the progress, obstacles, opportunities and challenges that will inevitably emerge year by year. This is an extremely important commitment--one that we believe has done much to assure the Alzheimer's research community of the credibility of and commitment to this bold effort.

In support of this effort, the Alzheimer's Association convened a working group of 40 Alzheimer's research experts, who represented a broad range of research interests and experiences. We were among the members of this working group. The group was charged with reviewing all milestones to assess whether they, collectively, would be adequate to reach the 2025 goal. We made recommendations where existing milestones ought to be augmented and suggested additional recommendations for consideration, that would more fully support success by 2025

Our review found that the first iteration of the milestones is not sufficient to achieve the 2025 goal. This is not surprising--.this is to be expected in the first iteration of any such process and we appreciate that scientific progress in the last two years has also placed us in a better position to enhance the milestones in their next iteration, at the upcoming Alzheimer's Disease Research Summit in 2015. It is encouraging to the scientific community that the NIA had the foresight to commit to a process which would make milestone adjustments that they ultimately conclude are warranted.

Our working group's conclusions have been published in the October issue of Alzheimer's & Dementia. This article has been made freely available on the Journal's webpage. We believe that if the milestones are updated as the working group recommends -- and, even more importantly, that the funds are requested and provided to implement them -- the likelihood of achieving the 2025 goal will improve dramatically.

Our understanding is that the NIA intends to draw upon input from all available scientific sources, such as the working group, together with the deliberations to be held at the upcoming Alzheimer's Disease Research Summit 2015, to update the milestones. We believe this is a sound approach, and we urge the NIA to release revised milestones as quickly as is reasonable thereafter.

When the summit is held, 2025 will be just 10 years away -- a brief time in light of the research challenge presented by the 2025 goal. A difficult truth is that to prove that medical interventions work, it takes several years to complete a research study. Because of the fact that, in our view, the amounts requested for Alzheimer's research by the Administration over the past several ye ars will not allow for the implementation of milestones required to achieve the 2025 goal, we further recommend that in its upcoming budget the Administration call for sufficient Alzheimer's research funding to allow for the swift and complete implementation of revised milestones. We have no time to lose to achieve the 2025 goal. If our country does not act quickly, we could lose the boomer generation to Alzheimer's. Although we recognize that the revised milestones will not yet be finalized by the time this budget is released, we are confident that the NIH's capable scientists could calculate a solid estimate of the appropriate order of magnitude of funding required.


 

P. Mermagen  |  10-23-2014

Please see below and then go to DARPA and see what they are doing in brain research. Communicating with different parts of the brain! We may be closer to a fix just jumping over the causes and cures .....

==========

From: P.J. Mermagen
Sent: October 22, 2014 at 10:19:16 PM EDT
Subject: Curing dementia and memory loss by bypassing the messed up functions with plugged in hardware and preprogrammed software

Last weekend the Class of 59 had its 55th reunion at the University of Rochester. It is a weekend called "MELIORA" WITH TERRIFIC EVENTS AND PRESENTATIONS THROUGHOUT THE SCHOOLS-MED, BUS , EDU ETC.

One of the events I went to was a presentation by four Bio-engineering graduates from the U of R bachelor class of 2004. 2 males and 2 females. 1 Male is now an MD researching male fertility, one male is now a Program Manager at Google. One Female is a PHD faculty member at another University whose postdoc in Austria was in imaging, the other is in imaging in the pharmaceutical industry.

Another event I attended was the future of higher education by four University Presidents. At the reunion dinner I was at the table the U of R Dean Philosopher was at. He, like the University presidents who addressed the future of Universities, started to express concern on the future of Universities. I told him he needn't worry, the next generation of U of R Bioengineers would develop a pill an English major could take to accumulate the knowledge a 4 year program would provide.

I now think rather than a pill it will be a plug in brain/memory module. The same way we replaced horse teams with steam, gas and electric powered cars and trucks or snail mail with email....

Would the agelab help get DARPA to sponsor a competition to provide the electro/data storage/imaging/plug in module and a way to connect it to people that could provide an education equivalent at 1/100th the current cost of a 4 year degree in time and expense and soon provide an alternative to Parkinsons and Alzheimers? Such an approach could accelerate by decades relief much like the autonomous vehicle competition accelerated achievement of that objective.

Something like this will solve a multitude of problems-cost of education, time involved in learning stuff, overcoming learning difficulties....dementia, memory inneffectivity/loss WOW!

In addition to the military benefits of plug in learned modules there might be an ability to avoid mistakes like deciding terrorists are not state sponsored and then we could end it by holding states responsible and get unconditional surrender and sufficient occupation of the sponsors/hosts so they learn english (less extreme thought patterns) and how to live peaceably with each other and us.


 

Z. Khachaturian  |  10-14-2014

Please list my name as an attendee of the Monday October 27 meeting of NAPA Advisors.

Also I would like to submittt the attached the pdf of an editorial regarding the Nation Plan to Address; please post this material on your web and allow me 5 min for a brief statement during the open public comments session.

ATTACHMENT:

Perspective on the "2014 Report on the Milestones for the US National Plan to Address Alzheimer's Disease" [Available as a separate link: https://aspe.hhs.gov/pdf-document/napa-public-comment-attachment-perspective-2014-milestones-report]


 

SEPTEMBER 2014 COMMENTS

M. Janicki  |  09-26-2014

We wanted to let you know of this article that appeared in the Chicago Tribune yesterday. This is the kind of good press we need more of to make the public more aware of the situations of families and people with intellectual disabilities affected by dementia.

If possible, please offer this to the NAPA Council members.

ATTACHMENT:

Down Syndrome and Alzheimer's: A Double Burden [Available as a separate link: https://aspe.hhs.gov/pdf-document/napa-public-comment-attachment-down-syndrome-and-alzheimers]


 

E. Einstein  |  09-11-2014

Hello- I work with the Office of Autism Research Coordination, where we coordinate the activities of the Interagency Autism Coordinating Committee, and I'd like to find out a bit more about the way other FACA committees organize public commenting. For ASPE, I've seen the impressive database of comments, but am still wondering:

  1. What mode of commenting is accepted (oral, written, telephone)?
  2. Is a time limit given per commenter, or overall?

 

JULY 2014 COMMENTS

M. Ellenbogen  |  07-24-2014

Attached are my comments for the committee in reference to my speech. I had received many concerns from some and I feel I need to explain more. As usual I am willing to speak about this anytime. Thanks

ATTACHMENT:

Based on the response I received, after the meeting, concerning my NAPA speech I felt it required follow up and some clarification. I will also give you comments from both sides.

After the meeting so many people from the public came to me and said how great my speech was and to thank me for addressing what they felt needed to be addressed. My response to them was,"Why did you not say it if that is what you had wanted to say." While I know there is a great deal of frustration from many, they seem to be uncomfortable with expressing that emotion.

On the other hand a few committee members approached me and felt it was unfair of me to say that. Some claimed that they had tried to bring some of those changes about but their requests were being ignored, and that it is up to the Secretary to make the final call. Others used lack of personnel and being over worked as an excuse.

I believe part of the problem and confusion to all this is because or conversations are one way. We speak, you listen, with no opportunity for clarification to what we say. While I have made the request multiple times to have some dialog, this has also fallen on deaf ears. The other problem I have is that I have so much to say and such a limited time to say it. I mean that two ways, one because of the time allowed for our speech, and two because my time is so limited and I will not be able to continue this for much longer.

If I offended anyone, that was not my intent. I have a great deal of respect for most of you. I only say it this way because I only know most of you and not all of the newer folks on the committee. You also need to understand my background. As a high level manager I was a fixer for any issue that came up, no matter what. I have accomplished the impossible in my life time. I moved an 11000 square foot data center in 6 months, with only 3 direct reports, which also maintained the production side at the same time. So please do not tell me about staffing issues and people over worked. I have also learned that you can make the job what you want it to be. I also had to make my case to High level management for various new products and changes to the organization. When I failed to get the buy-in, it was my fault because I did not do a good job in presenting my case. I reached out to others and figured out new angles and new approaches to make the case stronger and have a angle that would get the buy-in from all. I am not saying it was easy but I had to be very creative at times and I had to be very motivated in what I was doing. Many of my counterparts gave up after their first rejection and never pursued things further. They gave up and felt it was a failure of the board for not liking their vision. Many times I had to think outside the box to make this happen.

Getting back to my message to you- I am sure that when you volunteered to be on this committee you did this for the right reasons and took this very seriously. For those who are with the government, you took this job because you had a passion to help people. I know it's very easy to become beaten down over time when others do not share the same views. What you must understand is that President Obama created this committee for a reason and you are already way ahead of many of the politics. Some one believes in what you are doing and is looking for clear directions and recommendations. While I realize that some of you have tried to get some things done and may feel like you have failed or were not being heard. If that has occurred I encourage you to push harder and do what I have always done. If the person gets in your way, find a way around them. If they put up a brick wall, climb over it. If you believe in the mission then you should do all you can. If you don't then maybe you should question yourself if you should be on the committee.

Sadly it helps to have some skin in the game to become very passionate as I am when it comes to this. Just think that what you are doing will have an impact for a loved one in your family or even you may get this diagnosis one day soon. The purpose of my speech was a wakeup call that we need to move faster and must ask for the things we feel most uncomfortable about. Most of my remarks were related to the fact you have not address the stigma and what it means to have dementia in the US. Most people do not know. It is three years since the committee began meeting. I believe in three years so much more should have been done. Just look on what they did for the advertisement campaign for the affordable Care Act. That is what needs to be done for dementia. Someone said that the Alzheimer's Association was doing much of that. While they have, that is a very small piece if this. This is the Federal government's responsibility to pull this together on a much, much larger scale. No disrespect to Alzheimer's Association, but they also have failed in many ways.

I not only believe, I know so much more can be accomplished. Time is extremely critical because peoples' lives are at stake here. And if that is not an incentive for you, the money you spend now will give you a huge return on your investment the sooner you act. My goal was to rekindle the fire that burned so brightly when the committee was first formed. I would welcome the opportunity to speak to any of you should you have any questions. You need to understand that my life is in your hands.


 

M. Ellenbogen  |  07-22-2014

It was nice to see you yesterday and attached is me speech requested. As discusses with Ron and Linda, someone will get back to me by mid August with a decision on weather I can do a recoding for you to display on a computer and projected on the big screen.

On another note I also plan to follow up with some remarks to my speech due to some comments I had received from a few members on the committee. I hope to have that to you in the next week or two.

Please let me know should you have any questions.

P.S. In reference to the room we used for themeeting, that was by far the worst type of environment for someone like who has AD due to the noise. Be more than happy to speak with you if you would like to know more.

ATTACHMENT:

I believe words really matter, and sometimes we don't realize the hurt they may cause; especially if you are not personally dealing with the disease. I have been involved in many planning meetings that have discussed what appropriate words should be used when describing this disease. Most recently I attended such a meeting, involving key stakeholders in this arena, where someone came up with the perfect term. When I heard it a light bulb went off. Then I got to thinking why no one has thought of it before. Now I am hoping that you will adopt this term for NAPA. "Dementia, including Alzheimer's"

A term I would like to remove from regular use is the word patient, when referring to people living with dementia. This term slowly becomes a self-fulfilling prophecy, and gradually they become more dependent on others. They are a person not a patient.

While we are on the subject of terminology. I also do not like the term "caregiver". In fact I despise it. And although "care partner" is better, I and many others still don't like it. We are still discussing whether or not the term "supporter(s)" should be used instead. I will keep you posted.

NAPA has now been in existence for about three years now, and recently they conducted a survey where 59 percent of people asked thought that Alzheimer's was just part of memory loss and related to normal aging. I am not quite sure what NAPA's mission is, but as a national group who should be bringing change for dementia, I believe you folks have failed miserably in educating the public. It's no wonder no one wants to do anything for this cause.

I have been saying for years that it's a discrimination issue, but I may have been using the wrong word. I should have been saying it is a civil rights issue. I should have the right to be treated just like any other person who has a disability. I should have the same rights as a person who gets funding for HIV. I should have the same rights as a person who gets funding for cancer. I should have the same rights as any other person who can drive and has a medical condition. I should have the same civil rights to decide when and how I die. I should have the same civil rights to be in control of my own finances.

But because I have dementia I have lost all of my civil rights and more. Can you tell me why I lost my civil rights when I live in the United States? I did nothing wrong, I am just a person with a disability.

My wife is here today for the first time. She is the one that I depend on to do many of the things that I am no longer capable of. It is bad enough that I have burdened her and placed so much added stress on her. But the federal government has added even more burden and stress on her, because she must fill out forms on my behalf on where my money is spent. I think that is totally ridiculous. My personal privacy is being abused. Why is it that just because I have dementia I am treated differently? Does that make sense to you?

I have shared the following with Dr Gillings of the World Dementia Council. What are your thoughts on this idea?

If each country was to contribute to a pot of money, then offer that money as an incentive to find a cure by 2020, I think you would generate a huge amount of interest. You would attract more experience. Would it really hurt to throw something like that out there while your team is working the normal channels? I would think you would have so many people jump in to this arena based on that. I believe this is a small price to pay if we get a way to stop this disease.

When Senator Toomey questioned S.M. Burwell on Alzheimer's funding at the finance committee, it was clearly stated that things changed historically, and as such we should be changing the way we fund this disease. This is what I have been saying every time I have come here.

It is time to shift some of those funds to dementia. Someone must tell F. Collins. I cannot understand that why, when something this simple is staring you right in the face, you fail to take action. You seem to lack the courage to make this simple change. How many more need to suffer and die in this devastating way before you folks do your jobs. What has happened to our civil rights? Stop beating around the bush and tell them what we really need and must have. 100 million is so far off the real number we need.

Talk about frustration. For years now we have been saying we need at least two billion dollars, but no one seems to listen to us. However, when illegal immigrants cross our borders the president asks for almost four billion dollars, with no plan in place. Why do our civil rights not count? Why is no one willing to stand up for us like that?

On another note. It's now been over a year since the public comments were updated. I was told it would be resolved at one of our previous meetings. It's still not fixed as of third of this month, and if one cannot resolve this simple issue how are you going to even tackle Dementia, including Alzheimer's?

If it sounds like I am get frustrated with NAPA, I am, I believed in all of you folks, and now years later, there has been very little progress made. Let's put more passion and fire into this project. So many like me are counting on you, this is just not another long-term project.

Someone recently said to me "I would never call you a diplomat." This was in reference to my speeches and speaking. I believe that is part of the problem. We all try to be so nice to each other and we don't push for what we really need. While we end up accomplishing great etiquette at this table, many continue to suffer and die around us. Please tell them what you really want to see happen and don't beat around the bush, some people just don't get it that easily.

At our next meeting, will you allow me to have someone send a connection to you on your computer and I can bring other people virtually on the computer here on the big screen. These are people from all over the US. I would like to give them each a 3 minute time to speak. They are all in the US and have been diagnosed with some form of dementia. I may be able to get a recording to share. I am willing to give up my time so others can be heard. Please allow the people to be heard before their voices are no longer capable of speaking because of the dementia.


 

N. Wilson  |  07-11-2014

Please accept these attached written comments for the record of the July 21st meeting of the Advisory Council.

ATTACHMENT:

A newly established interprofessional group known as the Hartford Change AGEnts Initiative Dementia Caregiving Network is now working to achieve improvements in services, supports, and care for persons with dementia and their family caregivers. This network is part of the Hartford Change AGEnts Initiative, which is headquartered at The Gerontological Society of America and is supported by The John A. Hartford Foundation. Through the Change AGEnts Initiative, the Hartford Foundation is transitioning from its long-term support of academic focused programs to a downstream approach with the intent of having a more immediate impact in the practice environment to improve the care of older Americans. Based on the Foundation's priorities, opportunities and need in the field, and the interests of Hartford Foundation alumni, dementia caregiving was identified as one of two major focus areas for the Initiative.

Dr. L. Gitlin, Director of the Center for Center for Innovative Care in Aging and Professor of Nursing and Medicine at Johns Hopkins, is a key member of the Change AGEnts leadership team and a member of the Dementia Caregiving Network. The Network is co-chaired by A. Stevens, PhD, of Baylor Scott & White Health and Texas A&M University Health Science Center; and N. Wilson MA, LMSW, of the Baylor College of Medicine and the Houston VA Center of Excellence in Health Services Research.

The Dementia Caregiving Network has chosen two areas for immediate activity:

  1. Development and dissemination of a classification system to help provider and payer organizations and other potential users understand the available evidence-based programs and care practices intended to help persons with dementia and their family caregivers. This work aims to help everyone make decisions about which ones to provide, pay for and use.
  2. Creation and dissemination of a practical approach to identifying family members who are providing dementia care as well as tool (s) with evidence informed questions to tailor support and services to address risks and needs.

We look forward to continued communication with the NAPA Advisory Council as we move ahead with these projects. A full list of Network members and further details can be viewed at http://www.changeagents365.org/change-agents-networks/dementia-caregiving


 

JUNE 2014 COMMENTS

E. Nardozzi  |  06-25-2014

Assistance Needed


 

MAY 2014 COMMENTS

P. Murphy  |  05-07-2014

I have attached my October 2013 fifteen page response to the Florida Purple Ribbon Task Force's recommendations. In so doing, I apologize in advance for the quality. Post ADRD estate resolution after 10 years of full time care of a level 6, I went through three bilateral reconstructive surgeries with post op complications resulting in over two years restricted mobility. I had hoped to assemble a more comprehensive document reflecting the needs of the hundreds of caretakers I have communicated with over the years and testify at federal and state hearings on the issues raised in this document but was not able to walk/drive until a few months ago.

We had a triple dose of ADRD in our extended family. As such, all of your efforts to find a cure are deeply appreciated.

ATTACHMENT:

Response to 2013 Florida Purple Ribbon Task Force Report

Introduction

I have reviewed the Purple Ribbon Task Force Report and the survey. I don't agree with the approach, recommendations or the data and underlying assumptions forming the basis of same. I was particularly concerned with the failure to address abusive practices, systemic industry reform, and secondary impact. After repeated review of this document, I arrived at the conclusion that proposals were no more than plugged holes in a dike with the damn about to burst.

ADRD is a global health crisis of frightening proportion. It is a vicious and insidious disease with debilitating economic, psychological and physical consequences extending far beyond the directly afflicted. This Task Force had the unprecedented privilege to not only place Florida in a national leadership role in addressing and responding to an international humanitarian medical crisis but to shine a light of hope in a very dark place for millions of elderly and their families. Your response was insular and short sighted. It will cripple this state.

First, it was my understanding that the impetus for Task Force creation was the 2011 Miami Herald investigative report series, "Neglected to Death", the focus of which was facility abuse of elderly, particularly ADRD, and state regulatory oversight. It is simply unforgivable and irresponsible that this emergent and heartbreaking crisis as to the elderly in general, and ADRD in particular, was not met with regulatory reform, expanded enforcement and financial/criminal sanctions for this conduct.

Not only was this not addressed but, amazingly, a statement was made that placement of small groups of ADRD elderly in homes was the best solution. I have serious concerns over the justification for this conclusory remark as to ADRD and the source's understanding of disease impact. These homes are not subject to regulatory oversight and are thus a prime target for incompetent coverage and abusive practices. (I thought it was illegal for professionals to recommend unlicensed facilities.) ADRD are not able to articulate their needs, complain, or ask for help under the best circumstances. Removing a layer of government protection, however remote, is ill advised and careless. Even in a facility, this concept of small groups, dating back to the early 90's, struggles because success was predicated on an interdisciplinary team approach which does not exist.

Second, public policy and elder service delivery has fallen prey to an out of control, self serving, self perpetuating and self aggrandizing provider controlled industry dedicated to achieving maximum profit with minimal overhead. Often owners and investors are outside the state or international. Profiteers want a piece of the elderly and layer by layer, they take it. Owners can run a 30% profit level on a facility or HHC business. The best way to evaluate this, outside SEC, IPO or tax filing, is to look at listings or private offering representations of gross revenues and owner benefit. After a few are open, whether or not an IPO is filed or ownership transfers, investors do expect continuation of the same return. Bare minimum revenues are directed toward elder services. The State does not benefit.

Truly outstanding health care professionals, including RN's, LPN's and CNA's suffer and eventually abandon direct service delivery because they cannot control the desired quality of their efforts. Caretakers suffer because they cannot insure that the safety, medical needs and quality of life of their loved one will be served and personally take on the burden. Elderly suffer because they are personally, physically and financially abused and victimized.

The Alzheimer's Association Campaign for Quality Residential Care: Dementia Care Practices Recommendations for Assisted Living Residences and Nursing Homes is a valuable reference. It conditions successful implementation of recommendations on having a sufficient number of appropriately trained staff. This is not evident in practice, was not translated to statutory or regulatory obligation by the Task Force and should be immediately addressed before additional elderly are harmed.

Many families could have paid the $120,000 annual fee for SNF care and continued with their lives. Most don't make that election because the ADRD were repeatedly injured when attempts were made, that avenue was closed to ADRD by the provider, or only made available with doping and/or a 24/7 aide. ALF's are simply out of the question because, in most cases, they can't meet the base medical needs and life quality for non ADRD elderly. ADRD shares the same expected medical and ADL needs normally attendant to aging and many cognitive challenges are based on failure to responsibly meet these needs.

Florida AHCA and CMS deficiency reports and judicial filings, in the public domain and available for your review, reflect across the board abuses. Facilities are not safe and engage in abusive practices directly or by quality understaffing and neglect.

Third, the "aging in place" policy statement, particularly as to mid to upper level ADRD or sundowners is simply cruel and dysfunctional. It will economically destroy this State, families, and future generations because it not only fails to take into account the needs of the ADRD but fails to assess and quantify the secondary destructive personal and financial impact on families. As to the majority of elderly who live alone, it is life threatening. Norway parrots this approach in its 2015 report but, in the absence there of admission to SNF's without acute condition, has their own issues with death and injury by release of isolated non ADRD elderly to a home environment. I don't understand the policy advocate's underlying motivation. Is it an HHC profit oriented response, a mathematically challenged but otherwise well meaning individual, or someone who desperately needs a reality check as to disease manifestation at the mid to upper levels?

I don't know your proposal for single ADRD, particularly those homeless without financial resources, when SNF Medicaid beds are scarce and selectively reserved for non ADRD. I do know that elderly spouses can't handle ADRD. They have their own needs and are often continuously and irrationally verbally and physically abused. It is just too much. Most look to divorce to avoid ADRD caretaking, simply leave or predecease the ADRD. At some point, children, if there are any and if they care, have to gratuitously assume this full time obligation.

In December 2012, the New York Times, after a comparative international review of efforts in this area concluded

"Is care at home for patients with Alzheimer's necessarily more humane? Only if caregivers have the resources -- financial, physical and emotional -- to handle this draining, exhausting, immeasurably difficult job. And only if the institutions that serve people with more advanced forms of Alzheimer's disease and other types of dementia are so poorly financed, staffed and operated that we wouldn't feel comfortable leaving loved ones in their care....

Anyone who's followed reader response to J. Brody's column this week on aging in place knows the burden that this can place on families, especially if government support for home-based services (companions or home health aides who help with bathing, dressing, toileting and other tasks), adult day care or respite care is scarce or nonexistent, as is the case for most middle-class families in the United States. ...

Other countries with which the United States is closely aligned have embraced long-term care as an essential social responsibility while we have not. Unless and until we do so, caregivers here will be among the most harried, stressed and burdened among wealthy, developed countries in the world."

Children caretakers are former attorneys, architects, doctors, engineers, technology and security consultants, teachers, industry executives, police, prosecutors, university professors, fire, health care professionals etc. No profession is excluded. The reason why we are "former" is because, in the absence of essential industry facility reform, regulation and enforcement, there is no responsible choice.

These caretakers are comprised of both sexes, cross party lines, and are frustrated, not simply because control over their own economic, professional and personal future has been taken out of their hands by small time industry profiteers, but with the fact that the quality of the lives of their ADRD loved ones could have been immeasurably improved if safe, quality facilities existed.

Our economic loss and that of our families is Florida's current loss and future burden. Caretakers, professionally and financially, were critical contributors to Florida's economy. We bought and provided goods and services. We contributed to the community. We saved money for our children's education and our future through 401K's. We preserved our health. Now, as caretakers, we do not engage in any of these efforts.

A new classification of poverty has been created which is "intergenerationally" contagious to join the current ADRD unserved homeless population. Put another way, at the end of the caretaking period, which can exceed a decade, our resources have been depleted, we might have MCI, ADRD or a physically debilitating condition, we don't qualify for SS disability or unemployment since we have not contributed, and there may not be family to provide care. 50% of the future generation will be ADRD caretaking. Grandchildren want to know whether to invest in their future if everything is going to fall apart. How do we respond based on your plan?

ADC does not help the ADRD if continuous doping is used to protect other participants from sporadic bouts of agitation occasioned by infection or alienation of environment. ADC does not help if the home caretaker works and the disease manifests itself at night by sundowning, whether or not the ADRD is otherwise normal to easily manageable during the day and particularly considering the lives of children and their schooling. Segregating all ADRD to one ADC but intermingling levels is traumatic for the lower levels that retain some sense of self, daily facing their possible future particularly if operations are not individually medical and cognitive need responsive. ADC is one entity depending on staffing which might not realize the profit level of facilities, if any, depending on quality of service.

With HHC, demand exceeds quality supply for elderly in general. The usual bare minimum wage does not otherwise attract quality applicants particularly if a non ADRD position opens. Occasionally, through internal networking, as opposed to HHC agencies, a miracle occurs but it is usually short lived. Unqualified HHC pose a danger to the patient. Again, this is a complex disease. It varies in form and manifestation and can change without notice. It requires an interdisciplinary team effort focused on the ADRD.

Last survey, 25% of ADRD caretakers repeatedly engaged in suicide ideation. 10% engaged in it after the protracted caretaking period was over. Individuals personally advised of this diagnosis contemplate suicide because they don't want it for themselves or the burden they have already experienced for their children. Absent reform, this will continue.

We want the lives of our ADRD loved ones immeasurably improved in a properly staffed safe and secure environment conducive to their special needs and enriched with advanced cognitive or sensory stimulation like a Snoezalen room, interactive games and activities, supported by responsible, dedicated, trained and educated interdisciplinary professionals who care that ADRD and their medical needs are attended to without chemical or physical restraints and promote level appropriate company of friends. We want them to enjoy their life as it reaches its conclusion, to be protected from abuse in all its forms, and to have a choice in the manner in which quality care is provided.

Reports like this have repeatedly issued over the past 15 years. They are always well written, there is always a survey eliciting information which has been in the public domain for so long, judicial notice would be taken of the conclusions without need for evidentiary support. They define the disease, introduce impact and demographic review analysis and recommend research, education, awareness campaigns of whatever kind, some legislative public pronouncement of caring, and reinforce support for research to find a cure through another commission or office. Occasionally ADRD are thrown a bone through subsidy of providers whose conduct is the basis for complaint. Operational regulatory reform is never addressed because tasks forces are controlled by the entities which should be regulated. Scientists never receive sufficient direct funding. Elderly ADRD never receive the services they need because critical issues are never addressed. One frustrated attorney caretaker made a remark that such reports all be filed away under the category "don't ever do this again".

The following provides limited comment on your report, including your needs analysis, rejects historically structured commissions and task forces, introduces issues not covered but with the focus on necessary reform, and presents recommendations and comments assimilated over the years from caretakers, attorneys and health care professionals including doctors, RN's, and CNA's with prior industry affiliation. The goal is to accomplish reform and proceed in a new direction without state financial stress.

There is a two part solution.

First, clean up existing operations though regulatory reform outlined below more specifically, particularly focusing on increasing staffing and quality control, and take out the trash. Set up sufficiently harsh fines and sanctions individually and by facility to insure that abuses will not continue and to support enforcement in cases of repeat violations.

Second, set up a revolving account for seed monies and loan guarantees, including interest subsidies for infrastructure/development, consolidate IDG and other state and federal resources to support nonprofit operation of multilayer extensive campus developments, sufficiently attractive to entice those amply able to pay for residency, including high level medical care, cognitive services and activities to improve quality of life. Attach it to a university for memory disorder service (like John Hopkins Copper Ridge) independent medical oversight and student involvement. By eliminating owner benefit, the 30% differential may also be applied to cover those unable to pay but in need of services. The goal is a physically and financially self sustaining campus, where no one is turned away.

In other word, change the conception of aging from a depressing environment to one where spouses without ADRD can live and regularly visit their loved ones happy in the knowledge that their needs are addressed in a positive way while they pursue their own interests. Change the attitude of staff towards their role, change the name to a university concept with individual neighborhoods/dormitories, and make it an interactive campus and a wonderful place to be. Instead of being the country that can't get it together in terms of aging and ADRD, let the United States be a leader.

ADRD Population and Needs Assessment

Data challenges based on elevation of presentation form over substance consist of the following:

First, in order to presumably substantiate policy recommendations, the Task Force had a survey. The survey structure was borrowed from, I believe, Oregon, despite the wealth of talent in this state and the issue intimacy of highly educated resident professionals. The survey was not publicized and was open for a period of about two weeks on a site not regularly visited. As to ADRD and family caregivers, the response was so insignificant that no responsible economist would have publicized the survey results much less used it as a basis for defining issues because it lacks statistical integrity. It otherwise substantively failed because the primary focus was asking questions which supported a provider private pay response, not otherwise responsive to ADRD needs.

Second, there is a concern that the base from which linear projections have been made as to the number of ADRD in Florida is not valid and existing and future service delivery needs estimation will suffer. The Rush CHAP's report has routinely been used nationally. The base for this report was an older population on the south side of Chicago and early onset, to the best of my recollection, was not taken into consideration. Over time, studies have repeatedly made extrapolations applied to census, disease incident reports and other variables using this baseline. I would suggest that this may not result in statistically significant results as to, at least, Florida and California.

Third, I also question whether projections should be linear. These numbers do not take into consideration the possible contagion factor by example but not limitation, prion scabie migration, infection and replication (if a causation) not prevented through traditional surgical sterilization methods, the impact of surgical inhalational analgesics as a contributing factor in neurotoxicity/dementia, and the rising incidence of vascular dementia, all of which would suggest an exponential as opposed to linear projection approach.

Fourth, ADRD is a primarily a hidden population. Death certificates rarely report ADRD as a cause of death because other health factors intervene before the afflicted reaches the terminal stages of the disease. Inferring from presentation of county cause of death statistics that ADRD may be quantified in this manner is improper.

Establishing a form of reporting of this disease to more closely define the scope of the problem, particularly in a state which bears a substantially disproportionate share of the ADRD population might be helpful. I don't understand why Florida has an issue with doing, on first impression, a more statistically significant analysis and quantification. Inquiry through residential property tax billing with pass through to non owner occupants was suggested as one way, without incurring significant cost and more closely reflective of county/local needs, to solicit this information. As a secondary benefit, it would also be a way to publicize the brain bank, obtain dedication and encourage, at the early ADRD stages, assembly of diagnostic and cognitive history to accompany donations in furtherance of research.

Alzheimer's Disease Advisory Committee

There is a critical and urgent need for provider industry reform, particularly staffing of facilities, as to the elderly in general and a complete reorientation and restructuring of approach as to ADRD. The Task Force declined to address reform. The responsibility for the future of ADRD was left to the industry dominated Alzheimer Disease Advisory Committee.

The constituency, if you will, is the elderly, particularly the 30% or more ADRD elderly and growing proportion of early onset afflicted with ADRD. Yet repeatedly over time, attention is directed, not to the needs of this population, but to the interests of service providers.

When you have a regulatory structure controlled by the regulated through Committee participation or otherwise, evidenced by policy encouraging direct provider benefit through subsidy or oversight avoidance, you have a form of indirect and constitutionally prohibited entrenched special interests influence. It is a little like stepping in quicksand. Once you have lost your way, you are pulled deeper and deeper into the quagmire of minutia driven situational response from which it is impossible to extricate yourself no matter how well meaning your efforts. Your Baker Act justification and analysis is a good example. Proposed respite care funding is another. Underlying all of this is the complete destruction of all hope of responsible choice to caretakers and quality of care for the ADRD as a matter of Florida public policy.

The Committee contains representatives of the assisted living, home health care, hospital and pharmacy industries. They should be removed and replaced by individuals who do not have financial ties by investment, ownership or employment with a provider. Preferential composition, given the enormity of issues, should be given to a retired judge, Florida Agency for Health Care Administration, an economist, attorneys, prosecutors, nurses associations and legislative representatives who are all able to ask the essential questions and perform investigations without challenge to neutrality.

This is not a personal or professional criticism of any of the individuals involved. I don't know them. It is simply that, as a matter of public policy, no industry should be in a position to control, influence or otherwise make policy which regulates its conduct or in which it might directly or indirectly receive a financial benefit. It is a conflict of interest. Industry input is important but not in this way.

You should seek an opinion from the State Attorney General's office on this matter. At minimum, participation creates an appearance of impropriety which could directly or by inference undermine the integrity of efforts.

Department of Elder Affairs.

I was legislative liaison for a State Department many years ago for Aging, Housing, Local Government, MFA, HFA etc.. Back them we had floor privileges in both houses so information exchange was ongoing. No bipartisan disputes attached to any elder issues. During that time, the legislature passed protective measures like the uniform construction code, planned real estate development full disclosure, nursing home patient's rights and a full range of elder services directly or through state matching funds for federal programs with bipartisan support.

When money did not exist for requests that were truly beyond any realistic appropriation expectation, we found a source. For example, when we wanted to fund pharmaceutical assistance for the elderly on the state level, we attached it to the gaming referendum for revenue dedication. When we needed a design/materials/best practices for affordable housing, we did not pay someone to do it, we went to a television network and announced a contest.

As to the Department of the Elderly, I noticed you contracted with an entity to provide design or whatever development plans for a LTC. I did not see the specifications you put out for bidding on this so I can't comment. Facility design and building specs information are easily internet available. I believe the University of Florida already built one of the original Smart Houses and green facility construction is a fact of life as are sustainable communities internationally. (Germany apparently has an entire town self sustaining.)

You might consider publicity, through contests, as a major motivating factor for free design concepts without financially obligating the State. You receive more truly exciting and innovative solutions en masse and if you integrate it with interdisciplinary considerations from technology, security, surveillance, assistive devices, to artificial intelligence and sensory input, entertainment, activities and acute care advanced equipment, with building considerations, you might get past an extended stay design with a pacing circle. Finally, design concepts which integrate isolated small groups are physically and personally dangerous to the welfare of residents unless and until adequate quality staffing with oversight is mandated and aggressively enforced.

Recommended Industry Reform

The purpose of these recommendations following is to make facility owners start taking issues concerning elderly seriously because the State of Florida finally does. If it takes sanctions, penalties and other costs as well as license disciplinary/revocation as to staff and owner/facility, so be it. The conduct is wrongful and someone should start caring before injurious results are out of control. Further if conduct would have been criminal outside the walls of a facility, including accessory before and after the fact in cover up, it is time to recognize it for what it is.

Years ago, I was Director of Licensing engaged in casino development at a time when State regulation over construction, all casino and hotel operations and employees was intense. When a facility or operations are heavily scrutinized and fined for misadventure, a higher level of conduct emerges.

The following, from professionals in the field, is exemplary but certainly not exclusive. It does not but should address hospital failure to have in house coverage of ADRD fall risks or wanderers. Caretakers, particularly the sandwich generation who work or have dual elderly/family responsibility and are without funds, cannot sit for 24/7 with a hospitalized ADRD. Some hospitals let an aide do coverage for a group of 2-4. This is extremely helpful and reduces hospital liability risk.

Ownership and Management
Prequalify, through a 4 way investigation and license owners, investors and management. Educational, experiential and training prerequisites are currently insufficient and should be strengthened. (in Florida you only need high school to operate an ALF) There is precedent for this in NJ's gaming industry and other sensitive fields. We need to start treating the needs of our elderly as critically.

Staffing
Identify the nature, function and specializations of interdisciplinary staff dealing with ADRD. Increase minimum per patient staffing ratio per shift with specification of their qualifications for dealing with cognitive challenged particularly at night. Background investigations, qualifications and training of staff need to be expanded and reassessed.

Economic Fines and Sanctions
Continuously inspect and severely economically sanction those substandard facilities which harm the elderly.

Staff and Owner Liability for Violations
Take action to discipline or revoke the licenses of operators and staff that participated in or were aware of violations or falsified records and failed to report same.

Facility Compliance Repeat Violations
Federal or state trustee supervised independent contractor assumption of operational activity over extensive or repeat offenders should be provided to bring a facility into compliance with the cost of same borne by the owner/operator. Sanctions should be automatic and not negotiable.

Criminal Liability
Assault, battery, criminal negligence and endangerment, pain medication theft and financial abuse should be treated through the prosecutor, not the ombudsman, in the same way it would be treated if outside the facility. Staff who participated in or were aware of the offensive conduct and failed to report same should be similarly charged. Inception of any such investigation and criminal proceeding or license sanction or revocation hearing, should be communicated to all concerned federal and state authorities.

ALF and ADRD Care
ALF classification of care, as it currently exists, should be eliminated as a vehicle for ADRD care. It does not even meet the basic needs of elderly without ADRD and this should be addressed.

Doping
There is a need for explicit verifiable protocol for the prescription and administration of medication for ADRD as to nature, duration and dosage, documentation of use of off-label drugs and physician (not nurse) justification for exceeding any recommended dosage or duration of administration after seeing the patient. There should not be an automatic presumption of physician competence in this area. (One psychiatrist had no knowledge of Lewy body dementia.) When elderly are ignored or have ADRD or are otherwise doped with off label drugs for behavioral control purposes, they cannot articulate pain. It is a form of involuntary imprisonment not unlike the Argentinean prisons in the 50's which used a rudimentary form of psychotropic drugs on inmates. (In Florida, drugs are also being used on juvenile detainees to control behavior.) If elderly ADRD are doped when they act out and they act out because they have untreated cancer or undiagnosed medical condition which they are unable to communicate, they face years of pain in a semi comatose condition before their life ends strapped in a wheelchair or urine soaked bed without relief. There is an urgent need for immediate action. This conduct is criminal and should be treated as such.

Cognitive/sensory activities for ADRD.
Identification of advanced cognitive conditions which mandate immediate facility release and transfer to a specialized facility dealing with memory care or to a SNF, if attendant medical issues, should be automatic to preclude doping. Facilities should have structured interventions and activities for ADRD which respond to their unique needs.

Financial Abuse
Prior court approval (after family and beneficiary notice) of any gift, behest, testamentary or other property transfer to a facility or any of its employees should be mandatory.

Surveillance
Provision of distance web cams to permit HCS and staff monitoring of their charges, particularly in the case of ADRD should be provided. There is ample evidence to suggest that when staff are under surveillance, abuse abates. Similarly female patients in understaffed facilities need to be protected against sexually aggressively ADRD men. The use of minimum wage employees in egregiously understaffed facilities particularly at night is not acceptable.

Fall Risk and Wandering Prevention/Notice to HCS
Remote notice of bed vacation through sensor monitoring technologies to staff to prevent fall risks and ADRD wandering at night prior to injury is critical. Absence of such protection resulting in death or serious injury has been the basis for substantial litigation. There further needs to be mandatory immediate notification to HCS of injury to patient and accurate record preservation of same.

State of the art lifting devices/equipment
Staff and patients have been injured by lifting challenges. Staff has a brutal experience lifting physically challenged/obese with long term chronic consequences. Patients are injured if mishandling occurs. This needs to be remedied.

Record Management/Interaction
HCS's should be able to directly access the patient's records, including medication management and nurses notes through online interactive software between HCS's and facility. No medication or medical treatment should take place without an HCS's consent. Interactions between medications or other medical conditions and side effects should be self contained within this data base, continuously monitored and addressed. There is no need for handwritten files which can be manipulated/altered pre inspection.

Ombudsman
There needs to be strict guidelines as to the use of the ombudsman function, the obligation of the ombudsman to immediately refer elder endangerment or possible financial abuse to the appropriate authorities and to advise HCS, POA and family of their options, including referral to prosecutor, counsel and a NAELA contact number, or availability of court mediation services as recommended herein. The ombudsman role should be carefully redefined and restricted in scope to matters not possibly criminal in nature. (Some issues are just not appropriate for the ombudsman.)

Facility License Manipulation
There should be an absolute prohibition of facility license downgrading to avoid continuing state scrutiny and oversight when the facility is faced with closure at the higher level.

Intergenerational Support and Information Access

The "intergenerational" approach suggested would make a nice Hallmark card but you have to deal with reality. It is not going to happen and with ADRD there is an issue as to whether, as to children, it should. There is a reason the ADRD caretaker community has the saying "There is always one" (who takes on the responsibility). Another way of putting it is "There is only one".

Many of us started caretaking in the 90's when we were in our 40's and continued through our late 50's. There is no way to accurately convey the absolute shock of initial ADRD diagnosis and the immediate and complete upheaval and destruction of finances, health, and professional and personal life. The unrelenting stress of the behavioral challenges of this horror of a disease, ongoing sleep deprivation occasioned by sundowning and the sporadic and unpredictable agitation/violence which can result in actual physical injury to the caretaker are not the only challenges. The caretaker must deal with non ADRD medical conditions attendant to the aging process.

In order to understand this, you have to get past the marketed mental picture of a sweet grandmother, mildly confused, smiling at a helpful grandchild. This is a fabrication along with an intact family unit working together when ADRD reaches the upper stages.

The ADRD are agitated, offensive, argumentative and occasionally violent with errant behavior predicated on infection, pain, boredom, frustration and fear. They will pace incessantly, wake you in the middle of the night pulling hair because they want to "go home" or because they think you stole the (deceased) spouse or (deceased) mother. They will get up repeatedly in the middle of the night to get dressed for school, stand by a window or door to protect the family all night and punch anyone who comes close. Alternatively, they just wander out the door. They bite, scratch, hit, and accuse anyone of stealing whatever is on their mind at the time. Then they might stop for a few weeks and just when you think things are good and you attempt to drop them off at ADC so you can get to work, they refuse to move. If you take them out, they can refuse to get out of the car for hours on end when they return since they don't recognize where they are. If they are a fall risk, the problem is worse since you have to follow them to protect them. They might go through a fear of water period for weeks or months. They will take things and hide them or take off their clothes in public. Men, usually, may act in a sexually aggressive way toward children or grandchildren because he thinks they are his wife. The challenges are endless. Children might want to help but the ADRD might not like them. Elderly might be able to handle the ADRD during the day but experience unbearable night challenges. (Perhaps there should be Adult Night Care.)

Whoever they were that you loved, as a spouse or a parent, only exists in decreasingly rare glimpses and disease ramifications have made them unknowable. Maybe they occasionally know you and maybe they just know your name. This can continue for 10-15 years.

Children can't and should not be exposed to this unnecessarily because they are not sufficiently mature to handle it. No one really is. Even adults struggle with being accused of something they never did or being hit when violence was never a part of their life. Why should children have to deal with it when the ADRD might not like having them around? Each case is different but the presented characteristics are common.

Family problems range from lack of cooperation to money and estate issues. I will address this in the section on mediation. However, the recommended approach is through professional ongoing interdisciplinary interaction where intergenerational support is gratuitous or not necessarily family related.

Caretakers are daily exposed to the ravages of this disease and are highly motivated. If a USF professor discovers that when the stress related protein FKBP51 partners with protein Hsp90 it contributes to tau toxicity, we want to find out more. If a student grandchild sees the disease progress, preferably infrequently, research becomes more interesting and an interest in biogenetics, psychiatry or neuroscience might emerge. In those cases, you will start to see intergenerational support in ways you never contemplated.

Research grants issue to the scientific community. (Caretakers become very annoyed when scientific research monies are redirected for any reason particularly industry self training.) Subsidized research finds its way into professional journals inaccessible to the general public except though subscription, per article payment or university affiliation. Accumulated costs to review research for interested caretakers and students coupled with the cost of distance viewing of conference presentations is collectively exorbitant, effectively denying the intended beneficiaries access. I believe the cost of the 2013 pharmaceutical industry report on international advances on Alzheimer's drugs is $1600. Yet they want us to participate in their trials. Journals cost about $37 an article. The Alzheimer's Organization charged $500+ to caretakers for internet viewing of conference proceedings though they exist by virtue of our ADRD.

This somewhat circuitous and incestuous proprietary orientation creates an informational glass ceiling caretakers and students can't afford to break through. Information actually conveyed is usually abstract in content although there are exceptions. NIH did permit free web cam access to the 2012 Alzheimer's Disease Research Summit. Some universities, like University of Miami, permit distance access, without charge, to cognitive training at a level sufficiently advanced to be of interest.

The State Library System could be engaged in concert with state universities to assist access. Alzheimer's national and international interdisciplinary publications on all matters from the scientific (journals on molecular biology, neuroscience, and biogenetics) to new forms of cognitive interventions are of interest along with conferences and lectures. Caretakers and students can get to the local library or access through Kindle etc.

Many caretakers are certified in their profession and/or have one or more doctorates. As to students, I believe it was a 15 year old that discovered an inexpensive strip test for a type of cancer a few years ago. One scientist who was participating in the UW "foldit" program of protein structure modeling, (available online to anyone desirous of participation in research) said that his high school son was much more proficient than he was. If you want student interest in this field and you want to help caretakers help their ADRD, respect their level of intelligence and open the door.

A World Autism Center in Jerusalem is underway through the support of the International Center for Autism Research and Education, which is based in New York City. It plans to include a state of the art research facility, a "global platform" for field researchers, continuing education programs and "university level" courses on the condition. It will also have a residency program and will otherwise include advances in autism research including early detection. In other words, it plans to be the world's "largest multidisciplinary center for autism research, diagnosis, treatment and prevention."

I proposed a similar structure for an international Alzheimer's Center, under the umbrella of the 78 nation Alzheimer Federation and in affiliation with the WHO, providing technologically advanced facilities for scientist and independent NGO research, as well as consolidation and development of available international resources and technology addressing cognitive challenges. This would be an interesting project if Florida wanted to take on the challenge (and it could also incorporate facility design elements).

Court Mediation Services, Caretaker Responsibility and Compensation

In recognition of the statistically significant percentage of the future generation who will be full time caretakers of ADRD parents, disputes as to responsibility and compensation for care whether during the life of the ADRD patient or as to unjust estate enrichment for uncompensated services provided as a post DOD claim thereafter, will impose an overwhelming burden on the courts.

There is an immediate need for the state courts to make available, publicize and encourage pre filing court mediation of any and all family/beneficiary disputes relating to care, including caretaker compensation, whether continuing during the term of the caretaking or post DOD in estate distribution, immediately on diagnosis or indication of need, and reducing same to written agreement. In the absence of such agreement and to the extent this becomes an estate issue, mediation should immediately follow the assertion of an unjust enrichment claim by the caretaker.

Most family disputes are based on allocation of caretaking responsibilities and compensation. Family members may refuse to participate except when their financial interests are concerned at which time they become highly active. Caretakers struggle to find time to sleep much less take on a court battle for compensation particularly when liquidity is limited, they have already lost their income and the only asset is the home.

Absent agreement or early court intervention, an unjust enrichment claim may be asserted against the estate post DOD. Historically these were difficult because there was a presumption that family caretaking should be gratuitous. However, recently and thanks to the Alzheimer's Organization, the nature of ADRD and the demanding nature of the care is receiving international public attention. Courts are now recognizing this claim in ADRD cases and some states have passed laws specifically providing for caretaker compensation.

Provision for special needs or other trusts may not be available or have been addressed in many of these cases. This goes further. Caretaking is sufficiently traumatic without family dissension. Early, expeditious and affordable recourse is essential. Mediation provides it.

This is particularly critical since caretakers of Alzheimer's patients, who collectively save the government billions of dollars are (1) denied Social Security disability benefits, no matter medical conditions which would otherwise justify entitlement or prior contributions to Social Security, usually spanning decades, because of the time restricted credits contribution prerequisite to qualification, (2) further penalized by reduction in future social security benefits by inability to contribute during the protracted caretaking period which consumes what would have been the most economically significant period of their lives, and (3) denied unemployment benefits.

Often, caretakers do not receive compensation (or later assert unjust enrichment claims against the estate) because of (1) insufficient resources, (2) family dissension, (3) exhaustion, and/or (4) a general feeling of obligation toward the afflicted parent or spouse which would make taking compensation for caring personally offensive. They are usually unaware of the loss of Social Security disability benefits for failure to contribute during the caretaking period, have no idea of the potential for their physical harm and immune system collapse from the disease or are unable to do anything about it. They can lose income, savings, assets, and children's college funds during a caretaking period which can continue for ten years or more.

At best, if a personal caretaker, at the end, they are old, they have lost their professional marketability, they don't have the physical strength or emotional stamina to pick up their lives and they are usually medically in trouble. The experience is not unlike PTSD and the caretaker has become the patient without a caretaker. At that point, caretakers are advised that, not only is the enrichment of SS by their efforts not acknowledged, but they are penalized by SSA for the caretaking period in the denial of essential benefits and are denied unemployment benefits. This injustice needs to be addressed and rectified.

Solicitation Practices and Non Profits

In June and July 2013, Tampa Bay Tribune issued an expose' of charitable industry abuse, misuse and outright fraud in solicitation practices. "America's Worst Charities" is the result of collaboration with the California Center for Investigative Reporting, the nation's largest and longest serving nonprofit newsroom dedicated to watchdog journalism. CNN joined the partnership in March. Reports indicate that even the best charities may have a solicitation/public relations cost of up to 40%. After that, take away the balance for infrastructure support which may still not be sufficient if labor intensive services are involved. How much makes its way down the pike to the victims? It is just an overwhelming struggle particularly in today's economy when governments are facing their own crisis. http://www.tampabay.com/topics/specials/worst-charities.page

There are too many low rent operators in Florida, operating out of post office drop boxes and, through internet and other solicitation practices, holding themselves out as ADRD research or educational ventures without qualifications or staff. The underlying motivation is to non profit salary themselves by redirecting funds which should have gone to dedicated university and brain institute research scientists. In furtherance of the public trust which motivated the donation, it is time to take a closer look at the ventures legally permissible in this state and weed out the scams.

Thank you for your time.


 

M. Doraiswamy  |  05-05-2014

Enclosed please find our announcement for a new translational neuroscience conference on Alzheimer's disease which will take place on November 6, 2014.

I would be grateful if you could share this with your council members and staff, and circulate within your groups.

http://adstemcellconference.com


 

APRIL 2014 COMMENTS

C. Furbacher  |  04-30-2014

I am writing to support the purple angel logo. As someone who it in the midst of a career transition and had family members afflicted by AD I feel the idea of a logo is fantastic.

Thanks for your time!

 

D. McGarry  |  04-30-2014

who owns the right to this symbol?

how wrote the top web pages for Alzheimer's.

our ribbon will never change

 

R. Richards  |  04-28-2014

Attached are written comments from AARP for the Advisory Council on Alzheimer's Research, Care and Services for their April 29 meeting tomorrow. We understand these comments will be shared with the Advisory Council. Please let us know if you have any questions or if there is anything else we need to do for submission of these comments.

ATTACHMENT:

STATEMENT FOR THE RECORD SUBMITTED TO THE
Advisory Council on Alzheimer's Research, Care, and Services
U.S. Department of Health and Human Services

April 29, 2014

AARP appreciates the opportunity to comment as the Advisory Council prepares to make 2014 recommendations to the Secretary of Health and Human Services (HHS) on the National Plan to Address Alzheimer's Disease (National Plan). AARP's mission is to enhance the quality of life for all as we age. Living independently, connected to family, friends and community is key to a high quality of life. As we age, a decline in cognitive health is not only one of people's greatest fears, but it is also one of the greatest threats to living independently and a high quality of life. As with all family caregivers and the loved ones they are helping, tangible steps can be taken to improve the quality of care, quality of outcomes, and quality of life for people living with dementia and their family caregivers. As this country moves forward with the National Plan goal of preventing and effectively treating Alzheimer's by 2025, we also need to move forward with more effective care for those already affected by dementia, including better care coordination and planning, better access to affordable care, and support for family caregivers who take care of their loved ones.

A. Translate evidence-based, person and family-centered care into widespread practice.

It is important to expand person and family-centered care models broadly to reach the tens of millions of people and their families who could benefit from them. We know that person and family-centered models of dementia care that emphasize continuity of care and coordinate across settings and providers can also improve outcomes. Thanks to academic researchers across the country and the support from federal agencies who are represented on the Advisory Council such as the National Institutes of Health, the Administration for Community Living, the Centers for Medicare & Medicaid Services, and the Department of Veterans Affairs, we have developed an evidence-base from which we can implement better care.1 In some cases, in addition to improving individual outcomes, we can even deter or delay expensive, disruptive, unwanted hospitalization and institutionalization.2 Both domestically and internationally, models of care exist which demonstrate interventions that preserve abilities, improve behaviors, and reduce caregiver burden. These models show that we can do more to help those with a diagnosis of dementia -- and find ways to do it in responsible, cost-effective ways.3

Despite the evidence that we can improve outcomes for people with dementia, these models of care are unfortunately neither widely known nor widely adopted. All too often, people either go untreated, or even after diagnosis, think there is nothing that can be done. It is important to educate people with dementia and their family caregivers that medical, social and behavioral interventions can help even while we struggle to find a cure for the future. 4

That is why AARP urges the Council to redouble their efforts around goals 2 and 3 of the plan:
Goal 2: To enhance care quality and efficiency and
Goal 3: Expand supports for people with Alzheimer's disease and their families.

More broadly, individuals and their family caregivers should be made aware of interventions that can help them.

B. Apply evidence-based quality of care across all settings -- for those living at home receiving care through primary care settings, as well as in residential and institutional settings.

Individuals should receive quality care no matter where they live. As the Advisory Council considers how to achieve the goal of enhanced quality and efficiency of care for those with dementia, it is critical to think about the care provided for those with dementia living in different types of settings. People often live with dementia for long periods of time -- and dementia manifests itself over a continuum of time and abilities. Therefore, quality care needs to adapt over a continuum as well.

AARP is striving to make it easier for older people to live with independence and remain in their homes and communities for as long as they can, surrounded by family and friends. People with dementia are often happier and have more control in their own familiar home, and with the right help and support, they too can continue to live independently.5

While we want people to have the option of living in their homes as long as possible, for some people, particularly those who face advanced stages of dementia, living in a residential setting or nursing home may be the best option for them. Clearly these people still want and deserve to live life on their terms, with dignity and respect, and need high quality care that is affordable and sustainable. Our emphasis on promoting independent living applies to people living in nursing homes and assisted living facilities as well as in home or other smaller community settings.

C. Recognize that quality of care also must include family caregiver support.

In 2009, about 42 million family caregivers in the United States provided care to an adult with limitations in daily activities at any given point in time. They provided unpaid care valued at $450 billion that year, more than total Medicaid spending in 2009 and more than twice the total for paid services and supports, according to AARP's Public Policy Institute.6 The Alzheimer's Association estimates that more than 15 million of those caregivers are providing care for someone with Alzheimer's disease or other dementia.7

While this concept is important in family caregiving broadly, best practices of care for those with dementia recognize caregiver well-being is essential to maintaining the well-being and abilities of the individual as well.8 It has been clearly established that counseling and support for spousal caregivers of those with dementia benefit the individual, family caregiver and society. Individuals whose family caregivers received the counseling and support interventions designed by the New York University Caregiver Intervention Study compared to usual care experienced a 28.3% reduction in the rate of nursing home placement.9 A 2012 report released by AARP's Public Policy Institute and the United Hospital Fund also found that almost half of family caregivers perform medical/nursing tasks for care recipients, such as managing multiple medications and helping with assistive devices for mobility.10 Families generally do not receive training and other assistance to help them provide care. Such training and supports also benefit the person receiving the assistance.

We need to help the millions of family caregivers navigate the confusing care systems to provide assistance for their loved ones and otherwise support them in their caregiving roles. Family caregivers should be given an assessment of their needs and then receive help based on the assessment, especially when a care or discharge plan depends on a family caregiver voluntarily providing services to an individual. Such assistance should include information, training, counseling, links to community resources, help locating services, respite care, or other supports. In September, a federally appointed Commission on Long-Term Care released a report with important bipartisan recommendations to help build a better system to support individuals and their family caregivers nationwide. 11 Importantly, the Commission called for a national strategy to address the needs of family caregivers. The Commission specifically recommended assessing family caregivers and their needs in the care planning process, including family caregivers in patients' health records and as members of care teams, ensuring family caregivers have access to relevant information technology and, importantly, encouraging family caregiver interventions, including respite, training, and other supportive services. We need to provide the support and tools to all family caregivers so that both the recipient and provider of care can sustain themselves.

D. Conclusion

AARP is dedicated to improving the quality of care to all individuals who need long-term services and supports (LTSS) and supporting creative, innovative mechanisms by which that care can be personalized, delivered, evaluated and financed. We know that older adults with end stage dementia are some of the most complicated and expensive individuals with LTSS needs. They often are living with multiple chronic conditions -- and if we can improve the quality of care for those with dementia, we can use those lessons to improve the care for all people with LTSS needs. Focusing on concrete steps to deliver on goals 2 and 3 of the plan could help make significant strides to assist all older adults and their families.

  1. Christopher M. Callahan, Greg A. Sachs, Michael A. LaMantia, Kathleen T. Unroe, Greg Arling, and Malaz A. Boustani, "The Care Span: Redesigning Systems of Care for Older Adults with Alzheimer's Disease," HEALTH AFFAIRS, 33:4 (2014) 626-628.
  2. Zaldy S. Tan, Lee Jennings, and David Reuben, "Coordinated Care Management for Dementia in a Large Academic Health System," HEALTH AFFAIRS, 33:4 (2014) 620.
  3. June Andrews, "Designs on Dementia, A UK-Based International Center of Expertise Improves the Lives of People with Dementia in Innovative and Practical Ways," AARP International: The Journal, January 2014.
  4. David B. Reuben, Leslie C. Evertson, Neil S. Wenger, Katherine Serrano, Joshua Chodosh, Linda Ercoli, and Zaldy S. Tan, "The University of California at Los Angeles Alzheimer's and Dementia Care Program for Comprehensive, Coordinated, Patient-Centered Care: Preliminary Data," J Am Geriatr Soc 61:2214-2218, 2013. December 2013-Vol. 61, No. 12.
  5. Alzheimer's Society, Living alone" available at http://www.alzheimers.org.uk/site/scripts/download_info.php?file ID=1017, accessed April 15, 2014.
  6. L. Feinberg, S. Reinhard, A. Houser & R. Choula, Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving 1,3 (AARP PPI, 2011), available at http://www.aarp.org/relationships/caregiving/info-07-2011/valuing-the-invaluable.html.
  7. Alzheimer's Association, 2014 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia, Vol 10, Issue 2.
  8. Geriatric Mental Health Foundation, "Caring for the Alzheimer's Disease Patient, How You Can Provide the Best Care and Maintain Your Own Well-being." Available at http://www.gmhfonline.org/gmhf/consumer/factsheets/caring_alzheimer_disease.html accessed April 15, 2014.
  9. Mary S. Mittleman, William E. Haley, Olivio J. Clay and David L. Roth, "Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease." NEUROLOGY 2006, 67:1592-1599.
  10. S. Reinhard, C. Levine & S. Samis, Home Alone: Family Caregivers Providing Complex Chronic Care 1 (AARP PPI and United Hospital Fund, 2012), available at http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/home-alone-family-caregivers-providing-complex-chronic-care-rev-AARP-ppi-health.pdf.
  11. Commission on Long-Term Care, Report to the Congress 5 (September 30, 2013) available at http://ltccommission.lmp01.lucidus.net/wp-content/uploads/2013/12/Commission-on-Long-Term-Care-Final-Report-9-26-13.pdf.

 

C. Rodgers  |  04-18-2014

Attached please find written comments I am submitting for consideration at the April 29 Advisory Council Meeting. I am also mailing a hard copy to the address provided.

Kindly verify by email that you have received the attached and that it will be included in the materials you provide to Council members.

ATTACHMENT:

Additional evidence that ionizing radiation causes Alzheimer's

In 2011, Medical Hypotheses published my paper proposing that Alzheimer's disease (AD) is a long-term consequence of ionizing radiation (IR) due to dental X-rays.1 Since then, three more articles have been published in scientific journals raising concerns that ionizing radiation may be a cause of Alzheimer's disease.

  1. In 2012, a review in the Journal of Radiation Research by Begum et al posed the question, "Does ionizing radiation influence Alzheimer's disease risk?" The authors declared "significant evidence suggests that exposure to ionizing radiation can lead to the development of AD," noting that "even relatively low dose exposures" were of concern. In their conclusion, although they note "the absence of conclusive epidemiological or molecular data proving unequivocally that exposure to IR increases the risk of developing AD ... there is consistent evidence that IR might trigger mechanisms that could ultimately favor AD."2
  2. A few months later, a review by Kempf et al was epublished by Radiation and Environmental Biophysics titled, "Long-term effects of ionising (sic) radiation on the brain: cause for concern?" The authors concluded that beyond the fact that ionizing radiation can cause cancer, the "...latest evidence from epidemiological data as well as animal and cellular studies suggests an additional role in increasing the risk of non-cancerous diseases, including neurodegeneration." They suggested that ionizing radiation may be causally linked with both Alzheimer's and Parkinson's disease.3
  3. Later that year in PLoS One, a study by Cherry et al designed to find out whether astronauts on long flights would experience cognitive deficits made national headlines. The environmental factor being tested was cosmic radiation, which is an umbrella term for a number of different types of radiation, including X-rays. In the experiment, mice exposed to ionizing radiation in the form of highly charged iron particles developed brain pathology and cognitive deficits that were consistent with Alzheimer's.4

All four papers propose different pathways to neurodegeneration via ionizing radiation, with some overlap, yet with all of the scientific literature on the subject -- each review has well over 100 citations, many of which relate specifically to radiation-induced effects -- why has the possibility that ionizing radiation may be a major cause of dementia not been properly addressed?

Traditionally, radiation experts, doctors and dentists have compared low levels of medical radiation to a single airplane flight or an extra day of environmental exposure. They point out that we are naturally exposed to low levels of ionizing radiation arising from the ground and descending from the sky, called "background radiation," without apparent ill effect. However, it is only within the last 100 years that frequent, lifelong head exposure to X-rays from dental visits has become "normal."

Before proceeding further, it is important to note that the three latest papers only suggest that ionizing radiation could be causing dementia and do not venture that dental X-rays are the source. Begum et al clarify that by "relatively low doses," they are referring to computed tomography (CT) scans (versus oncological doses); Kempf et al do not address dental X-ray exposure beyond noting that together, diagnostic medical and dental radiation exposures have increased significantly in recent years. Cherry et al only consider the possible consequences of space travel, not oral health as it is practiced today.

Dental X-rays, unlike comparable levels of background radiation that occurs over several hours or days, can involve multiple head exposures in quick succession, which could overwhelm cellular recovery mechanisms. Consider that a full mouth series usually involves between 14 and 21 individual X-ray images; a panoramic X-ray systematically scans the jaws, jaw joints, nasal area, sinuses and teeth; bitewings expose upper and lower back teeth at the same time and usually are done in pairs; and occlusal X-rays aim at the floor or roof of the mouth. Can we really state with confidence that this increase in head exposure to ionizing radiation, which starts in early childhood and continues throughout adulthood, is unrelated to the increase in dementia? Alzheimer's is distinct from age-related cognitive loss both in terms of brain pathology and symptoms and has become a major killer within the same 100 years that has brought us this array of common dental X-ray procedures.

If the answer to stopping the Alzheimer's epidemic is not drug or therapy development but simply taking many fewer X-rays with head involvement, the kind of market-driven research that America is good at and has yielded results in cancer treatment will not work. That is why we need government and/or academic leadership to form and fund research teams that will properly investigate the effects of ionizing radiation on the brain.

References

  1. Rodgers CC. Dental X-ray exposure and Alzheimer's disease: a potential etiological association. Med Hypotheses. 2011 Jul;77(1):29-34. Epub 2011 Mar 31.
  2. Begum N, Wang B, Mori M, Vares G. Does ionizing radiation influence Alzheimer's disease risk? J Radiat Res. 2012 Nov;53(6):815-22. Epub 2012 Aug 7.
  3. Kempf SJ, Azimzadeh O, Atkinson MJ, Tapio S. Long-term effects of ionising radiation on the brain: cause for concern? Radiat Environ Biophys. 2013 Mar;52(1):5-16. Epub 2012 Oct 26.
  4. Cherry JD, Liu B, Frost JL, Lemere CA, Williams JP, Olschowka JA, O'Banion MK. Galactic cosmic radiation leads to cognitive impairment and increased aâ plaque accumulation in a mouse model of Alzheimer's disease. PLoS One. 2012 7(12):e53275. Epub 2012 Dec 31.

 

M. Adams-Cooley  |  04-09-2014

Dr. N. Foster has prepared a statement he would like to be read at the Council meeting on 4/29. I sent a paper copy in the USPS mail to R. Khillan for the record. I'm hoping you can clarify how I should submit the attached PDF online. (He cannot attend the meeting in person, so I'm not sure what to put in the subject line or if this email will suffice.)

ATTACHMENT:

I am submitting the enclosed 5-page statement to be read at the April 29, 2014 meeting of the Advisory Council on Alzheimer's Research, Care and Services. My statement addresses the importance of determining the cause of dementia when it is recognized in medical practice.

I am a geriatric and cognitive neurologist. My clinical activities primarily involve the evaluation and care of patients with cognitive deficits. I wish to provide greater insight from the perspectives of practicing clinicians, patients, and their families. I propose that the Council adopt two recommendations as outlined in my statement:

  • The Council should unequivocally, firmly and explicitly recommend that when dementia is identified, its cause should be determined.
  • The Council should prioritize research that expands the evidence base evaluating the value in clinical practice of knowing the cause of dementia.

==========

Public Comments to the Advisory Council on Alzheimer's Research, Care, and Services
Tuesday April 29, 2014

Thank you for the opportunity to provide public comments to the Advisory Council. I am unable to attend today's meeting in person so I request that this statement be read to the Council. The content and motivations for this statement are entirely my own. Citations and conflicts of interest are listed in the written version of these comments I have submitted.

Thank you for the opportunity to provide public comments to the Advisory Council. I am a board-certified geriatric neurologist, Professor of Neurology and Senior Investigator in The Brain Institute at the University of Utah in Salt Lake City. I direct the Center for Alzheimer's Care, Imaging and Research and I am Chief of the Division of Cognitive Neurology. Over the past 30 years I have maintained an active clinical practice as a cognitive neurologist. My clinical activities primarily involve the evaluation and care of patients with cognitive deficits. Our Center has a unique role. We are the sole academic dementia program in the Intermountain West, and our Cognitive Disorders Clinic is the primary referral center for 10% of the geographic United States. This provides a unique perspective I hope you will find helpful in your deliberations.

The single most significant factor impeding the care of patients is the lack of consensus about the value of knowing the cause of dementia. The Council should unequivocally, firmly and explicitly recommend that when dementia is identified, its cause should be determined. Patients with dementia and their families deserve the dignity and respect of knowing the cause of their illness. It should no longer be acceptable to have their problems simply dismissed as "dementia".

I see in my practice daily the adverse consequences when the cause of dementia is not identified. Without a known cause, treatment is chaotic, fragmented, and ineffective. Without a known cause, prognosis is uncertain and there is little care planning or support. I recently saw a highly educated patient with diabetes that exemplifies this problem. Although his diabetes always had been well controlled with insulin, his doctors several years ago began to notice he wasn't paying attention to his blood sugars. No mental status was performed (after all cognitive screening isn't a recommended procedure). When his family became increasingly concerned about his memory problems, they were told he just had dementia and was put on Aricept. Perhaps because of his physician's uncertainty of this course of treatment, he provided no counseling about what to expect. His family discontinued this drug when his memory problems continued. Later, he was prescribed a scopolamine patch when he went on a cruise; treatment that would clearly be contraindicated in Alzheimer's disease. He became dramatically worse -- his family never understood why. Meanwhile he continued to manage his own insulin. Predictably and unnecessarily if his dementia had been recognized as due to a progressive disease, he developed hypoglycemic seizures requiring emergency treatment and hospital admission. Just before I saw him a Medicare annual wellness visit was completed, but without an assessment of cognition (this is very common, even though supposedly required). His family became uncomfortable with the lack of guidance they had received. By the time of his first visit with me, he had severe memory loss, hesitant speech, was unable to name simple objects, copy simple figures or draw a clock. Even though he had trouble dressing and became very anxious when his wife left the room, he continued to drive. (His physician hadn't restricted driving or indicated his abilities might change. His wife had no support in his care, his daughter accompanying him didn't know what she should do to help, and they had not contacted the Alzheimer's Association. My evaluation led to the conclusion that he has Alzheimer's disease dementia, but that 3 small previously unsuspected strokes also had likely contributed to his relatively rapid decline. Now we can begin appropriate care and help his family avoid future care crises and manage a progressive dementing disease.

Dementia is not a medical diagnosis; it simply describes a syndrome that can be due to any of several dozen causes. It is inconceivable that a physician today would fail to determine the cause of chest pain, stroke, shortness of breath or any symptom as serious as dementia. Yet, this is the current state of affairs with dementia. Why? It is considered axiomatic that knowing the cause of a medical problem is necessary for appropriate treatment. Why isn't doesn't this seem to apply to dementia? Physicians usually vigorously pursue an accurate and precise diagnosis.

My clinical colleagues, health systems and insurers are all well aware that no existing guidelines require determining the cause of dementia. The American Academy of Neurology provides guidelines for what testing should be performed in a dementia evaluation, but offers no opinion regarding whether or not such a diagnostic evaluation should be undertaken (Knopman et al., 2001). Reportedly, this is because there is no supportive evidence from clinical trials! Who would suggest a randomized trial where a diagnostic evaluation is withheld from half of patients? Is there really equipoise about this question? The American College of Physicians and the American Academy of Family Physicians guidelines for treatment of dementia fail to mention evaluation and seem to assume that determining causation is unexpected and unnecessary since treatment is discussed only on in the context of dementia syndrome (Qaseem et al., 2008). The Council through its recommendations and influence can begin to change expectations so that the cause of dementia always is sought.

The consequences of diagnostic nihilism are everywhere manifest. The US Prevention Services Task Force has decided not to recommend screening to detect cognitive impairment in primary care (Moyer et al., 2014). Insurers often have failed to reimburse testing shown to increase the accurate and confident understanding of causation, justifying this with the belief that the effort has no value. In this environment, the Council's important recommendation of early recognition and evaluation is unlikely to be implemented. The concept of precision care, embraced in other fields, and critical for improving quality, seems nearly unattainable unless we agree that cause of dementia is important.

Diagnostic nihilism also breeds therapeutic nihilism. If there is a feeling of "why bother" about determining the cause of dementia, then existing treatments also become dismissed. Needed services are not offered and we hear that there is no treatment for Alzheimer's (even among some experts). This nihilism often extends to families and has huge implications for care. When causation is irrelevant dementia care becomes unlinked to medical practice. As a result doctors can feel that dementia is just a social problem not of their concern (Connell et al., 1996). They justify using drug treatments simply to "offer something" rather than treat a disease (Franz et al., 2007). Determining the cause of dementia is difficult and time consuming. As long as insurers, health systems and professional societies find it acceptable, doctors will find it easier and financially advantageous to opt out of investigating the cause of dementia. The price is paid in the quality of care patients receive. How can we expect treatment to improve when those providing care don't even know what disease they are treating? How can patients and families make difficult life-changing decisions when they are uncertain about cause of the problem and its likely course?

The Council also can begin to change expectations through its recommendations about research. The Council should prioritize research that expands the evidence base evaluating the value in clinical practice of knowing the cause of dementia. Research centers should be encouraged to begin generating data addressing the relevance of improved accuracy and specificity of diagnosis. Validated measures of high quality care outcomes relevant to clinical care are necessary to change existing practice expectations among insurers and providers. Our concept of treatment should be expanded beyond drug treatments and to populations reflecting clinical practice, rather than highly selected groups needed for mechanistic and proof-of-concept studies.

We who are most committed to improving the quality of life of patients with dementia and their families must agree on the simple proposition that determining the cause of cognitive impairment should be a fundamental expectation in clinical practice. Peer expectations are critical in clinical practice. We must help define those expectations. Otherwise, our patients will be sentenced forever to poor quality care. Caring without knowing causation is well-intentioned kindness, but it's not medicine.

Cited References

Connell CM, Kole S, Avey H, Benedict CJ, Gilman S. Attitudes about Alzheimer's disease and the dementia service delivery network among family caregivers and Foster, Page 5 of 6 service providers in rural Michigan. Am J Alzheimers Care Relat Disord Res 1996;11:15-25.

Franz CE, Barker JC, Kravitz RL, Flores Y, Krishnan S, Hinton L. Nonmedical influences on the use of cholinesterase inhibitors in dementia care. Alzheimer disease and associated disorders 2007;21:241-248.

Geldmacher DS, Kirson NY, Birnbaum HG, et al. Implications of early treatment among Medicaid patients with Alzheimer's disease. Alzheimers Dement 2014;10:214-224.

Knopman DS, DeKosky ST, Cummings JL, et al. Practice parameter: diagnosis of dementia (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2001;56:1143- 1153.

Moyer VA. Screening for Cognitive Impairment in Older Adults: U.S. Preventive Services Task Force Recommendation Statement. Annals of internal medicine 2014.

Qaseem A, Snow V, Cross JT, Jr., et al. Current pharmacologic treatment of dementia: a clinical practice guideline from the American College of Physicians and the American Academy of Family Physicians. Ann Intern Med 2008;148:370-378.

Conflicts of Interest for N.L. Foster, MD:

Dr. Foster receives a salary from the University of Utah as a faculty member through reimbursed clinical services, and for administrative and teaching activities. He provides unpaid services to the Alzheimer's Association, the American Academy of Neurology, the Society of Nuclear Medicine and Molecular Imaging, as a member of the Utah State Plan Task Force, the Working Interdisciplinary Network of Guardianship Stakeholders, and a number of other community organizations.

Within the past twelve months, Dr. Foster has received personal compensation from Bristol-Myers Squibb, GE Healthcare, the National Association for Continuing Education and Sanofi for consulting activities.

Within the past twelve months, Dr. Foster has received research support for clinical trials from GE Healthcare, the Center for Health Improvement, Merck, and Lilly.

Dr. Foster also has received research support within the past year from the National Institutes of Health, and the Veterans Affairs Office of Rural Health.

He is CEO and co-owner of Proactive Memory Services, Inc., a University of Utah forprofit start-up company developing a mobile application to improve the quality of care for cognitive concerns.


 

M. Ellenbogen  |  04-04-2014

I was the inspiration behind this about a year ago or more. Please share.

http://www.youtube.com/watch?v=brqei45pado&feature=youtu.be

You Are Here -- words and music by K. Morand, B. Saba and D. Butler

God knows what's happening here
I'm all alone in my fear
"Early onset" is what I've been told
I'm too young to be old

All the memories I've known
Are fading into the unknown
The life I lived with the people I love
Are ghosts that haunt me now
And I need to know somehow...

(chorus) Chorus:
You are here
You are near
Hold my hand
One thing remains through the years -- you are here.

I look in the mirror and what do I see?
The eyes of a stranger stare back at me
The look is familiar but something is wrong
Like an old forgotten song
Can you help me sing along?

(chorus, bridge) Bridge:

All that I know is this moment right now
You may be a stranger but love me somehow
In time you will get to know
Love's hardest lesson is in letting go

One day you'll pack up my things
I'll leave you behind spreading my wings
Forgetting confusion, losing the pain
But I'll remember your name
And I'll love you just the same...(quiet chorus, full chorus)

 

MARCH 2014 COMMENTS

T. Buckley  |  03-14-2014

I wish to attend and offer public comment at the February 3, 2014 NAPA meeting in Washington D.C. Our organization (Lucanus Center) has offered community based services and supports to people with intellectual disabilities in Hollywood Florida for the past 40 years. I serve on the NTG committee and also the CFARF board of trustees. Together, we are partnering with the Broward Memory Center implementing the Dementia pilot for Florida for persons with intellectual disabilities and dementia. We presently provide services to over 75 either at-risk or with dementia. Our legislative appropriation is presently heavily supported in Tallahassee by the House, Senate and Governor Scott's office.

We will implement dementia services and supports utilizing the new CARF standards for dementia care for ID with dementia, NTG formal curriculum for caregivers developed in Hollywood July 30, 31, NTG dementia screening instrument, and the Cornell safety dementia friendly checklist. On Saturday, January 11, our group met in Hollywood Florida. The Broward memory center is devoting neurologist, geriatric psychiatrist, neuropsychiatric, geriatric RN, Geriatric Social Worker to work closely with Dr. keller, Dr. janicki and the entire Lucanusteam. We will being working with typical senior centers in February when I present at their annual conference.

I am hopeful we can gain unwavering support for your Advisory Council to guide, direct and support our efforts going fourth. One parent told of her daughter falling and she sleeps on the floor with her because she cannot pick her up off the floor. The mom also has early dementia but will not report to state officials in fear of losing her daughter and being placed in a nursing home. We are presently providing in-home supports to both the mom and daughter and the daughter has not fallen since. We also are beginning a new program at no cost to do the laundry for the aging caregiver.

Thanks for your consideration for our humble request,


 

FEBRUARY 2014 COMMENTS

M. Van Zyl  |  02-10-2014

One global symbol for Dementia is needed. Please support the Purple Angel Project.


 

T. Pitre  |  02-09-2014

As a healthcare professional who works with dementia patients and their families on a routine basis, I would like to see this symbol help spread awareness and support of a common goal around the world to conquer this devastating disease.


 

L. Buytendorp  |  02-09-2014

As a caretaker for my husband who is one of the millions diagnosed with Alzheimer's Disease, I urge NAPA to embrace and get behind the Purple Angel Project. It is anunique symbol representing all types of dementia. While the ribbons which represent many different diseases are well known, there are many ribbons of the same color representing different diseases. The Purple Angel would be immediately recognizable as representing dementia awareness world wide. I know that you are aware of the epidemic which is projected to happen in the future and the more people become aware of dementias the more people will be able to be helped as they take the dementia journey.

http://alzheimersspeaks.wordpress.com/2014/02/09/the-purple-angel-project-napa/


 

M. Bennett  |  02-09-2014

"PLEASE SUPPORT THE PURPLE ANGEL PROJECT"

If you are not familiar with the Global Purple Angel heris a bit of information about why it was designed and who started this movement. The goal of the symbol is very simple:

  • To raise awareness and education of all types of dementias.
  • To show support for those dealing with all types of dementias; both those diagnosed as well as those that care for them.
  • To remove the fear, isolation and stigmas associated with the disease.
  • To become a global symbol for dementia that has no language barriers.
  • To have the "Global Purple Angel" become as well known and accepted as the "Pink Ribbon" for breast cancer, allowing people to live with dignity.
  • To provide an economical way to work in collaboration.

The Global Purple Angel was developed by N. McNamara a man living with dementia and designed by J. Moore. The symbol is copyrighted by them. In true collaborative fashion, they are sharing the symbol with the world in order to shift our dementia care culture in a rapid fashion. There are individuals and well as businesses of all sizes, embracing the symbol, educating their staff, clients and prospects. This is a massive movement which started in the UK and has spread worldwide.

For More Information On The Purple Angel Project And How You Can Get Involved, Please Visit Our Website Below For More Details. http://alzheimersspeaks.com/purple-angel-project


 

L. La Bey  |  02-09-2014

I'm writing to ask NAPA to get behind the new global symbol for dementia. No longer can we have each country or organization spending resources to develop their own propriety symbol or resources. Its' time we join forces and have one symbol that becomes as well known as the Pink Ribbon for Breast Cancer.

I won't quote the stats on dementia. I know this council is very aware of them. Please add fuel to the fire and join this massive movement that started in the UK and has spread around the world. The Purple Angel costs no money and little time to institute; and will help bring the world together in a collaborative fashion; bringing government, organizations, communities and individual citizens together to unite to win this battle.

For more information feel free to go to my website at http://alzheimersspeaks.com/purple-angel-project or contact me directly.

Thank you for your consideration and action in advance.


 

S. Berg  |  02-09-2014

Is this the correct address to submit suggestions in connection with the National Alzheimer's Project Act and implementation...

At age 85, I have a body with many cracks, crevices and creases, resting on a swaying foundation but God has been good and I am "chugging along" while missing June - I've got Memories by the dozen, and Reminiscences by the score... the day I stop remembering is the day my world will end! Visit Website: http://www.junebergalzheimers.com


 

S. Rush Duke  |  02-09-2014

Please support this most needed cause. Thanks in advance.


 

G. LeBlanc  |  02-04-2014

I wanted you to be aware that I have founded a Dementia Hospital Wristband Program here in Florida and we are using the Purple Angel logo for all types of dementia. The program is very well received and something that should have been put in place a long time ago. It is crucial that we make sure our dementia patients remain calm and safe in out hospitals.

Please consider using this logo for other program that are dementia related.

Here is a link to Alzheimer's/Dementia Hospital Wristband Program, please check it out. http://commonsensecaregiving.com/Wristband_Project.html


 

B. Breen  |  02-04-2014

I work as a CPN in Later life services in Manchester. I received an email from a colleague who is involved in a awareness raising in dementia campaign ,as I am myself. The very simple Purple Angel logo is recognised all across UK and globally as a symbol of hope.

The Hope is that communities will commit to being dementia friendly and stigma associated with this brain disease will lessen.Showingthe logo is by way of pledge to stand together to make this happen.

I trust if you read about the efforts of N. McNamara who has Lewy Body dementia and is the inspiration behind the Purple Angel Ambassador(PAA) initiative, further information is available on the following sites.

http://www.tdaa.org.uk or http://www.ostrichcare.co.uk Information on the latest news of his joint working with Alzheimer's Society,or update on the meeting with D. Cameron, Prime Minister recently is available. The purple angel is working so well from grassroots to highest level.

I wish NAPA well in all its excellent work. I trust that you will take the time to find out more about the purple angel campaign too and be proud like me to be associated with the ground swell of increasing awareness it is supporting.


 

T. Hall  |  02-04-2014

I understand that NAPA is considering adopting the Purple Angel logo as a recognisable worldwide symbol for dementia awareness.

As a Purple Angel Ambassador in Bristol, England, I fully support all that the Purple Angel Campaign is doing.

Businesses, organisations, libraries, schools and uniformed organisations like Brownies, Cubs, Scouts and Guides have heard about and seen the Purple Angel in our city..

It is easily recognisable and shops, organisations, churches and cars proudly display their logo as a sign of being a dementia-friendly community.

I sincerely hope you consider adopting this symbol, and help create dementia aware communities throughout the world.


 

C. Hodge  |  02-04-2014

I have been forwarded an email from a colleague regarding NAPA adopting the Purple Angel logo as a recognisable symbol for dementia awareness.

I fully support all that the Purple Angel are doing and have since become an ambassador myself, to create awareness in the Welsh language and Wrexham, North Wales. Here we have seen that the Purple Angel is easily recognisable and shops proudly display their logo as a sign of being a dementia-friendly environment. I sincerely hope you consider adopting this symbol, and help create awareness within communities throughout the world.


 

B. Hickey  |  02-03-2014

I would like you to be aware that I am a Purple Angel Ambassador and it would be really great if NAPA would support us and recognize the purple angel as the worldwide dementia awareness logo.


 

M. Rowlands  |  02-03-2014

As a Purple Angel Ambassador and a Day Centre Manager with Age Concern Hampshire I would welcome the endorsement by NAPA of the Purple Angel. It truly represents a worldwide growth in the recognition of Dementia Awareness. I hope that you will join us in this campaign.


 

I. Gilmore  |  02-03-2014

I'm writing to ask you to please adopt the Purple Angel Logo for Dementia Awareness.


 

L. Holland  |  02-03-2014

I am in support of the purple Angel emblem and really hope NAPA consider joining forces and will support this as a global dementia awareness logo. This could create a world of strength fighting for the same things and making the world more dementia aware.

I have a personal background with dementia as my mother had dementia 5 years ago and I had no support. I work on a daily basis with individuals with dementia as to try and make this a better care system for early onset dementia and due to the Purple angel the awareness has grown enormously so individuals never have to go through what my mother and I had to deal with.

I hope you would take your time to consider this as working together to gain the same outcome would be extraordinary Progress for all involved.


 

J. Moore  |  02-03-2014

I write in support of M. Ellenbogen's request that you consider support for the Purple Angel Dementia Aware Emblem, which is fast becoming known all over the world.

I am the co-designer of this emblem which is features on Alzheimer's Disease International Webpage as a global solution . http://www.alz.co.uk/symbol.

People all over the world are using this emblem to raise awareness by visiting shops and businesses with information, creating memory cafes and dementia friendly communities. We now have over one hundred Ambassadors who are encouraging advocates in their countries to follow suit. In the UK; USA; Canada; Germany; Indonesia; Singapore; Australia; New Zealand; Nepal; Romania; Hungary; India, Bangladesh and many more. Many of our ambassadors are activity co-ordinators.

In the UK, we have the support of our Alzheimer's Society; D. Cameron; The Royal College of Nursing; The Mental Health Foundation and many other organisations.

This has truly become the "people's choice" and is improving the lives of many people with dementia and their families.

I never imagined that this would happen when the emblem was first created for a small town in the South West of the UK.

NAPA's recognition of this emblem would truly be an honour for all who are working so hard to help people struggling to come to terms with dementia and giving them hope for the future.


 

T. Edwards  |  03-03-2014

I am a Purple Angel Ambassador from England, United Kingdom. Many people like myself are promoting dementia awareness and campaigning relentlessly. It would be extremely important to all those involved with Dementia Awareness to have the purple Angel as a united logo.


 

JANUARY 2014 COMMENTS

T. Buckley  |  01-28-2014

I wrote last week through the outlook email but want to be sure that my email was received in a timely manner.

I wish to register two names attending and wishing to speak for the public comment section of the meeting.

The two attendees are:

Dr. T. Buckley-
Member of NTG on Dementia practice's for individuals with ID
CARF board member-drafted new standards Dementia care for persons with ID

Dr. C. Rokusek
Assistant dean of Nova Southeastern College of Osteopathic Medicine Geriatric Education Center

We developed a dementia pilot for persons with Dementia and intellectual disabilities. The Lucanus center in Hollywood provides services and supports to over 300 people with disabilities. Our family has operated the Lucanus center for the past 40 years. We developed the Dementia Pilot with the guidance and direction of Dr. keller and Dr. Janicki. We implemented all the NTG supports. We also partnered with the Broward Memory Center providing critical medical oversight and diagnosis for persons with intellectual disabilities.

I will be traveling to Washington Monday morning arriving with Dr. Rokusek at 9:20. We are hopeful we can pass through security in a timely manner. Can you please notify security of our two names?

I look forward to attending your NAPA meeting. Your NAPA committee has provided incredible support documents utilized in our dementia pilot.

I look forward to meeting and support your NAPA going forward. I attached a copy of our pilot for your review.

ATTACHMENT:

Interprofessional Person-Centered Dementia Management for Broward residents with ID/DD [Available as a separate link: https://aspe.hhs.gov/pdf-document/napa-public-comment-attachment-interprofessional-person-centered-dementia-management-broward]


 

S. Cavanaugh  |  01-24-2014

Is there a way to submit written comments to the NAPA advisory council electronically, or do they have to be mailed?

ANSWER

Anyone can send stories, thoughts and recommendations to napa@hhs.gov. Time is also allocated during each Advisory Council meeting to hear public comments. You can either RSVP to the quarterly meeting announcement and include that you would like to make a statement, or you can submit comments to be read for you at the Public Comment time during the meeting. All comments submitted are included online.


 

M. Ellenbogen  |  01-01-2014

Attached is my speech to be read at the next NAPA meeting. I have also attached a slide that I hope you can show during the time you read my speech. If that is not possible then just show the picture on the third page of my word document of the speech. Please let me know if you have any questions or issues? I will not be available after Jan 30th. Thanks again for doing this and I sure hope to attend the next meeting.

ATTACHMENT:

December 11, 2013 was a great day for those living with dementia. That was the day of the G8 Dementia Summit. Many became energized that day; motivated to find a cure for dementia and to improve the lives of those who are living with the disease. They realized the importance of including those living with the disease in the process. And although I am disappointed that the US did not take the lead in this world health crisis, it was still a huge step in the right direction, and there is no reason why we cannot catch up.

We need to create jobs in the scientific world and keep the money and the brightest minds here. We could use the HIV model that was so successful. The long-term gain will be a huge return on the money invested plus the many lives we save. While we have some great plans in place we must push harder for funding and make the hard choices.

Please keep this momentum going and do not be afraid to rock the boat for this cause. That is the only way we will win this battle.

I have heard representatives from many organizations speak at these meetings, and I sometimes feel they see it as an opportunity to advertise their company or organization. I think they forget why they are here.

Many speakers represent those living with FTD, Down Syndrome, and Lewy Body, as well as dementia. What I find interesting is that although they are all involved in the same cause they all seem incapable or unwilling to join forces with other organizations and work together. It seems they feel that their cause or issue is more important. My message to them and others is this: it is not about your organization, it is about the people you represent.

It amazes me that many people still don't know about NAPA, those who do should share this information so others living with the disease have the opportunity to be heard. I have been coming to these meetings for a long time, and I rarely see any other attendees who are also impacted by Alzheimer's/dementia. In fact it was I who brought someone along with me to speak at the last meeting. As organizations representing people living with dementia, it is your job to invite them to these meetings.

It is imperative that you see and hear the people who are living with this disease. The committee has to realize we desperately need your help, and it is only through your work and the work of others that we will get to a cure. So please provide information about these meetings on all your websites, and encourage participation from everyone, you know many of these people, pick up the phone and find a way to bring them here. It's because of them you are doing this.

Please join us by using the Purple Angel World logo on your websites and awareness campaigns as a symbol of support for enhancing dementia awareness, hope, and empowerment for all. This symbol represents all types of dementias. The Purple Angel was created in Great Britain to become that universal symbol, representing our united support, joining together to raise dementia awareness on a global basis; as well as our hope that, one day, researchers will find a cure! This is a grass roots campaign driven by the people living with the disease and the care partners.

Please Adopt ONE symbol that will come to represent our global message and mission of RAISING awareness, HOPE, and EMPOWERMENT FOR ALL PEOPLE LIVING WITH DEMENTIA, THEIR FAMILIES, AND THEIR CARE PARTNERS. Let's stop the confusion.

This is the first NAPA meeting I have missed, but I am determined to live my life to the fullest and am taking a tour around Australia, New Zealand and Bali on a cruise. I hope to see you all the next time.

Please remember we are all in this together, and as such we must all learn to work with each other so we can become stronger. Please put your politics aside for the greater good.

I would like to thank Helen Lamont not only for reading this out in my absence, but for always being there for me. She has no idea the difference she has made in my life in giving me the opportunity to be a part of all this. It has given me a purpose, I want to go on living, and to change the world. And I know that together we can do that.


 


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