National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, July 2014

• M. Ellenbogen  |  07-24-2014
• M. Ellenbogen  |  07-22-2014
• N. Wilson  |  07-11-2014

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

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.

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.

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 Pat Toomey questioned Sylvia Mathews 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 Francis 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.

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

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. Laura 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 Alan Stevens, PhD, of Baylor Scott & White Health and Texas A&M University Health Science Center; and Nancy 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

Submitted by Alan B. Stevens and Nancy L. Wilson on behalf of the Hartford Change AGEnts Initiative Dementia Caregiving Network