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

• T. Buckley  |  03-14-2014
• T. Buckley  |  01-28-2014
• M. Ellenbogen  |  01-01-2014

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,

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. Thomas 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. Celia Rokusek
Assistant dean of Nova Southeastern College of Osteopathic Medicine Geriatric Education Center

Dr. Rokusek and I 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.

Interprofessional Person-Centered Dementia Management for Broward residents with ID/DD [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/257501/cmtach-TB5.pdf]

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.

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.