Glimpses from D.C.

Leaving Baton Rouge and going to Washington, D.C. at the same time our 19^th Annual Education Conference was scheduled didn’t seem like a good idea to me at first. After all, the Conference, though managed so well by Julie Darden, did fall underneath my responsibility umbrella, so I felt most obligated to be present for our Conference and for our extraordinary keynote speaker, Dr. Peter Rabins, along with the other lineup of well-respected presenters.

However, as Executive Director, Barbara Auten said, “Everything was ‘aligned’ to have me in D.C.” I am a Board Member of the National Adult Day Services Association and that meeting and Public Policy outing was at the beginning of the week. The Alzheimer’s Foundation of America offered a partial grant for attending its National Membership Conference, plus offered a discount to attend the one that followed, the American Society of Aging Conference. All in one week, back to back. Further, there were opportunities to meet legislators at Capitol Hill, to network with colleagues in the field and to attend a National Brain Forum with Dr. Paul Nussbaum, one of our education conference former keynote speakers.

And so the decision was made.  I traveled to D.C.

My all-day NADSA Board meeting centered on discussion for lobbying for more funding for adult day services, and members went to Capitol Hill the day I attended the AFA Conference. 

At the AFA Conference, I was pleased to meet the AFA Staff and CEO, Eric Hall and some AFA Board Members, including the newly appointed Chairman of the Board, Jeff Greener.   The two-day conference consisted of presentations about promoting organizations through Facebook and Twitter media, Music Therapy, the programs and services of AFA, Public Policy, and a “state of the union” [regarding the nation and Alzheimer’s]  address of AFA by President/CEO Eric Hall.   Special guest at the AFA Conference was MaryAlice Parks, Legislative Aide to Representative Ed Markey (D-MA).  Ms. Parks outlined the rigorous work Rep. Markey and his staff  forge in support of Alzheimer’s caregivers and patients.  Rep. Markey authored the National Alzheimer’s Project Act (NAPA).  She listed pending legislation, namely the HOPE Act (Help Outcomes Planning Education -Medicare reimbursement for diagnosis of AD); the Breakdown Act (National Institute of Health to jumpstart AD Research); the SPRINT Act (Spending Reductions through Innovations Therapies-$50 million for pharmaceutical grants); the National AD Supportive Services Grant and the Independence at Home Pilot Program.  Ms. Parks noted the tireless efforts from Rep. Markey’s office; however, urged attendees that AD needs to break from “aging issues to be more ‘attractive’ to lawmakers". “Alzheimer’s is still a stigma,” Ms. Parks said. “Celebrities say it’s not a sexy disease. The mold needs to be broken.” Agreeing, Eric Hall added, “There’s no language for aging similar to ‘children are our hope.’ Where’s the slogan for aging?”

In Eric Hall’s “state of the union” Alzheimer’s session, Eric noted that AFA is the second largest organization devoted to Alzheimer’s in the country. AFA is a diverse organization, with 1,600 members strong and growing.  Regarding the National Alzheimer’s Project Act, Mr. Hall shared with the group that 70% of the recommendations for NAPA came from AFA and its members, with the work of staff and conference calls with members across the country. NAPA has a long way to go, and Mr. Hall noted that as of right now, the discussion centers around finding a cure and researching non-pharmaceutical interventions. However, Mr. Hall, a member of the NAPA Advisory Committee, is trying to address more issues, such as education, respite care, and caregiver financial issues.

Eric Sokol, the AFA Vice-President of Public Policy, then presented an overview of protocol for meeting with legislators and gave handouts of key issues to address with them. For myself, I had scheduled a meeting with Rep. Bill Cassidy, M.D. (R-LA) and Mr. Sokol assisted me in that preparation.

So, on to Capitol Hill I went, starry-eyed and energetic, with my passion for Alzheimer’s care in one hand, and my hand-outs in the other. Rep. Cassidy’s staff members were warm and friendly, and Rep. Cassidy as well, put me at ease. I tried to encapsulate everything I needed to tell him in a short time, and felt both productive, yet discouraged. The reality is that our country is in a deficit, and there is really no guarantee how many dollars can get funded in the future for this devastating disease. However, eternally hopeful, I think our lawmakers are the key to begin the debate and discussion, considering that by 2050, the U.S. government will spend $600 billion a year out of Medicare and $200 billion a year in Medicaid on Alzheimer’s alone. In one generation, the Medicare costs of this one disease will be more than our entire federal defense budget is now.  As Rep. Markey puts it, “Currently, the federal government spends a penny on Alzheimer’s research for every $3.50 it spends caring for our citizens with the disease. In the case of Alzheimer’s a ‘penny for prevention’ isn’t just worth ‘a pound of cure’, it is worth hundreds of billions of dollars.”

The three-day American Society of Aging Conference followed AFA. I attended an-all day pre-intensive,  the National Brain Forum, facilitated by Dr. Paul Nussbaum. Dr. Nussbaum illustrated his five critical factors of Brain Health (Diet, Exercise, Socialization, Mental Stimulation, and Spirituality), through five noted speakers. The next few days included sessions on Dementia Care and Activities, Early-Onset Alzheimer’s Programming, and LGBT Issues.

So, yes, the stars were aligned for me to be in Washington, D.C. for these conferences and activities and so much more.  I felt proud and privileged to represent Alzheimer’s Services.  I learned a great many things, a few of them to note:

1. NADSA recognizes the need for more dementia-specific day and/or respite centers and funding needed to sustain them.
2. The AFA Staff and Board members were truly impressed with the work of Alzheimer’s Services, noting that we had just been the nationwide recipients of the Brodsky grant, praising our “Faces of Alzheimer’s” Exhibit, appreciating the vision of educating law enforcement officers, and also, acknowledging our input with recommendations for NAPA.
3. The Brain Health Forum validated our direction in providing “Brain Health” Education to our population as we have done recently with the LSU’s OLLI Lagniappe Class.
4. Alzheimer’s Services seems to be on the leading edge of  Activities for Dementia, Early-onset Alzheimer’s programming and LGBT issues.  In fact, when I shared our new LGBT program with the presenter at the LGBT session, she remarked, “You make my heart swell.” 
5. Regarding my meetings at Capitol Hill, Eric Sokol told me that watching laws being made is like watching sausage being made…not for the faint of heart….and that was so true.
6. And, finally, the work of Alzheimer’s Services was affirmed and validated and we can truly say we are up with this country’s standards and more.  People were impressed.  I thought they would be.

 

Dana Territo, Director of Services