The second annual Dementia Action Alliance Thought Leaders Summit met in Washington on June 30.
Sandy Halperin, a Florida activist with early-onset Alzheimer’s, was the keynote speaker. He made an impassioned plea for action and a call to Congress to step up the funding for a cure. His words follow:
Good morning everybody.
This is one of the highlights of this chapter of my life to stand before you to share some of my thoughts and dreams as we begin what I believe will be an action-oriented and landmark summit.
I have to speak entirely from my notes this morning – as “I am a person living with Alzheimer’s, or another dementia.”
This is, from my recollection, the first time since my pre-high school years on, that I am delivering a presentation or lecture reading directly from notes (including all of the prior presentations that I have delivered relating to dementia over the past few years). This will be a foreign experience for me. This is just one example of how my dementia has progressed, even during the past few months.
Much of what I have to say today is deep within my emotions and that part of my brain is still most active and when I speak from my emotions, my heart pours out more naturally and with greater fluidity.
Sandy Halperin has been diagnosed with early-onset Alzheimer’s
We all know that a dementia diagnosis can be exceedingly complex – as there are such a great number of types and causes of dementia. This thought process was superbly detailed by Dr. Al Power (who is also here with us today) in Chapter 11 of his new book: Dementia and Aging in the 21st Century.
As Al stated: “In more than a decade no new treatment approach has reached the public. It is clear that cognitive illness is far more complex than we would like to believe … the truth is that no one really knows yet what the causes of Alzheimer’s are. I wrote that statement in the plural, because I do not personally believe that there is one root cause of Alzheimer’s.”
I believe that his words will help to set the tone for what we act on today to achieve our highest expectations and goals.
Today, I believe that each one of us is speaking to our entire nation and globe – with truth and integrity being at the core of all of our remarks.
We must articulate our thoughts with a thunderous voice that reverberates with messages that will be seriously listened to and then physically acted upon.
Let’s think of this summit as our time for us to make an indelible mark on our nation’s dementia care history – for us to take scores of bold and brave steps to help to bridge the massive gap that currently exists in our nation between the dramatic needs to provide the best care for those living with dementia – and to their families and caregivers – all for their “well-being.”
Yet, what we mostly hear about on a regular (even daily) basis are the steady and unending requests from so many individuals and groups to donate bucks that are specifically earmarked for research. Yes, I believe that preventive and curative research is absolutely necessary to do, but not at the expense of neglecting the many millions that are currently living with dementia, and their carers.
Steady advocacy and education has clearly been out there on dementia for decades — but I ask: Has or is this continuous flow of information and education adequately been changing the culture and attitudes that exist within the United States Congress (and many individuals, philanthropic groups and the businesses in this country) to act efficiently and aggressively with the funding that is needed today to reach NAPA’s goals and missions? My answer to this is question is sadly a clear no.
On June 5th of this year, less than a month ago, one of the Senate’s top champions for Alzheimer’s and other dementias, Florida Senator Bill Nelson, spoke in the Senate Chambers and he stated that “We must initiate a global conversation about Alzheimer’s and other dementias…” Senator Nelson meant well when he addressed the Senate, but we all know that these conversations have been going on for decades.
It is time for all of us, including all of the legislators around the country, to put a stop to these repetitive conversations of information that is all too well-known and acknowledged — and to replace this seemingly endless talk with action-oriented debates and the funding that is needed to best achieve our nation’s dementia care and research goals.
Make no mistake about it — the dementia tsunami that many refer to is already upon us. It is here in this room with us right now (I see and feel it), and we are all living with it.
Which legislators will be outspoken, forthright and have the political guts to take any potential political risks to stand at a lectern in the Chambers of the U.S. Congress and insist that the necessary funding be allocated right now?
No legislator to my knowledge has stepped forward to take the reins to the degree that is necessary – along with their taking a comprehensive view of all that is needed in the world of dementia — including all aspects of the appropriate care and research.
Currently, as you know, House Resolution 4351 (The Alzheimer’s Accountability Act of 2014) is before Congress. It states:
“This resolution amends the National Alzheimer’s Project Act to require the Director of the NIH, for each fiscal year through FY2025, to submit to the President for review and transmittal to Congress… an annual budget estimate… for the NIH initiatives under the Act.”
If this resolution passes (and I am confident that it will), will Congress be ready to appropriate the major funds that are needed now, this year, and for the years to come – and will NAPA assertively state to the President and Congress that billions are needed at this moment in time, without waiting for years?
I know that a few years ago the Alzheimer’s Association had been requesting $2-billion in annual funding — but when that was not acted upon for several years, the association reduced what it was asking for to a $100-million increase in funding – to an amount that is not close to the $2-billion. I am not inferring that $2-billion is an adequate amount; I am just using this as example of how the Congress has not acted.
I am not satisfied by seeing legislators behaving in a partisan manner over such a major healthcare problem and crisis.
I am not satisfied when I see members of Congress make token appearances at meeting or conferences, or making speeches, without their standing up for the care and funding that is necessary — with enthusiastic and passionate strength.
I am not satisfied by some members of Congress who may be playing a game with us and the dementia crisis — all the while we may be kowtowed to with their using some patronizing verbiage (and not funding) that simply is delaying progress.
So, let me finish up by stating what one of my top dreams and action items is.
It is long overdue for us to be at the White House with President Obama, along with the leaders in the U.S. Congress and individuals from the many groups and organizations — and most importantly have many with us who are in the various stages of dementia — together with their families or carers. The word collaboration comes right to mind.
I believe that we need the face of the President and leaders of the Congress and Senate to help all of us to robustly wage the War Against Dementia. I praise the President and other legislators for the actions that they have already taken, but it is time for the next steps, without any partisan politics muddying the waters that lead to needless delays.
Multifaceted and complex challenges certainly lie before us. I, along with others, have said for years now that it’s time for us to declare a War on Dementia, on all fronts. And this war must revitalize and accelerate what has been accomplished to date. I feel that we are all up to this challenge – but is Congress?
Let’s make this a day that helps (together with the majority of other individuals and groups as was mentioned) to set a memorable agenda that will bring the U.S. Congress and the entire world of dementia care and research past the tipping point.
This speech has been edited and condensed. Read the full version here