Today, the U.S. Department of Health & Human Services released our country’s first National Alzheimer’s Plan, which sets a deadline of 2025 for stopping Alzheimer’s Disease. In this piece, Dr. Stephen Hume offers a personal perspective on the plan — as an advocate and as someone with the disease.
It isn’t every day that I am asked to sit in a room and listen to twenty-four highly educated and dedicated professionals plan my future. This opportunity presented itself when I was invited to attend the National Alzheimer’s Project Act (NAPA) advisory council meeting in Washington, D.C. on January 17, 2012.
Four and a half years ago, my partner Candy and I sat in a small office at our regional medical center waiting for the chief of neurology to enter and give us a diagnosis.
I knew there was something wrong with my cognitive functioning and had undergone an extensive testing regimen in the proceeding weeks. I was very anxious. Candy had tried to reassure me with what might be causing my symptoms, but had not lessened my fear.
The doctor came in, sat down and said in a kind but matter of fact manner; we’ve ruled out everything we can fix – you have early stage Alzheimer’s disease.
At that moment, I shut my eyes and saw a room full of open doors each representing a future path for my life. Suddenly, they all slammed shut and I was in the dark. I could hear Candy’s voice calling me back to the room and heard her ask the doctor about the course of the disease.
He told me, “Your world will shrink until it becomes the size of the chair you are sitting in”. I was 60 years old and had just been given what to me was a death sentence –- an end to all I valued -– my intellect and the close connections I had with others.
At the time of my diagnosis, I was employed as a behavioral healthcare executive and a practicing psychologist. It took several years for my symptoms to reach a level where I was forced to accept that I could no longer do the work I loved and I resigned my position eight weeks after my diagnosis.
My Partner of 13 years realized that I had significant cognitive problems long before I did but we were both in shock when my neurologist told us of the diagnosis.
We realized that our lives were forever changed. Not only do I have a disease that will rob us of our relationship and our dreams for the future, but I no longer can provide the income that was to make those dreams a reality — we had not planned for this to happen.
It was also clear that she would have to work well beyond her planned retirement to pay for services that would allow me to remain at home in a safe and dignified way. I also know that she faces years of stressful caregiving as I continue to decline.
So, after I left work, I went home and sat in a chair literally waiting to die. After three months, I realized that even though I was going to die from this disease, I had to learn to live with it as well.
As a psychologist I had spent my career advocating for others with mental illness so turning to the Alzheimer’s Association for support and opportunities to advocate came naturally. Through my work with the Association I have been able to raise concern and awareness of Alzheimer’s across the country.
I speak at caregiver and professional education conferences, legislative assemblies and have even spoken at the White House. Three years ago, I was elected to the Alzheimer’s Association national board of directors, which has given me the opportunity to help shape policy and programming for the 5.4 million Americans living with Alzheimer’s like myself.
As a behavioral health professional, I knew that advocacy was hard work and took time. I have to say, however, that I was surprised at how difficult it was to raise concerns about Alzheimer’s Disease despite the fact that it is the 6th leading cause of death in the U.S., costs the government $140 billion dollars a year, and is the only major disease without a cure, prevention or even a way to slow its progression.
Only recently have we begun to talk about Alzheimer’s publicly. The statistics are staggering: 5.4 million Americans with the disease; someone develops the disease every 68 seconds; 1 out of 8 baby boomers will develop the disease; and by 2050, this one disease will bankrupt Medicare and Medicaid if nothing is done. Why won’t more people listen?
Fast forward to January 17, 2012 and I am at the NAPA advisory council meeting where I find myself in a small conference room at the U.S. Department of Health and Human Services (HHS) building. In the room sitting around a U-shaped table are the Advisory Council members. Roughly half are from the federal government and the remaining advisors are from the private sector.
The formation of the Council was mandated by the passage of the National Alzheimer’s Project Act, which was signed into law by President Obama in January of 2011. NAPA called for the creation of a National Alzheimer’s Plan to comprehensively address the Alzheimer’s epidemic.
This was the Council’s second meeting and it was apparent that the members were excited. HHS had just released an initial framework for the National Plan that would follow later in the year.
During the day and a half proceedings, I listened intently and, for the first time in 4 years, felt hopeful. I truly felt that the Council and HHS were invested in producing an effective and couragous plan that would truly affect the course of this disease.
As the sub-committees met and wrestled with the needs of patients and caregivers, the issues of ‘how long it will take’ and ‘cost’ were raised. These concerns were listened to but were always brought back to the urgent reality of Alzheimer’s and the need for action now.
This sentiment was later echoed by HHS when they announced the “We Can’t Wait: Taking Action on Alzheimer’s Disease” initiative.
It was during one of the committee meetings that a member raised the issue of difficulty in funding services for patients and in increasing research dollars. I immediately thought of our advocacy challenges and waited to see what the members thought.
Someone spoke up and said that it had to do with the stigma, misconceptions and myths associated with the disease. Others agreed.
As the meeting ended, I thought about that remark and realized that despite the care that went into crafting the NAPA legislation and the excellent work of the Council, we didn’t need to look beyond this room to understand the stigma, myths and misperceptions.
I was attending a meeting where people were planning my future and the future of all those with Alzheimer’s, yet there was no one with the disease at the table to lend a unique perspective and inform this critical process.
Now that the National Alzheimer’s Plan has been released — and an ambitious target for the end of the disease has been set (the year 2025) — it is my hope that as the work goes on room at the table will be made for more people living with the disease to have a direct and ongoing voice in our own futures.
Because, if we are all successful together, millions of American wives, husbands, sisters and brothers will be freed from the personal and financial devastation of this terrible disease.