National Alzheimer's Project Act

The numbers are depressing- 5.9 million Americans are living with Alzheimer's disease right now, and someone new is diagnosed every 69 seconds.  Out of the 10 most common causes of death, it is the only one that isn't preventable, treatable, or curable.  It strikes me as odd, then, that until this year there was no concrete, centralized plan to combat this disease in our country.  The Alzheimer's Plan of Australia came out in 2006, the French Alzheimer's Plan was signed in 2008 and several other countries have followed with their own.  Finally, in January 2011 Congress passed the National Alzheimer's Project Act, a "coordinated national strategy to confront one of America's most feared and costly diseases."  NAPA is supposed to spell out how we, as a country, not only accommodate but care for the millions of people with the disease and their families and loved ones.  Still in it's infancy, it builds on the work of the Alzheimer's Association and the Alzheimer's Study Group and brings in representatives from the Department of Health and Human Services.  To their credit, the creators realized that nobody knew the disease more intimately than the people actually living with it and have been sponsoring NAPA Input Listening Sessions around the country to ask for advice and suggestions.  Earlier this week I participated in one of the sessions at a downtown hotel and was honored to have the opportunity to speak. 

It had already been an emotional day.  I had a care plan conference at Maryhaven, Dad's nursing home, earlier in the afternoon and had only a minute to run in and say hi to him afterwards.  He was sitting in the activity room with the rest of the residents, watching a John Denver video.  I cringed at the irony of them hearing "take me home," when for him that would be the ultimate gift.  Every time I come he says, "canwegohomenow? canwegohomenow?"  I don't know what his idea of "home" is, but I am certain it's not a nursing home.  I ignored Mr. Denver and as I walked over to Dad his eyes followed me.  When I got close enough he grabbed my hand and mumbled "Iloveyouforever," which is what I always say to him when I leave.  So for him to say it was incredibly powerful, and by the time I raced home and hopped on the El I was already a little teary.  I got to the hotel and was whisked down to one of the large conference rooms.  There were representatives from the Alzheimer's Association milling around, and I recognized the VP of Communications and the Special Events Coordinator, two women I met when I did a fundraiser with the association last year.  We talked and caught up for a few minutes, then everybody was asked to sit down.  We were welcomed by Harry Johns, the CEO of the association, Erna Colborn, the president of the Greater Illinois chapter, and representatives from the Department of Health and Human Services.  There was a recorded welcome by President Obama, assuring us that he would back NAPA and understood the importance of it.  Then it was our turn to speak.  Out of the 200 or so people in the audience, 21 of us got up to tell our stories and share our ideas.  I normally have no problem with public speaking, but when it was my turn I could feel my voice quiver. 

"Forlorn, discouraged and despondent, he spends his days in a reclined gerichair, mumbling and swearing at the memories, or lack thereof, that plague his thoughts....Alzheimer's disease is a thief.  It slowly, painfully robs the victim of his very existence.  It's not just the memory that fails, it's the actual ability to process and understand daily tasks....we need proper funding for research into prevention, education for medical professionals and resources for families and caregivers....(people with Alzheimer's) need to be treated with respect, courtesy and compassion and not be stigmatized for their symptoms."

I had hoped to astutely but passionately cover the issues that were the most widespread, and judging from the applause at the end I think I did a decent job.  Other people talked about the importance of early detection, specific problems with early-onset, assisted living deserts (communities that have no access to them) and tax incentives for caregivers who have given up jobs and made other lifestyle sacrifices to care for their loved ones.  In spite of the painful stories that were shared, I felt that there was a lot of positive, productive energy in the room.  After we all spoke, Rep. Mary Flowers from Illinois got up and promised that as chairwoman of the Health Care Availability Access committee, she would lead forums and sessions in the state and push to make funding into research a priority.  The evening ended with more words from Mr. Johns and Ms. Colborn, and a reminder that we could still submit ideas and suggestions online. 

Sitting in the audience and listening to the other family members, friends and caregivers speak was incredibly moving, and for the second time that day I teared up.  There was the 17 year old whose mother was diagnosed with early-onset at 53, the woman who lost both of her parents to the disease within seven days of each other, and the man who stood at the microphone stammering for 30 seconds before his wife jumped in and spoke for him since he was having trouble remembering how to.  I hope that by hearing our stories and seeing us as real people and families and not just numbers and statistics, the people on the NAPA planning committee will be moved and impacted enough to push forward quickly and urgently, and we can begin to make progress on finding a cure to this harrowing disease.