By P.C. Robinson
There were tears, there were smiles, but mostly there was hope as caregivers and at least one patient collected at the Senior Center of the Chathams on Wednesday, Sept. 5, to share stories and sound off on the federal government's ambitious plan to effectively treat and prevent Alzheimer's disease and related dementias by 2025, just 13 years from now.
About 80 people attended the information forum, hosted by the Denville-based Greater New Jersey Chapter of the Alzheimer's Association.
Specifically, Chapter President and Chief Executive Officer Lawrence Brooks and others wanted to update the public on the national plan as called for in the National Alzheimer's Project Act. The act was signed into law in January 2011, and responsibility for the plan's fulfillment now rests with the National Institutes of Health.
Four hundred and fifty million dollars in start up costs were approved by Congress for fiscal year 2012, with the Obama administration requesting another $100 million for fiscal year 2013. The federal fiscal year runs from October 1 to Sept. 30.
During the forum, U.S. Rep. Rodney Frelinghuysen, R-11 of Harding Township predicted the additional funding would be endorsed on both sides of the aisle in Congress since legislators were "well aware" of the impact that the disease had on families.
"Everybody's committed to eradicating Alzheimer's," he said.
When that funding will be appropriated remains to be seen, however. Thanks to a Congressional recess and a fiscal deadline, legislators this month are more likely to approve a continuing resolution that leaves the federal budget at last year's levels for six months, said Frelinghuysen, although 2013 appropriations might be approved before the end of this calendar year.
Frelinghuysen acknowledged that, while the emphasis has been providing federal funding for other diseases like prostate and breast cancer, Alzheimer's "has very much come into its own.
"People are acutely aware of its (Alzheimer's) devastation," he said
The $100 million proposed provides $80 million for additional research, $10.5 million for caregiver support, $4.2 million for public awareness of the disease, $4 million for support provider education programs, and $1.3 million for improved data collection.
"The Long Goodbye'
Those who spoke during the 90-minute forum urged accelerated funding for numerous issues associated with the disease, often referred to as "The Long Goodbye" and "The Long Funeral."
Among other things, they stressed the need for educating healthcare workers on how better to treat Alzheimer's patients, to the special needs of those diagnosed with early-onset Alzheimer's, often considered a separate disease with its own challenges.
Teary-eyed men told of wives, in their 50s, becoming like children, with young children not quite teens turning into caregivers.
Some spoke of the heartbreak of watching loved ones, first unable to remember little things, finally losing the ability to remember the names and faces.
Marie Demarais of Phillipsburg recalled her mother as an "incredible woman", a former librarian rendered without speech, thanks to Alzherimer's. "I have to be her voice," she said.
Demarais has breakfast with her mother daily in her nursing home, giving her a front-row seat to how some health workers often mistreat those with the disease.
"They need to get a clue," she said, adding that some speak to patients in such a manner that "it makes my skin crawl.
"Awareness needs to be addressed in a big way, sometimes in a startling way," she said.
Her mother, she said, received her college degree cum laude at the age of 64.
"Now she's spoken to as though she has an IQ of 50," she said.
Jeanine Wilson of New Vernon broke into tears as, reading from a typed statement, she described becoming legal guardian for her 77-year-old father, who was diagnosed five years ago. "I want to give a voice to my father because he no longer has one," she said.
Wilson became so emotional she had to sit down, so that the chapter's public policy coordinator, Debbie Warburton volunteered to read the rest of her statement.
In that statement, Wilson described an incident in which her father had to be taken for emergency treatment at Morristown Medical Center.
Like Demarais, she described the poor treatment he received there. "My father had no voice that day. He screamed, grunted and hit."
One attendee-caregiver had a suggestion for making the National Plan better effective.
Neil Ullman of Florham Park, whose wife, Gail, has the disease, said he hoped the National Plan would provide ways to better benchmark results. He also wants to see planning stages better defined so families can know "what's going to happen" next.
Ironically, it was a patient who gave the evening its most uplifting tone.
David Butler of Washington Borough said he was recently diagnosed with "mild vascular dementia" and had so many other medical problems his doctor called him "a walking time bomb."
He praised Association members for their work.
"I just hope and pray you keep giving more courses and reaching more people through your association," he said.
According to the Alzheimer's Association, 5.2 million Americans ages 65 and over, and 200,000 under the age of 65 are affected by the disease. Up to 16 million could be affected by 2050.
In addition, costs associated with the disease are expected by that year to climb to $1.1 trillion, with costs to Medicare and Medicaid increasing almost 500 percent, according to the association.
For more information on Alzheimer's disease and other forms of dementia, or on how to get involved, visit http://www.alz.org/nj/