About 75 people from throughout New Jersey attended a town hall meeting by the Alzheimer's Association Greater New Jersey Chapter at the Wednesday.
Rep. Rodney Frelighuysen (NJ-11) discussed funding for Alzheimer's research through the National Institutes of Health from a political perspective, though his comments were brief. Mostly, he listened to the stories those gathered had to share about the disease.
Debbie Warburton, the moderator, outlined the first National Alzheimer's Plan, which was introduced in May. The plan calls for an additional $100 million towards Alzheimer's research and care in the 2013 fiscal year, appropriated toward the plan's five goals:
- to prevent and effectively treat Alzheimer's by 2025 ($80 million proposed);
- to enhance care quality and efficiency ($4 million proposed);
- to expand support for people with Alzheimer's and their families ($10.5 million proposed);
- to enhance public awareness and engagement ($4.2 million proposed);
- and to improve data to track progress ($1.3 million proposed).
Frelinghuysen said funding for Alzheimer's research was something politicians could agree on, no matter their political affiliation. "It's not a huge lift for Congress for an additional $100 million," he said.
Frelinhuysen said Congress was more likely to pass a continuing resolution for six months and continue to draft a federal budget for the 2013 fiscal year after they return from their August recess. "In terms of an increase, it may be a while before we get that," he said.
He also compared Alzheimer's research and advocacy to diseases which "have historically been better funded," such as breast cancer, prostate cancer and leukemia. By comparison, he said, "Alzheimer's, I think, has acutely come into its own" since his first congressional term.
One man at the meeting, Mike Stanford, spoke about his wife Marcia's battle with breast cancer. After a diagnosis 16 months ago, a lumpectomy and a prescription for tamoxifen, "she was basically cured. That's not an option that we see with Alzheimer's," he said.
Marcia has an early onset of Alzheimer's, which several of those at the town hall said has affected their lives. "I am her primary caregiver," Mike said. "Her secondary caregiver is my daughter Riley. ... I'm probably the only parent in America who can't wait for his daughter to get her license," he said, listing all the errands Riley does already for both her parents.
Stanford's son Ryan, 12, also helps care for his mother, but Stanford said he does not really understand what's happened to her.
Walt Leudke's wife Denise also suffers from early onset Alzheimer's and has been hospitalized for the last two years. She was diagnosed seven years ago at the age of 54. "Alzheimer's is not just an old people disease anymore," he said.
Marie Demarais of Phillipsburg spoke about her mother, Dorothy, 90, who as Alzheimer's. "I go and have breakfast with her every day," Demarais said. "I see my mom every day, but I miss her terribly."
Demarais said her mother graduated cum laude with her bachelor's degree at the age of 64. "Now I hear people talk to her as if she has an IQ of 50," she said.
When Jeanine Wilson of New Vernon stood to speak about her father, who has Alzheimer's, she began to cry and had to sit. Warburton read the remainder of her statement:
"I am here to give a voice to my father, because he no longer has one. From a very early age I remember my father taking such good care of me ... I never imagined that in my 30s I would have to do the same for him. ... I am a constant advocate for his dignity."
Several of those present spoke about the need to train medical professionals to care for people with dementia and Alzheimer's. They told stories of ER doctors and nurses and even nursing home staff members who yelled or were forceful with patients who have Alzheimer's.
Laura Holly-Dierbach, the vice president of Programs and Services for the Alzheimer's Association's Greater New Jersey Chapter said, "Ninety percent of what what we know about Alzheimer's we learned in the last 20 years." Several others said how important it is for patients to enroll in clinical trials to help find better treatments.
Alzheimer's also complicates other existing health conditions, such as diabetes, which requires patients to remember when they last ate and what they had to eat.
Attendants also spoke about the rising cost of caring for people with Alzheimer's. According to the Alzheimer's Association, as many as 16 million Americans could have Alzheimer's by the year 2050, compared with about 5.4 million in 2012.
The cost of caring for those patients could rise from $200 million today to $1.1 trillion by 2050.
Carolyn Fefferman, a senior advisor to Sen. Robert Memendez' office also attended and read a letter from Menendez, who was attending the Democratic National Convention in North Carolina.
The letter detailed the senator's experience with Alzheimer's, on both a personal and political level. His mother died after living with the disease for "18 long, difficult years."
Menendez included benefits for those with Alzheimer's in the Affordable Care Act and was a cosponsor of the National Alzheimer's Project Act, "which has significantly increased federal efforts in combating this disease."
Alzheimer's is currently the sixth leading cause of death in the United States.