FOR IMMEDIATE RELEASE | April 16, 2008
Experts Urge Increased Services for Young Onset Alzheimer’s Disease
NEW YORK, NY—“You’re looking at two men up here who aren’t that old,” declared Jim Mueller, 39, referring to himself and Brian Kammerer, 50, of Massapequa Park. “I came here today as a younger person to tell you that it’s a reality out there that we can get this.”
Mueller of Villa Park, IL and Kammerer stood out as the new—and younger—face of Alzheimer’s disease at a Young Onset Alzheimer’s Disease Conference in New York on April 11 presented by the Alzheimer’s Foundation of America (AFA), a national organization based in NY, and the Sid Jacobson JCC, East Hills, NY.
At the conference, experts called on the nation to recognize that Alzheimer’s disease and other forms of dementia do not only affect older people and that organizations must provide programs and services geared toward younger individuals and their families affected by the disease.
It is estimated that about a half million people under age 65—even those in their 30’s, have Alzheimer’s disease or some other form of dementia; it is referred to as young onset.
“Hopefully, this conference stirs compassion…that more needs to be done,” said Eric J. Hall, AFA’s president and CEO.
Richard E. Powers, M.D., chairman of AFA’s Medical Advisory Board, likewise called for a national dialogue on this issue, noting: “We need a continuum of care that takes into account the special needs of not only older individuals, but also younger individuals who will develop this.”
Peter Davies, Ph.D., scientific director of the Litwin-Zucker Research Center for the Study of Alzheimer’s Disease and Memory Disorders at The Feinstein Institute for Medical Research, Manhasset, NY, pointed out his concern about another gap; he noted that clinical trials for Alzheimer’s disease typically exclude those under 60, thereby limiting research efforts.
Dispelling popular belief, he said that the vast majority of young onset Alzheimer’s disease does not reflect an obvious family history. His research found that of 58 individuals with young onset who died before age 60, only four were truly genetic Alzheimer’s disease.
On a social services front, Connie Wasserman, director of senior services at the Sid Jacobson JCC, urged more funding for programs and services specifically for this population.
“The sooner that everyone recognizes that this disease can affect younger people, hopefully people will receive a diagnosis earlier and more accurately, and it will make people realize the need for programs,” she said.
Wasserman hopes the JCC’s “Let’s Do Lunch” program, one of the nation’s few programs tailored for individuals with young onset Alzheimer’s disease, will serve as a model for program replication across the country. Let’s Do Lunch includes a support group and much more “active” programming like basketball and aerobics, as well as more traditional music, art and pet therapies. It has served 45 clients since it began three years ago.
“We’re continually learning from our younger clients how to serve them. We’ve had no templates so we’ve had to develop them,” she said.
Kathleen Kammerer, whose husband, Brian, attends “Let’s Do Lunch,” candidly elaborated on the medical, financial and practical challenges that emerge when Alzheimer’s disease occurs at a younger age.
Her husband began showing symptoms while working as a former chief financial officer of a Wall Street firm, but she said that doctors dismissed a lot of his symptoms because of his age.
Today, five years later, “He can’t think the way he used to. He can read but he doesn’t understand what he’s reading. He can’t watch TV because he doesn’t understand,” she said.
Kammerer went back to work full-time after her husband’s diagnosis and relies on the couple’s three teenage children to pick up responsibilities around the house.
“They have been robbed of their childhood,” she said. “They have a lot more on their plates than any child needs to have.”
An AFA survey released last month found that approximately three of five “sandwich caregivers,” those caring for a loved one with Alzheimer’s disease while raising children under 21, are involved in caregiving.
The Alzheimer’s Foundation of America is a nonprofit organization based in New York City that focuses on providing optimal care to individuals with Alzheimer’s disease and related illnesses, and their families, and unites 800 member organizations nationwide that provide hands-on programs. AFA’s services include a toll-free hot line with counseling by licensed social workers, a free caregiver magazine, and National Memory Screening Day. For information, call 866-AFA-8484 or visit www.alzfdn.org.The Sid Jacobson JCC, based in East Hills, NY, provides comprehensive programs and services for all ages based on Jewish values, traditions, heritage and culture, with the goal of enriching the lives of individuals and families in its community. For more information, call 516-484-1545 or visit www.sjjcc.org.
Contact: Carol Steinberg