New bill would aid early-onset Alzheimer's patients, families

Rep. Kathleen Rice is introducing a bill that would expand the Older Americans Act to include younger-onset Alzheimer’s patients.

Rice (D-Garden City) made the announcement Monday at the Long Island Alzheimer’s Foundation in Westbury. The Younger-Onset Alzheimer’s Disease Parity Act would amend the Older Americans Act to include individuals who are under age 60 and living with younger or early-onset Alzheimer’s or other degenerative diseases. The proposed bill, which Rice said she will submit Tuesday to the House clerk’s office, adds coverage to include those “with Alzheimer’s disease or a related disorder with neurological and organic brain dysfunction who has not attained 60 years of age.’’

The Alzheimer’s Association estimates that about  5 percent of the more than five million Americans living with Alzheimer’s were diagnosed in their 30s, 40s or 50s.

The Older Americans Act was passed in 1965 and provides financial support to a range of home- and community-based programs for people age 60 and older, including meals on wheels, transportation services and adult day care. Funding for the act for the 2018 fiscal year was just under $2.04 billion. Expanding the act would increase that amount, Rice said, but in the end, it costs government less to provide services to keep Alzheimer’s patients in their homes rather than in nursing homes.

“We need to address the needs of these American families who are being crushed financially in trying to care for a loved one,” said Rice, who is seeking a Republican co-sponsor for the bill. “You shouldn’t have to become impoverished just to keep a loved one at home and enable them to live a life of dignity.”

Tori Cohen, executive director of the Long Island Alzheimer’s Foundation, said her organization receives about $125,000 a year via the act, providing day care for those with the disease and respite for caregivers, among other services. If Rice’s bill passes, it would allow the foundation to target specific programming for younger patients, she said.

“This could open more doors to get more help to those who need it,” Cohen said.

Rice, whose mother died in 2006 at age 78 after a long battle with Alzheimer’s, said she was moved to create the bill after hearing the story of Westbury's Karen Henley, whose husband, Mike, was diagnosed with early-onset Alzheimer’s at 36. The Henley family was featured in Newsday’s 2009 series, "Alzheimer's: The Love and the Heartbreak." Henley, who was working full time and raising two young children, struggled to find programming and care for her husband because of his age.

“I thought if this disease doesn’t discriminate, then why do government agencies?” she said. Mike Henley died in 2012 at 47.

Brandon Henley, who was  7 years old when his father was diagnosed, said there needs to be more done for young Alzheimer’s patients and their caregivers, and Rice’s bill is a “massive leap in the right direction” that “restores hope for the hopeless.”

Karen Henley, who has been an active voice in raising awareness of early-onset Alzheimer’s, including traveling to Washington to speak with members of Congress, said that when Rice called to tell her of the bill, she burst into tears.

“This is huge for so many people,” she said. “For me, it’s like Mike’s gift to all the other families out there that they won’t have to struggle like we did.”