Alzheimer's disease affects more than the elderly.
Karen Henley lost her beloved husband, Michael, in 2012 after an 11-year battle with Alzheimer's, which was diagnosed when he was just 36.
"We just had young children, we just bought a house. Who had time to save money? It's not like he was 70 or 80 with retirement benefits or money to fall back on," she said. "Physically, financially and emotionally it was just all three, across the board, the most difficult thing."
Karen quickly turned into the caretaker after her husband was turned away from in-home help because he was too young.
The debilitating disease is the sixth-leading cause of death in the United States, according to the Long Island Alzheimer's Foundation, which is seeing the disease diagnosed in more people between the ages of 30 and 50 but they, too, have trouble seeking services.
Rep. Kathleen Rice, D-N.Y., is hoping to change that. She is introducing The Younger-Onset Alzheimer's Disease Parity Act. If passed, it would give younger people diagnosed access to the care they need.
"The Older Americans Act was passed in 1965—there was no such thing as early-onset Alzheimer's," Rice said. "We have a growing population of people who are being diagnosed in their 30s and their 40s and their 50s, and they can't access these kinds of programs and the care that older Americans can avail themselves of."
The Long Island Alzheimer's Foundation in Westbury helps up to 60 people a day. They expanded their services and now offer a weekend drop-off program to give caregivers much-needed relief.
"This bill would be important because now seeing these many people diagnosed earlier and earlier, they need to be able to have access to services," foundation executive director Tori Cohen said.
They're services that Michael's son, Brandon says should and hopefully will be offered to younger-onset participants if the bill is passed.
"My father was 36 when he was diagnosed—that's 11 years away from me," Henley said. "It's something I don't want to think about but it's something realistically I do have to consider."
Rice is looking for a Republican cosponsor of the bill and plans to bring it to the table in the fall.