Washington, D.C.—In an effort to help the approximately 200,000 Americans suffering from early-onset Alzheimer’s disease, U.S. Senators Susan Collins (R-ME), Bob Casey (D-PA), Shelley Moore Capito (R-WV), and Doug Jones (D-AL) introduced the Younger-Onset Alzheimer’s Disease Act today. A companion bill was also introduced by Congresswoman Kathleen Rice (D-NY) and Congressman Peter King (R-NY) in the House of Representatives. The bipartisan legislation would ensure the availability of programs and services for those with Alzheimer’s by allowing patients younger than age 60 to access them.
“Whether someone is older than 60 or younger than 60 when he or she is diagnosed with Alzheimer’s, the progression of this terrible disease is the same,” said Senator Collins, a founder and co-chair of the Congressional Task Force on Alzheimer's Disease. “Since Alzheimer’s is not restricted by age, neither should the programs designed to assist these Americans and their families. Our legislation would ensure access to these critical services to patients younger than 60 so that all Americans with Alzheimer’s have access to the care, support, and resources they need.”
“With more than 5 million currently living with Alzheimer’s in the U.S., including upwards of 28,000 in Maine the Alzheimer’s Association and its advocacy arm, the Alzheimer’s Impact Movement (AIM), thank Senator Collins for leading this important effort to ensure all Americans living with disease have access to the same high-quality care and support services, regardless of age,” said Robert Egge, Alzheimer's Association chief public policy officer and AIM executive director. “All members of Congress should join Sen. Collins by supporting the passage of the Younger-Onset Alzheimer’s Disease Act to reduce disparities in caring for, treating and supporting those aged 60 and younger who are living with Alzheimer’s.”
“Part of being an advocate is to fight the stigma. Alzheimer’s still has a stigma and people don’t know what to do. If someone is diagnosed with cancer, people tend to rally around and offer support – it’s not like that with Alzheimer’s.” explains Mary Dysart Hartt, Alzheimer's Ambassador to Senator Susan Collins. “I want to raise awareness that this doesn’t just happened to elderly – my husband was diagnosed at age 62.”
The majority of patients suffering from Alzheimer’s are 65 and older, and access to available programs and services for this disease often reflect that threshold. Due to their age, younger-onset patients can face additional barriers to access the services they need to cope with their disease.
The Younger-Onset Alzheimer’s Disease Parity Act would amend the Older Americans Act to ensure that certain programs that already serve individuals with Alzheimer’s disease or related dementias can continue their program supports for those who have not attained 60 years of age. In particular, this legislation would allow the National Family Caregiver Support Program and the Long-Term Care Ombudsman Program to serve this unique population. This bill addresses a key recommendation by the National Plan to Address Alzheimer’s Disease, which called for additional services to be provided to younger adults with Alzheimer’s or a related dementia.