Lawmakers explore expanding resources for caregivers of loved ones with Alzheimer’s disease

WASHINGTON — More than six million Americans are living with Alzheimer’s disease and many are cared for by a family member or loved one.

A Senate panel heard testimony Thursday about the challenges those loved ones face and the need for more resources to help the caregivers and the person living with the illness.

“An investment in home and community-based services is long overdue to help families who struggle day in and day out to care for their family members, friends, and neighbors,” said Sen. Bob Casey (D-Penn.), Chair of the Special Committee on Aging.

More than 11 million Americans provide unpaid care for people with Alzheimer’s disease or dementia, according to the Alzheimer’s Association.

Katelyn Montanez knows about these challenges firsthand.

Her father Luis was diagnosed with Alzheimer’s disease when he was 54-years-old and she was just 22 at the time.

“I’m a full-time mother with a full-time job and I’m a full-time caregiver,” Montanez said.

Montanez said her father was denied at-home services early on because he was still able to do some things on his own.

Her family watched his illness progress with limited help.

“There had been numerous instances where my father was confused and as a result, ended up wandering and becoming lost,” said Montanez.

Thankfully, Montanez said seven months ago, her father was approved for help through Pennsylvania’s Waiver Program.

He now gets aides for three hours a day and gets meals on wheels.

“Katelyn’s story and those like hers, compel us to invest in these services,” said Sen. Casey.

Members of both parties pointed to the need for more resources.

“There’s no doubt that the COVID impact on Alzheimer’s and the caregivers was devastating,” said Sen. Tim Scott (R-SC). “During the first wave of COVID, we saw Alzheimer’s and dementia deaths increase by 18 percent nationwide. Far, far too many people.”

Doctors who specialize in Alzheimer’s care pushed for more investments in preventative screening services and research.

“Creating a dementia-aware society where cognitive screening is normalized will help to reduce the stigma,” said Dr. Mark Supiano with the University of Utah School of Medicine. “There’s a special need to support hands-on caregivers and the direct care workforce in both home and long care settings to equip them to care for loved ones with dementia.”

A bipartisan group of lawmakers introduced the Comprehensive Care for Alzheimer’s Act last month.

It would create a new way to fund dementia care through Medicare.

For Montanez, these kinds of legislative actions are essential for helping people like her father.

“I will continue to be the voice for the people who have lost theirs,” said Montanez. “Congress must ensure all communities have access to high quality culturally appropriate services and support.”