NewsTeam 10 InvestigatesThe Cost of Care


The Cost of Care: Change at the federal level

proposed federal legislation cost of care
Posted at 5:29 PM, Nov 10, 2023
and last updated 2023-11-10 21:02:09-05

SAN DIEGO (KGTV) — Members of Congress are responding to ABC 10News' "The Cost of Care" series.

The series reveals the emotional and financial challenges for people living with Alzheimer's disease and dementia.

They're calling for sweeping changes from the federal government and help for loved ones acting as caregivers.

Response for leaders in Congress

"Watching the stories such as what we have just viewed in the presentation that you just made... you cannot help but have your heart just pound at what they are going through," said California Representative Maxine Waters. "The tears that must be shed every day."

From her office in Los Angeles, the longtime congresswoman for California's 43rd district reacted to the series of stories digging deep into the emotional and financial cost of care.

The series documents the life-altering costs families across the country face when their loved ones struggle with Alzheimer's and dementia.

"We must help caregivers," Waters said. "We must do more to assist these families. Not only are families going broke, but the time that must be put into this care is such that people can't go to work every day. They can't do much of anything."

According to the Alzheimer's Association, more than 100,000 people in San Diego are living with dementia. Across the country, that number is more than 7 million.

It's estimated that Alzheimer's and other forms of dementia will cost the United States $345 billion in 2023 alone.

ABC 10News reporter Adam Racusin asked Rep. Waters if she believes the federal government needs to come in and help fix the system of care.

"Oh, absolutely," Waters said. "I heard [USC Professor Julie Zissimopoulos], and I believe the question that she was answering and it is not that the system has failed us; the system has never been in place. We don't have it in place to deal with caregiving, and dementia and Alzheimer's," Waters said. "We have not in this country really developed from the federal level, working with the states, the kind of resources that are needed in order not only to continue the work that many of these doctors and practitioners are doing but just caregiving. This is so important."

California Congressmember Linda Sanchez echoes Waters's feelings, saying it's time for lawmakers to step in.

"It is an issue the federal government needs to be concerned about because our population is aging," Sanchez said. "People are living longer than ever before, and if we don't have these interventions or these support systems in place, especially in the caregiving space, if we are not training enough caregivers, there's going to be a shortage and there's going to be impacts. It's going to impact families that have loved ones dealing with this disease," she said.

For Sanchez, the push for federal assistance to patients and their families is personal.

"Both of my parents suffered with Alzheimer's," she said. "My father passed with Alzheimer's, and my mother currently suffers with the disease. I've just seen how devastating it can be for families and how difficult It can be for family caregivers."

Sanchez and Waters have proposed several laws to help caregivers and treatment.

The proposals would encourage early assessment and diagnosis of Alzheimer's and related dementias, expand aid to caregivers and create training and support services for families with loved ones living with memory loss.

In a press release for the CHANGE ACT (Concentrating on High-Value Alzheimer's Needs to Get to an End), Sanchez said, "I am proud to work with my colleagues to re-introduce this bipartisan, bicameral legislation to promote and streamline early assessment and diagnosis. The CHANGE Act offers crucial assistance to patients and their family caregivers. With millions more Americans, particularly people of color, expected to be diagnosed in the coming decades, we have no time to waste."

The release noted that in 2021, Alzheimer's disease was the seventh-leading cause of death in America. It is estimated that Black Americans are twice as likely and Latinos are 1.5 times as likely to develop Alzheimer's.

"The CHANGE Act supports, incentivizes, and authorizes high-value Alzheimer's patient care, caregiver support, and research initiatives to improve prevention and treatment and move toward a cure for the disease," the release said.

After watching the ABC 10News story, Rep. Waters sent the following message to her colleagues in Congress who haven't supported her efforts:

"We need to put the money up that's needed to do it, and we're just going to have to get more confrontational about it and demand it," she said. "Make more demands and call them out and see what we can do. We can't lump this in with 'We need to cut back on government.' It's not fair."

Rep. Paul Tonko from New York also called on Congress to act.

In a statement sent to 10News, he said, in part, "Congress can make a real difference in the lives of millions of Americans who are living with Alzheimer's disease, and the millions more who love and care for them, by making treatment more affordable, accessible, and comprehensive. That is exactly what I am pushing to do through the National Alzheimer's Project Act (NAPA) Reauthorization Act [], Comprehensive Care for Alzheimer's Act [], and other bipartisan bills. I'll continue working to advance legislation that delivers hope to those suffering from this disease."