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Anniversary of Sweeping Executive Order Marks ‘Pivotal’ Moment for Caregivers

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En español | When Jim Mangi first became a caregiver to his wife, Kathleen Schmidt, who has Alzheimer’s, he says he felt like many other caregivers.

“Completely unprepared. Clueless,” recalled Mangi, 75, of Saline, Michigan. “I didn’t know what to do and I didn’t know where to turn.”

One year ago today, President Joe Biden announced a sweeping executive order on caregiving to help make it easier for people like Mangi. The order recognizes family caregivers as a national priority and aims to better include and support them through federal programs.

"For decades, family caregivers have struggled to help loved ones in need, lacking financial and educational support,” Nancy LeaMond, AARP’s chief advocacy officer, said in a statement to mark the anniversary. “The Care Executive Order, issued by the White House one year ago today, marked an opportunity to start turning the tides.”

The executive order followed the release of the federal government’s first national strategy to support the nation’s 48 million family caregivers and has led to several AARP-supported caregiving improvements over the past year. These include programs to provide home-care services for veterans and stronger efforts to help hospitals engage with family caregivers when their loved one is discharged.

The Centers for Medicare & Medicaid Services also is testing a new AARP-backed dementia care model designed to improve the experience for family caregivers like Mangi. The initiative pairs dementia patients with a care navigator and access to a 24-hour helpline and provides training and other support services for caregivers — assistance that Mangi would have welcomed.

He said he spent years “just kind of floundering around trying to figure out how to take care of” his wife and “haphazardly coming across any kind of resource” that could help. He said caregiver education should begin immediately after diagnosis "because that initial period of clueless anxiety and hopelessness is terrible."

Megan O’Reilly, vice president for health and family for AARP government affairs, said the executive order marked a “pivotal moment” for caregiving, casting a national spotlight on the important role family caregivers have long played in “holding up their families.” According to a 2023 AARP report, family caregivers provide an estimated $600 billion in unpaid labor each year, doing everything from medical tasks to helping prepare meals and pay bills.

“I feel like in many ways the executive order was a catalyst for federal action,” O’Reilly said. For example, in the past year, Medicare finalized an AARP-backed rule allowing health professionals for the first time to be paid for time spent solely training family caregivers. She also pointed to the introduction of bipartisan legislation, such as a bill that would allow caregivers to use health savings accounts for their parents’ medical bills and others that would help caregivers navigate Medicare.

AARP continues to push federal lawmakers to pass the Credit for Caring Act, which would create a federal tax credit of up to $5,000 to help cover caregivers’ out-of-pocket expenses. And we’re fighting at the state and federal level for paid family and sick leave policies and additional financial support for caregivers.

“As our nation ages, providing greater support for family caregivers — who often spend more than $7,200 out of pocket annually — must be an even greater priority,” AARP's LeaMond said. “We look forward to continuing working with the Administration, Congress, and state legislatures across the country to further deliver relief to family caregivers.”

Read more about our caregiving advocacy and learn about AARP’s resources for caregivers.

Natalie Missakian covers federal and state policy and writes AARP’s Fighting for You Every Day blog. She previously worked as a reporter for the New Haven Register and daily newspapers in Ohio. She has also written for the AARP Bulletin, the Hartford Business Journal and other publications.

Also of Interest:

AARP Poll: Voters Want More Support from Congress for Family Caregivers
How to Set Boundaries as a Family Caregiver
How to Find a Caregiver Support Group That’s Right for You

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