3 new ways that medicare is supporting family caregivers

At first, Guthrie didn’t realize that she could ask her mother’s primary care physician to arrange for physical or occupational therapy, for help to make a home safe, for instructions to get

her mother out of the bed without injuring either one of them, or for a demonstration of wound care. “It’s a little bit of everything, but you don’t know that you need it until you’re in

that chapter,” she says. “I learned what to expect by asking people who were already on the journey.” 2. PATIENTS WITH SERIOUS CONDITIONS GET EXTRA EDUCATION The same rule also allows

Medicare to pay for what it calls principal illness navigation services to help patients and their family caregivers with high-risk illnesses such as cancer, dementia and HIV/AIDS understand

their diagnosis and decide on their health care. “It’s so easy to shut down or have no idea what to do because you’re suddenly confronted with a whole new set of people you need to see and

providers,” Brooks-LaSure says. “Not only for cancer but other serious illnesses, Medicare will pay for more of these services. “This is intended for people who are in that category where

their needs are going to be much more severe. They’re at high risk for hospitalization — everything from chronic obstructive pulmonary disease, heart disease, cancer, congestive heart

failure, AIDS, dementia and severe mental illness — to make sure that people have assistance when they are trying to navigate the health care system, which we know is more complex than we’d

all like it to be.” Brown says she would discharge patients from a hospital’s intensive care unit, asking family members what they needed to know. But they had no idea what they needed.

Getty Images 3. PILOT PROJECT BEGINS FOR DEMENTIA PATIENTS’ CAREGIVERS A test program for caregivers whose loved ones have dementia started July 1, 2024, and is expected to expand in July

2025. Called Guiding an Improved Dementia Experience (GUIDE), the program includes 24/7 access to a support line, care coordination, caregiver training and at-home or adult day care respite

services. “It’s never been Alzheimer’s disease that’s been difficult about the journey,” Guthrie says. “It’s been navigating the health care system that’s been difficult.” CMS selected 96

organizations to participate in the program, including academic medical centers and other hospitals, small and large group practices and community-based organizations already providing

programs for dementia patients. CMS chose 294 more organizations to join the program in 2025. People with dementia and their caregivers are assigned to a care navigator who helps them access

medical services as well as meals and transportation through community-based organizations. The program includes a care plan, ongoing monitoring and support, and provides caregivers with

education and skills training. “We all understand that caregivers are part of the health care team,” says Maria Carney, M.D., chief of the division of geriatric and palliative medicine at

Northwell Health in New York. ‘It’s never been Alzheimer’s disease that’s been difficult about the journey. It’s been navigating the health care system that’s been difficult.’ — Jessica

Guthrie, who is a caregiver for her mom in Fredericksburg, Virginia “We have to make sure they’re educated and know what resources are out there, and we support them when they’re

struggling,” she says. She points out that caregivers have to do more complex medical care, such as giving injections, infusions, medications, draining catheters, crushing pills and doing

wound care.   Northwell Health has been providing similar services through its Alzheimer’s and Dementia Care program for three years and looks forward to expanding the program with CMS

support through GUIDE. “We did a lot of coordinated services on a much smaller scale, and we’re lucky to grow this to more families and provide more support,” says Kaitlin Emmert, a social

worker in the geriatrics and palliative medicine division, who works directly with GUIDE patients and caregivers. “We’re able to connect them with the services they need to be able to remain

at home as long as possible.” Medicare pays participating organizations monthly to provide services; patients and their caregivers typically won’t have copayments or pay out-of-pocket for

the services.