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• Medicare changes help family caregivers
• Providers get paid to train family caregivers
• Education for serious conditions
• Special program for dementia caregivers

It’s not surprising that family members, often thrust into caregiving with little notice, find themselves navigating a complex medical system without any training or guidance. So often “caregivers are unseen and unsung heroes”, says the head of (CMS)Centers for Medicare & Medicaid Services. There are (3) three new ways that Medicare is supporting family caregivers.

The good news is that there are changes underway to help educate family caregivers on the ins and outs of providing care for loved ones. A new program, designed to improve the quality of life for people with dementia and their unpaid caregivers, is also in the works. Its goal is to help those with dementia remain in their homes longer.  

President Joe Biden signed an executive order April 18, 2023, to support the country’s 48 million family caregivers. It included more than 50 directives to federal agencies to find ways to better support caregivers, who provide what AARP estimated in 2021 to be more than $600 billion each year in unpaid labor to take care of family and friends.

“I feel like I’ve learned all the things on the fly,” says Jessica Guthrie of Fredericksburg, Virginia, who has been caring for her mother for the past 10 years. Guthrie was part of a May 20 panel discussion at Arlington’s VHC Health, formerly Virginia Hospital Center, with the head of the Centers for Medicare & Medicaid Services, a health care provider, and AARP’s chief advocacy and engagement officer.

“Caregivers are a vital part of our health care system in doing things like helping with medication management, transportation to appointments, food shopping, bathing and dressing, and getting around the house,” says Chiquita Brooks-LaSure, administrator of the Centers for Medicare & Medicaid Services. “So often caregivers are unseen and unsung heroes. We at CMS have tried to make sure that in fulfilling our mission to deliver better health and better health care to all people, that we strengthen our support for caregivers.”

1. Providers get paid to train family caregivers

Under a rule that took effect Jan. 1, doctors, clinical psychologists, nurse practitioners, physical therapists and other health care providers can bill Medicare for time spent training family caregivers.

Family members who are helping aging relatives with tasks such as giving injections, managing medications and changing bandages no longer need to worry about spending too much time asking medical providers questions about the steps they need to know.

“When you reach the stage of incontinence, no one actually tells you how to change an adult brief,” says Guthrie, who moved from Texas to Virginia to live with her mom, Constance, as Alzheimer’s decreased her mother’s ability to care for herself. “No one shares with you how to roll someone effectively in a hospital bed to change them with dignity and respect.”

Before the rule, physicians and other health care providers helped caregivers learn the tasks that needed to be done, says Genesis Brown, a certified adult gerontology nurse practitioner. They just spent personal time during the day doing so.

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 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 and providers that you need to see” Brooks-LaSure says. “Not only for cancer but other serious illnesses.

Often when patients are discharged from a hospital’s intensive care unit, family members are asked what is it that they need to know. Many have no idea of what they needed so physicians provided a discharge summary with snippets of information that would help family members organize additional care. Any future training needed afterwards would be coordinated with the primary care doctor.

These are services Medicare will pay for as “the service is intended for people who are in the category where their ongoing needs are going to be much more severe. They’re at high risk for re-hospitalization; everything from chronic obstructive pulmonary disease, heart disease, cancer, congestive heart failure, AIDS, dementia and severe mental illness and we need to make sure that people have assistance when they are trying to provide care and navigate the health care system, which we know is more complex than we’d all like it to be.”

3. Pilot project begins for dementia patients’ caregivers

A test program for caregivers whose loved ones have dementia started on July 1, 2024, and will expand next July. 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 next July.

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.

4. Guiding an Improved Dementia Experience (GUIDE)

a. Comprehensive Care Plans and Support for Caregiver

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. “We have to make sure they’re educated and know what resources are out there and we support them when they’re struggling.” She points out that caregivers are having to do more complex medical care, such as giving injections, infusions, medications, draining catheters, crushing pills and doing wound care.  

b. Northwell Health’s Initiative with GUIDE

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.”

c. The Impact of Guide on Local Programs

The GUIDE program has inspired healthcare providers, like the University of Oklahoma Health Sciences Center, to enhance their dementia care offerings. Dr. Lee A. Jennings, a geriatric medicine specialist, plans to enroll about 85 eligible patients currently in its dementia program with plans to cover up to 200 patients throughout the state. “We don’t take over your primary care — we’re working with your primary care providers, ensuring they remain connected while receiving specialized support through GUIDE.

d. Eligibility Criteria for GUIDE Participation

To qualify for the GUIDE program, the patient must be enrolled in original Medicare, not Medicare Advantage, and have a dementia diagnosis rather than mild cognitive impairment. They can’t be in hospice or a long-term nursing home resident. An initial evaluation ensures each applicant meets the program’s requirements.

5. Center for Medicare and Medicaid Services Support and Resources

a. Medicare’s Financial Support and Respite Benefits

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. What’s more, GUIDE will provide each patient with a $2,500 annual stipend for respite benefits, which can pay for in-home caregivers, overnight respite care or adult day care centers to give the caregiver a break. The programs contract with statewide or local organizations to provide the respite service, making it easy for caregivers to access benefits.

b. Resources for Patients and Caregivers

CMS offers a fact sheet for patients and caregivers for more information and a link to its CMS Innovation website, where you can find a list of participating organizations. With more than 6.7 million Americans living with dementia in 2023, the demand for caregiving services is increasing rapidly. Without medical breakthroughs, the number of cases is expected to rise to 13.8 million by 2060. Programs like GUIDE are critical in addressing this growing public health challenge by offering structured support to patients and caregivers.

If you find an organization in your area participating in the program, contact them to see if they are taking new patients and if your loved one is likely to qualify. The program will conduct an initial evaluation before determining eligibility.

c. Recognizing Caregivers as Vital Contributors

“I think medical people have typically seen caregivers as functions as opposed to people who need wellness themselves,” says Ellen Carbonell, who created the Caring for the Caregivers program at the Rush University Health System in Chicago in 2019. Rush’s evidence-based program to help caregivers includes many of the same services as the GUIDE program.

Additional CMS funding eliminates many of the copayments that participants had to pay. “This is going to allow a lot more people who previously couldn’t afford to meet their out-of-pocket components of billing to get involved in the program.”

Nancy LeaMond of AARP underscores the importance of integrating family caregivers into the healthcare conversation. As a former caregiver herself, she stresses that caregiving is an unpaid role that spans all demographics. The GUIDE program represents a significant step in valuing and supporting caregivers while fostering new care models for other chronic conditions.

Final Thoughts

“Caregiving is an unpaid job that does not discriminate by gender, race, age or any other demographic,” says Nancy LeaMond, an AARP executive vice president and its chief advocacy and engagement officer. She and her two sons took care of her husband, Steve, at home for six years before he died in 2019 of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. 

“I always felt like I was on the sidelines with all the … discussions,” she says. “But these steps that talk about how you integrate the care the family caregiver is providing is so important. We hope this will lead to models for other diseases.”

Caregivers can stay updated on relevant topics that impact our senior and elder communities by subscribing to our newsletter at newsletter@erinsagelessessentials.com. Additionally, online communities such as AARP’s Family Caregivers Discussion Group on Facebook provide a safe space for caregivers to share experiences, seek advice, and offer support to one another. These resources ensure that caregivers never feel alone in their caregiving journey. Join our sister group below for support with your caregiving journey.

Get help. Help others

AARP’s Family Caregivers Discussion Group is a private Facebook group where caregivers can seek support and offer support to others.