It’s a first for Medicare, spotlighting the needs of the more than 11 million unpaid family caregivers of people with dementia.
The voluntary program, called GUIDE (Guiding an Improved Dementia Experience), initially started with a Biden administration executive order to test a new model focused on dementia care that pays for some family caregiver support.
“For unpaid caregivers, who face not only difficult care responsibilities and decisions, but also serious financial consequences with few opportunities for help with training or short-term respite breaks, the program is a significant start,” Cindy Hounsell, founder and president of the Women’s Institute for a Secure Retirement (WISER), told Yahoo Finance.
Approximately two-thirds of dementia caregivers are women, according to Centers for Disease Control and Prevention (CDC) data.
The GUIDE program is now offered in 45 states — all but Alaska, the Dakotas, Kansas, and Mississippi — and includes roughly 330 Medicare-participating providers, including large academic medical centers, hospital health systems, small group practices, community-based organizations, and hospice agencies.
The initiative has been approved for an eight-year run.
More than 6.9 million people in the US are living with dementia stemming from a range of diseases such as Alzheimer’s and Parkinson’s, according to a 2024 report from the National Institutes of Health. As the population in the US ages, cases are expected to jump to nearly 14 million by 2060.
Most people with dementia in the US live at home. About 8 in 10 adults with dementia live in their homes with spouses or other family members, according to the CDC.
How it works
Eligible patients must be enrolled in Medicaid or original Medicare — not Medicare Advantage.
To qualify, patients must have a diagnosis of moderate to severe dementia and not live in an assisted care facility, nursing home, or be receiving hospice care. They must also be patients of a participating provider.
The program pays up to $2,500 each year per beneficiary for respite benefits, which cover the cost for in-home caregivers, overnight care, or adult day care.
Last year, the national median pay for home health and personal care aides was $16.78 per hour. Translation: the program could cover 148 hours of in-home care, giving family caregivers a chance to take a break.
The program doesn’t provide Medicare patients with the funds to directly pay these caregivers who step in to lend a hand. It provides Medicare payments to those provider organizations that, in turn, cover the caregiver’s pay.
In addition, the program includes round-the-clock access to a support line to connect directly to a licensed nurse who can answer questions. This is particularly useful in case of emergencies and can defray a hospital visit in some cases, Hounsell said.
Many family caregivers aren’t trained to handle medical or nursing tasks such as managing catheters, performing injections, or monitoring vital signs. To address this gap, the new Medicare initiative provides access to caregiver training and education.
Savings are two-fold
Ideally, the program will cut costs for Medicare in fewer emergency room visits and short-term hospital stays for those with dementia.
For families of those with dementia, the end goal is to help those patients stay at home longer and avoid the high cost of assisted care or nursing homes, which can be a massive drain on a family’s finances.
It often comes as a shock to people that Medicare doesn’t cover the cost of long-term care facilities, which can quickly top tens of thousands of dollars.
An apartment in an assisted-living facility had an average rate of $74,148 a year in 2024, according to the National Investment Center for Seniors Housing & Care — and costs go up as residents age and need more care. Units for dementia patients can run more than $94,000.
“Alternative payment models like this are critical to helping individuals remain in the setting of their choice,” said Mollie Gurian, vice president for policy and government affairs at LeadingAge, an association of nonprofit providers of aging services.
“These participating providers understand the complexity of caring for older adults with dementia and recognize that family and friends are essential members of the care team.”
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