How to get free dementia caregiving hours through pilot program, GUIDE
PHILADELPHIA (WPVI) -- World Alzheimer's Day is on Sunday, September 21st, and it's intended to highlight a disease that impacts millions of families.
According to the Alzheimer's Association, one in nine people age 65 and older is living with Alzheimer's, and along with the mental and emotional toll the disease takes, the financial toll is incredibly heavy.
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Nearly 12 million Americans provide unpaid care for people with Alzheimer's or other dementias. That often has a snowball effect, forcing people in extreme cases to sell their homes or use up their entire savings or retirement funds.
Melanie Cutillo has written a guidebook called "Navigating Alzheimers: A Roadmap to Taking Charge."
"My dad lasted six years (with Alzheimer's disease), but some people last 20 years. And it's a lot to navigate," she says.
She wrote the book based on her experience as a daughter and a nurse.
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"Professionally, I was seeing it with patients and families. They weren't sure what to do next. How do I handle a medical living will? What do I do? Do I get a lawyer? Can I afford one?" she says.
Melanie says the biggest challenge is caregiving. Many people quit working because they have to care for a loved one.
"My mom had to retire before she wanted to, to care for my dad," she says.
Last year, unpaid caregivers provided an estimated $19 billion+ hours of care, valued at more than $413 billion. And 25% are in the sandwich generation, meaning they care for both an aging parent and a child under the age of 18.
"I think, in general, our healthcare system is a little broken, right? I think we could do better for our caregivers out there," says Melanie.
There is a new pilot program to help families get at least some outside, expert caregiving hours for free.
It's called "GUIDE," which stands for Guiding an Improved Dementia Experience. The program provides paid caregiving hours for people with moderate to severe dementia.
Chris Campbell is the owner of Right at Home Jenkintown, which provides caregivers through the GUIDE program.
He says while there is no income or asset requirement, recipients "must have Medicare part A or B. It has to be straight Medicare. It can't be one of the supplements."
Right now, the program provides 80 hours of free caregiving per year in four-hour increments.
"Hopefully it expands and becomes more hours," says Campbell.
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Campbell says families could use the hours to trial having an outside caregiver, or toward coverage for an upcoming event, self-care, a transition, or planned time away.
"Maybe you're the primary caregiver, but you have a daughter that helps you out with mom. If she's got to be away on vacation, this gives you some supplemental help during that timeframe," he says.
He says everyone should apply.
"Even if they don't qualify at the moment, they still can have a relationship where they can get support services. There's an RN available at times and there's also 24-hour dementia support available," he says.
Melanie knows how important it is to support caregivers and to help them feel seen.
She says about writing her book, "I wanted people to feel like they're not alone."
