A federal program offered through the Visiting Nurse Association of the Treasure Coast is helping families caring for loved ones with dementia by providing education, care coordination and respite services designed to keep patients at home and reduce unnecessary hospital visits.
Known as Guiding an Improved Dementia Experience, or GUIDE, the program supports both people living with dementia and the family members who care for them.
Carmen Luca, director of private care services for the VNA, said caregivers often struggle to manage the demands of caring for a loved one while trying to navigate available resources.
"Caregivers often feel overwhelmed and alone. GUIDE provides education, ongoing support, care coordination to help families care for their loved ones at home and avoid unnecessary ER visits whenever it's possible. As a caregiver, you really don't know what's out there to support you," she said. "You really don't know how to deal with situations when they arise. We call it caregiver burnout, and there is a true challenge for them to navigate the system."
As part of the program, caregivers are paired with a dementia care navigator who answers questions, coordinates services and helps develop care plans tailored to each family.
Support is available around the clock, including during unexpected situations that arise outside normal business hours.
"This is the whole idea behind GUIDE, to be there when it's needed in the home. Obviously we are over the phone, but still we can guide them what to do in case of a crisis," she said.
The program also focuses on preparing families before challenges become overwhelming by helping them better understand dementia and what to expect as the disease progresses.
"Before they even have issues or problems or behaviors that they don't know how to approach, we educate them up front. We communicate 24-7. Behavior changes, safety, future planning, along with connection with valuable community resources and 24-7 support," she said.
In addition to education and care coordination, qualifying Medicare participants can receive in-home respite care, allowing caregivers time to attend appointments, rest or take care of personal needs.
"Every year they revamp it and re-evaluate for how much they can give the families in dollar values, but actually it's hours for them. This year is $2,500 for Florida and for our zip code, it's 76 hours of respite where the caregiver can take a break. Even a short break allows a caregiver to rest, attend appointments, or simply recharge," she said.
Luca encouraged anyone who believes they or a family member may qualify for the program to apply.