Guiding people with dementia and their caregivers
More than six million Americans live with dementia, a number projected to more than double to 14 million by 2060. Yet today, many people with dementia do not receive consistent, high-quality, coordinated care.
This causes higher rates of emergency department visits, hospitalizations and even death. Dementia patients also may suffer from high rates of depression, behavioral and psychological symptoms, as well as poor management of co-existing conditions.
Caring for people who are living with dementia can have a significant effect on the estimated 11.5 million U.S. family members and other unpaid caregivers assisting with personal care, household tasks, medication management, clinical coordination and many other duties.
These caregivers commonly report high levels of stress and depression that negatively affects their own health and well-being.
UCI Health geriatricians Dr. Sonia Sehgal and Physician Assistant Valerie George recently discussed a special program designed to help patients and caregivers alike. Called GUIDE — short for Guiding and Improved Dementia Experience — the program was highlighted recently on the Spotlight on Care podcast produced by the UC Irvine Institute for Memory Impairments and Neurological Disorders (UCI MIND).
What is GUIDE?
The GUIDE program offers long-term, comprehensive support for both people living with dementia and their unpaid caregivers. Recognizing the significant burden caregivers face, the U.S. Centers for Medicare & Medicaid Services launched the program in 2023.
The UCI Health Population Health and Value-Based Care program was chosen to participate in the groundbreaking initiative in 2024.
Led by the UCI Health SeniorHealth Center in partnership with the UC Irvine School of Medicine’s Department of Neurology, the GUIDE team joined with nearly 400 groups nationwide that are building dementia care programs to increase care coordination and improve access to services.
“It's the first formal program that allows us to provide care — not only to the patient, but also to their caregivers, who have a high-stress, 24/7 job,” says Sehgal, medical director of the SeniorHealth Center.
How does it work?
“A patient can be referred to us if they have a diagnosis of dementia and an unpaid caregiver,” says George, a dementia care specialist. “It could be a husband, a wife or another a family member who participates in the patient’s care or the activities of daily living.”
Over the course of eight years, participants receive structured assessments, caregiver support services and coordinated care management through a multidisciplinary team.
“The program allows for the dementia care team to proactively reach out to participants,” Sehgal explains. “Every month, Valerie and her dementia care assistant make outreach touch points, whether that be a visit or a phone call to say, ‘Hey, is everything going well?’ If it is wonderful, we'll touch base with you again next month."
“But if not, we can proactively get you in touch with resources, get you in touch with your own primary care provider and find ways to support you, to prevent caregiver burnout and really stay one step ahead of the progress of the patient’s condition.”
Advocating for caregivers
George is excited about the opportunity to improve the lives of patients and their caregivers. “For me, seeing the patients and getting to know their caregivers deepens the relationship,” she says.
“Now, when I do a home visit for safety, it’s a unique experience, much different from seeing people in the clinic. You get a better idea about how they live, what is going on, what the house looks like. That gives us better insights into how we can best help.”
The GUIDE program allows the medical team to spend time with the caregiver, to advocate for the caregiver and to make sure they are successful in their role, Sehgal says.
“I imagine that as a caregiver, it can feel very lonely,” she adds. “It can feel like you're wading in a sea of information and that you don't have anyone who is an advocate for you. I hope this program helps us mitigate those concerns in some way.”
To learn more about the UCI Health GUIDE program or refer a patient and caregiver, please call the SeniorHealth Center at 714-456-7007.
Listen to the full podcast
You might also enjoy the Spotlight on Care podcast: The value of a geriatrician