Lisa Renzi-Hammond remembers the last months of her grandmother Evelyn’s life in flashbulb moments. For 10 years, Alzheimer’s disease had steadily chipped away at Evelyn’s memory and executive functioning until she needed full-time care.
On her last visit to Renzi-Hammond’s house in Georgia, Evelyn stood in the hallway peering into her granddaughter’s face, her hair as fiery red that day as it had always been. But she couldn’t recall who Renzi-Hammond was.
“It was heartbreaking,” Renzi-Hammond said.
This was the woman who had called her honeybunch and bought her sparkly things and dangly earrings when she was a little girl. And now here her grandmother stood, unable to recognize her.
Jenay Beer was there once, too. It took some time for Beer and her family to realize something was going on with her 80-year-old grandmother, June, who lived in another state.
“She declined rapidly, and when we were notified by a family friend that there might be an issue, things weren’t looking good for her,” Beer said. “Her kitchen wasn’t stocked. Her home was a mess. She wasn’t keeping up with herself, and we felt awful because we didn’t know these health changes were happening.”
When they first joined the Institute of Gerontology at the UGA College of Public Health, Renzi-Hammond and Beer were pursuing individual lines of research focused on helping people live better as they age.
Renzi-Hammond studies how diet and lifestyle can prevent neurodegenerative diseases like dementia. Beer specializes in assistive technologies that could help older adults, in particular those with cognitive impairment, and their families cope with health challenges.
They talked about their work and talked about their shared history with Alzheimer’s and dementia.
Over time, the seed of an idea began to form, an idea to innovate Alzheimer’s and dementia care—to combine the best of prevention education, care technologies and post-diagnosis support in one place and make it accessible to people beyond the borders of the UGA campus.
In 2019, the Cognitive Aging Research and Education Center, or CARE Center, was born—a promise, they said, to their grandmothers.
Beer and Renzi-Hammond are now leading a multi-disciplinary team of UGA scientists and health professionals who are working to ensure that any Georgia resident facing an Alzheimer’s or dementia diagnosis can get the care and support they need.
The road so far
In 2019 the CARE team began offering cognitive assessments to individuals who could travel to the Institute of Gerontology, where the CARE Center is housed, on UGA’s Health Sciences Campus. To date, the team has assessed 14 patients at the CARE clinic and helped their families through the next steps of treatment and support care. They can already see an impact, not only in connecting clients to diagnostic services but in helping them reframe how they conceptualize the next years of their lives.
“To see someone on the scariest day of their life and give them options and say it’s going to be okay, this is a decade of life, and there are opportunities to do things–those conversations are empowering,” Renzi-Hammond said.
At the same time they were building clinical capacity, Beer and Renzi-Hammond were developing a curriculum to educate communities and health care providers about Alzheimer’s and dementia prevention and the need for diagnosis. In a recent survey by the Alzheimer’s Association, 80% of older adults don’t know the early signs of Alzheimer’s or dementia, so they miss an opportunity to catch the disease early when treatments are most effective.
To help get that curriculum in front of rural communities and providers, they turned to specialists at UGA’s Cooperative Extension. With offices serving all 159 Georgia counties, Extension offers an array of programs, services and health education that support local businesses and families.
In 2022, the CARE team started training Extension agents on Alzheimer’s and dementia topics–like spotting the early signs of dementia or eating well to prevent cognitive decline–that they could fit into existing nutrition and wellness programs. The team has created tailored curricula and resource guides to reflect the needs of those communities.
Health care providers are another critical audience to introduce to the CARE vision, Renzi-Hammond said, which might surprise some people.
“There’s a number of health care providers who say there’s no point in diagnosing it,” she said. “They say, ‘It’s a foregone conclusion. It’s a terminal illness. Why stress out the family by calling it this thing?’”
Of course, there are great reasons to call it “that thing.”
There’s policy moving through all that time that aims to support people with diseases and their caregivers, adds Renzi-Hammond. In particular, having a diagnosis makes patients eligible for Social Security disability payments, which can be critical for families as care visits and bills pile up.
Getting local doctors, nurses and pharmacists on board will help foster communication about cognitive health and disease prevention, and these are the clinicians who may one day be referring patients to the CARE Center.
Currently, the bulk of dementia-related health care is provided in the state’s major cities.
“Rural health care systems often lack the neuroimaging equipment, cognitive testing tools and advanced laboratory facilities needed to diagnose and treat Alzheimer’s and dementia, so the CARE Center is creating infrastructure and addressing economic barriers to diagnosis,” Beer said.
In an environment drained of resources, many remaining providers have turned to telehealth as a way to connect with specialists.
The CARE Center wants to partner with the providers, Extension offices and community centers to serve as spokespersons to the experts working out of the CARE clinic hub in Athens.
“The idea is not that you drive four hours to get specialty services and wait a year,” Beer said. “Instead, you can walk right into your local UGA facility—your Archway Partnership office, your Extension office or even your local doctor’s office if they want to participate, and connect immediately to somebody who can help, who has the expertise to do that job, in a place that feels comfortable.”
Renzi-Hammond says collaborating with communities will be key to the success of the CARE Center.
“They tell us, this is what we have here and this is what we’re missing here. Then it’s our job to bring the might of UGA to solve that problem. We’re not holding our resources here. We want them distributed where the need is greatest,” she said.
More than 6.5 million Americans today are living with Alzheimer’s disease or related dementia, a number that is expected to double in the next 30 years.
Renzi-Hammond and Beer know they’re up against a mountain of challenges. Dementia is a complex disease that’s been understudied, and people living with dementia are facing a constellation of symptoms that will alter their behaviors, relationships and ability to function normally.
But they have a plan. Rather than focus on one domain of dementia care, which is radically siloed in today’s health care system, the CARE team is bringing together experts from the key disciplines that touch individuals before and during their care journey.
These include geriatrics, neuroscience, pharmacy, psychology, social work, health education, health care policy and telehealth—as a start.
Each of these areas ladder up under three pillars of activity: educating communities and health care providers on Alzheimer’s and dementia prevention and the need for diagnosis; connecting patients and providers to diagnostic tools and expertise; and supporting patients and families as they navigate each new stage of the disease.
At all levels, there’s heavy involvement from undergraduate and graduate students, who are receiving the training to become future leaders of dementia treatment and care.
Offering family and caregiver support, in particular, is another critical part of the CARE model. Their role can’t be overlooked, said Renzi-Hammond, who remembers the pain, sacrifice and love that her own mother and aunt provided for her grandmother.
“There are funny moments. There are humiliating moments,” Renzi-Hammon said. “There’s the feeling of saying goodbye in inches, and then there’s the sort of watching of a relationship that used to be on so much more equal footing—this happens to spouses—and suddenly they don’t.
“And my promise was simply that we could make it better, that we would spend our time and our lives dedicated to making it better.”
The road ahead
Back at the CARE Center, the duo reflects on the road ahead.
With support of grants, including one from the National Academy of Medicine, and seed grants from UGA as part of the Rural Engagement Faculty Workshop and Presidential Interdisciplinary Seed Grant programs, they hope to launch the telehealth arm this year and continue building their post-diagnosis support to include more financial, legal and traditional counseling services.
That day standing in her home, Evelyn had said, “I don’t know you, but I feel like I can trust you.”
“Some relic of me was present in her head, and I’m glad she thought that she could trust me even when she didn’t know me. There are so many people in the world going through this, and they may have no one they could trust,” Renzi-Hammond said.
If all goes to plan, there will be that someone who cares for everyone in Georgia.
This story first appeared in the UGA College of Public Health 2022 Annual Magazine and is republished with permission.