Over the past four decades, Alzheimer’s Orange County (AlzOC) has established itself as a resource for those in the community whose lives have been impacted by Alzheimer’s disease.
The numbers speak for themselves; last year, AlzOC served 35,000 people, including nearly 11,000 who participated in the organization’s free Alzheimer and dementia education classes; more than 2,160 caregivers who found connection with other caregivers in 30 online and in-person support groups; and almost 1,700 people who attended one of AlzOC’s MindFit OC classes, which aim to give tools to maximize cognitive health, live a healthy-brain lifestyle, and reduce the risk of cognitive impairment.
Prior to AlzOC’s founding in 1982, there weren’t any nonprofits in Orange County that supported Alzheimer’s patients and their families.
Newport Beach resident Joan Dashiell, whose mother had the disease, was determined to change that. Dashiell gathered eight close friends, most of whom were also dealing with the realities of Alzheimer’s in their own families, and, working out of Dashiell’s garage, founded the nonprofit that would become Alzheimer’s Orange County.
At the time, there was no prospect of any real treatment for Alzheimer’s disease, said Jim McAleer, CEO, AlzOC, who has been with AlzOC for 18 years.
“You didn’t talk about it,” he told the Business Journal. “There was a real stigma about it.”
Dashiell and her friends were undeterred. Under the umbrella of their newly formed nonprofit, Alzheimer’s Association in Orange County (as it was called at the time), they organized support groups, shared educational information, made doctor referrals and created activities designed for those with Alzheimer’s disease to help them express themselves as they started to lose communication skills.
In 1984, the group joined the national Alzheimer’s Association, which was founded in 1980 in Chicago.
In the years since, the “original nine” cultivated a network of volunteers from all walks of life: hands-on folks for one-on-one care, fundraising experts who developed golf tournaments and galas, and board members to help guide its vision.
Independence With an OC-Focus
As Alzheimer’s Association in Orange County grew in scope, the organization’s leaders saw the need to focus on Orange County specifically.
In 2015, the nonprofit left the national Alzheimer’s Association to create the independent and renamed Alzheimer’s Orange County, to maintain local control of budgets and programs, and assure all funds raised in Orange County would be put to work here.
That move allowed AlzOC to expand throughout the community. In 2016, AlzOC took over the operations of South County Adult Day Services, now known as Healthy Aging Center: Laguna Woods, one of the few licensed adult day healthcare centers servicing South Orange County.
A year later, AlzOC folded Acacia Adult Day Services into its services. Now called Healthy Aging Center: Acacia, the center provides community-based services that serve both the medical and social needs of individuals in North and Central Orange County who are living at home but require daytime assistance for their health needs.
AlzOC significantly expanded its reach in 2019 when Jacqueline Dupont Carlson—founder of Dupont Residential Care Inc. and Assured In-Home Care Inc., and former owner of Vista Gardens LLC and Assured Horizons LLC—donated Irvine Cottages to the organization.
Today known as the Cottages Memory Care, 15 locations across Orange County serve 90 seniors, providing them with professional care, balanced meals, medication supervision and brain-engaging activities.
AlzOC ranked No. 33 among Orange County’s largest nonprofits by local revenue in the Business Journal’s Dec. 22 listing, with $19.4 million in OC revenue for the 12 months ended June 30. That figure was up 2% from year-ago levels.
It counts nearly 130 paid staff in OC, and another 500 local volunteers.
Alzheimer’s Association, which still has a local presence via its own office in Irvine, ranked No. 9 on the listing, with $60 million in OC revenue over the same period, a more than 700% year-over-year increase.
Headed by Executive Director Deborah Levy, it reported nine paid staff in OC, and another 530 local volunteers in the latest listing.
Touched by Experience
In addition to Dupont Carlson, AlzOC’s board of directors is comprised of leaders from the Orange County business, care services and philanthropic communities, including Lawrence Hartley, senior vice president of Risk Strategies Co.; Sonia Garcia-Francia, CEO of Guardian Angels Home; Robert Ortega, vice president of operations at Discount Tire & Service Centers; and Robin Richter, owner of Wearable Imaging.
Most of the board members have been impacted by Alzheimer’s disease.
Dupont Carlson’s grandfather died of the disease.
“As a gerontologist, I have worked with older adults and those who experience cognitive impairment for more than 30 years,” she said. “In honor of my grandfather, I have proudly supported AlzOC’s vision.”
Richter echoes Dupont Carlson’s sentiments.
“I became very passionate about Alzheimer’s when my best friend’s mom was suffering from the disease, and I knew I wanted to become more involved,” said Richter, who has been volunteering for 10 years and joined the board two years ago.
Hartley, who serves as AlzOC’s board chair and has been a member since 2004, also lost a loved one to Alzheimer’s—his uncle.
“AlzOC provided a care consultant to my cousin,” he said. The case manager guided her through everything she needed to know as a caregiver to her father and provided emotional support when he had to go into an Alzheimer’s care facility.
“The fact that she got to spend time with him in his final days meant everything,” Hartley said. “Afterward, AlzOC offered grief support.”
Hartley said the organization’s “commitment is amazing. When you walk through an adult day care facility, you see them playing games, helping, and sharing their love. This is what I would wish for my parents, or myself, if ever needed.”
Working Through Challenges
The board, working together with AlzOC CEO McAleer, has made great strides in implementing the organization’s vision. The path has not been without speed bumps, the greatest of which Hartley said were the Great Recession and COVID-19.
“The Great Recession had a tremendous impact on our services. People simply didn’t have the resources to donate to the cause,” Hartley said. “The need didn’t go down. We had to do the best we could with what we had.”
The pandemic was another challenging time, with “so much care delivered through touch,” Hartley said.
“But we couldn’t have people come into our adult day centers. We worked together to identify those most in need and figured out how to best ensure they received care. Zoom was a wonderful tool.”
As the pandemic raced through assisted living facilities throughout Southern California, every AlzOC turned their focus to protecting vulnerable seniors, delivering toilet paper, hand sanitizer, and food to any elder care facility that needed it, regardless of whether they were affiliated with AlzOC.
In addition to delivering and providing supplies for no-cost care facilities, AlzOC opened a 50-bed unit at Fairfield Development Center to provide medical care for Alzheimer’s patients who got COVID while at their nursing homes. The facility operated from November 2020 to May 2021.
“We didn’t want a tent,” McAleer said. “We looked at all kinds of sites. Fairfield was a recommendation from the state. It was the perfect location. Working with first the state and then county government, it took just six weeks to get it up and running.”
Access in Multiple Languages
AlzOC is focused on making sure all Orange County residents have unencumbered access to its services, McAleer said. The organization offers many of its services in Spanish and Vietnamese languages in addition to English.
The multicultural focus isn’t new, according to Guardian Angels Home’s CEO Garcia-Francia, an AlzOC board member. A native of Guatemala, Garcia-Francia has been volunteering with AlzOC since its inception.
“In my culture, caring for the elderly is an honor,” she said. She tended to her own mother, who had myriad physical challenges, although not Alzheimer’s. As a volunteer for AlzOC, Garcia-Francia spearheaded efforts to connect with the growing Hispanic population in Orange County, visiting churches and schools to spread the word about the ways AlzOC could help them navigate the Alzheimer disease journey.
The outreach program where Garcia-Francia started as a volunteer is still in place today, under the direction of AlzOC Latino Program Coordinator Norma Castellano.
With support from the Archstone Foundation and Hoag Community Benefit, AlzOC developed the “Cuidando a la Cuidadora” program to offer dementia assessments, care planning, and other supportive services in Spanish to serve OC’s local Latino caregiver community. Similar plans are in the works for Orange County’s Vietnamese population.
A Disease Without Boundaries
Alzheimer’s disease impacts people from all nationalities, ethnicities, genders and income levels. An estimated 6.2 million Americans 65 and older were living with Alzheimer’s in 2022. That number is expected to rise to nearly 13 million by 2050, barring the development of medical breakthroughs to prevent or cure the disease.
“If we can find treatments that can delay the onset of the disease by five years, we can cut the instances of the disease in half,” said Joshua Grill, director of the UCI Institute for Memory Impairments and Neurological Disorders (UCI MIND) and leader of the Accrual and Retention Consult Service for the UCI Institute for Clinical and Translational Science. “If we can delay the onset by 10 years, we will virtually eradicate it.”
Grill stresses the importance of clinical trials to develop medications that can delay or potentially eliminate symptoms of the disease.
“Clinical trials need participants of all ethnicities. We’re looking for people 55-80 years old who have not been diagnosed,” Grill said. “Most people don’t realize that the only way we get new and improved medicines is through clinical trials.”
UCI MIND and AlzOC have a strong community partnership. AlzOC often directs participants to clinical trials, helping ensure the inclusion of often neglected populations.
Clinical trials have led to many breakthroughs, including what people may do to help prevent or forestall Alzheimer’s symptoms.
“Make sure you eat a healthy diet—fish, dark leafy veggies,” Grill said. “Get regular exercise. Get a good night’s sleep. High blood pressure and diabetes can increase the risk. Take care of yourself. Your lifestyle makes a difference.”
McAleer points out that the increase in Alzheimer’s disease has a huge impact on the business community. “There are people from all companies with family members who have Alzheimer’s,” McAleer said. “Most are not getting the help and support they need. The first thing businesses can do is help get the word out about what resources are available to them.
“Get engaged. Form a team for our fundraising walks. Sponsor a team. Sign up for our golf tournament. Come to a gala. There are so many ways to get involved.”
Two of AlzOC’s original founders are still alive and choose to remain anonymous. The seeds they planted alongside the seven other founders have grown into Orange County’s largest force in the fight against Alzheimer’s disease.
“AlzOC’s focus remains the same as it was those first days in Joan’s garage,” McAleer said. “To make the lives of those with Alzheimer’s disease, and their families and caregivers, the best that they can be.”