The past 6 1/2 years have been a roller-coaster ride for Irvine resident Ben Allen.
In 2009, his wife, Judy, was diagnosed with Alzheimer’s disease, and since then, it’s been one challenge after another, from memory loss and mood swings to moving across the state to be closer to family, and eventually transferring Judy to a permanent memory care community.
“There’s a real tendency to become isolated because things just become more difficult,” Allen said.
That’s why Allen said the best thing he and Judy did was to join a support group from day one. The Allens started off with the Alzheimer’s Assn. in Northern California, but after moving to Irvine in 2011 switched to Alzheimer’s Orange County, where Allen is now an active volunteer and community speaker.
The Orange County group announced last month that it is among those chapters across the country breaking from the national organization. The New York City and San Diego chapters are among those splitting from the Chicago-based national Alzheimer’s Assn.
The groups say they want to retain local control.
“Bottom line is that you have 84,000 people in the local market, and we felt we could do more with our money and time locally than we could by staying with the national organization,” said Michael Lancaster, chairman of the Alzheimer’s Orange County board.
Jim McAleer, the CEO of the local group, said the decision, which he called a “divorce,” was made after the national office announced its intention to merge its dozens of chapters into one centralized nonprofit, which would have meant a shift away from local services and turning over all fundraising dollars to the national group.
“In Orange County and a number of our sister chapters, we were and are producing at a really high level, so that would have caused us to backtrack,” he said.
Lancaster said breaking away will allow the local group to focus exclusively on the needs of the county.
Alzheimer’s is a chronic neurodegenerative disease with symptoms that include memory loss, disorientation, language problems and trouble managing self-care. It is the sixth-leading cause of death in the United States, according to the Centers for Disease Control and Prevention, and the fourth in the county, according to the Orange County Health Care Agency.
“Alzheimer’s is sometimes described as the long goodbye,” Allen said. “It can be a long, slow process, and because of the progression of symptoms, there’s a repetitive grief process that sets in.”
He added: “There are plateaus and drops, plateaus and drops. I would get used to something and say, ‘If this is it, I’ve got it, I’m OK.’ But then something changes, and the grief process starts all over again.”
Allen said he is all in favor of Alzheimer’s Orange County being as strong and viable as possible, even if that means independence.
The group provides a cost-free resource for local Alzheimer’s families like the Allens, offering support groups, caregiver education, emergency consultation and financial planning advice.
“Having something to do on a regular basis, to get out and be with other people was a very uplifting thing,” he said. “It’s not something that anybody can do alone. It’s a tough road.”
McAleer said about the local group:
“We hold your hand from the moment of diagnosis all the way until the end of life. There’s not someone to fill that gap.”
According to organization officials, Alzheimer’s Orange County currently serves 84,000 people with dementia and trains more than 27,000 caregivers per year. It also raises $5 million each year.
“Our organization is for a person with the disease and the caregiver. That’s the only reason we’re here,” McAleer said. “What we do and how we’ll serve them is based on what they need, not our organizational structure.”
McAleer was clear that the changes would not affect any of the dozens of groups or other services that local families receive. The group will continue to be based in Irvine.
Now the organization is looking at ways to expand its scope within the county.
McAleer said Alzheimer’s Orange County is working on introducing new services, such as adult day healthcare and respite care.
“For our families, being able to drop your loved one off for two hours so you can get a haircut is huge,” he said.
The group is also trying to extend its reach into underserved communities.
Alzheimer’s Orange County has already begun work not only on translating its materials into Vietnamese and Spanish and identifying how best to advertise to these populations, but also recruiting dedicated staff and volunteers who can culturally relate.
McAleer explained that cultural sensitivity is necessary to understanding the stigma that exists within specific communities — “in the Vietnamese community, you don’t use the word ‘Alzheimer’s,’” he said, “because mental health issues are nothing talked about” — and the social dynamics, such as large extended families among Latinos, that may come into play when working through the disease.
The group is now also looking at ways to make inroads into local Korean, Chinese, Persian and LGBT communities.
Joshua Grill, director of education at UC Irvine’s Institute for Memory Impairments and Neurological Disorders, said the effect of Alzheimer’s Orange County on local families has been “profound.”
“Families are facing a long, uphill battle of dealing with this disease and planning care for someone who is ultimately going to depend on others for their quality of life,” he said. “Families in the throes of this disease need all the help they can get, and there are not enough resources made available to them, but Alzheimer’s Orange County provides a lifeline that makes all the difference.”
McAleer wants everyone to start paying attention to Alzheimer’s — not just those affected by the disease.
As the baby boomer generation ages, he explained, the number of those with Alzheimer’s across the country is expected to balloon, from 5 million today to 10 million by 2030. In addition, the disease cost an estimated $200 billion in healthcare expenses in 2012, and that number is expected to be $1.1 trillion by 2050, according to the Alzheimer’s Assn.
“It’s the most expensive disease in the world, and it’s hopelessly underfunded at the federal level,” McAleer said. “It’s going to cripple Medicare. This is the biggest threat to our healthcare system in decades.”
Allen agreed that this is a disease all people need to know about.
“It’s essential for everyone to be educated about Alzheimer’s and other kinds of dementia,” he said, “because if you don’t know somebody close to you with Alzheimer’s, you will.”