The Sacramento Bee interviewed me for a story about early-onset Alzheimer’s… the piece ran last week. Not sure how much attention or awareness I brought to the issue, but hopefully, my tiny part in this story will get more people thinking… dementia is not an old-person’s disease. People as young as 30 or 40 have been diagnosed with dementia… people with young children, teenagers. This disease does not discriminate. It does not care who you are, what you do, what color you are of if you’re rich or poor…………. can’t help but roll my eyes at the pettiness in our politics, when I know, you know that in 40 or 50 years, the real crisis isn’t going to be whether the Earth was formed 6ooo years ago or 6,000,000,000 years ago… the crisis will be this disease. A disease we are neither prepared for, nor can we afford. Hopefully, people will start to wake up…. listen up world, this disease is coming for you and its merciless.
Early-onset Alzheimer’s strikes people in their 50s
PUBLISHED THURSDAY, AUG. 18, 2011
Starting in his early 50s, Lou Bordisso Jr. knew something was wrong.
One time, he got lost in a Macy’s store in San Francisco and couldn’t find his way out. Another time, expected in a meeting, he rode confused from floor to floor in one Financial District skyscraper, then the one next door.
“I could not for the life of me find the conference room,” said Bordisso. “Then one day, I couldn’t remember how to log in to my computer. That was the beginning.”
At 57, the American Catholic Diocese of California priest should be in the prime of his life – but last year, he was diagnosed with dementia related to Alzheimer’s disease.
There’s good reason we think of Alzheimer’s as a problem of old age: Age is the degenerative brain disease’s only known risk factor. Fully 90 percent of people with Alzheimer’s are 75 and older, experts say, and nearly half of people over 85 have it.
Even so, according to the Alzheimer’s Association, a small sliver of the diagnosed – up to 5 percent – haven’t yet seen their 65th birthdays. That means 200,000 Americans younger than 65, including 19,200 Californians, have the disease.
The early-onset form of Alzheimer’s is little understood. Experts know that for a small number of people whose memory loss begins in their 30s and 40s, genetic factors play a role. But why do other people in their 50s and early 60s get the disease?
Researchers don’t know.
“It’s a less common age to have this disease,” said Judy Filippoff of the Alzheimer’s Association of Northern California. “At 65 and younger, most people don’t expect this diagnosis. They have many responsibilities, and they haven’t slowed down, either physically or mentally.
“And now they have to change their life in ways they didn’t imagine. It can be quite a shock.”
Much too early, people diagnosed with early-onset Alzheimer’s lose their past as well as their future. The disease is both progressive and fatal and has no known cure.
Mike Fisher spent his career with law enforcement in Contra Costa County. At 50, he was Lafayette police chief as well a Sheriff’s Department lieutenant.
Then he was diagnosed with Alzheimer’s.
“I was having a hard time remembering codes,” said Fisher, now 53, who lives in Benicia. “I was having memory problems in my 40s, it seems like. I hit 50, and it’s gotten worse more quickly.”
Many people with early-onset Alzheimer’s still have kids to raise and families to support. Many are helping care for their own aging parents or planning for their own retirements.
Suddenly, the future they mapped out disappears, not only for them but also for their loved ones.
In that sense, Fisher is lucky: He retired from the Contra Costa County Sheriff’s Department with generous pension and medical benefits, and his 18-year-old daughter recently entered community college. Yet he knows his wife of more than two decades will be his caregiver one day.
“You plan as much as you can,” he said. “We go to support groups, and you can see the progression of the disease. It’s kind of scary, to be honest. It can be very sad at times.”
In her blog inspired by her mother’s dementia, 34-year-old Phoenix writer Kathy Ritchie has discussed Alzheimer’s as an ongoing process of grief and loss for family members. Many people coping with their parents’ early-onset disease are still in their 20s, she says, and they feel cheated out of the friendships that develop between parents and their adult children.
“We don’t have survivors,” said Ritchie. “The only people who bear witness to this disease are family members. It wreaks havoc on families. The toll it takes, I can’t even describe it.”
Lou Bordisso Jr.’s diagnosis presents a different kind of role reversal. His father is 97, and though Lou Sr.’s hearing is bad, his mind is still sharp. As Lou Sr. recovers in a rehab facility from a recent illness, his son came home to Sacramento from Vallejo earlier this year to care for him.
Instead, father and son share a caregiver.
Lou Jr. can’t drive any more, because he misjudges distances. His balance is off: Unless he uses a cane, he’s unsteady on his feet. Without help, he forgets how much medication he’s taken.
Since his diagnosis in May 2010, his life has changed enormously, downsized to a quieter, more manageable shape. He was bishop of his diocese for several years, but he took bishop emeritus status instead. The longtime marriage and family therapist also resigned from his secular job in forensic mental health with Contra Costa County.
“I was making mistakes,” he said.
He lives now in the Land Park house where he was raised. Being on familiar territory helps. Never married, he counts on his close-knit extended family for assistance.
Bordisso receives state disability insurance and has applied for early benefits from Social Security, which has added early-onset Alzheimer’s to its expedited access list of “compassionate allowance” conditions.
“I’m used to being a responsible person and doing my part,” said Bordisso. “Being on the receiving end of services is a difficult place to be. I’d like to be a productive member of society. I want to be able to contribute.”
Not long ago, he was named to the Alzheimer’s Association’s early stage advocacy committee, a national advisory board.
And he finds new, unexpected meaning in this unwanted stage of life.
“I can’t recapture the past,” he said. “I don’t remember it. The future, I have no idea what it holds.
“The gift of this disease is to live in the moment. Now is all I have. Literally.”