NEW YORK (CBSNewYork) – Some health care facilities in our area say they are seeing more cases of early-onset dementia than ever before.
Rita Benezra Obeiter, a former pediatrician, was diagnosed several years ago, at age 59, with a rare form of dementia.
“She doesn’t remember what happened minutes ago,” her husband Robert Obeiter said.
Rob left his job two years ago to care for her. She attends Christian Healthcare Adult Day Services in Wyckoff, and aides help at home at night.
The couple has three adult children they raised in Ridgewood.
“They’ll have the same conversation with her every time they speak to her. In fact, several times,” Robert said.
Dementia is an umbrella term for diseases characterized by a decline in memory, language and other thinking skills needed to perform everyday activities. Alzheimer’s is the most common.
The National Institute of Health says there’s around 200,000 Americans in their 40s, 50s and early 60s with early onset Alzheimer’s. That’s 5-10% of people with Alzheimer’s.
Administrators at Harmony Village, an assisted living facility in Paramus for people with dementia, say they’re seeing an influx.
“Last weekend, I met with a family whose brother was 45,” said John Albanese, assistant administrator of CareOne Harmony Village. ”We have a resident here who’s 56. He has three teenage children at home and a wife.”
“Sometimes he doesn’t remember his kids?” asked CBS2’s Lisa Rozner.
“Correct, which is hard for the children,” Albanese said.
“Was always daddy’s girl. And she can’t come and visit dad. She finds it too emotionally draining,” said Risa Kory, CareOne Harmony Village administrator. “It’s very emotional. I myself find that you have to give 1000%, not only to the resident that’s living here, but to all the family members.”
The wife prompted the center to spearhead a free bi-monthly support group for spouses of those with early onset dementia. She asked us to conceal her identity because coworkers and friends do not know.
“The person is still there but the person you married is not there anymore… and every time you visit, and every week, he’s losing another ability,” she said. “And so it’s mourning a thousand deaths. And it’s a mourning that never ends.”
It’s like something out of movie such as 50 First Dates and Still Alice, where Julianne Moore’s character is diagnosed at age 50.
Dr. Manisha Parulekar, a geriatrician at Hackensack University Medical Center, says she believes movies like these and less of a stigma surrounding the disease are contributing to a rise in referrals, but there’s not enough studies to confirm a rise in cases.
That was the subject of a recent conference.
“They were talking about is there a rise in early dementia because of the processed foods and fertilizers or the other environmental hazards?” Dr. Parulekar said. “There are definitely some genes more associated with Alzheimer’s especially. And we actually see that more with early onset.”
“Is it treatable?” Rozner asked.
“Most of our treatments that we have, they could help us slow down the progression. We cannot really cure anybody,” Dr. Parulekar said. “There are some studies showing Mediterranean diet can be protective, doing cognitive exercises.”
She suggests exercises like crossword puzzles and Sudoku.
At Rita’s day center, the CEO says the focus is on mingling.
“By socializing and interacting with others, we can help to retain those portions of the memory as long as possible,” said Douglas Struyk, president & CEO of Christian Health Care Center.
While no one can predict the future of their health, there are ways financially that families can prepare, Rozner reported.
“It gets very expensive, it can be $150,000 a year or more,” said attorney Yale Hauptman, who, with his wife and fellow attorney Laurie, specializes in elder law. They say they’re seeing more clients with this problem, and recommend considering long term care insurance starting at the age of 40.
“It can pay for an aide to come into your home. It can pay for the cost of assisted living,” Yale Hauptman said. “Health insurance doesn’t cover long term care. Medicare doesn’t cover long term care.”
“Everyone over the age of 18 needs a power of attorney, a health one, a healthcare power of attorney and a financial one,” said Laurie Hauptman.
But even with the insurance, the mom Rozner spoke with says she could be in trouble.
“It has a monetary cap that may carry you for three, four years and after that you have to pay out of pocket,” she said. “Now I am the sole provider for them for my kids and taking care of my husband as well, so everything is on me.”
The families say one thing that their spouses remember is how they made them feel.
“I think he still remembers how I make him feel, and so when I get there he’s happy for the most part, and that, you know, yeah, makes my day,” the mom said.
A love the Obeiters will hold on to for as long as they can.
“So he proposed after I asked him,” Rita said.
“She forced my hand,” Rob said. “We’ve been married 43 and a half years.”
Harmony Village in Paramus has a free support group for loved ones of early-onset patients. Doctors say early diagnosis is key, and even people in their 40s should take note if they start forgetting longtime routines, and see a doctor.
The support group at CareOne Harmony Village in Paramus for families of those with early-onset dementia is free and open to the public. For more information, contact John Albanese at 551-275-7213.
For more information on early on-set dementia and symptoms, click here.