Est. 200,000 Americans Living With Early Alzheimer's -- and They Have Not Hit 65

Alarming statistics shows early-onset of the disease hitting more in midlife.

August 1, 2009, 5:14 PM

WINDSOR, Conn., Aug. 1, 2009 — -- At the age of 46, Jay Jones started to change.

The owner of a $20 million yacht dealership and married for only two years to his wife, Laura, Jones noticed subtle differences. His wife began noticing them, too.

"The beginning was the personality changes," Laura Jones said. "He was more agitated. He was more nervous and then getting lost."

What the couple would find out was that he had developed an early-onset form of Alzheimer's, which was slowly robbing him of an otherwise healthy life and the ability to form and retrieve new memories. He is only 52.

Jay Jones is not the typical face of an Alzheimer's patient -- but one that is younger and growing in numbers.

With his wife by his side and her notes in his hands, Jay Jones read aloud what it is like to live with Alzheimer's disease at a Social Security Administration hearing in Chicago last week.

He is fighting for change and a better chance for survival.

The government hearing sought to bring more Social Security disability benefits to those in their 40s and 50s suffering from Alzheimer's disease -- with less red tape -- and to fast-track the disability benefit claiming process.

A new report released by the Alzheimer's Association shows that Jay Jones is among many others suffering from the disease at the prime of their life.

The report says that an estimated 200,000 Americans under the age of 65 now have early onset Alzheimer's, and it accounts for an estimated 40 percent of dementia cases for those under 65.

This attempt to receive benefits from midlife adults comes as a surprise since Alzheimer's affects 5.1 million people age 65 and older, according to the Alzheimer's Association.

"[S]uddenly all things you know become unfamiliar," Jones said. "It was hard for me because people see a healthy, young 52-year-old man who is physically fit ... yet this disease invades your mind."

Laura Jones recalled that little things, such as his commute home from work, changed. He would turn right instead of left. That led to a visit to the family physician.

The doctor, however, dismissed it as job-related stress. Over the next three years, Jay Jones' symptoms grew more severe and more frequent. Finally, at age 49, he saw a neurologist who made the diagnosis: Alzheimer's disease.

A Devastating Discovery: Early On-Set Alzheimer's

Jay and Laura Jones could not believe the news. They started sobbing right there in the lobby.

"He's too young. This is my husband," she said. "He's the president of the company. How could he have Alzheimer's?"

So today, as his memory slowly dims, the family has come to accept ... and to adapt. Jay Jones' daily schedule is posted in the kitchen each morning, but it can only help so much.

Forgetfulness is the cause of most of his worries -- even things as simple as completing a sentence.

The hardest part for him has been fading away from his 6-year-old daughter.

"I think about her all the time. How long I'm going to be able to be with her," Jones said.

At least for now there are still moments to savor.

"We've gotten really good at living in today and being happy at what we have," Laura said. "Life is not over."

For more information about Alzheimer's disease, visit our OnCall+ section.

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