Struggling with early onset Alzheimer's

STUART, Fla. — Linda Sinotte was 52 when she started acting different.

She couldn't concentrate long enough to finish projects as a certified interpreter for the deaf. She couldn't remember how to switch user names on her home computer in Stuart, Fla.

For some time, her husband, Tom, stayed quiet. But then Linda went away with family on a trip to Disney.

“When they came back, they said, 'What's wrong with Linda?'” Tom Sinotte said.

Linda couldn't find her way back from the restroom when the family went to a restaurant. A friend had to carry her money so she wouldn't misplace it by putting it in unusual places like a drawer instead of her wallet.

She had a variety of medical tests and got different diagnoses from different doctors, from depression to attention deficit disorder. Finally, a PET scan revealed what was causing her to act differently.

Linda, now 55, has early-onset Alzheimer's.

That's not something you would expect to hear for someone this age,” Tom Sinotte said.

The early-onset form of the neurological disease affects people younger than 65 and accounts for as much as 5 percent of Alzheimer's cases in the U.S. — or about 200,000 people, according to the Alzheimer's Association.

The nonprofit organization estimates 5.3 million Americans have Alzheimer's. The costs of caring for those with the disease will total $200 billion this year, with more than half of it coming from Medicare, and are expected to soar in the coming years as baby boomers age.

Linda had to quit her job when her memory eroded. Tom also had to quit his job when he became a caregiver for Linda and also his parents, who are in later stages of Alzheimer's.

As the disease progresses, twisted and tangled protein fibers accumulate inside brain cells. That build-up begins in areas important for memory before spreading to other parts of the brain. It eventually leads to death and cannot be cured or prevented.

Some experts believe people who develop Alzheimer's before age 65 usually have a genetic mutation. They can show symptoms as young as age 35.

Linda tested positive for the ApoE4 gene, which increases risk of Alzheimer's and is carried by one in four Americans, according to Alzheimer's Disease Research, a branch of a nonprofit organization that helps to pay for studies of Alzheimer's and other diseases. She has an aunt who died from the disease and her mother has dementia.

Linda is still in the early stages of Alzheimer's. She can remember — and brags — that her 24-year-old daughter Kayla is getting her second master's degree in global sustainability at the University of South Florida. But conversations on the phone with her daughter have become scarce because she has difficulty remembering words.

“Her age mentality is getting younger, and I can definitely tell the difference,” Kayla Sinotte said.

Linda worked for nine years in the Jupiter school system and was one of the founders of the Deaf and Hard of Hearing Services of the Treasure Coast, a nonprofit that provides interpreters and other services locally. She quit after her diagnosis because she couldn't remember some of the sign language or find her way when commuting among schools.

“I kind of fell apart in the beginning. But I have a wonderful husband,” Linda Sinotte said.

She has been married to Tom for 25 years. The two met in New Hampshire, when Linda was managing a hostel in the White Mountains and Tom was doing a bike ride from Florida to raise funds for brain tumor treatment for his brother, who died at age 27. They moved to Florida because of the weather and because of Tom's work installing kitchens.

Two years ago, Tom quit his job to become a caregiver for Linda. Around the same time, he found out his mother and father, Ardis and Al Sinotte, also had Alzheimer's.

Tom was able to tell the signs of his parent's memory loss early on because of the research he did after his wife's diagnosis. His mother would call him crying on the phone because she couldn't pay her bills by herself. His parents, both in their late 80s, later told him that they let a pot melt into their glass-top stove and bought a new one to hide it.

His parents moved into Tom and Linda's house in Stuart shortly after.

“Everything happened at the same time,” Tom Sinotte said. “I was running around like a chicken with its head cut off.”

Linda wonders if her daughter, Kayla, could be the next in the family.

“I've taken memory tests, but I'm only 24. It's something that I will continue to have checked on,” Kayla Sinotte said.

People with early-onset Alzheimer's are fast-tracked into Social Security disability benefits and are eligible for Medicare two years after their diagnosis if they are younger than age 65. Linda receives benefits, but the cost of exams, health insurance and medication has used up most of the Sinottes' life savings.

The couple is in the process of filing for bankruptcy, Tom said.

Financial distress is common among people with early-onset Alzheimer's, said Donna True, program services coordinator with the Southeast Florida chapter of the Alzheimer's Association.

“If the person with the diagnosis cannot work, if they progress to a point where they need full-time care, who's going to provide if they are not well off financially?” True said.

Tom and Linda Sinotte have not decided where Linda will go when her Alzheimer's progresses to a point where she cannot live at home. She was part of a study to test an experimental drug called bapineuzumab. But the makers of the drug, Pfizer and Johnson & Johnson, announced last month they will discontinue the study she was in because it failed to improve cognitive performance compared to a placebo. Linda is now trying to enter other trials.

In the meantime, Tom said he watches her decline rapidly, faster than his parents. That quick progression is considered normal for patients with early-onset Alzheimer's disease, although experts cannot explain why.

Alzheimer's symptoms

According to the Alzheimer's Association, some warning signs of the disease include:

• Forgetting recently learned information, important dates or events or repeatedly asking for the same information

• Changes in ability to develop and follow a plan or work with numbers, such as following a familiar recipe or keeping track of monthly bills

• Losing track of dates, seasons and the passage of time

• Trouble understanding visual images and spatial relationships, which may cause problems with driving

• Stopping in the middle of a conversation and having no idea how to continue or having problems finding the right word

• Withdrawal from work or social activities

• Changes in mood and personality