Early-Onset Alzheimer's Is Almost Always A Family Tragedy

Rhiana Kohl knew that something was really wrong when she found out her husband, Alfredo Bartolozzi, had left the family’s finances in ruin back in 2013. Bills had not been paid, debt had piled up, she was afraid they might lose the house. At that point, the changes in his behavior over the previous three years could be more serious than she thought.

Shortly after Kohl discovered about the finances, Bartolozzi, a 48-year-old with two teenage girls, was given a diagnosis of early onset Alzheimer’s

According to the Alzheimer’s Association, 200,000 people in the U.S. are diagnosed with Alzheimer’s before 65.

In an interview with the Boston Globe, Bartolozzi spoke slowly, struggling to describe his experiences and changing conversational direction.

“And, um. Life’s OK. It could be much better,” he commented. “It’s just difficult with my diagnosis."

"I really have a hard time with it. Sometimes I just take it and put it aside, but when it comes up to this and people want to talk to me and stuff, I get a little upset and confused and what not."

"It’s a good place to be in, great doctors. I like the outdoors very much. We both do. Two great kids.”

Bartolozzi is a patient of Dr. Rudy Tanzi, a professor of neurology at Harvard Medical School and director of the Genetics and Aging Unit at Mass General.

Dr. Mark Albers, a neurologist at Mass General and another of Bartolozzi’s doctors, notes only about 5 percent of Alzheimer’s patients are early onset, and more than half of early onset patients are between 50 and 65.

“Alfredo is quite atypical because of the early onset, and then even within the early onset, he’s very early onset,” Albers noted.

Kohl first started noticing changes in her husband’s behavior five years ago. Examinations by doctors led to diagnoses of stress, depression, and adult ADHD.

Dr Albers highlighted that there is a large group of patients, like Bartolozzi, whose first symptoms involve other functions of the brain besides memory.

“They could lead to changes in behavioral patterns, social behavior, disinhibited social behavior,” he said. “It can be depression as the first manifestation.”

Alzheimer’s gets worse over time and Bartolozzi has reached a stage with behavioral symptoms like irritability, agitation, paranoia, and hallucinations. Medications can help the symptoms but won’t slow the disease, Albers pointed out.

Kohl described her husband’s cognition as sometimes leveling off for a while, then dropping and leveling off again.

It has not been easy for the family to cope. The icons on Bartolozzi’s phone became too confusing for him, so Kohl and his daughters deleted all the other stuff except the message and call app, but he still has to have help finding his contacts and making a call.

Bartolozzi also often withdraws from his daughters because it’s easier, but then ends up feeling alone and isolated.

“A lot of times I’m just at home by myself with the dog. And it’s difficult,” Bartolozzi explains, trying not to get too emotional. “I just wish I could snap and make it all better…I just hold on to my memories with my kids and hopefully, hope for the best."

"You never know. Something comes down the pike and they have a different drug or whatever…Whatever it takes. But I do feel for my two daughters. They kind of mask it a little bit and that’s fine.”

The family says they are going to cherish the time they have together. Kohl has recently transferred the family’s home movies over to digital, and they just re-watched quite a few past Christmas mornings and family gatherings.

“It’s tough. It can be pretty hard on me as far as my girls, I’m sure it’s hard on them,” Bartolozzi commented, then nudged his wife with his hip. “This one is the rock, she’s the one that keeps it all together.”

Source: Good Housekeeping, Boston
Photo: Rhiana Kohl, Jean Nagy

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