Fewer than half of Alzheimer’s patients learn diagnosis from doctor

A new study from the Alzheimer’s Association say doctors are trying to protect patients from emotional distress.

A new report shows that 45 percent of people with Alzheimer’s disease say they were told of the diagnosis by their doctor.

Witholding or delaying a diagnosis limits a person’s capacity to make decisions about his or her care plans, participate in research and fulfill lifelong plans, Eric VanVlymen, Executive Director of the Miami Valley’s Alzheimer’s Association said.

“We believe that it is important for doctors to be forthcoming about a diagnosis,” VanVlymen said.

The report, released this week by the Alzheimer’s Association, found that health care providers may opt out of disclosing an Alzheimer’s diagnosis for fear of causing the patient emotional distress.

Miami Township resident Pat Settles, whose husband passed in 2013 after a 10 year battle with Alzheimer’s, shook her head at the idea.

“I appreciate the fact that we knew,” Settles said. “If our doctor has said ‘Oh, everybody forgets things — I wouldn’t worry about it,’ then we would have been in really bad shape a lot sooner.”

Settles said she noticed something was off when her husband, Jack, began repeatedly asking her the same questions. She wrote it off, telling herself that her husband was simply “not a good listener.” In 2003, they learned it was more than that.

Settles said that, because of her husband’s early diagnosis, they had the time they needed to prepare for the future.

“I would say he had a good five years that he was able to spend helping people, doing the things he needed to do and, I think, doing what God intended him to do,” Settles said.

Eric VanVlymen wants that for every Alzheimer’s patient.

“People don’t want to talk about Alzheimer’s so doctors have learned not to mention it,” VanVlymen said. “We have to begin to increase that conversation.”

According the report, an estimated 5.3 million Americans have Alzheimer’s disease in 2015, including 210,000 in Ohio. Barring the development of medical breakthroughs, the number of Americans with Alzheimer’s disease will nearly triple by 2050.

The Alzheimer’s Association offers support groups for those in need of emotional support. For more information, call the Helpline at 1-800-272-3900.

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