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Stigma between doctors, patients could prevent early Alzheimer's diagnosis

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Posted at 2:50 PM, Jun 29, 2021
and last updated 2021-06-29 16:50:20-04

There's a stigma associated with nearly every health condition, but perhaps none is more misunderstood than dementia.

“And this stigma can really overshadow the fact that people can live with dementia for many years and lead meaningful lives,” said Sarah Lenz Lock, with AARP and the Global Council on Brain Health.

AARP recently found that not only do a majority of people think those with dementia are judged harshly by society, but some doctors may also be reluctant to share a potential diagnosis.

“And what was so surprising about our research is that health care providers assume that their patients have a much more negative perspective of dementia than they actually do,” said Lock.

“I started noticing that it was getting more challenging for me to remember the information that I needed to report out,” said Jay Reinstein, who is living with younger-onset Alzheimer's disease.

Reinstein worked in local government for almost 30 years. At age 57, he noticed it was taking him longer to do basic tasks.

“The issue that really hit me was when I was speaking to a community group. And it was probably about 15 to 20 people in the room, and one of the citizens had asked me about the departments that I supported for the organization and there are six that I support, that I supervise, I couldn't remember any,” said Reinstein.

It took more than a year for Reinstein to get diagnosed with younger-onset Alzheimer’s disease.

“It was like a panic set and because I love working, I love being a public servant, I love working in local government and I knew that this diagnosis was going to change my life,” said Reinstein.

That was a little more than three years ago. He eventually retired and through the Alzheimer’s Association, he became an advocate and voice for younger people living with dementia.

“I think the other thing that that helps me a lot is just the socialization,” said Reinstein. “I'm in several support groups. And I see the decline of people in my support groups and it just, it kills me because some people are progressing faster, who are even younger than me.”

AARP and the Global Council on Brain Health also want people to know cognitive decline isn't inevitable in every case.

The best way to protect your brain is to live a healthy lifestyle and staying social. That's why Reinstein stays active with family, golf, advocacy, and a radio show once a week called, "Honest Conversations with Kev and J."