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Experts say people with Alzheimer’s want people to know that their disease doesn’t define them. SolStock/Getty Images
  • The Alzheimer’s Association has released a list of 6 things they say people with the disease would like people to know.
  • Among them are that their disease doesn’t define them and it’s OK to ask them how they’re doing.
  • Experts say loneliness and social isolation can increase the risk of developing dementia.

Rod Stephenson doesn’t hesitate to tell you he’s living with mild cognitive impairment, an early stage of memory loss.

The 75-year-old Georgia man says the symptoms were there before he received an official diagnosis in 2020.

Stephenson told Healthline he had noticed gaps in his memory. For example, he couldn’t remember a summer vacation with his children and grandchildren.

Stephenson was somewhat relieved to finally learn why he had those memory gaps and decided he wasn’t going to hide his diagnosis.

“Secrecy is the enemy,” he said. “Negative things can happen when one is secretive about being diagnosed with Alzheimer’s or [mild cognitive impairment,]” he told Healthline.

“The first is that it separates you from folks, at least emotionally, and it makes you feel apart and alone. None of which has to be true” he explained.

“I’m wearing a T-shirt right now. I’m more than happy for folks to approach me with any questions they might have about how I’m doing, or what Alzheimer’s is all about,” he added.

June has been designated as Alzheimer’s and Brain Awareness Month.

The Alzheimer’s Association is launching the month by revealing some insights from people living with early-stage dementia. They talk about stigmas, misconceptions, and what they wish others knew about them.

Stephenson’s points about not keeping things secret fall in line with the association’s “Six Things People Living with Alzheimer’s Disease and Other Dementia Want You to Know.”

Here’s a summary:

  • My Alzheimer’s diagnosis doesn’t define me.
  • If you want to know how I’m doing, just ask me.
  • Yes, younger people can have dementia, too.
  • Please don’t debate my diagnosis. Don’t tell me I don’t look like I have Alzheimer’s.
  • Understand that sometimes my words and actions are not me, it’s my disease.
  • Remember that an Alzheimer’s diagnosis doesn’t mean that my life is over.

“I think this is a really positive thing. There are millions of people living with Alzheimer’s and other types of dementia right now and many millions more are predicted,” said Dr. Scott Kaiser, a geriatrician and director of Geriatric Cognitive Health for the Pacific Neuroscience Institute at Providence Saint John’s Health Center in Santa Monica, California.

“There’s a lot of work that needs to be done to raise awareness around Alzheimer’s and other types of dementia,” he told Healthline.

Experts say the number of people in the United States living with Alzheimer’s is growing quickly. More than 6 million Americans of all ages have Alzheimer’s. By 2050, that number is projected to rise to nearly 13 million.

Between 12 and 18 percent of people 60 or older are living with mild cognitive impairment.

Kaiser says there is also lots of work to be done to reduce the stigma around dementia.

“Some people go to great lengths to hide their diagnosis and not let people know they’re living with Alzheimer’s disease,” he said. “Keeping it secret adds a lot of pressure that maybe doesn’t need to be there.”

A 2020 National Academies of Sciences-Engineering-Medicine study concluded that approximately a quarter of Americans aged 65 or older who live in communities are socially isolated.

They often live alone, have lost family and friends, and may have chronic illnesses and sensory impairment. That loneliness predisposes them to disease.

“Loneliness is a major risk factor for developing dementia. People who are chronically lonely are more likely to develop Alzheimer’s disease,” Kaiser said. “And it turns out that not only is loneliness and social isolation a risk factor for developing dementia, but it appears to be more common among people who have dementia, and caregivers of people who have dementia.”

Kaiser says it becomes more important for others to learn how to effectively communicate with and engage someone who might be cognitively impaired. That helps to eliminate the stigma and is a more embracing approach.

Stephenson says there’s another reason he isn’t secretive about his diagnosis.

He wants to help educate others who may find themselves or someone they know with a similar diagnosis.

“When you’re secretive, it removes you from the pool of folks who could possibly benefit from hearing about new medical developments,” he said.

The former broadcaster and retired ordained pastor says he’s even busier now, working as an advocate and sharing what he’s learned along his journey. He says one frustration is losing what he calls his “excellent geographic sense.”

“If I had been someplace once I could go back there from anywhere without maps or directions because I knew where it was… Now that’s going away,” he said. “I’m still very comfortable around town and so forth. But if we’re going to drive to Augusta or something… GPS is our friend.”

Stephenson is not sure where this journey will take him. There’s no GPS for that.

He says his mother had Alzheimer’s for the final 20 years of her life. She lived to be 98. But it doesn’t mean that will be his path.

For now, Stephenson relies heavily on his faith. He and his wife, Deb, prayed that he could be an instrument to share his story with those coming behind him. They say the work is empowering.

“It’s a wonderful feeling,” he explained. “Because of Alzheimer’s, I say we have developed a stronger pearl.”