Brotherhood of dementia shares how to live a purposeful life

LANSING, Mich. (WILX) - More than 3 million people every year are diagnosed with dementia. It’s a condition that can affect everyone from the patient to their families and caregivers. A group of men living with dementia shared their stories at MSU Thursday and say despite the disease, they are choosing to live their lives with a positive perspective.

“Do you know Lewy?” said Barry Kaufman. “Lewy is a part of our family. There is Annette, myself and Lewy.”

Lewy refers to Lewy body dementia. It’s a disease that’s been a part of Barry Kaufman’s life for more than 15 years. It’s a disease that has no cure and will eventually take Kaufman’s memory and balance.

It’s the same disease that comic Robin Williams was diagnosed with. Kaufman says there were hard days after he started showing signs of the disease.

“It was one of those why me. What the heck did I do to deserve this,” said Kaufman.

Kaufman along with others shared their stories Thursday at Michigan State University’s AgeAlive research forum about living a purposeful life. They say often we pay attention to the things we can’t do, but there are a lot of things that you can do. Kaufman says despite the diagnosis, he’s trying to laugh his way through the challenges.

“It’s there it’s forever and you gotta learn to live with it,” said Kaufman.

Mark Roberts was diagnosed at the age of 62 with vascular dementia in 2014. He struggled to maintain a job with high attention to detail and couldn’t understand why.

“I go to measure something. I cut it (and) it’s the wrong size and I’ll be off just a smidge, and I do that over and over again,” said Roberts. After the diagnosis, he started to share his story and his wife noticed a big difference.

“All of a sudden, when we were leaving those events, he was sitting up a little taller standing a little taller,” said Brenda Roberts, executive director of the National Council Of Dementia Minds.

For many, it can be hard sharing the news with family, but Kaufman says not to be afraid to let family and friends know.

“We may have dementia, but we’re not people who are gone,” said Kaufman. They are people who are living a life filled with hope, support and fearlessness.

The Brotherhood of Dementia says while there’s no cure, there is help and support for families of loved ones who have been diagnosed with dementia.

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