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John-Richard Pagan, 56, has accomplished a lot. He was in the Navy for two years, he opened a coffee shop and he received his master’s degree in marriage and family therapy in 2012. When he started working on his doctorate the next year, he began to have cognitive difficulties. He was studying, but he was missing processes, he said.
After being tested, he was found to have mild cognitive impairment. Then on Dec. 16, 2016, Pagan said he was diagnosed with Lewy body dementia.
“It was the worst experience,” said Pagan, of Woodbridge, Virginia. “I was so angry. I didn’t know that you can still live beyond your diagnosis.”
He went to his parents’ home and cried.
“We said, ‘You’re moving in with us. You’ve got to be with family. This is where you belong,’ ” said his mother, Diana Pagan.
John-Richard Pagan has found a way to live fully with his diagnosis. He is the junior warden at his church. He also is active in the Dementia Action Alliance, a nonprofit advocacy organization of people living with dementia, advocates, caregiving partners and dementia specialists.
“As a gay man with dementia, I wanted to find a place that I was accepted and that’s what my faith community did for me,” Pagan said. “I get to know I have value and I get to let people know that I still have a life.”
Pagan knows that it’s easy to become isolated after a dementia diagnosis. “Finding community has been very important for me to get out of my own way and to start living in a ‘let’s live life today’ situation,” he says. “I’ve got community support with the Gay, Bisexual Men of Fredericksburg, which is a men’s group. Then I have my dementia advocacy work, which introduced me to support groups and speaking at conferences.”
Pagan recognizes that he’s fortunate to have family support. “Not everybody has a younger person to take care of them,” he said. “And for some people in the gay, lesbian community, they don’t even have parents to go back to. So, let’s not forget the individual who doesn’t have anyone and really can use community to help get them through.”
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