Posts Tagged "Duke Dementia Family Support Program"

Woman with Dementia Gets Lots of Support

Robert and Brenda Lugar

In the 3 1/2 years since Brenda Lugar was diagnosed with dementia due to Lewy body disease, she has found great comfort in the people who want to make her life a little easier.

This support takes many forms. At church on Sunday mornings, Shirley always reminds Lugar of her name. When Lugar is writing an email, she knows it’s okay to text her friend, Michele, or her sister-in-law, Janet, for help finding the right word. Lugar’s husband of 43 years, Robert Lugar, recently bought her a special board for Christmas so she has a place to work on her jigsaw puzzles – and he insisted she open it early and start enjoying it now.

“Just that little thing – it meant a lot,” she said in a recent interview.

It’s common for people who are grappling with the painful reality of a dementia diagnosis to deny their condition or hide it from others. But not Brenda. Asking for the support she needs – and getting it – is “soul cleansing,” she said.

Lugar, who is 62, didn’t arrive at this place immediately. When a neurologist at Duke University Medical Center diagnosed her, her initial reaction was denial. “I said, ‘Oh you can cure me.’ He said, ‘I can’t cure you but I can slow it,’ ” she said. “When he said that, I knew that wasn’t good. I kind of shut down.”

Lewy body disease is a condition in which abnormal protein deposits in the brain can cause dementia. For Lugar, disclosing her disease gives her an odd sense of relief – it’s an explanation to others for her memory loss, her intermittent hallucinations about animals, and her uneven performance at work. “I had to tell people, because I wasn’t the same person,” she said.

She even shared her condition with a store clerk to explain her fumbling with the credit card reader. “If I tell them [and] if they have any decency in them, they’ll treat me better,” she said.

Barbara Matchar, director of the Duke Dementia Family Support Program, which Lugar participates in, said that people like Lugar “who are open about their diagnosis often feel relieved.”

Lugar was diagnosed in 2017 after she noticed frightening things happening to her at work. …Learn More