Woman with Dementia Gets Lots of Support

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. At the time, she held a demanding job as a program assistant for the Duke-Johnson & Johnson Nurse Leadership Program. As an integral part of the fellowship program, she kept it on track and processed the applications to the program.

Suddenly, busy work days were being punctuated by days in which she didn’t know what she was supposed to be doing. She would stare out her office window for hours. To make up for lost time, she’d work until midnight at home. “I would always strive for excellence, and I thought, ‘I’ve got to figure this out or I’m going to lose my job,’ ” said Lugar, who went on disability after leaving Duke.

But the same woman who skillfully juggled that demanding job has retained her problem-solving talents. If she gets lost at Walmart, she calls her husband and tells him what aisle she’s in. If she can’t recall whether she brushed her teeth, she feels the bristles to see if they’re wet. She has no real sense of time, so she sets a timer when she hops in the shower.

People with dementia have more than their share of heartbreaks. Lugar and her son are very close, but she senses he has had a hard time accepting that she has Lewy body disease. And she dreaded telling her parents and extended family about it, because they would worry.

One of her greatest comforts is her support group at Duke. They share their common experiences in regular meetings, which have moved to Zoom during the pandemic. The group members feel free to say whatever they want and are reassured when the others nod in recognition of what the speaker is going through.

“You can tell when we hit something, and we all get it,” Lugar said.

Squared Away writer Kim Blanton invites you to follow us on Twitter @SquaredAwayBC. To stay current on our blog, please join our free email list. You’ll receive just one email each week – with links to the two new posts for that week – when you sign up here. This blog is supported by the Center for Retirement Research at Boston College.