NEW YORK - The U.S. Senate's Aging Committee held a hearing Wednesday on the fight against Alzheimer's. Former model, and TV host B. Smith was present to talk about her struggles with the disease and how she and her husband are tacking action against it.
"I'm B. Smith and I suffer from Alzheimer's disease," says B. Smith in an online video for the Brain Health Registry.
She and husband Dan Gasby are promoting the registry, which offers free online cognitive screenings. A new report by the Alzheimer's Association found only 45 percent of people with Alzheimer's or their caregivers are given the diagnosis by their doctor.
"The reason we're doing this is to show people not to hide," said Gasby. "There's such a stigma attached to it."
The goal of the registry is to increase the number of clinical trial volunteers, especially in minority populations.
Smith went public with her diagnosis last June. When I asked her then if she remembered the first dish she made she told me it was pineapple upside down cake. This year when I asked her same question, she remembered.
"Upside down cake," she answered.
The disease is eroding her short term memory and reasoning, as shown by a terrifying incident last fall. A family member put Smith on a bus in New York City to their home in Sag Harbor, NY. Gasby was waiting at the other end but Smith never showed.
"I was horrified because I know that after 24 hours the possibilities of not finding someone go up dramatically," said Gasby.
It turns out Smith had gotten off the bus when it stopped for other passengers just blocks from where she had boarded.
"I wanted to explore a few things, see what was going on," Smith recalled.
That night she took a ferry to Staten Island. She says she got on the boat and had a fun time. The next morning a family friend happened to spot Smith at a diner back in Manhattan.
Smith says it didn't cross her mind that her husband would be worried but added that after the incident she looks at things differently.
"I knew better afterwards," she said. "I wouldn't do that again."
Gasby says he realizes he'll need more help as the disease progresses. Smith is tepid about the idea but Gasby needs his wife of 22 years to feel the same.
One reason for telling patients they have dementia is to allow time for discussion about future caregiving, before reasoning is lost. Otherwise patients may end up refusing care and family can be left wondering what would their love ones have wanted.