CLEVELAND — There are moments in life when things start to change. For Bernice Outler, 84, her children noticed differences about three years ago.
“We initially noticed short-term memory loss, cognitively, she just kind of is a little forgetful, saying things repetitively, forgetting things, asking questions over and over again, sometimes missing appointments, different things like that,” said Outler’s Youngest Daughter, Ronda Crayton.
Although she's spunky and full of life, Outler was in the early stages of dementia. “It was difficult because I’m active, very active but with the help of my children and all, I don’t think I’ve missed out on too much,” she said.
She dances, loves to shop, goes to the gym and loves to talk.
“I love entertaining, my ministry, I’m one of Jehovah’s Witnesses,” said Outler. “I like to travel, the kids take me where I want to go, I enjoy myself, they look out for me.”
Other than not driving much anymore, Outler said she doesn’t feel any different.
Her three daughters, grandchildren and extended family help as much as possible. It’s something the family has dealt with before because Outler’s mother also had dementia.
“It’s important to catch it early because the more we learn about it, the more more it will help us as well,” said Crayton.
Cleveland-based non-profit, Benjamin Rose, is actively recruiting for a dementia related clinical trial. The organization is making a concerted effort to attract Black families into the SHARE Program. It stands for Support Health Activities Resources Education.
“We want to get people educated on dementia so they can make plans that make sense, make plans that are more informed,” said Benjamin Rose Research Assistant, Donna Salaam.
“This innovative study is a national effort because we want people from all over the country that are African American to get better care so we can reduce the disparities in dementia," she said.
Salaam said the patient and caregiver are assigned a trained counselor to assist with setting up a care plan, making informed decisions and building a network of support for those with early to moderate stage dementia. The program is virtual.
“The thing about getting someone involved in SHARE early on is there’s a unique window of opportunity in the early to moderate stages where the person living with dementia will have an opportunity to have their voice heard,” she said. “[To] play a major role in the decision-making and future care planning.
Outler and Crayton are participating and have already found benefits.
“It’s something that people don’t want to talk about but if you don’t talk about it, you won’t learn anything or if you keep it to yourself, you won’t get the help you need,” said Cratyon. “If someone sees someone like my mom that’s willing to reach out and get that type of help, they may be willing to actually be more involved.”
For more information, contact Donna Salaam at 216-373-1747
