SOUTH PORTLAND — When Donna Beveridge was diagnosed with Alzheimer’s, the former educator stopped working, got a dog, took up painting and began teaching about living with the disease.

And four years later, she is taking part in an experimental drug study by Yale University.

“I don’t know if I’m getting the real stuff or (a placebo). But I know I am doing something to help other people with Alzheimer’s,” she said.

Beveridge and others who are in the early stages of the disease spoke to caregivers and people with dementia Tuesday during a forum at the Wyndham Portland Airport Hotel. About 150 people attended the annual statewide conference organized by the Maine chapter of the Alzheimer’s Association.

Panelists and speakers talked about living safely at home, understanding the stages of the disease and managing its effects on family relationships. The conference also focused on how patients can have active lives and even fight back against the disease.

“You’re seeing a great willingness to be activists about it,” said Dr. Laurel Coleman, a geriatric specialist at Maine Medical Center and an association board member.

“The Alzheimer’s Association also is becoming more active in our demands (for research and support),” Coleman said. “Because of the rising tide of people being affected, this is going to bankrupt our society. We can’t just say, ‘Please, please’ anymore.”

An estimated 30,000 Mainers have Alzheimer’s, a progressive disease that destroys brain cells and can affect memory, reasoning and behavior. More than 147,000 friends and family members provide unpaid care for them.

With baby boomers reaching the age when the chances of being diagnosed begin to rise, the number of Mainers with Alzheimer’s is expected to triple over the next 40 years.

Beveridge, who is 68 and lives in Saco, said her early diagnosis allowed her to start medication and dramatically slow the effects of the disease.

Still, she had to stop working before she was ready to retire. “I thought, ‘What am I going to do to bring passion and meaning to my life?’” she said, “I’m still able, in my own way, to be a teacher.”

The sense of losing purpose is common for people with Alzheimer’s, especially those who are younger when they’re diagnosed and have to give up a job or career, said Coleman.

They often benefit from getting involved in volunteer activities, or even scientific research, Coleman said. “Social engagement challenges your brain,” she said.

Deb Sangillo of Scarborough, who spoke as part of the panel, said she has family members and friends who help keep her active. “Don’t get isolated,” she said.

Andrea Stephens of Portland said that, in addition to the people who help care for her, she is surrounded by pets. The dogs and cats are both a comfort and a responsibility that keeps her active, she said.

“A dog can get you going anywhere,” she said. “That keeps me happy.”

Beveridge agreed with the pet advice, and said it’s important that people don’t just retreat from life after being diagnosed.

“There is still life after Alzheimer’s,” she said. “There are still gifts you can give.”

 

Staff Writer John Richardson can be contacted at 791-6324 or at: [email protected]