By Chris Adams

Diana Blackwelder remembers well the first time she didn’t remember at all.

She was still in her 30s, and a professor in graduate school claimed she had told the class something – but she somehow completely missed the conversation. She was upset at the time but thought it must have been the professor’s fault.

But eventually, Blackwelder started to question her memory and lose her confidence. By the time she was in her 50s, she would make charts with names and photos so she could remember her colleagues after a three-day weekend. She took notes after weekly hikes with her friends so she could remember the following week what they had said.

Or she would walk into her regular grocery and feel lost. “It was as if they had literally put everything in a different place,” she said.

An electrical and computer engineer, she was diagnosed in 2017 at age 55 with younger-onset Alzheimer’s disease.

She told her story to National Press Foundation fellows and was joined by people experiencing Alzheimer’s and dementia as caregivers.

The session was held at  Iona Senior Services, a health care provider in  Washington, D.C., that has adult day health programs and support groups for those dealing with dementia.

People in Iona’s support groups come in as pairs – one person diagnosed with dementia, the other a caregiver. They do some activities together but then break into two separate support groups – one for the caregivers, one for those with dementia. Each has separate challenges.

“People usually join the group in early to middle stages of Alzheimer’s,” said Bill Amt, an Iona program manager who oversees groups of people diagnosed with dementia. Over time, the caregivers group will retain its numbers, while the group of people with dementia will dwindle in size as members advance to more severe stages of the disease.

“People in my group age out,” Amt said. The group focuses on how to live – and cope – with the disease. “What’s it like living with these changing abilities?” he said.

Fellows also heard from two people caring for their loved ones: John Collinge, a caregiver for his wife, Zandra Flemister, who is now in long-term care for early onset dementia; and Sandra Swann, who is caring for her mother with Alzheimer’s disease.