Persons with Dementia Share Stories of Their Pre-Diagnosis Symptoms



Several persons diagnosed with early-onset dementia recount their stories of first noticing their symptoms in a recently published oral history of their early dementia.

In a recent Being Patient article, individuals with varying dementia types shared moments of when they first knew something was amiss, including John Wood, an art educator living with FTD.

“Before 2014, at work where I was teaching at the Detroit School of Arts, I would get lost in the building. I would forget where I was supposed to be next. I tried to compensate for it with notes,” Wood said in the article. “I would forget where I was supposed to be next. I tried to compensate for it with notes. I had a clipboard with my schedule on it. When you have trouble remembering, even those things don’t really help.”

Kathy Collins, who was diagnosed with early-onset dementia at age 57, said she didn’t understand what was happening to her when her symptoms emerged.

“I would cry quite frequently and be, you know, a cry baby, I guess. Lots of anxiety — tons of anxiety,” she said.

Don Kent, who has Lewy body dementia, shared that his family noticed his change in behavior before he realized something was going on.

“I didn’t notice it so much as my wife and my son noticed it, and they said, ‘What’s wrong with Dad?’ I’ve always been a sort of laid-back person, very slow to anger and relatively cool under pressure,” Kent recalled. “I was a trial lawyer, so in a courtroom you have to remain that way. And all of a sudden, I had this sort of explosive personality, very angry, saying mean things to people which I had never done before.”

Read the full Being Patient article here.