The earliest signs of dementia: Five people diagnosed with neurodegenerative diseases including Alzheimer's, Lewy Body and FTD, share the moments they first knew something was not quite right.
The early indicators of Alzheimer’s disease or dementia can be subtle — at times, imperceptible to the person experiencing them. Forgetfulness or struggling with everyday life are often assumed to be “normal aging.” As symptoms gradually develop, however, often the reality of something more serious sets in. Being Patient asked five people what first prompted them to seek out care.
John Wood is an award-winning art educator who taught grades kindergarten through 12th grade for over 20 years. Wood was first diagnosed with Alzheimer’s disease in 2014 at 46 years old. About a year later, after further testing at Cleveland Clinic, that diagnosis was revised to frontotemporal dementia.
“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. I had a clipboard with my schedule on it. When you have trouble remembering, even those things don’t really help. A lot of times when I was having trouble with my memory, it was kind of like, ‘Oh, John’s just John. He forgets,’ because some of the things were pretty subtle. But when I think back on it, there were other times like when I would get lost driving.” –John Wood
Kathy Collins was diagnosed with early-onset dementia at the age of 57. She and twin sister Jean Collins decided to start a TikTok account, “The Kathy Project,” to track Kathy’s journey with dementia, helping raise awareness about dementia among tens of thousands of followers with over a million likes.
Kathy Collins: “I didn’t understand what was happening to me at first. And I would cry quite frequently and be, you know, a cry baby I guess. Lots of anxiety — tons of anxiety.”
Jean Collins: “I was shocked by her condition. She wasn’t herself. I assumed it was probably a mental health issue that she was probably having depression or whatever. You were constantly wringing your hands.
Kathy Collins: “I would do the shopping and I would forget something.”
Jean Collins: “Or she couldn’t remember her husband at the time, couldn’t remember his brand of cigarettes. Lots of repetitive behaviors, like playing Mahjong and Solitaire all day long for hours and hours, all day long.”
“Lots of repetitive behaviors, like playing Mahjong
and Solitaire all day long for hours and hours, all day long.”
Don Kent was misdiagnosed by six different neurologists before being accurately diagnosed with Lewy Body Dementia at the Mayo Clinic at the age of 64. Today, he is an advocate for others living with the disease. He told being patient about some of the early dementia symptoms he experienced:
“Looking back I can tell that my thinking became a little cloudy, even early on. But the symptoms I recognized first were two things: one, a change of personality. 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. 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. At about the same time, I also felt a loss of my sense of taste, and I say loss because to me it was a loss, but overtime I’ve learned that it’s a hallucination, a taste hallucination. Of course, with Lewy Body we can have hallucinations with all of our senses. So, for me it was a loss of a sense of taste and a rather abrupt personality change.” –Don Kent
“I’ve always been a sort of laid-back person, very slow to
anger and relatively cool under pressure. 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.”
Eugenia Zukerman is an internationally renowned flutist, a former correspondent for CBS News Sunday Morning and the author of multiple novels, screenplays and book reviews. She was diagnosed with Alzheimer’s at 72 years old. Her daughters first noticed her early dementia symptoms:
“I’ve always had multiple things that I’m doing at the same time, and I didn’t really notice much. It was my daughters who said to me, ‘You’re not making a lot of sense,’ and I would say ‘Oh, that doesn’t matter.’ It kept going to the point where my daughter said, ‘I’m going to take you and you’re going to be tested.’ So, we got into the subway, went uptown, and I was tested. And I was very surprised at the results, because it turned out that indeed I had the early Alzheimer’s signals.
So I went through the series of tests, and I’m probably one of the only people you might know who enjoyed having the CAT scan because I loved the music. There was no fear in this, and my daughter and I got back into the subway laughing our way back to our places in the city. I went up into my apartment, I sat down at my desk, and I stared at the wall for quite a long time. And then for some reason I picked up paper and pencil and started writing.” -Eugenia Zukerman
“It was my daughters who said to me,
‘You’re not making a lot of sense.’”
Chris Schwilk, a former associate professor of special education at Shippensburg University, was diagnosed with Lewy body dementia in 2016.
“I was a university professor [who] trained special education teachers. In my teaching, preparation, grading, I could tell something was off as far back as 2014. I mentioned it to my primary care physician who’s known me for [roughly 20 years] and he said: ‘You’re probably just getting older, but let’s send you for an MRI and make sure you don’t have Alzheimer’s.’ When they sent me for an MRI and I didn’t have Alzheimer’s, I’m like: ‘Cool. Everything’s great, wonderful.’ But over the next couple of years, work just kept getting more difficult. My driving was becoming problematic. Not that I was dangerous, in fact I’m still driving right now with the blessing of my neurologist, but I began not feeling comfortable and having problems with depth perception.” –Chris Schwilk
“My driving was becoming problematic. Not that I was
dangerous, in fact I’m still driving right now with the blessing
of my neurologist, but I began not feeling comfortable
and having problems with depth perception.”
Arthena Caston previously worked in customer support for a large insurance company before getting diagnosed with early-onset Alzheimer’s at age 51. She is now one of two individuals living with dementia to serve on the Alzheimer’s Association’s Board of Directors.
“I would get lost in the building. I would
forget where I was supposed to be next.”
“I knew something was wrong because I had witnessed my father and six of his brothers and sisters either diagnosed or in the stages of early onset or Alzheimer’s disease. I knew I started having a problem when I just could not seem to get simple things right. I was doing a little bit of forgetting and things I had known forever were now all of a sudden not commonplace for me anymore. I had been working with an insurance company for over 20 years and I talked to customers everyday.
“I started having a problem when I just could
not seem to get simple things right. I had to keep
writing things down. I kept saying, ‘I should know this.
I shouldn’t have to wonder why I can’t remember.’”
Things that I knew to tell them about their coverage or insurance was basically all of a sudden not there. I had to keep writing things down. I kept saying, ‘I should know this. I shouldn’t have to wonder why I can’t remember.’ It’s something as simple as I went to work one day, got off work and had left my car running the whole eight hours in the parking lot. That was not the beginning, but near the end of when I knew something was wrong.” –Arthena Caston
Transcripts edited for clarity.