About three years ago, Cassandre Pemberton and her family were faced with life-changing news when her husband, Joe, was diagnosed with early-onset Alzheimer’s.
Early-onset Alzheimer’s is an uncommon form of dementia that affects people before the age of 65. In the US, around 200,000 people are believed to be living with the condition. The 2024 Alzheimer’s Association report confirmed this estimate, noting that approximately 200,000 people under 65 years have younger-onset Alzheimer’s disease in the United States alone.
Joe, who previously worked in law enforcement, received his diagnosis at 53 years old. However, the earliest signs had started to appear roughly two years before that. Getting an accurate diagnosis of early-onset Alzheimer’s can be particularly challenging, as healthcare providers often do not look for Alzheimer’s disease in younger people, and symptoms may be incorrectly attributed to stress or other conditions.
One of the first things Cassandre noticed was a change in Joe’s short-term memory.
“He would ask me a question and I would answer it and two minutes later he’d ask me the exact same question as if I we had never discussed it before,” Cassandre explained.
She also became concerned when he began losing everyday items, something she said was out of character for him.
“He started losing things, simple things,” she added. “He was always a pretty organized guy, so it was concerning to me.”
Five years on from those first symptoms, Joe’s condition has worsened considerably. Early-onset Alzheimer’s is often associated with more aggressive disease progression compared to late-onset forms, meaning cognitive and functional decline can happen more rapidly.
Cassandre said his difficulties now go beyond the short-term memory issues that first stood out.
She said: “Now it’s short-term memory, some long-term memory, not a lot, and procedural.
“Like doing things in the right order, remembering to shut doors, things that could become a safety issue. He couldn’t cook right now, or if I give him a task he kind of forgets what he’s supposed to do by the time he gets to it.”
According to Cassandre, Joe’s speech has also become more limited over time.
Now retired from her own law enforcement career, the 47-year-old looks after Joe full-time because he needs constant support. Like many spouses caring for partners with early-onset Alzheimer’s, Cassandre has taken on the full responsibilities of daily caregiving while managing the emotional toll of watching her husband’s condition progress.
“He’s constantly seeking where his people are,” Cassandre added. “He doesn’t really like to be alone for too long. I provide all food, I help him with all hygiene, medication. Anything that would require him to be sustained is pretty much on me.”
While Joe still understands that he has the disease, Cassandre said he had a stronger awareness of the diagnosis in the earlier stages.
“He definitely had some anger about it,” she added of Joe when he was first told of the early-onset Alzheimer’s diagnosis. “It was more emotional because of his children and everything we had planned.
“He was really big on not wanting to be treated differently. He was really concerned about that.”
Cassandre said that, over time, Joe has come to accept that he needs help. She added that he is now “very cooperative” with both her and their 12-year-old twins.
If you’ve been affected by dementia or Alzheimer’s and would like to speak with someone in confidence, contact the Alzheimer’s Association via 800.272.3900 open 24 hours seven days a week.