A man whose wife is dying from early-onset dementia has revealed the ‘unbearable’ reality of the condition.
The 45-year-old said his wife began experiencing signs of dementia in 2022 at 51. The couple, who remained anonymous, worked together and the husband noticed she was having trouble completing her normal tasks.
The man said: ‘She was failing at a job she was very capable of doing. That is what made me notice.’
Eventually, his wife was fired and not long after, her personality changed and she began ‘acting very erratically.’
A series of exams and MRI scans revealed she was suffering from frontotemporal dementia (FTD), the same form of dementia Wendy Williams and Bruce Willis have.
FTD causes the frontal and temporal lobes of the brain, located behind the forehead, to shrink. These areas are responsible for behavior, problem-solving, planning, and recognizing familiar faces and objects.
In an Ask Me Anything (AMA) thread on Reddit, the man wrote while his wife, now 53, knows what’s happening to her, it will likely be just a year before she has to move to a nursing home.
While the family hasn’t been given a life expectancy, most patients live less than 10 years after diagnosis, and the woman’s father died of the same disease at 58.
In an Ask Me Anything thread on Reddit, a man described his wife’s struggle with frontotemporal dementia at just 53 years old
Wendy Williams (pictured left) and Bruce Willis (right) have both been diagnosed with FTD before age 65
Your browser does not support iframes.
The man, who lost his first wife to cancer, said: ‘Everything is a struggle. Managing home time and work. Our financial situation is awful. The stress can be almost unbearable at times.
‘It is tearing me apart. The future is so scary.’
Though other forms of dementia, like Alzheimer’s, mainly affect people over 65, FTD can strike between ages 40 and 60, with an average life expectancy of just seven years after diagnosis.
FTD accounts for about one in 20 dementia cases, adding up to roughly 50,000 to 60,000 Americans.
The Alzheimer’s Association states ‘behavioral changes are often the first noticeable symptoms’ in FTD because the disease damages the areas in the brain responsible for personality.
Alzheimer’s, however, usually causes this after the disease progresses.
Dr Susan Dickinson, the chief executive doctor of the Association of Frontotemporal Degeneration, previously told DailyMail.com that FTD can ‘damage’ relationships because of the patient’s erratic moods and behaviors.
She said: ‘With family finances for example… because of errors of judgment, patients may have spent the kids’ college fund on a sports car or two.’
Patients may also be more apathetic, meaning they lack feelings or emotions, and may fail to display concern for others or motivation.
The Reddit poster said he worries their 11-year-old son, who is adopted, doesn’t fully understand what’s happening to his mother.
‘He knows something is changing with her. I don’t believe he fully understands,’ he said.
He also noted his wife becomes ‘very angry and bitter’ with frequent mood swings and outbursts.
Though she can handle basic care like getting dressed and showering, ‘she struggles just to do simple tasks’ like laundry and often forgets to turn off appliances. She no longer drives and ‘likes to rearrange the house a lot.’
Her husband said: ‘She was once a fabulous cook. She now has trouble even operating the stove.’
However, ‘she still recognizes us. She has days you would not think anything is wrong.’
Over time, more and more areas of the brain deteriorate in FTD patients, causing symptoms to mirror those of late-stage Alzheimer’s, including difficulty eating or swallowing, having trouble walking, and being vulnerable to infections due to the blood-brain barrier weakening.
Dr Keith Vossel, a neurologist at the University of California, Los Angeles, previously told DailyMail.com FTD patients tend to need full-time care within three to five years of diagnosis.
The disease is not fatal on its own, but causes other issues that are serious or life-threatening.
These include problems swallowing — medically termed dysphagia.
Problems with eating and drinking also raise the risk of developing pneumonia or respiratory failure.
The unnamed woman’s husband believes she will be able to live at home for another year before needing to move to a nursing home.
He said: ‘She is terrified of what the future holds.’
For now, he said the family is focusing on staying afloat financially, as his job is ‘barely enough to cover her needs and the needs of the household.’
She also wants to travel while she’s still able.
Her husband said: ‘She has a lot she still wants to do. She wants me to see where she grew up. I hope to at least do that for her.’
