Emily Harris discovered her 56-year-old mother Andrea had frontotemporal dementia after noticing unusual home habits, including running the washing machine hourly for single items. Emily, 31, noticed the appliance running morning and night at her mother's house in Droitwich, Worcestershire, with the drum often containing just a single T-shirt, skirt or sock.
Andrea had raised four children while working full-time as a nurse and had always been meticulously organised. "She was the first one up in the morning, getting everyone else sorted and starting on chores around the house, and the last one in bed at night," says Emily. "But I remember thinking it was a bit weird that she would put just one item of clothing in the washing machine and turn it on every hour. I just dismissed it as just one of her obsessive habits."
Emily now knows the habit was an early sign of frontotemporal dementia, or FTD. The condition affects roughly 30,000 people in the UK, accounting for one in every 30 dementia cases. FTD encompasses progressive brain disorders damaging the front and temporal lobes, which govern personality, behaviour and language, and typically strikes people aged 45 to 64.
Unlike Alzheimer's disease, FTD rarely affects memory in its early stages. Patients instead present with vague symptoms ranging from acting impulsively to suddenly developing a sweet tooth, making the condition more likely to be missed or misdiagnosed by loved ones and doctors alike.
Midlife symptoms and diagnostic delays
"Frontotemporal dementia is a relatively rare condition," says Dr Eef Hogervorst, professor of biological psychology at Loughborough University. "Because it often begins in midlife, the symptoms can be downplayed and misattributed to a long list of stressors that emerge then, whether that's their career, ageing parents or changing hormones. Highly educated and organised people are particularly good at compensating for the condition as well. It can be very easily missed."
Prof Hogervorst noted that early symptoms in women mirror menopause, with many feeling burned out, sleeping poorly and experiencing mood swings. In men, behavioral changes are sometimes written off as a midlife crisis, such as buying a sports car or having an affair. "In the majority of cases, this won't be anything to do with dementia," says Prof Hogervorst. "But in the small number of cases where changes are due to FTD, this can be part of why they often go missed for a while."
Experts emphasize key differences between FTD and less serious conditions. "People with FTD don't usually recognise that anything is going on," says Prof Hogervorst. "Women experiencing brain fog or mood swings caused by menopause, on the other hand, are well aware."
In Andrea's case, a growing list of strange symptoms was initially put down to stress, exhaustion and menopause. "There were so many red flags looking back, but when a parent is young and otherwise healthy, it can be so easy to push things aside," Emily says. "I want to help others know what I do now, and encourage them to trust their instincts. Don't let things be dismissed as stress, menopause, exhaustion or even just an 'off day'."
For five or six years before her diagnosis, Andrea struggled with language. "For five or six years before her diagnosis, mum had been mixing up names or forgetting words," says Emily, who works in recycling. "But as my siblings and I were very close in age growing up, she'd always somewhat struggled with getting our names jumbled up."
Her text messages later became unintelligible with misspelled and random words. "My aunt raised it with me one evening," Emily says. "My mum had sent her a bizarre text that didn't make any sense. She thought she must have been drinking, and wanted to know if she was OK." Emily assumed her aunt had also had a drink and reassured her that everything was fine.
Shopping sprees and medical testing
Andrea soon began bumping and scratching her car with alarming frequency and developed an online shopping obsession. Parcels arrived at the house almost daily containing clothes for her grandchildren in wrong sizes, or two to three of the exact same item. Her phone also accumulated 50 to 60 emails of password reset codes every day.
"I'd look at her phone and she'd have maybe 50-60 emails of password reset codes every day," says Emily. "It was difficult to know whether to laugh, worry or intervene, because it was a sign that her ability to make decisions and judge situations was changing."
Emily took Andrea to a private menopause clinic where blood tests revealed low oestrogen and testosterone levels, and she was started on hormone replacement therapy. However, when her memory continued to deteriorate at her three-month check-up, Emily pushed for a formal memory assessment.
The assessment and a brain MRI scan showed advanced atrophy, leading to a diagnosis of dementia. "I finally had an answer. For months I had known something wasn't right," Emily says. "I knew my mum better than anyone, and I watched her change in ways that couldn't be explained by stress, anxiety, or menopause. After months of uncertainty, second-guessing myself, and desperately searching for answers, I finally knew what we were facing."
FTD takes an average of 4.2 years to diagnose, the longest of any dementia form, compared to 3.6 years for Alzheimer's disease. The average age of diagnosis for women is 58. Studies suggest this delay occurs because early behavioural or language changes are frequently mistaken for psychiatric issues or normal stress.
Celebrity cases and expert advice
High-profile cases include Die Hard star Bruce Willis, 71, who was diagnosed with FTD in 2023, one year after announcing he was suffering from aphasia, or difficulty speaking. Today, the father of five requires round-the-clock care and is reportedly not aware of his condition. His wife Emma Heming Willis, 47, said she initially thought changes in his speech patterns were related to a slight stutter he had in childhood.
"There is no curative treatment, and no medications for FTD," says Dr Claudia Cooper, dementia specialist and professor of psychological medicine at Queen Mary University of London. "But what we do know is that just knowing the diagnosis can make a major difference for carers. If you know what's actually happening, families can sit down and make decisions about the future, sort out important goals, and start to properly plan for things."
Dr Cooper added that patients can be helped through cognitive stimulation groups or medications. She noted that degenerative conditions follow a general downwards trend where things get persistently worse and affect daily life and functioning, whereas menopause brain fog, which affects nearly two-thirds of women, tends to resolve after a few years.
Broaching symptoms sensitively
Dementia is Britain's biggest killer, claiming more than 76,000 lives a year. The Daily Mail launched its Defeating Dementia campaign in partnership with the Alzheimer's Society to raise awareness, boost early diagnosis, increase research and improve care.
For those concerned about a loved one, Alzheimer's Society senior knowledge officer Simon Wheeler advised against bringing up dementia out of the blue. "In general, it's best not to tell someone out of the blue that they might have dementia. It's unlikely to be helpful in persuading them to get help," he says. "It's often better to talk about the difficulties they are having in their everyday life, rather than focusing specifically on symptoms or diagnoses."
Mr Wheeler suggested noting that GPs can treat memory and thinking problems caused by common health conditions such as thyroid problems, infections, depression and lack of sleep. Emily hopes sharing her story will encourage others to act early. "Before FTD, Mum was the glue that held our family together. She was one of the kindest people you could ever meet and would do anything for anyone," she says. "Before her diagnosis, I never imagined dementia could happen at 56. But I trusted my instincts. If you feel that something has changed in someone you love, keep asking questions and keep pushing for answers."
