For Emily Harris, the first warning sign was not a forgotten name or a missed appointment, but the steady, almost relentless hum of her mother’s washing machine.
Whenever Emily, now 31, visited her mum Andrea at home in Droitwich, Worcestershire, the machine seemed to be on — whether it was early in the day or late at night.
What made it more unsettling was what she would find inside: often a single piece of clothing, perhaps a T-shirt, a skirt or even just one sock spinning on its own.
Andrea, who was 56 at the time, had spent years raising four children while holding down a full-time job as a nurse, and Emily says her mother had always been highly organised by necessity.
‘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,’ she says. ‘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 believes that unusual behaviour was likely an early clue to the illness slowly changing her mother’s brain: frontotemporal dementia, also known as FTD.
The condition affects around 30,000 people in the UK and accounts for only about one in 30 dementia diagnoses.
FTD is an umbrella term for a group of progressive brain disorders that damage the frontal and temporal lobes, areas closely linked to personality, behaviour and language. In contrast to Alzheimer’s disease, the most common type of dementia, frontotemporal dementia often develops earlier in life, most frequently affecting people aged between 45 and 64.
Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.
It was the near-constant droning of the washing machine that first tipped Emily Harris off to the fact that something was wrong with her mother Andrea
It also rarely affects memory in its early stages, with patients instead presenting with a much wider range of vague symptoms – from acting impulsively to suddenly developing a sweet tooth.
As a result, experts say the condition is more likely to go missed or be misdiagnosed by patients and loved ones alike.
‘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.’
In Andrea’s case, a growing list of strange symptoms, including an online shopping obsession, nonsensical text messages and a slew of car bumps and scratches were put down to stress and exhaustion, and later the menopause.
It wasn’t until Emily took Andrea to a memory clinic for an assessment and brain MRI that she was diagnosed with FTD.
Emily says: ‘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.
‘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”.’
Like Alzheimer’s, FTD is caused by damage from abnormal clumps of proteins building up inside brain cells, shrinking the affected regions. Experts say it’s still unknown what triggers the condition, and there is no known cure.
But as many as one in three cases are thought to be genetic.
Patients can experience a wide range of symptoms, depending on which region of the brain is affected. For some, FTD can cause changes in personality, mood and personal conduct. Patients often display a lack of empathy, may seem socially disinhibited or suddenly develop compulsive habits.
Others may experience physical symptoms similar to Parkinson’s disease – including stiffness, muscle spasms and balance issues.
And for some, the disease can cause the gradual loss of speech and language skills. Patients can have trouble understanding word meanings or recognising familiar objects.
Die Hard star Bruce Willis, 71, was diagnosed with FTD in 2023, one year after he announced he was suffering with aphasia – or difficulty speaking. Today, the father-of-five requires around-the-clock care and is reportedly not aware of his condition, despite being unable to speak.
His wife Emma Heming Willis, 47, says that she at first thought that changes in his speech patterns were related to a slight stutter he’d had in childhood.
In Andrea’s case, a growing list of strange symptoms, including an online shopping obsession. Parcels started turning up at the house almost every day
In Andrea’s case, the constant running of the washing machine was only the tip of the iceberg.
‘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.’
After a while, Andrea wasn’t just fumbling with words. Her texts became increasingly unintelligible – with words misspelled and seemingly typed at random.
‘My aunt raised it with me one evening,’ says Emily. ‘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.
‘I just assumed she had had a drink also, and reassured her that everything was fine.’
Then, Andrea began bumping and scratching her car with alarming frequency. And parcels started turning up at the house almost every day – Andrea having bought clothes for her grandchildren.
The issue was, says Emily, they were the wrong size, and often she’d find her mum had bought two or three of the same item. Eventually, Andrea’s memory began to decline as well. ‘I’d look at her phone and she’d have maybe 50-60 emails of password reset codes every day,’ said 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.’
Eventually, the changes became impossible to ignore.
Emily brought Andrea to a private menopause clinic. Blood tests found low oestrogen and testosterone levels, and Andrea was started on hormone replacement therapy.
But when, by her three-month check-up, Andrea’s memory had continued to deteriorate, despite the treatment, Emily pushed for a memory assessment.
The test, and a scan of Andrea’s brain, showed advanced atrophy. More testing followed, and Andrea was diagnosed with dementia.
Emily says that amidst the devastation was a feeling of relief. ‘I finally had an answer. For months I had known something wasn’t right. 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.’
Patients’ younger age and the broad range of symptoms mean that FTD takes the longest time to diagnose – averaging 4.2 years.
Alzheimer’s disease, in comparison, is usually diagnosed in an average of 3.6 years.
Die Hard star Bruce Willis, 71, was diagnosed with FTD in 2023, one year after he announced he was suffering difficulty speaking
Studies suggest this may be because early behavioural or language changes caused by FTD are often mistaken for psychiatric issues or normal stress.
Midlife social and hormonal changes are also common scapegoats for changes in behaviour, says Prof Hogervorst. The average age of diagnosis for women is 58. At this age, changes in mood can mirror those that happen to many women during menopause.
‘Many women feel burned out, aren’t sleeping well, and experience mood swings,’ she says.
And it’s not just women who risk having their symptoms dismissed.
‘It’s a stereotype that men of that age have midlife crises – buying a sports car, or having an affair,’ says Prof Hogervorst. ‘In the majority of cases, this won’t be anything to do with dementia.
‘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 say getting the correct diagnosis can provide immense relief for families and caregivers.
‘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.
‘There are also ways to help patients – through cognitive stimulation groups or medications. And the earlier you get a diagnosis, the more able the patient is to plan for their future.’
There are some key ways to differentiate FTD from other, less serious issues, say experts. ‘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.’
Likewise, a key signal of FTD is that symptoms progressively worsen, says Prof Cooper. While research shows that nearly two-thirds of women experience brain fog, memory lapses or concentration lapses during menopause, these symptoms tend to resolve themselves after a few years.
‘There’s a general downwards trend in degenerative conditions – things get gradually worse, rather than come and go,’ says Prof Cooper.
‘We all scrape the car or forget a name or do eccentric things once in a while. But it’s when things are getting persistently worse that you need to worry – and when they start to effect daily life and the ability to function.’
Charities say more needs to be done to improve diagnosis of all forms of dementia – currently Britain’s biggest killer, claiming more than 76,000 lives a year.
The Daily Mail launched its Defeating Dementia campaign in partnership with Alzheimer’s Society to raise awareness of the disease, in an effort to increase early diagnosis, boost research and improve care.
If you are concerned that a family member or friend is exhibiting the signs of FTD, Alzheimer’s Society senior knowledge officer Simon Wheeler says there are ways to go about broaching the topic sensitively.
‘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.
‘Likewise, it can be helpful to mention that GPs can often treat problems with memory and thinking if they’re caused by common health conditions such as thyroid problems, infections, depression and lack of sleep. This could be more helpful than leaping straight in and talking about dementia.’
Emily says she hopes raising awareness around the symptoms and signs of FTD will help others receive the correct diagnosis.
She says: ‘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.
‘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.’
