Are younger women being diagnosed with dementia?

‘It’s something I thought I’d get at 80.’ These were the words of broadcaster Fiona Phillips, as she revealed her Alzheimer’s diagnosis in July of this year. ‘But I was still only 61 years old.’

The presenter spoke of her anger at the diagnosis, which came following months of brain fog and anxiety. No wonder: like many women in their early 60s, there’s work, family and the enjoyment of life to attend to. ‘I am just getting on with it, I’m not taking notice of it,’ she told The Mirror. ‘I’m just doing what I normally do. I don’t want to not work, be sitting around playing with my fingers, or watching telly.’

To think that Alzheimer’s – which, along with other forms of dementia, we think of as a later-life disease – could hit women thriving at midlife, is understandably alarming. But when you consider the latest demographic data about people with dementia, perhaps it shouldn’t be.

The condition – among the most devastating of our times – has a predominantly female face; two out of three sufferers in the UK are female, and last year it was the leading cause of death among women. In fact, those over 60 are twice as likely to develop Alzheimer’s as breast cancer, a condition for whom awareness and support is arguably far greater.

This stark gender divide is also present in what the charity Dementia UK is calling the ‘hidden population’ of those living with ‘young onset’ dementia, which new figures reveal number 70,800 – or 7.5% of all those living with the condition.

While heartbreaking for women over 65, who make up the most prevalent age group, a diagnosis can be particularly devastating for those who find their hard-won careers, busy family life and fulfilling social calendar fading from memory all too soon. And yet, among the unnerving headlines about rising rates – set to soar from 944,000 to over one million by 2030 – that women suffer most remains largely unacknowledged. So why do we still have so little understanding of how to help women in dementia’s grip?

MIND THE GAP

Dementia – defined as struggling with cognition, thinking and memory, to the extent that it impacts normal occupational or social function – is an umbrella term. The most common type is Alzheimer’s, accounting for 70% of dementia cases worldwide. The next two most prevalent types of dementia – Parkinson’s disease dementia and dementia with Lewy bodies, which make up 20% – are slightly more common in men; this is also the case for vascular dementia, while frontotemporal dementia has more of an even gender split – both of which comprise the remaining 10%.

‘Each type is caused by a different problem with brain cells, leading to different symptoms,’ explains consultant neurologist Dr James Gratwicke. ‘Alzheimer’s, for instance, is caused by a protein called amyloid, which affects memory, while Parkinson’s is triggered by another protein called alpha-synuclein and impacts decision-making ability.’

Dr Gratwicke works for the NHS at St Thomas’ Hospital as well as practicing privately at London Bridge Hospital, part of HCA Healthcare UK, where sufferers are twice as likely to be female. He acknowledges that the condition is something those in their 30s, 40s and 50s are increasingly alert to.

‘We’re not seeing more of the condition present in younger age groups, but as a society, we’re more informed about health than several decades ago,’ he notes. ‘People are more likely to seek help as soon as they perceive a problem, which means it’s being picked up earlier.’

What’s more, advances in research suggest it’s increasingly possible to get a head start on the condition. A recent study showed that it was possible to spot early signs of dementia nine years before diagnosis, while further research revealed a hearing test in your 30s could help identify brain decline sooner.

BRAIN DISEMPOWER

But the perception that dementia only affects those in later life has meant a painfully slow diagnosis for those under 65, with NHS data revealing it can take twice as long – particularly for menopausal-age women. ‘Brain fog, including issues with concentration and memory, is also a common problem for those at this life stage,’ says Jules Knight, a consultant admiral nurse (the term for a nurse who specialises in dementia) for young onset dementia at Dementia UK.

Menopause was one reason Jude Thorpe, diagnosed with Alzheimer’s age 57, was so reluctant to go to the doctor after she began forgetting important tasks while working as a stage manager at an Oxford theatre. ‘I remember freaking out, not knowing what I should be doing,’ the now 60-year-old recalls. ‘I felt so embarrassed.’

When her partner Becky urged her to seek help, it took five years and three doctors until her cognitive symptoms were finally diagnosed. ‘At first, I was in shock, and it took some time to change the way I do things because I’ve always been very active and independent,’ she explains. ‘I grieved because I didn’t really know who I was anymore. My life was changing and the people around me – including my two daughters, who were teenagers then – all thought I was going to be carted off to a care home. It was surreal – and anxiety-inducing.’

Menopause was also initially blamed in the case of 26-year-old Chloe Harvey’s mother, whose symptoms – including mood changes and memory lapses – left her struggling to communicate the problem. ‘It took a year of back and forth with doctors,’ says Chloe. ‘Iron deficiencies, depression and thyroid issues were all brought up, often attributed to “womanly troubles”, slowing the path to her diagnosis.’ Eventually, post-memory test and brain scan, Chloe’s dad called when she was studying at university in 2018 to confirm that her mother, just 53, had early-onset Alzheimer’s disease.

‘Mum was my world growing up, and I felt such helplessness because I knew this wasn’t something you could recover from.’ Chloe moved back home for three years to care for her mum, after realising state resources were non-existent. ‘It was isolating. I missed the “selfish years” of my 20s,’ she admits. ‘But I knew I wasn’t going to have that time with her in the future.’

MIXED MESSAGING

Dementia experts contacted by WH believe that understanding the gender differences in the condition could guide possible treatments. But there’s limited data on women’s bodies – with a 2018 analysis of clinical trials showing 72% included no sex-based analysis of their trial data. ‘A common suggestion for higher rates in women is that they live longer,’ says Dr Amaal Starling, a neurologist at the Mayo Clinic. Indeed, the average life expectancy stands at 82.86 years compared to 79.04 in men. ‘But the research is ongoing.’

One theory is that the amyloids in Alzheimer’s may be part of the brain’s immune system, and with women known to have a stronger immune system than men, it’s thought they have a greater build-up of amyloids and therefore an increased risk. Similarly, a study found that tangles of another protein – Tau, found within neurons and is linked to Alzheimer’s – might spread differently in women’s brains.

Complicating matters further is that women have been subjected to much mixed messaging in recent years on the link between hormone replacement therapy (HRT), to help menopause symptoms, and dementia. One 2021 study indicated it could lead to a 73% reduction in dementia risk, while other research published in June suggested a link between HRT and dementia later in life.

‘Such findings usually stem from large cohort studies where people are followed up for long periods of time – patterns are identified, but there might be lots of other secondary effects,’ notes Dr Gratwicke. ‘For example, the women who took HRT may be a bit more health conscious, and therefore might seek out medical assistance [resulting in a dementia diagnosis].’ So, this doesn’t amount to robust, causal evidence that HRT itself increases dementia risk. And, while the bottom line remains unclear, experts consulted by WH urge women continue to manage their menopause in the way that works best for them.

LABOUR STRAINS

There’s also evidence that the disproportionate burden of women’s responsibilities – work meetings, school pick ups, household orderliness, elder relative care – could be a factor. One study found women were twice as likely as men to suffer severe stress and anxiety due to taking on a greater share of domestic duties and emotional labour. ‘

While keeping your mind active has been shown to be protective against dementia, poorly-managed stress is correlated with increased inflammation in the body,’ says Dr Starling. ‘This can be potentially damaging to the nervous system; increasing metabolic stressors on brain cells.’ If this leads to sleep loss – with women 58% more likely to experience insomnia – there’s evidence it can double dementia risk.

Last year, a study also revealed that dementia rates are 22% higher among Black people in the UK compared to white people, while Black and South Asian dementia patients die younger. Dr Naaheed Mukadam, dementia researcher at UCL’s Department of Psychiatry, who led the research, concluded that differences may be down to the increased prevalence of dementia risk factors – hypertension, diabetes, obesity – in Black and South Asian groups. ‘But it’s possible that racism also plays a role,’ she tells WH. ‘Either in terms of the medical treatment that people receive or as a direct result of the chronic stress from racism itself.’

FORWARD FOCUS

For the most part, experts agree that the best ways to future-proof your brain remain the same as they always have. That includes stopping smoking, keeping drinking to a minimum and consuming a nutritious whole food diet low in unhealthy fats. ‘Aerobic exercise and managing stress have also been shown to help,’ adds Dr Starling.

In other good news, research is likely to shed greater light on the condition in coming decades. Dr Mukadam notes that dementia trials are now better at including women, and last summer the Government – who included the condition in its 10-year Women’s Health Strategy – announced that, as part of its ‘dementia moonshot’ pledge, they would double research funding to £160m a year by 2024, a sum which would include looking into why women are more at risk.

If you’re worried about symptoms, you should – of course – go to your doctor. There’s promise in the future of dementia drugs – especially when it’s caught early. December saw a drug called lecanemab slow memory and thinking skills decline in early Alzheimer’s disease by 27%. In July, another drug called donanemab slowed progression by over 20%, and by 35% in earlier stages of the disease.

It’s thought that 2025 is the earliest the former medication – which has been licensed in the US, where it will cost of $26,000 (£20,482) per year – might be available on the NHS, where it would be administered via an infusion during monthly hospital visits. Dr Gratwicke believes at least one will become available privately next year.

‘These drugs have created a paradigm shift in dementia care,’ he adds. Celebrities speaking about their experiences is typically helpful, notes Dr Starling, who adds: ‘It increases public awareness as well as decreases stigma, and also raises the chance of studies getting funded and medications being approved.’

As for the women left to grapple with dementia right now? ‘It’s been so frightening for my mum, but I’m so proud of how strong she’s been,’ says Chloe, an assistant editor in the publishing department at the Alzheimer’s Society, who’s found her own support network through social media with other young women in the same position.

As for Jude, with time, she’s learned to adjust. She’s discovered that familiarity and routine foster calm; cold water swimming with friends, annual family holidays to the same spot of Spanish coastline and short stories which make reading manageable. She and her family are finding a way to live well – with her diagnosis.

The Alzheimer’s Society vows to end the devastation caused by dementia, providing help and hope for everyone affected. For more information or to make a donation, visit alzheimers.org.uk.