Jules Knight, Consultant Admiral Nurse, Young Onset Dementia at Dementia UK
“No one knew what was happening in my body, not even my GP, but my experience with the menopause will be familiar to many.”
For ten years, I experienced debilitating symptoms including brain fog, heart palpitations, and depression. It made day-to-day activities challenging. I couldn’t explain why I was having these symptoms during what was otherwise the happiest time of my life – moving in with my partner and beginning our fruitful life together.
Little did I know, this was the menopause.
Throughout my career, I’ve met many women living with dementia and the menopause, and I remain struck by the lack of knowledge regarding the intersection between them, even amongst professionals.
I’ve been a Consultant Admiral Nurse for Young Onset Dementia for over three years. Dementia UK’s specialist Admiral Nurses help families living with dementia to manage complex needs, providing life-changing support and guidance for families. In my role, I work to ensure families impacted by young onset dementia have access to the specialist support they so urgently need.
A person can be diagnosed with dementia at any age, but it is often mistaken as a condition that only affects people in later life. According to figures from Dementia UK, there is an estimated 70,800 people in the UK living with young onset dementia, where symptoms begin before the age of 651.
Similarly, the average age for starting the menopause is 51, but it can happen earlier or later. Misconceptions, stigma, and lack of information around menopause and dementia have led to countless misdiagnoses and poorer health outcomes for women across the UK.
Living with the menopause
My experience going through the menopause, rings true to many other women’s – no one knew what was happening in my body, not even my GP. After several trips to the doctor, my health concerns were dismissed as a ‘natural part of getting older’ – I was in my 40s at the time.
Fast forward several years, my brain fog was getting worse, and I felt that I couldn’t keep up with life’s demands. I had to develop strategies to overcome the forgetfulness, whether that be writing names down, or keeping a very structured diary. I’ve always been very meticulous and timely, but I remember one day, I missed an appointment at work, I felt ashamed and embarrassed – this wasn’t the person I knew.
It wasn’t until stumbling upon a Facebook group one day with women sharing their experiences of the menopause, that I realised I wasn’t alone – this was the menopause. In 2021, I finally received my prescription for HRT and I’m beginning to feel like my old self. But for many women, this is not the case.
The intersection between symptoms of dementia and menopause
Around 90% of women experience menopausal symptoms2. Some only have mild symptoms, but a quarter of women with symptoms find they are so severe that they affect their everyday lives.
A poll of 3,008 UK adults in July 2023, commissioned by Dementia UK found that only a quarter (23%) of UK adults are aware that dementia and the menopause share similar symptoms and only 26% of women are aware3of this.
For some women experiencing menopause or perimenopause – the time leading up to menopause where hormone levels begin to fluctuate and then drop – it can be challenging to differentiate whether symptoms including brain fog and concentration issues are a result of hormonal changes or a sign of dementia. This often leads to delays in diagnosing dementia as these common symptoms are dismissed as menopausal.
Women living with young onset dementia can also struggle to distinguish whether their symptoms are being caused by menopause, which can lead to delays in accessing the right support and medication to manage symptoms.
This led me to work alongside the Menopause Charity to help produce a leaflet from Dementia UK, on perimenopause/menopause and young onset dementia. The leaflet, which is available on the Dementia UK website, provides information on symptoms associated with perimenopause and menopause, and how living with young onset dementia, perimenopause and/or menopause can impact day-to-day life. It also signposts to sources of support and information resources.
Looking to the future
Dementia is the leading cause of death for women4in the UK. It is vital that anyone affected by menopause and/ or dementia get the support and guidance they need, when they need it.
There is an urgent necessity to contribute further research into the link between the menopause and dementia. In order to do this, we have to also address the societal stigma around the menopause and dementia that leads to poorer health outcomes for women. It is this stigma that leaves many women reluctant to seek help with fear of judgement or being dismissed.
We must also continue to build education and awareness of menopause, dementia and the symptoms associated with them, among health and social care professionals. If we are to meet the individual needs of families with dementia, delivering personalised care is also vital. Admiral Nurses are ideally placed to deliver this care, but there are simply not enough of us.
With rising cases of young onset dementia and almost 13 million women experiencing menopause/perimenopause, now more than ever, we need to bridge the gap in care that leaves women like me worse off5.
You can access the leaflet and more information about young onset dementia and menopause here: dementiauk.org/young-onset-dementia-menopause
If you need advice or support around living with dementia and the menopause, you can visit https://www.dementiauk.org/information-and-support/ for information resources and to find out how to access our national Helpline and Clinics services
For further information and advice around menopause/perimenopause, visit: [themenopausecharity.org]
- https://www.dementiauk.org/news/new-figures-show-70800-uk-adults-are-affected-by-young-onset-dementia/
- https://www.dementiauk.org/wp-content/uploads/2023/07/dementia-uk-young-onset-dementia-perimenopause-menopause.pdf
- Research commissioned by Dementia UK via Censuswide in July 2023
- https://www.dementiastatistics.org/about-dementia/deaths/
- https://www.ucl.ac.uk/news/2023/apr/nine-ten-women-were-never-educated-about-menopause#:~:text=The%20number%20of%20women%20aged,of%20the%20entire%20female%20population.
