Given that around 70,800 people in the UK are living with young-onset dementia, we spoke to Consultant Admiral Nurse Jules Knight about the challenges women face when experiencing perimenopause and/or menopause and dementia.
Outcomes from a recent study which examined health data from 153,291 women in the UK found that those who experience menopause early (before the age of 40) may be at greater risk of developing dementia compared to those women who enter the menopause around the age of 50. Changes in the brain as a result of dementia can hinder a person’s memory and ability to use language, and, given that women typically experience the menopause between the ages of 45 and 55, it can be difficult to decipher whether symptoms are the result of hormonal changes or a sign of young-onset dementia.
To help raise awareness of the symptoms associated with menopause and/or dementia and improve health outcomes for women, specialist dementia nurse charity Dementia UK, partnered with The Menopause Charity and released a brand-new resource that provides tailored information on perimenopausal and menopausal symptoms, and how living with young-onset dementia and perimenopause and/or menopause can impact a person’s day-to-day life. To find out more about the initiative and the challenges affecting women, Lorna Rothery spoke to Consultant Admiral Nurse at Dementia UK, Jules Knight.
New figures released by Dementia UK from research carried out by Janet Carter et al showed a ‘hidden population’ of 70,800 people in the UK who are currently living with young-onset dementia. This is an increase of 69% since 2014 when it was noted that there were 42,000 people living with it. What would you attribute this rise to?
The rise can be attributed to the way this research was conducted; using an improved counting technique that provided a more accurate picture of the number of people living with young-onset dementia in the UK (where symptom onset occurs under the age of 65).
How would you like to see the UK’s healthcare system and policymakers respond to the findings?
We know that young-onset dementia is poorly recognised and misdiagnosed. This is because the public – and GPs – tend to think dementia is only associated with memory loss, or that it only affects older people. These misconceptions lead to delays in accessing crucial support which has a detrimental impact on families and their care.
Dementia is a huge and growing health crisis, and with rising numbers, the healthcare system urgently needs to break down these barriers and deliver an adequate referral pathway. We would like to see an improvement and increase in age-appropriate post-diagnostic support available to families living with young-onset dementia. It is imperative that we expand young-onset services so that families with dementia are given critical support from the point of seeking a diagnosis to helping them plan for the future and beyond.
They can also benefit from a multidisciplinary team approach to their diagnosis and care. Building education and awareness of young-onset dementia among GPs as well as the potential implications of receiving a diagnosis is paramount.
A person with young-onset dementia is likely to be in employment, with significant financial commitments such as holding down a mortgage and supporting children. Due to the progressive nature of dementia, the ability of families to fulfil these commitments can become strained.
Meaningful social and recreational activities, respite and long-term care facilities can also help families manage to live with the condition. Right now, Admiral Nurses – who are continuously supported and developed by dementia specialist nurse charity, Dementia UK, are ideally placed to offer this specialist support for families with young-onset dementia.
For someone living with young-onset dementia and perimenopause and/or menopause, how can these conditions impact day-to-day life? Are there any lifestyle changes people can make to better manage their symptoms?
Around 90% of women experience menopausal symptoms. Some only have mild symptoms, but a quarter of women report experiencing symptoms so severe that it affects their everyday lives.
However, there are several ways to manage or improve symptoms of perimenopause/menopause, which can also positively impact brain health. These include having good quality sleep, as lack of sleep can worsen memory and concentration issues and getting regular exercise which can help boost attention and mitigate stress and anxiety. One can also reduce alcohol and stop smoking as they can make symptoms worse – including disruption of sleep.
What are the key barriers to care that women living with menopause and/or dementia can face?
For some women experiencing menopause, it can be challenging to differentiate whether symptoms are a result of hormonal changes or a sign of dementia. Brain fog, issues with concentration, mood changes, and anxiety and depression are common symptoms of menopause. Moreover, it takes an average of four to five years to get a diagnosis of young-onset dementia, due to a lack of specialist knowledge in this area. This further contributes to negative health outcomes for women.
Similarly, women living with young-onset dementia may also struggle to discern whether their symptoms are being caused by menopause. The cognitive, psychological, and emotional changes associated with the menopause can have a greater impact on women with dementia. Therefore, it is so important that women are given the information they need to decipher how menopause/perimenopause may be affecting them. We hope to bridge this knowledge gap through the launch of our menopause and dementia leaflet.
It is important to see a GP if a woman has any concerns about the risk of dementia and/or symptoms of menopause/perimenopause.
How is Dementia UK helping people to identify and manage symptoms of young-onset dementia and perimenopause and/or menopause?
In October, Dementia UK partnered with The Menopause Charity to release a brand-new resource that provides tailored information on the symptoms of perimenopause/menopause, and how living with young-onset dementia and perimenopause and/or menopause can impact day-to-day life. We hope that with this information, we can raise awareness of symptoms associated with menopause and/or dementia to improve health outcomes for women.
Earlier this year, Dementia UK also hosted a sexual health webinar for Admiral Nurses, to improve knowledge and understanding of how women’s sexual health can be impacted by a diagnosis of dementia. The event included expert speakers from The Menopause Charity and two women living with young-onset dementia who shared their experience of menopause.
You can access the menopause and dementia leaflet and find out more information about young-onset dementia and menopause here.
For further information and advice around menopause/perimenopause, visit www.themenopausecharity.org.
For families affected by dementia, Admiral Nurses can be a lifeline. Without them, many families would be left to struggle alone and unable to manage complex needs. To find out more about becoming an Admiral Nurse, speak to the team at Dementia UK by emailing firstname.lastname@example.org.
Consultant Admiral Nurse
Young Onset Dementia
This article is from issue 24 of Health Europa Quarterly. Click here to get your free subscription today.