This World Menopause Day, our Best Practice Health Team has put together some resources on menopause and how it can affect people with a learning disability - those who draw on our support.
If you’re one of the 13 million menopausal people in the UK, you’ll appreciate how important it is that as a society we understand more about menopause: it shouldn’t be a taboo word.
An earlier 'change'
This is particularly important given that evidence suggests people with learning disabilities often have an earlier menopause.
The average age for menopause in the general population is 51, but people with Down’s syndrome could reach the menopause by age 44, while people with Fragile X may experience FXPOI (Fragile X Primary Ovarian Insufficiency), a lack of oestrogen that leads to early menopause at around 40 years old, and people with Williams Syndrome may experience both early puberty and early menopause.
What is the menopause?
Menopause is a natural life transition, with no standard age of onset and which takes on average seven years to complete. It happens in the following three stages:
- Perimenopause is the time from the start of menopausal symptoms until after someone has experienced their last period. Periods will usually start to become less frequent over a few months or years before they stop altogether. They might be more irregular and become heavier or lighter, and for some, they can stop suddenly.
- Menopause is when periods stop. Menopause means ‘the last menstrual period’.
- Post menopause is the time after the menopause when someone hasn't experienced a period for over a year. Post menopause, the person will no longer have periods but some people continue to experience symptoms of the menopause.
Some transgender men, non-binary people, intersex people, or people with variations in sex characteristics may also experience menopause.
Menopause can also occur due to certain surgeries or cancer treatments. This can cause symptoms to be more sudden and in some cases more severe.
What are the symptoms of menopause?
Menopause is very individual, with the amount and severity of symptoms varying from person to person. Common and less common symptoms include:
- Hot flushes (short, sudden feelings of heat, usually in the face, neck and chest which can make skin red and sweaty)
- Night sweats
- Difficulty sleeping (leading to being tired and irritable during the day)
- Hair loss or thinning
- Headaches or migraines
- Reduced sex drive (libido)
- Tinnitus
- Increase in facial hair
- Joint stiffness, aches and pains
- Vaginal dryness and pain
- Discomfort during sex
- Palpitations
- Changes in skin conditions (increased dryness, oiliness or the onset of adult acne)
- Recurrent urinary tract infections (UTIs)
- Problems with memory, concentration and ‘brain fog’
- Changes in mood - such as low mood or irritability
- Feelings of loss of self and decreased self-esteem
- Worries about ageing
- Anxiety
- Loss of self-confidence
You can find out more about menopause symptoms from the NHS.
Finding positives from the menopause
The menopause is often considered to be a difficult experience, but there are many positives associated with it too. These include liberty from periods (and other monthly symptoms), contraception and the possibility of pregnancy. As a result, many people feel a greater sense of confidence and freedom.
Some people going through the menopause may need support in order to have positive feelings about this change in their life. Others can help by having an awareness of the thoughts, feelings and physical health changes that they might be going through, and encouraging understanding that these are a normal part of menopause.
Menopause and people with a learning disability
Thanks to awareness campaigns like World Menopause Day, menopause is being talked about more than it used to be.
However, it may be undetected in a person with a learning disability, as Jane Nickels wrote about in her blog Perimenopause, Menopause, Dementia and having a Learning Disability.
If menopause is detected, it may be shrouded in misinformation or misunderstanding for a person with a learning disability. Research from BILD’s GOLD Group included findings that:
- Most people with learning disabilities who were not yet menopausal did not know that their periods would eventually cease.
- Most people who were already menopausal knew that periods eventually stopped, but did not know why this happened or what it meant.
- The vast majority did not know anything about others’ experiences of menopause. This is where it’s important to remember peers, friends, family who can add so much perspective and experience to discussions.
How we can support someone with a learning disability going through menopause
If you think someone you support is going through the menopause, it’s important to track their symptoms through our health recording. Please contact the Health Team if you need support with this.
Help the person understand what is happening to them. These easy read documents from NHS Inform and Shrewsbury and Telford Hospital NHS Trust may help.
For common symptoms like hot flushes and night sweats, support the person to find clothing that is breathable and comfortable. Think about their bedding and bedroom environment: ensure it isn’t too hot at night and follow other good practice sleep advice. The Sleep Charity have produced guidelines about good sleep hygiene
Consider any mental health effects - mood changes, anxiety, difficulties with self-esteem and worrying about getting older - and support the person by providing a safe space for them to talk, use therapies like art for expression, making sure the person knows you are there to support, listen and empathise.
Ensure the person can carry on with their daily routines, liaising with any work or lifelong learning provision to ensure everyone is aware of how best to support them.
Finally, consider any dietary supplements that may be needed, for example to help to keep bones healthy. Speak to their GP for advice.
Work as a whole team with the person and their circles of support to ensure clear communication about their changing needs.
If a person with a learning disability is struggling with the menopause, how can I help them?
If the person is struggling with their menopausal symptoms, speak to their GP.
Be mindful of diagnostic overshadowing, and how some menopausal symptoms may be confused with changes in behaviour. It’s important to be aware that menopause could be affecting the person rather than assuming their behaviour is because of their learning disability.
You may need to request a referral to a specialist if the person has:
- Ongoing symptoms that aren’t responding to treatment.
- Persistent, troublesome adverse effects from any treatments they’re taking.
- You/the person are uncertainty about the most suitable treatment option.
There is uncertainty about the diagnosis or management of POI (Premature Ovarian Insufficiency).
The pathway of care may be difficult to navigate for a person with a learning disability and you may need to request reasonable adjustments.
Remember: someone with a learning disability has an equal right to access menopause services and support. They may have specific views on treatments (like Hormone Replacement Therapy - HRT), and the Mental Capacity Act 2005 Principles make it clear someone must be given every opportunity to make their own decision. If they are unable to make their own decision, follow the correct procedures.
Further support is available from the MacIntyre Health Team. Please email: [javascript protected email address].
Last word
Remember: everyone is different, everyone’s experience of menopause is different, there’s no one size fits all.
