Resources and Downloads
Perimenopause and Menopause
Jun 1, 2024
A guide for women with a learning disability and their carers or support staff
Understanding the Perimenopause and Menopause
Perimenopause and Menopause are a natural part of life for women but can be confusing or difficult to manage—especially if you have a learning disability or support someone who does. This guide helps explain what they are, what to expect, and how to get the right support.
Key Facts:
- Women with Down’s syndrome often reach menopause 5–6 years earlier than average.
- Emotional symptoms may be misinterpreted as behavioural issues (known as diagnostic overshadowing), leading to missed or delayed diagnosis.
- Communication challenges can make it harder for health professionals to recognise menopausal symptoms in women with learning disabilities.
- Epilepsy affects around 1 in 3 people with a mild-to-moderate learning disability. Hormonal changes during perimenopause can alter seizure patterns—sometimes increasing or decreasing frequency.
- Frequent seizures may lead to an earlier onset of menopause.
- Women with autism may experience increased anxiety and sleep difficulties during menopause due to hormonal changes.
- Women with cerebral palsy may also go through menopause earlier and with more intense symptoms
What is Perimenopause?
Perimenopause is the time leading up to menopause when hormone levels begin to change. It can start several years before menopause—sometimes as early as in your 30s or early 40s.
During perimenopause, periods may become irregular, and symptoms like hot flushes or mood swings may begin. People often don’t realise these changes are part of perimenopause.
Key signs of perimenopause:
- Irregular or heavier periods
- Trouble sleeping
- Mood changes (feeling sad or anxious)
- Hot flushes and night sweats
- Memory or concentration issues
- Body aches
- Feeling more tired than usual
Support workers and carers should be aware that women with a learning disability may struggle to describe these changes. Keeping track of patterns or behaviours (like changes in sleep or mood) is important.
What Is Menopause?
Menopause is when a woman stops having periods and can no longer get pregnant. It usually happens between the ages of 45 and 55. The time leading up to this change is called perimenopause.
During this time, hormones in the body change. These changes can affect how a person feels in their body and mind.
Common Symptoms
Every woman is different, but common symptoms include:
- Hot flushes (feeling very warm suddenly)
- Night sweats
- Trouble sleeping
- Feeling tired or low
- Mood swings or feeling upset easily
- Memory problems or difficulty concentrating
- Changes in periods
- Dry skin or dryness in private areas
Women with a learning disability might struggle to explain or understand these symptoms, which makes support very important.
You’re not alone. With the right support, menopause can be a manageable and empowering stage of life.
Post-menopause
Post-menopause is the time after menopause. This means you haven’t had a period for over 1 year. You will no longer have periods. Some women find their menopause symptoms (like hot flushes or night sweats) stop. Other women may still have some symptoms for longer. Every woman is different.
It’s important to look after your health, as risks of heart disease, weak bones (osteoporosis), and urine infections increase. Eating well, staying active, and going for regular health checks and screenings can help you stay well.
Screening and checks
Keep going for your regular cancer screenings:
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Cervical screening (smear test)
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Breast screening (mammogram)
These checks help find problems early, when they are easier to treat
What Can Help?
There are lots of things that can help during and after menopause:
- Healthy Lifestyle
- Eat well and drink water
- Exercise regularly
- Avoid too much caffeine or alcohol
- Talk About It
Women with a learning disability might need help understanding what is happening. Use Easy Read guides, pictures, or support from someone they trust. - Get Medical Help
Talk to your GP or nurse. There are treatments that can help, like Hormone Replacement Therapy (HRT). You can also ask for longer appointments or bring someone with you. - Keep a Symptom Diary
This helps the person and their doctor understand how menopause is affecting them.
Tips for Family Carers and Support Staff
- Start the conversation early – use simple language and check for understanding.
- Learn the signs – changes in behaviour or mood might be due to menopause.
- Support with appointments – help prepare questions and go along if needed.
- Respect privacy and dignity
- Use easy read resources like those from SeeAbility, Balance, or NHS Easy Read (See our list of Resources and Downloads below)
Why It Matters
Many women with a learning disability don’t get the menopause support they need. This can affect their mental health, behaviour, and quality of life. With the right help, menopause can be managed well.
- Research
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- Menopause Education Programme: Project Report – Ulster University, Informing Choices 2024
- Easy Reads
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- Menopause (Easy Read) What happens when you get menopause and perimenopause – SeeAbility
- All about the perimenopause and the menopause – Balance by Newson Health
- Menopause (Easy Read information) – NHS, Shrewsbury and Telford Hospital
- What is perimenopause and menopause – The Menopause Charity
- Symptoms – The Menopause Charity
- What you can do to feel better – The Menopause Charity
- Talking to your doctor – The Menopause Charity
- Helpful Information
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- Learning disabilities and the perimenopause and menopause: what support workers and family carers needs to know – Balance by Newson Health
- Menopause and people with learning disabilities – Choice Support