News Release, 25 April 2002
New research funded by the Foundation for People with Learning Disabilities, part of the Mental Health Foundation, has found that most women with learning disabilities have little or no understanding of the menopause, and do not know about the risks of osteoporosis and the importance of trying to keep their bones strong. The Foundation is now recommending that women should be better prepared for, and supported through, this 'change of life'.
The Menopause and Women with Learning Disabilities is the first piece of research on this subject that is based on the views of women with learning disabilities. The research was carried out for the Foundation for People with Learning Disabilities by the Tizard Centre, University of Kent, and was based on evidence from thirty women in their 40s, 50s and 60s, as well as from GPs, staff and parents. It found that most pre-menopausal women were unaware that their periods would eventually cease, and although this was known by women who were already menopausal, this second group had no understanding of why this happened or that it marked the end of a woman's fertility.
"For most women this is a very significant time of life" said Hazel Morgan, head of the Foundation for People with Learning Disabilities, "and almost all the women in our survey said that they wanted to talk about the menopause with other women at this time. We believe that women with learning disabilities have a right to know what is happening to their bodies and that those who care for them should take the initiative by giving information and support."
Interestingly, the women did not seem to attach emotional feelings to the ending of their fertility; this is probably because many women with learning disabilities will not have been given the opportunity to have children. Many were also unaware of phrases such as 'change of life' and of other women's experiences of the menopause, which suggests that they do not pick up on such matters informally.
The majority of GPs in the survey had little or no experience of treating women with learning disabilities for menopause-related concerns, and although they frequently suggested that they would recommend HRT for troublesome menopausal symptoms, they were also aware of problems obtaining informed consent for this.
Staff in learning disability services believed that women with learning disabilities should be educated about the menopause, and were not at all confident that this was happening currently. They also expressed concern about a lack of good medical attention for people with learning disabilities, including a possible lack of attention paid by doctors to menopausal symptoms.
The parents who took part in the research were all mothers of women with learning disabilities, and each felt that she was the best person to educate her daughter about the menopause; however, some of them recognised that they had passed on negative attitudes to their daughters about menstruation generally.
As a result of this research the Foundation for People with Learning Disabilities is recommending that:
- GPs need to make their services more responsive to the needs of women with learning disabilities.
- Staff and carers in learning disability services should encourage women to eat a calcium-rich diet and ensure they get access to good primary health care.
- Women with learning disabilities should be proactively informed about the menopause, in a way that is accessible to them.
- This information should ideally come from women staff and carers.
The Menopause and Women with Learning Disabilities. Updates: Volume 3, Issue 14. Foundation for People with Learning Disabilities, February 2002.
Return to news releases 2002
Note to editors
For further information and interview requests contact please contact the press office on 020 7803 1105 / 1128 or email the press office
The Foundation promotes the rights, quality of life and opportunities of people with learning disabilities and their families. We do this by working with people with learning disabilities, their families and those who support them to:
- Do research and develop projects that promote social inclusion and citizenship
- Support local communities and services to include people with learning disabilities
- Make practical improvements in services for people with learning disabilities
- Spread knowledge and information.
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