August TCAID: In Focus - Menopause Café; increasing awareness, a conversation about women’s health at menopause.

The menopause is part of each and every woman’s life and yet unique to each woman, there are common and varying symptoms and changes experienced in different ways over different time periods, again all unique experiences. However, one underpinning fact is that we need to talk about it, we need to educate ourselves our families our friends and colleagues. Unfortunately, our knowledge and understanding of the menopause among women with intellectual disability is limited. All too often they were marginalised and omitted from research in this area. However, the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing collect data on women and women’s health including menopause and this summer were invited as key speakers in a mainstream symposium ‘A conversation about women’s health at menopause’.

The event was organised by Dr. Katie O’Connor and Fiona Brown of the Faculty of Health Sciences and chaired by Dr Eilish Burke of the School of Nursing and Midwifery and the Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin (TCD). The event included champions of women’s health Dr Mary Ryan, Physician, Endocrinologist Lecturer and Author, Eimear Galvin, Strategic Director and Manager of the Health Innovation Hub Ireland (HIHI), Prof. Fiona Wilson in School of Physiotherapy, Oonagh O’Hagan, Pharmacist, Owner and Managing Director of Meagher’s Pharmacy Group, and our TCAID colleague Stephanie Corrigan who is currently undertaking a Masters by Research on Menopause, Mental Health and Women with Intellectual Disability. Each of these champions embraced and emphasised the aims of changing the approach to menopause care, aspiring to increase public awareness and support, and examining creatively a way to make access better to information on women’s health at different stages of life. Most importantly each of these champions were true advocates who wanted to lift the voices of women so that they are active participants in their own health decisions.

Focusing on women with intellectual disability

Stephanie Corrigan, Masters by Research Student at IDS-TILDA provided an interesting background and foundation to her research identifying how this marginalised group are frequently overlooked. She identified how recent research indicates that the knowledge of women with an intellectual disability surrounding their sexual and reproductive health is very poor noting that experiencing the menopause as a woman from the general population is extremely stressful and confusing however having an intellectual disability adds another layer of complexity. To add to this complexity there is a historical legacy of little or no attention begin given to overall sexual health with much of their lives being governed by antiquated laws such as the 1871 Lunacy Act, which until recently, 26th April 2023, were still in vogue. The research that does exist is sparse primarily focusing on age at menopause and cognitive aspects of the menopause however there is an established link between age at menopause and age at onset of dementia, and as women with intellectual disabilities experience both at an earlier age than the general population, particularly those with Down syndrome, there is an urgent need for investigation. There is also evidence to suggest that oestrogen is protective against cognitive decline, yet there have been no clinical trials for hormone replacement therapy among women with intellectual disability. Overall, there is a severe lack of robust, generalisable research into the menopausal symptoms faced by women with an intellectual disability therefore there is a need for focused research into predictors and symptoms, as it is not known do they vary when compared with women from the general population an aspect that interests Stephanie who is currently investigating the impact of menopause on the mental health of women with an intellectual disability. Of course, this is vital as this population are more predisposed to negative mental health symptoms.

Ireland has a Women’s action plan which emanated from the women’s health taskforce work in 2019 with the goals to create an environment to support women’s health across their life span, particularly changing the approach to menopause care to increase the public supports available to women before, during and after menopause and looking creatively at how women and girls can access better information on women’s health at different ages and stages of life. When it comes to living these goals, ensuring that we overcome the taboos and break the silence around menopause particularly for women with intellectual disability there is a way to go. The event began the conversation on women with intellectual disabilities health and listening to the inspirational speakers at the event, it was truly a terrific start. However, there is much more to be done to keep pushing forward and driving change for women with intellectual disability in this under researched area.