People with intellectual disabilities can face significant health challenges as they grow older, but for women, some of those challenges can be particularly complex and often overlooked.
On Disability Matters, John Comiskey speaks with Dr. Eilish Burke and Stephanie Corrigan about women’s health, ageing, menopause, sexual and reproductive health, physical activity and the barriers that can prevent women with intellectual disabilities from receiving the care and support they need.
Both guests are involved in research through IDS-TILDA, the intellectual disability supplement to the Irish Longitudinal Study on Ageing. The study has been following people with intellectual disabilities aged over 40 since 2007, examining their health, wellbeing, social participation and relationships.
Eilish explains that around 760 people are currently involved in the study, with women making up around half, or slightly more than half, of the participants.
“We interview people over the age of 40 about their health and wellbeing.”
The research offers an important picture of how people with intellectual disabilities experience ageing — and, in particular, the health issues faced by women.
A significant difference in women’s health
One of the issues discussed during the interview is the higher level of multiple health conditions among women with intellectual disabilities.
Eilish explains that researchers looked at people living with two or more health conditions and then at those living with three or more.
While the figures for two or more conditions were relatively similar between men and women, a significant difference appeared when researchers looked at three or more conditions.
“We had about 63 percent of three or more health conditions in women compared to about 40 percent in men.”
The research also identified higher levels of cardiovascular risk factors, including high blood pressure and cholesterol.
But the reasons behind these differences are complex.
Eilish points to a combination of factors, including physical health, health behaviours, difficulties communicating symptoms and challenges navigating healthcare systems.
“There are a lot of contributing factors that are both kind of systematic and, you know, physical as well.”
Menopause: an area that needs much more attention
Stephanie’s research focuses particularly on menopause and women with intellectual disabilities.
One of the most striking issues she identified was the lack of information available to women about menopause itself.
“Women were not educated on menopause. So how can they get help for menopausal symptoms if they don’t know what menopause is?”
For many women, perimenopause begins around their 40s and 50s, bringing physical and emotional changes before menopause.
For women with intellectual disabilities, recognising and communicating these changes can be particularly difficult.
Stephanie explains that menopausal symptoms can sometimes be connected to other health or behavioural issues.
“If somebody experiences a hot flush, they may feel a bit stressed and lash out.”
Without understanding the underlying cause, there is a risk that changes in behaviour could be treated as a behavioural or mental-health problem rather than recognising that the person may be experiencing menopausal symptoms.
As Stephanie explains:
“They could be prescribed a psychotropic medication instead of proper menopausal treatments if they’re not identifying the root cause of this.”
This makes education and appropriate healthcare particularly important.
When pain is misunderstood
The conversation also turns to sexual and reproductive health.
For many years, these subjects were largely ignored when it came to people with intellectual disabilities.
Eilish describes how historical attitudes contributed to this lack of understanding.
“Sexual and reproductive health wasn’t spoken about at all.”
The consequences can still be felt today.
According to the research discussed during the interview, only around 40% of participants were aware of symptoms associated with menopause, compared with approximately 90% of the general population.
This lack of awareness can become especially concerning when women experience conditions such as endometriosis.
The guests discuss the possibility that pain and other symptoms can be overlooked or attributed to a person’s intellectual disability — a phenomenon known as diagnostic overshadowing.
“It’s attributed to their intellectual disabilities, it’s attributed to behaviours of challenge, and then they get medication for mental health issues… instead of the appropriate HRT medication for their menopause or whatever symptoms that they’re presenting with.”
For women who have difficulty communicating pain, the problem can be even greater.
The importance of being active
Physical activity is another important part of healthy ageing.
Eilish explains that women with intellectual disabilities are often less physically active and experience higher levels of obesity than men.
But she stresses that the reasons are not simply about individual choices.
There can be health and mobility problems, difficulties understanding the benefits of exercise and differences in the level of encouragement and support available.
“It’s finding activities that are fun, finding activities that people will enjoy and engage in is the secret, I think.”
The discussion also highlights the importance of recognising that people with intellectual disabilities have a right to participate in their communities and to be active.
“They have a right to be engaged in the community. They have a right to be active.”
The responsibility, Eilish says, is on supporters and carers to help make those rights a reality.
Ageing and the need for better healthcare
As people with intellectual disabilities grow older, health challenges can increase.
Eilish explains that there is a significant difference in life expectancy compared with the general population.
“For people with intellectual disability across the board… we’re looking at about 20 years difference in age of mortality.”
At the same time, people with intellectual disabilities are living longer, making healthy ageing an increasingly important issue.
“Growing older healthily is the secret. And that’s what we want to aim for.”
The research is intended to help policymakers and service providers understand these changing needs and develop better approaches to healthcare and support.
Better education for healthcare professionals
Another major theme of the interview is the need for healthcare professionals to have a better understanding of intellectual disability.
Stephanie believes GPs and other healthcare practitioners need more education around menopause and women’s health, including how best to communicate about sensitive subjects.
Eilish takes the issue further, pointing out that education needs to begin much earlier.
“There’s no education at all on intellectual disability.”
She believes doctors should receive training about intellectual disability from the beginning of their medical education.
“That’s where we need to start. Not only educate our GPs, but start at the very beginning when they become young medics and include education around that.”
There are also positive developments in nursing education. Eilish explains that training in intellectual disability for general and mental-health nurses is being increased.
“They increased it from one week to four weeks. Now it’s something, it’s very small, but it is something.”
This interview is an important reminder that women with intellectual disabilities deserve the same access to information, healthcare, dignity and opportunities for healthy ageing as everyone else.
Understanding their experiences is the first step towards making sure that healthcare systems and communities are equipped to support them.
This interview aired on Disability Matters on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
Tune in to Disability Matters Thursdays at 4PM | Repeats: Mon 3AM, Tue 3AM & 7AM | Also available on Mixcloud and on bcil.ie/radio.
Compiled by Valentyna Hordiichuk