It was when she first trained as an intellectual disability (ID) nurse at Stewarts Hospital and later worked at the Daughters of Charity Service, working with older people, that Mary McCarron realised there was so much about this population that we didn’t understand.
As she later trained as a general nurse at James Connolly Hospital, Blanchardstown, she met people who were being admitted with an ID. But what she was seeing was that many people in the general hospital didn’t fully understand how to support this population or what their needs were. And she felt continually drawn back to how she could make change in this area.
In the late 1990s, Prof McCarron was one of the first nurses in the country to be offered a clinical fellowship by the Health Research Board to study, and this became the lightning rod for her transformative research that would have such an impact on people’s lives. She credits the long-term support of the Health Research Board and the Department of Health for her success as a woman in science.
Prof McCarron, who has just completed her second term as Dean of the Faculty of Health Sciences at Trinity College, is the first woman and the first nurse to have ever held such a role at the university. She is a Fellow of Trinity College Dublin and author of over 100 publications on ageing. Her PhD focused on understanding the needs of people with Down syndrome across the continuum of dementia, with a focus on pursuing how our services might improve to make people’s lives better.
That initial research showed that people ageing with Down syndrome were the largest genetically predisposed group to develop dementia.
This led her to ask the question: what does this mean for care? And what more do we need to know about the experiences, joys and risks of ageing for people with an ID?
Prof McCarron is also the founder of the first ever longitudinal comparative study on ageing in persons with ID, known as IDS-TILDA. Earlier this year, she received the first Health Research Board Impact Award in recognition of how her research has transformed the health, care and living environments for people with ID and dementia.
The dementia-specific service, which she established at the Daughters of Charity Services, is now recognised as a world leader in dementia diagnosis and post-diagnostic support, with specifically designed care homes having won numerous awards.
Starting at the coalface of working with people with ID, even as she moved into the hallowed halls of Trinity College, she remained very close to what was happening in services to support people with ID.
“That is unusual in academia because sometimes when people move into an institution like a university, the biggest risk is you lose touch with what’s happening out in the real world,” says Prof McCarron.
“I have continued to work very closely with people with intellectual disabilities throughout my research and with those who are providing care for them. That has kept me focused. It has kept me grounded in what the real issues are and to try to understand how we might be able to make real change.
“I remember a mother coming from Tralee in Co Kerry to meet me with her son. She had written and called in desperation, looking for help around what was happening to her son, who was in his early 50s. She came on a train to meet with me. I walked them back to Heuston Station and watched the distress on both their faces.
“This man was at advanced mid-stage dementia and his mother was in her 80s. I thought, ‘How did this happen in a wealthy country like Ireland? Why do we place the burden of finding care on this woman and her son and force them to endure this journey trying to get help?’ That day, I vowed to try to change that,” she says.
And Prof McCarron is doing just that. She is Director of Trinity Centre for Ageing and Intellectual Disability and also director of the first national memory clinic for people with ID – soon to be launched in Tallaght University Hospital with satellite sites around the country.
When it comes to working with people with an ID, she notes that their wishes and desires are pretty similar to anyone else in society in terms of how they want to live their lives.
“They want the opportunity to live in a home of their own choice, in their own communities with their families and friends for as long as possible,” she says.
“They want opportunities to engage in the normal things in life, to be part of their community. They also want and need opportunities to engage in life-long learning and other programmes which are imperative to their health. They want meaningful things to do with their lives.
“We need to be innovative as to how we develop and support real and meaningful relationships for people, because that whole area of social connectedness – family, friends – is fundamental and key to health for all of us.
“And we need to have a very clear vision and roadmap as to what supports need to be put in place to enable people age to successfully and with dignity.”
Having just launched the Positive Ageing Indicators for People with an Intellectual Disability with the Department of Health, Prof McCarron feels we now have a policy document that provides indicators for health and wellbeing for people with ID.
“I want to see a country that is the best place in the world to grow old for everyone in society, and that includes people who are at risk of being marginalised, like people with an ID, often who have limited wealth and education, and not a society just for people who have the means to buy whatever services that they need,” says Prof McCarron.
“While we have seen an increase the longevity of people with intellectual disabilities, they are still dying a lot younger than the general population. The biggest tragedy for them all would be to age in poor health, without the services they need and without friends, family and supports in the community,” she says.
When her own two children were small, Prof McCarron befriended a woman with an ID. Molly, who passed away at the age of 91, was a regular visitor to the McCarron home for over 20 years and was involved in all the usual celebrations of family life.
“I learned so much from Molly and my children were shaped by her and it gave them such a great understanding of how to respect difference. I got more out of the friendship with Molly than I ever put into it,” says Prof McCarron, who lives in Donadea, Co Kildare with her husband Noel and children, Louise and Cathal.
“Molly had no real language but could communicate so perfectly through her non-verbal mechanisms, like gestures and touch and non-verbal cues. Her sense of kindness and absolute resilience to everything that had happened in her life and her sense of joy in the smallest things in life, were wonderful. Her openness was quite extraordinary.
“People with an ID have a need to give and we need to open up that opportunity. We have to open our eyes to what that looks like. As a society, we have to open our minds up to that and to make a real effort at an individual level by asking ourselves, ‘What have I done to welcome, to support and to create the opportunity for someone with an intellectual disability to enter our community?’
“We need to ask, what have we done to make people with intellectual disabilities welcome in our gyms, our swimming clubs, our GAA clubs, into our golf clubs, community centres; whatever places are valuable to the community. What have we done to make that happen for all people?
“I often feel that I learned so much from people with an intellectual disability. We have to be willing to listen and to hear.”