Researcher honoured for transforming dementia care for people with intellectual disabilities

The Professor of Ageing and Intellectual Disability at the School of Nursing and Midwifery, Trinity College Dublin, has been recognised for her transformative work to improve the lives of people with intellectual disabilities living with dementia.

Prof Mary McCarron was presented with the 2024 Health Research Charities Ireland Research Impact Award at a recent ceremony in Dublin’s Mansion House.

The award recognised Prof McCarron’s research that has reshaped care practices and policy for the many people with intellectual disabilities who live with dementia, and improved care for this often-neglected group.

People with intellectual disability have an extremely high risk of developing dementia and may also develop dementia earlier and experience significant impacts on their independence from relatively small changes.

Prof McCarron and her team identified five ‘pillars’ critical to support for people with intellectual disability:

1. living well with dementia;
2. sense of place and community;
3. dementia awareness and skills;
4. supportive infrastructure; and
5. promoting autonomy.

This led to the production of a set of guidelines, which, with support from the National Dementia Office, the HSE’s National Clinical Programme for People with Disability, the National Intellectual Disability Memory Service (NIDMS) and The Alzheimer Society of Ireland, are set to influence dementia care nationwide, ensuring a lasting legacy of improved quality of life.

“While there is currently no cure for dementia, no cure does not mean no hope,” said Prof McCarron. “There is so much we can do to support the person to live well with dementia, and these dementia care guidelines provide the road map, practical advice and useful tips on not only what high-quality dementia care should look like, but the critically important detail around how to do it.”

CEO of Health Research Charities Ireland Dr Avril Kennan highlighted Prof McCarron’s dedication to including the patient voice throughout the project.

“Health charities fund research with the potential to meaningfully impact the lives of the communities they support,” she said. “The involvement of the people living with intellectual disability in the research design was a foundational element of this project. From the outset, Mary and her team worked collaboratively with these co-researchers, ensuring their voices shaped every stage of the research.”

The HRCI Research Impact Award seeks to highlight research funded by health research charities through the HRCI/Health Research Board (HRB) Joint Funding Scheme which has had a particularly positive impact on peoples’ lives.

Prof McCarron’s work received funding of €180,000 under the HRCI/HRB Joint Funding Scheme in 2020 and was supported by The Alzheimer Society of Ireland. The award was presented by well-known advocate and The Alzheimer Society of Ireland Director, Ann Twomey, who has long been a vocal champion for carers of people living with dementia.

“Receiving a dementia diagnosis is life-changing for every person and their family, and the support that comes after the diagnosis can truly determine a family’s experience,” said Ms Twomey.

“Until now, best-practice post-diagnostic dementia supports have not been properly understood, resourced, and made available with people with an intellectual disability.

“The Alzheimer Society of Ireland is passionate about supporting research that delivers real-world impact for people living with dementia and their families, and we are confident that this work will create meaningful change both in Ireland and internationally. We are thrilled to congratulate Prof McCarron on receiving this well-deserved award.”

The Mansion House event also recognised 12 new research projects funded through this scheme focused on areas such as rare diseases, cancer, vision loss, dementia, and lung disease.