A recent briefing in the Irish parliament (the Oireachtas) highlighted the often hidden reality of young onset and early stage dementia, bringing the voices of people with lived experience directly to policymakers.
The briefing, “Addressing Young Onset & Early Stage Dementia: Unique Needs, Significant Impact and Supports Required”, was hosted by the All Party Oireachtas Group on Dementia – co chaired by Senator Fiona O’Loughlin and Deputy George Lawlor – and took place on 25 March.
Speaking directly to members of the Irish Parliament, Wayne Baron, who lives with young onset Lewy body dementia, described the profound impact that diagnosis, loss of employment and financial strain had on his life and family. His account highlighted the lack of age appropriate supports for people diagnosed under the age of 65.
More than 4,500 people in Ireland are living with young onset dementia. Many experience delayed diagnosis, loss of income, limited access to suitable services and increased isolation at a stage of life when they may still be working, raising families and planning for the future.
Other speakers included representatives from The Alzheimer Society of Ireland (ASI) who outlined what supports are working, including young onset Activity Clubs and Cognitive Stimulation Therapy, as well as significant unmet needs. Concern was raised about financial insecurity and the lack of automatic access to appropriate home care supports.
Wayne, a member of the Irish Dementia Working Group, also spoke about spending 18 months experiencing hallucinations before receiving a diagnosis at age 52, and the impact of losing the job he loved as a chef. He described how peer support through ASI’s young onset Activity Club helped him feel understood and less alone.
“Everything changed overnight,” Wayne said. “Finding people who truly understand young onset dementia made a real difference. I’m still me, and the right support helps me live my life.”
Cormac Cahill, Head of Advocacy, Research and Public Affairs at ASI, said:
“Hearing directly from people like Wayne is essential to truly understanding the reality of receiving a diagnosis at a younger age. Age appropriate and stage appropriate supports and opportunities for peer connection make a significant difference, and strong Government support is needed to ensure meaningful progress.”
The briefing underlined the urgent need for stronger policy action to ensure people with young onset dementia can live well in their communities.
