When Murial Moore’s husband Martin was diagnosed with dementia in his early 50s, the couple felt a stigma around the reality of living with the disease. “People don’t understand, so you try to cover it up,” she said.
Ms Moore, who has twice taken the Alzheimer Society of Ireland’s (ASI’s) seven-week training programme for family caregivers, said she would have undergone counselling had it been available “just to deal with the diagnosis”.
She was speaking at an ASI event where the group called for €62,000 in funding in Budget 2026 to initiate a counselling support scheme directed towards people impacted by dementia.
Dr Fergal Timmons said “we know that family carers of people living with dementia are often not prepared for their new roles”, adding that “many simply cannot cope”.
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Citing an ASI research report, he said “71 per cent of family carers and 84 per cent of people with dementia told us they would avail of counselling services if provided”.
The group asked the Government for funding for the project in previous pre-budget submissions, but it has not been provided.
ASI plans for the counselling service to be offered to family members quickly upon diagnosis, to help them come to terms with their new reality.
Ms Moore, whose husband Martin has since died, was able to meet people experiencing the same challenges as her during the ASI training programmes. It was at these that she received “the best advice I’ve ever gotten” thanks to “small but great suggestions” on how to deal with dementia-related behaviour, such as “wandering around”.
Advocates for those affected by Alzheimer’s have urged the Government to invest €9 million in total in dementia supports, service and research in the next budget, in order “to address major inequity of access across the country”.
The ASI is asking for funding for “dementia-specific day care centres” and home services to “help alleviate pressure of residential care services”, often family members.
Paul Butler was diagnosed with early onset dementia when he was 56. Having no family history of dementia, he and his wife Liz described this experience as “a huge shock”.
Ms Butler remembers the day well. “The diagnosis was dropped on us. We really shut down that day,” she said, adding that in its aftermath “your circle closes in a little bit” as it becomes “difficult to share it with others”.
Despite a strong support system, encompassing staff at St James’s Hospital who have become their “rock” and four “very resilient” sons, she said they’ve felt isolated at times: “The one thing Paul wanted when we got the diagnosis was to meet people his own age with it,” Ms Butler said.
Since leaving full-time work due to his condition, Mr Butler has joined the Irish Dementia Working Group to advocate for improved services and awareness about the disease, as has Frank Jennings, from Shankill, Co Dublin.
His wife Angela echoed the Butlers’ sentiment, saying a dementia diagnosis “is a very lonely experience at first. Sometimes when you tell people about Alzheimer’s, they back off a little bit.”
Availing of counselling services or a support group “would have been amazing,” she said. “We could have gone through this difficult journey together.”
Diagnosed in 2020, Mr Jennings took part in ASI-organised meetings and online calls with other people living with the disease, something which Ms Jennings called “a lifeline” for her husband. “It really gave him a purpose,” she added.
“He goes into these meetings and he matters. His voice, opinion, and experience really matter,” she said.
