A LIMERICK man whose father suffers from a rare form of dementia says that there is “nothing he wouldn’t do for him”.
Ken Greaney, whose father Dave was eventually diagnosed with Lewy body dementia in 2017 after a seven year battle for a diagnosis, is hoping that €2.5million in research funding will keep others from going through the same long road towards a diagnosis.
Speaking to the Limerick Post, Ken said that his father’s seven-year diagnosis battle was rooted in a lack of knowledge among healthcare professionals, one that spurred the dedicated son on to co-found a national advocacy organisation.
“The journey we had was a very difficult one for him. In 2010 he would have displayed unmistakable signs of what we now know to be Lewy Body Dementia, but no one really took him serious and I was very cross at the time because it went on for seven years and no one was helping him,” Ken said.
“It’s only as we’ve moved on in time that I’ve realised that the knowledge and the awareness just isn’t there.”
Dave Greaney was initially diagnosed with depression in 2010 after the death of his wife. He was then diagnosed with Parkinsonism, owing to his change in the way he walked.
It was only when in 2017, after trying medications that proved unsuccessful, that Ken sought a second opinion for Dave, who finally discovered what had been ailing him.
“Years passed and the poor man was just tortured,” Ken said.
“He was being tried out on this and that medicine, being told this and that. All he ever wanted before he lost his ability to talk was just to find out what was wrong with him.”
The Greaney family’s relief at finally getting a diagnosis for their father was short-lived however, as it took another four years to find someone who understood how to treat the disease.
Looking back, Ken says his driving factor now is to make sure that no one has to go through the same journey that he and his father did.
Dave is now a full-time resident at CareBright in Bruff, which Ken says provides excellent care for his father. It was a chance meeting at the Bruff care facility that led Ken to co-found Lewy Body Ireland with Kevin Quaid, who also lives with Lewy body dementia.
“Kevin was looking at the facility as well and he was so relieved because he thought he was the only person in Ireland with this rare illness. I thought my dad was the only person because nobody knew anything about it, nobody knew what it was, what to do,” Ken explained.
And so Lewy Body Ireland was born, with the aim of raising awareness around the disease.
The pair since made contact with Lewy body expert Professor Iracema Leroi, who works in geriatric psychiatry at Trinity College Dublin (TCD).
In 2023, Professor Leroi and a team from across Ireland and Europe presented a case to the Health Research Board advocating for funding to raise awareness of the disease.
They were successful and were awarded €2.5million, which will go towards identifying a diagnostic framework to diagnose Lewy body dementia so families won’t have to wait seven years for a diagnosis like Dave Greaney.
“I’m very close to my dad, there’s nothing I wouldn’t do for this man,” Ken said.
“While it’s deeply harrowing and it’s been a very tough journey, I’m very grateful to my father for that, even in his illness, he’s still teaching me how to be a good person.”
