Melissa Dunne

💙 Tony’s Song Lives On — Raising Awareness for Lewy Body Dementia

Tony, fondly known by everyone as fun-loving, a joker, a wonderful playful dad and an amazing grandad, was the heart of our family. He had a real gift for making people laugh, was a talented singer, and loved nothing more than a good old karaoke session, especially singing Elvis songs.

Losing Dad to Lewy body dementia has been one of the most painful experiences our family has ever faced. This cruel disease slowly took away the man we knew and loved, replacing laughter and familiarity with confusion, fear and distress.

Watching him struggle with sleepless nights, frightening nightmares and the maddening effects this disease had on his mind was devastating. The changes in his behaviour left him frightened and often not understanding what was happening, while my mum was left exhausted and scared trying to cope without enough support.

One of the hardest parts was how long it took to get a diagnosis. By the time we finally had answers, the disease had progressed so far that the help came too late for him and for our family. In his final days, he was in hospital, distressed and confused, with little understanding around how best to care for someone living with Lewy body dementia. We had finally found a care home able to support him, but heartbreakingly he passed away before he could get there.

More awareness, earlier diagnosis and proper care pathways are urgently needed so families do not have to face this illness feeling so alone.

Dad loved Elvis, and it feels fitting to remember him with the words: “Wise men say only fools rush in, but I can’t help falling in love with you” — because we will always carry that love for him.

This fundraiser is for Tony, and for every family facing the heartbreak of Lewy body dementia ❤️