Sean Kelly’s brave story of finding peace with younger onset dementia

A diagnosis of dementia at 44 came as a relief not a shock for Sean Kelly.

Sean’s type of dementia, frontotemporal dementia (FTD), is the most common form of dementia in those under 50 and in Sean’s case there is a hereditary cause. There is no cure.

He tells of his journey with FTD in his book, Sean’s Story, co-written with Deborah Moore, to be released at HammondCare’s IDC 2020 conference on September 21 and 22.

Sean, a proud Rabbitohs supporter who grew up at Maroubra, said his diagnosis at 44 was helpful as it gave an explanation for the personal difficulties that the disease was causing him.

As dementia is normally associated with old age, those with FTD are frequently misdiagnosed as having depression or a psychiatric condition.

“I had some troubled times during this period. I received a diagnosis of schizophrenia, was prescribed numerous medications, and separated from my wife,” Sean writes in his book.

“I believe getting the right diagnosis has helped me and others to understand what I am experiencing and has given me the best chance to access the right support and manage my symptoms.”

In his book, Sean, now 54, gives his top five tips for living well with younger onset dementia and FTD.

These tips are: chase the right diagnosis; find a place to live that fits you; be cared for, not just cared about; stay connected to the community; and remember that a happy heart is a happy mind.

Sean is a resident at Streeton Cottage, a specialist facility for younger onset dementia, at HammondCare Horsley. He describes it as a stable and supportive environment and “I’ve found peace there”.

Previously, Sean had stayed in an aged care home and found he had nothing in common with the other residents “and the food was awful”.  A boarding house with 50 other men also was not right and he felt unsafe.

Sean’s most recent assessment showed that his dementia has plateaued.

“Having the diagnosis of FTD at a young age is not ideal, but I feel as though I’m living the best life possible. I’m happy and content where I am, and I believe this has helped to keep my moods and mind on an even keel,” he said.

On Wednesday 16 September Sean met with HammondCare Chief Executive Officer Mike Baird who congratulated him on his book and his willingness to help others through sharing his experience.


Download Sean's Story Here