Case study: Pain of explaining dementia to family

Driving home from Galway to Sligo one day in 2012, Helen Rochford Brennan could only think about how to tell her family she would soon forget them.

At 62, she had been diagnosed with early-onset Alzheimer’s disease. It followed a few years of confusing struggle – searching for elusive words and faces, trailing off midway through sentences.

“I don’t remember the conversation with my family but I do remember the pain,” she says now.

“How do you tell your loved ones that within an undisclosed amount of time you will not be able to recognise them nor retain any of the wonderful memories?”

Much of Helen’s life had been dedicated to advocating for human rights. She had worked for numerous organisations, particularly in community development and the disability sector.

Before her condition emerged, she had lived abroad with her husband, Seán, and son, Martin. Later they returned to Ireland, settling in Sligo where they ran a tourism business.

Today she is the chair of the Irish Dementia Working Group – one of those behind the charter – and tells the story of her own battle with the disorder to further the cause she champions.

“There are days when I can just about manage to push my condition and my unravelling behind a locked door in my mind,” she says.

“The deepest, darkest grief descended upon me for a life I would never have.”

After her diagnosis Helen discovered the lack of support services for anyone under the age of 65. She desperately needed help to inform her about her condition. Some good came from cognitive rehabilitation at TCD where she gained some tools and strategies for life. “When I was first diagnosed I did not think about what my rights were,” she says.