'It's only looking back that we realise what the warning signs were'

The O’Malley family shoulder the burden of responsibility for their mother’s care, writes ROSITA BOLAND

“I was very upset when I heard mum had Alzheimer’s. I was upset for mum: I wasn’t really worried about myself. When we were little, we used to go to a childminder whose mother had Alzheimer’s. From seeing another person with Alzheimer’s, I saw where it was going to go with mum. It was upsetting, I won’t deny it. What made it worse was that when mum found out, she felt she was useless and worthless.”

Michael O’Malley (20) is talking about his mother, Marcella (52). The O’Malley family, Michael, his parents Kieran (50) and Marcella, and his 14-year-old brother, live in Douglas, Co Cork. Marcella O’Malley started to display signs of early onset of dementia when she was 44. She was formally diagnosed three years ago.

There are some 43,000 people in the State with a diagnosis of dementia. Ten per cent of them are diagnosed with early onset, which means diagnosis is given under the age of 65. To the knowledge of the Alzheimers Society in Ireland, the youngest person on record at present in the State to receive a diagnosis was 36. Thousands of others, like Marcella O’Malley, are diagnosed in their 40s or 50s.

Reduce the stigma

“It’s only looking back . . . that we realise what the warning signs were,” recalls Kieran. Father and son are sitting at their kitchen table in Douglas, going over the last decade of family life together. They’ve agreed to be interviewed because they are anxious to reduce the stigma around a diagnosis of dementia: a stigma that Maurice O’Connell, chief executive of the Alzheimer’s Society, suggests is akin to what “cancer was 25 years ago.”

Kieran and Marcella have known each other for 30 years, and have been married for 21 years. Some eight years ago, Marcella started to change her behaviour around certain routine things. “She didn’t like to drive any more. She was nervous. She’d ask dad to drive instead,” says Michael. “She had always liked solving word puzzles. She could still figure them out, but she got me to write in the answers.”

“Initially, I put it all down to stress at work,” explains Kieran. Michael was 12 when his mother started to display symptoms of early onset of Alzheimer’s. His brother was then seven, and has recently admitted to the family that he cannot recall what his mother was like prior to onset of the condition.