42 and scared of dementia
Lillian Small knows there is a good chance that, before she turns 50, she will start losing her mind.
One of a family of 10 children, the high-flying Wellington executive has already seen her father and two siblings struck down by dementia in their 40s.
"In my family, it's a 50 per cent chance."
She has done everything possible to load the dice in her favour: mind puzzles, exercising, eating plenty of fish, even avoiding surgery for her wisdom teeth on tenuous evidence that anaesthetic could be a dementia trigger.
But at 42 years old she is on constant alert for signs that her mind is taking a hereditary turn for the worst.
More than 13,000 people are diagnosed with dementia every year, and fresh research commissioned by Alzheimer's New Zealand shows a high proportion of Kiwis know someone with the group of brain diseases. The number of people with dementia continues to rise as the population ages but, as Small's family shows, it is a myth to assume you're safe before retirement age.
The youngest of 10 children, Small can barely remember her father before his mind began to go. A mechanic, he would spend hours in his workshop working on engines he could no longer recall how to repair, losing his tools and accusing his family and neighbours of stealing them.
"I couldn't really bring children home from school because there was a fear that maybe he was walking around the hall with his pants down."
He was finally diagnosed with early-onset Alzheimer's in his 40s, when Small was 13 years old, and died six years later - his final years spent in a rest home surrounded by residents old enough to be his parents.
But the connection between Small's father's illness and her own genes only really clicked about three years ago when her brother returned to New Zealand from Thailand, where he had been working as a civil engineer. After looking after him for years as his mind deteriorated, her brother's co-workers had eventually loaded him onto a plane home. When he arrived he did not recognise his brother, mistaking him for an old friend.
"I think we grew up in denial that this was a hereditary disease . . . It was devastating to get that call, an absolutely ‘holy shit moment' that this is real and it's not going away."
Small's brother died about two years ago, just after his 50th birthday, in a rest home like his father did. Today, another of Small's sisters remains in a home with Pick's disease, another less common form of dementia. The mother-of-three now requires help eating because she has forgotten how to swallow.
"I can't go see her. I want to remember my sibling with a certain image. I don't want to remember her that way."
Small has endlessly analysed the likelihood of her following in the family foot-steps and kept a watchful eye on her remaining siblings. The possibility has shaped the way she lives, even down to the cooking pots she uses - stainless steel, as some people believe aluminum exposure is linked to dementia. It has even played a part in her decision not to have children.
However, there is little medical science can tell her about the dementia gene and whether it will be activated in her. "I've been quite proactive but I am also shit scared."
She and her closest sister often discuss their family's genetic misfortune, sifting for common traits linking their father and their unfortunate sibling together and, hopefully, setting them apart.
"But we rarely talk about the future or how we would address it . . . we pretend we would never have to talk about each other like that."
It is estimated that about one in every 100 New Zealanders has dementia, with more than 13,000 cases diagnosed a year.
Dementia is an umbrella term for a group of progressive diseases, the most common being Alzheimer's, which damage the brain, causing memory loss and eroding the ability to reason and communicate.
There is no cure for dementia. It is more likely to affect older people but about one in 1000 people under 65 have dementia.
A UMR Research study – commissioned by Alzheimer's New Zealand and published today – shows about two thirds of New Zealanders know or have known someone with dementia. Of these, about two out of three had a family member with dementia.
For about a third of Kiwis, dementia is one of the greatest fears of growing old. Alzheimer's NZ is running an About Dementia campaign to raise awareness of the condition and its growing prevalence. Executive director Catherine Hall said many people still thought dementia was an ageing disease, but it could strike people as young as 30.
The Dominion Post