Alzheimer’s carries stigma and little hope of cure
Early intervention for under-65s is needed
In a time of medical breakthroughs, where cures are created for many conditions that were once terminal, it’s easy to forget that some conditions are still incurable and almost impossible to prevent or slow down.
Longer life expectancy means that by 2041 there will be 1.4 million people in Ireland aged 65 and over, making up 22 per cent of the population.
Dementia and old age go hand in hand so the number diagnosed with dementia is expected to increase three-fold to more than 120,000 in the next 30 years. Currently, there are nearly 42,000 people living with dementia in Ireland.
Alzheimer’s disease, a common form of dementia, causes memory loss and there is very little medically that can be done. Certain drugs may slow down the progression of the condition, but they are not a cure.
Isolation and exclusion
The World Alzheimer Report 2012 looked at the stigma attached to dementia and Alzheimer’s. Families and friends often don’t know how to deal with it, which creates feelings of isolation and exclusion for people with dementia.
The report surveyed 2,500 people across 54 countries, including 150 people with dementia. Three-quarters of respondents said there were negative associations about people with dementia, while 40 per cent of people with dementia felt isolated or treated differently since their diagnosis.
“People need a better understanding of Alzheimer’s. They need to understand that it is a disease. It’s not their fault; it is just something that happens to the brain.”
Stephen* has been personally affected by Alzheimer’s and has seen the stigma first hand.
“My dad died when he was 48,” he says. “They found that he had a genetic mutation.” Stephen’s family’s particular situation is very rare and accounts for less than 1 per cent of cases.
However, as a gene that is inherited by either the mother or the father directly, Stephen has a 50 per cent chance of having the genetic mutation.
“If I inherit the gene, I will get Alzheimer’s, there’s no maybe about it. But if I don’t, I don’t and then I can’t pass it on to any children.”
Stephen says, having gone through it in his own family, he’s seen “both sides of the spectrum” with stigma.
“You’ve got one side who don’t want to talk about it – they’re almost in denial about it – and then the other side who will shout as loud as they can to be heard about it and raise awareness.