Last week I spoke to someone who was certain the word ‘Alzheimer’ was German for ‘old timer’.
“Because that’s who gets dementia – old people,” she said.
Wrong on both counts, I’m afraid.
Alzheimer’s disease was named after Dr Alois Alzheimer (it means ‘old hamlet’, incidentally) who, in 1906, determined the brain pathology of a particular type of dementia.
In the years since, it’s become very obvious that there are many other kinds of dementia (about 400, in fact!) and that it is, sadly, not only the old who are struck by this group of neurological conditions, and nor is dementia a natural consequence of ageing.
Younger onset dementia (including Alzheimer’s) can affect people as young as 30, and childhood dementia – which currently impacts about 1,400 Australian children – can be diagnosed within the first few years of life.
Something else that is clear, although perhaps not widely known, is that dementia can affect many aspects of a person, including language, mobility, mood and sensory processes.
Some of what are known as ‘rarer dementias’, such as frontotemporal dementia (FTD) and Lewy Body dementia (LBD), can cause very distressing symptoms such as hallucinations, severe personality changes, even psychosis.
While rarer dementias make up less referrals into the national dementia service I work for – Dementia Support Australia (DSA) – the complexity and severity of the behaviours associated with them require more resources. Unfortunately, awareness of rarer dementias very much lags behind more common variants such as Alzheimer’s, even among medical specialists. This has led to terribly traumatic experiences for many of those who develop these conditions, as well as their families and loved ones.
Some time ago, I was put in touch with a woman named Julane Bowen. Her husband Jeff, a former international commercial pilot, had started to show changes in his personality in his early 60s. In the lead up to his retirement, he was becoming depressed, less active, and increasingly anxious if Julane wasn’t nearby. His GP put it down to ageing and the impending end of a full and stimulating work life, despite Julane’s growing alarm and concern.
“The GP knew him as this sociable, intelligent, athletic man – he thought I was over-reacting,” Julane said. “He just tuned out to everything I was telling him.”
A few years later, Jeff was scheduled into a public psychiatric ward following a distressing interaction with emergency services, where he was treated for depression and schizophrenia. Once again, Julane felt brushed off. After months of badgering, they finally gave Jeff an MRI and discovered severe shrinkage of his left frontal lobe, a tell-tale sign of FTD.
“I kept saying every day, ‘He's psychotic,’ and they were just ignoring me, like, ‘You're not a psychiatrist. What do you know?’” she said. “They should have listened to me.”
Jeff is now cared for at home by Julane, seven years after diagnosis and long past the nine months he was expected to survive. Julane has since gained a law degree so she can advocate for people in similar situations. “It's about spreading awareness, so somebody else does not go through the trauma we did,” she said.
She’s also been instrumental in the establishment of a nationwide network of support groups called Carer Conversations, developed and run by DSA and the Australian Frontotemporal Dementia Association (AFTDA). This is a fantastic initiative that could change the experience for many people, but it’s quite clear that rarer dementias need even more attention, and better funding.
A continuing education unit on the topic for GPs, the reinstatement of mental health training for police, and changes to dementia assessment processes in relation to financial support are good places to start. (Julane, for example, cannot access dementia carer’s payments because Jeff can pass the memory tests.)
Let’s work together to make life better for people living with all kinds of dementia.
For more information about Carer Conversations, go to www.dementia.com.au/carer-conversations.