IMAGINE the challenge of dealing with a loved one diagnosed with younger-onset dementia – a loved one often still working, still physically active and with school or university-aged children.
Each dementia case is uniquely different but stigma surrounding the condition can lead to misdiagnosis and added stress for carers.
Neuroscience Research Australia’s Muireann Irish has called for greater awareness in dementia, to breakdown the stereotype that this is just an older person’s disease.
Dr Irish’s new study confirms a loss of empathy in patients with frontotemporal dementia is related to deterioration in the ‘social’ part of the brain, often diagnosed with people aged under 65. In contrast, empathy remains relatively intact for people living with Alzheimer’s disease, the most common form of dementia.
And Dr Irish is concerned Australian communities are not adequately equipped to offer appropriate support to such patients or carers.
There is are no care facilities for younger-onset dementia in Victoria. There is one in New South Wales.
Ballarat Health Services Eyres House offers young and early onset dementia planned activity programs weekly. Those who need full-time residential care must look to aged care facilities when they still have a lot of living to do.
The rate of people living with dementia in Ballarat is set to increase 207.9 per cent by 2050, according to Alzheimer’s Australia. About 97,000 Victorians have dementia, including more than 1700 in Ballarat.
Dr Irish found people with behavioural-variant frontotemporal dementia were often unaware of the impact of their behaviour on others.
“Even when it is explained to them, they don’t often comprehend how their behaviour is inappropriate,” Dr Irish said. “...We do see caregivers carry the highest burden and stress dealing with dementia and there is little respite. There are behavioural-management strategies for caregivers but we can’t make a one-brush fits all approach.”
Social and emotional changes could often be misdiagnosed as bipolar disorder, Dr Irish said, but frontotemporal dementia could also make people engage in risky behaviour, like shop-lifting or gambling, others ate a lot more, because their reward and regulatory system was compromised.
While Dr Irish’s study was focused on the science, she said findings highlighted the strain on caregivers, especially in public situations, dealing with an otherwise active, healthy person. Dr Irish said awareness was the key to create social change.
National Dementia Helpline: 1800 100 500.