Fragments of an old Italian dialect, largely unintelligible, represent the last vestige of communication between Senator Concetta Fierravanti-Wells and her ageing father.
"My father’s always been a very jovial, joking sort of person, very intelligent.
It’s really hard to see the person that he is today, but every so often there’s still those flashes."
He’s bearing a disease that can cause greater suffering to those who don’t have it. Dementia robs people of memories and acquired skills, predominantly speech.
And it’s on the rise, with a new case diagnosed every six minutes.
Senator Fierravanti-Wells became aware of her father’s decline three years ago.
"The first thing we noticed is he was starting to forget things. He wasn’t reading as much."
Extended interview: Senator Concetta Fierravanti-Wells
The former steelworker’s condition worsened, and she and her mother were faced with the heart-rending decision to place him in professional care; the very antithesis of close-knit Italian family tradition.
“The house is on a heavily trafficked road and it became difficult because he used to go down the street and buy the bread and that sort of stuff, but he just couldn’t do that anymore.
"We were very concerned about him wandering, sometimes even at night.”
Lifetime soul mates were separated.
"My mum and my dad, there’s only about nine months’ age difference. My parents have known each other since they were at school together, so 80 years.
"It’s very hard to know somebody for 80 years, to be married to somebody for a such a long time and to virtually see them disappear in front of you and it’s been very hard.
"It’s hard for dad, but I think it’s actually been harder for my mum."
Dementia sufferers revert back to mother tongue
They are not alone – growing ranks of ageing migrants are presenting challenges to the health system as language fades.
Deborah Burton from Uniting Care Wesley’s Regency Green Multicultural Aged Care facility in Adelaide recounts the tale of one resident.
"She had four languages but, unfortunately, as her dementia progressed she made sense in none of the languages and our staff found it very distressing that they could not communicate with her and help her with her needs."
Alzheimer’s disease is perhaps the best known of some 300 types of dementia. Alzheimer’s Australia President Graeme Samuel says the toll is significant and growing.
"330,000 people have been diagnosed with dementia in Australia and an extra 1700 are identified each week. It’s an enormous drain on resources."
He says one of the challenges is to reduce the stigma of the illness, prompting Alzheimer’s Australia to make September "Dementia month". It aims to raise awareness about the disease, especially in diverse communities.
Multicultural Aged Care SA chief executive Rosa Colanero says that is no small task.
"As a disease, it’s a fairly modern one and many of the cultural groups don’t have a word for dementia, and so there is quite a bit of cultural awareness that needs to be done, about the concept of dementia, what it means and how to cope with it."
It is estimated 1.2 million people are involved in caring for those with dementia, but its rapid growth means Australia faces a shortage of more than 150,000 paid and unpaid carers within 15 years.
Deborah Burton says almost a quarter of the demand will be in the multicultural sector.
"There is no additional funding for culturally diverse aged care service providers, but there is certainly a much greater cost in identifying appropriate staff; seeing that they have the knowledge and skills that they require, but also that they meet the regulatory requirements of Australian aged care."
Already costing the health system some $5 billion a year, the Commonwealth is focused on boosting research in a bid to curb dementia’s debilitating march.
Senator Fierravanti-Wells says since 2001 there has been about $1.1 billion given to the National Health and Medical Research Council.
"It’s really important that we do find a cure to dementia. And unless we do find a cure, by 2050 there will be almost 1 million people with Dementia."
For more information about Dementia visit https://fightdementia.org.au/
Factbox: Key statistics
- There are more than 332,000 Australians living with dementia
- This number is expected to increase by one third to 400,000 in less than ten years
- Without a medical breakthrough, the number of people with dementia is expected to be almost 900,000 by 2050
- Dementia is the third leading cause of death in Australia (the second leading cause in women ) and there is no cure
- Australia faces a shortage of more than 150,000 paid and unpaid carers for people with dementia by 2029
- By the 2060s, spending on dementia is set to outstrip that of any other health condition. It is projected to be $83 billion (in 2006-07 dollars), around 11% of health and residential aged care sector spending
Source: Alzheimer’s Australia
Factbox: Research funding
- The National Health and Medical Research Council (NHMRC) will allocate approximately $32 million to dementia research in 2013-14. This is an increase on the $21.5 million spent in 2012-13, but still well short of funding for research on other diseases
- The Federal Government has committed to providing an additional $200 million for dementia research over the next five years.
- One of the pressing issues is to build capacity in the dementia research sector by supporting students and early career dementia researchers.
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