My mother is not one of those smiling, seemingly content elderly people “living with” dementia that you see on the homepages of Dementia Australia and Dementia Support Australia.
My mother is, despite the best care I can find her, and depending on the hour of the day, variously terrified, paranoid, angry, depressed and totally divorced from reality.
My mother is one of the estimated 401,300 Australians with dementia, according to a new report from the AIHW, released on Thursday. She is also one of the 64,600 Australians who were dispensed a dementia-specific medication in 2019-20. That number rose by 43% between 2012 and 2020, by the way.
My mother is a smart, socially aware, status-conscious woman who still knows how to work a room. She presents relatively well when she speaks with strangers – she’s polite and lucid (if factually wrong), and she still knows when to laugh at the right moments in a conversation. Most of the time.
With me, however, all her fears come out. Last night she was convinced that my father was being chained up and beaten just outside the door of her room and could I call the police please.
The best advice says, don’t argue with people with dementia – it’s a pointless exercise that only leads to tension and upset. But how do you “humour” someone distressed enough to want the police because her three-years-dead husband is being beaten in the corridor?
The nursing staff at Mum’s home are superb – I have not one word of criticism for the work they do and the care they take. But they have learned that disagreeing with Mum triggers her temper, so they let her do what she wants and believe what she wants. As long as she is not a danger to herself or others, she is free to express herself.
She takes a small dose of an antipsychotic to “take the edge off” the paranoid delusions that made her kick and fight the nurses early on – it’s enough to keep her “settled” without sedating her too much. All done with my permission and regular follow-up from the visiting GP, of course. One in five people with dementia who are prescribed dementia-specific medications are given an antipsychotic at least once a year, according to the AIHW.
And here is where I am speaking from a place of incredible privilege.
I am one of the lucky ones when it comes to caring for a person with dementia. My parents worked well-paid jobs all their lives, and had a hefty-ish amount of money behind them by the time Dad died and Mum was diagnosed. It was financially possible to get Mum the care she needed while she remained at home, and then to move her into a private total care facility where she will be well looked after for the rest of her life.
I have never needed to call on government programs, or Dementia Australia or Dementia Support Australia, or any other publicly funded organisation or NGO. Help comes to you when money is plentiful, it turns out. I am very grateful that my family’s financial security is not threatened by the care my mother needs.
The same AIHW report clearly shows that although dementia seems to occur in all socioeconomic groups relatively equally, how those different groups deal with dementia varies.
The burden of disease is least in the highest socioeconomic group (5.7 DALY per 1000 population v 6.6 in the least), hospitalisations are fewest for the rich (39 per 10,000 v 47), and those in the most affluent group are less likely to live in permanent residential aged care (293 per 100,000 v 309).
It will come as no surprise, given what we know about health inequities facing Aboriginal and Torres Strait Islander Australians, that dementia deaths in the Indigenous population have skyrocketed by 70% between 2011–15 (296 deaths) and 2016–20 (503 deaths), according to the AIHW. Dementia was the fifth leading cause of death among Indigenous people aged 65 and over during 2018-2020.
Between 137,600 and 354,200 Australians are “informal” carers for someone with dementia. That is, they are not “providing care to those living in permanent residential aged care and paid workers or volunteers arranged by an organisation or formal service”. The AIHW says those numbers are likely to be an underestimate.
Three in four of those carers are women. Half of them are caring for their partner.
Two things are appalling about the numbers in the AIHW report. The first is that, in so many categories, we don’t know exactly what the number is.
Why are data so lacking in this area? These days we can tell when someone comes within a kilometre of a pair of designer jeans with their smartphone and can intrude on their social media feed accordingly. But somehow we can’t find out how many Australians have a diagnosed disease, or are being cared for by a family member with little support? I call horsepucky on that one.
The second appalling thing is that by 2058, according to the AIHW report, 850,000 of us will be living with dementia. And yet aged care in general, and dementia care in particular, continues to be underfunded, underresourced, underserviced and underappreciated by politicians and policymakers.
I’ve written about this before, several years and many kilos ago, and I still don’t get it.
Every one of us, regardless of political persuasion, economic circumstance, health or family support, will have contact with the aged care system one way or another before we die. Whether it’s for ourselves, or our parents, siblings or, God forbid, our children – we will have to engage with it.
We can’t deny we’re terrified of death and ageing, and no doubt that is partly why this topic causes us to run like cockroaches under a kitchen light.
But surely, if we can’t bring ourselves to do it for our parents, we can be selfish enough to make sure our ride into the sunset is a more comfortable one than the current generation of Australian elders is enduring?