With the Aged Care Royal Commissioners now considering their report it’s time to be clear. Dementia care in Australia is a human rights disaster impacting on our oldest, frailest and most needy citizens. Australians living with dementia are suffering systemic human rights abuse; revealed in the desperate shortage of funding, the poor range and quality of services and the neglect, abuse and early death that many will suffer. It’s so common that we hardly notice it any longer, yet it is happening in every suburb and town across our nation. These men and women desperately need our protection and support, they deserve a determined campaign for justice.
Consider the excessive delay suffered by many in achieving an accurate diagnosis. On average there is a three-year delay from the onset of symptoms till a diagnosis of dementia. Thirty-six months of worry and wondering and isolation. Over a thousand days filled with confusion, torn emotions and behavioural change without knowledge of the cause. With what other fatal condition would we tolerate such a delay in achieving a prompt, accurate and timely diagnosis?
The uncertainty of diagnosis leads to the desperate certainty of inadequate care. The newly diagnosed will live with dementia for perhaps five or ten years and for most of that time, with support, they can live at home where they want to be. With adequate home care support those years can be manageable and fulfilling. Without it, they can be unbearable. This is where the basic injustice at the heart of our age care system is revealed, its strict rationing. Whilst general health care is provided according to need, age care services are rationed so as to limit numbers and drive down the cost. A diagnosis of dementia and an assessed and accepted need does not guarantee that a funded care package will be offered or that the hours of coverage required will be available. The calculated policy of rationing delays the provision of care for many and ensures that few with dementia will receive the hours of care they actually need. It also deliberately forces sons, daughters, spouses and neighbours to turn their lives upside down to make up for the shortfall.
Many with dementia at home need to be fed at every meal, dressed and changed, distracted and watched though the long hours of the night. For this they receive just a few hours of funding per day for what are twenty-four long, confronting, desperate hours. By rationing services successive Federal Governments have cynically exploited the love of spouses and children and the sense of duty of carers so as to limit the growing cost of aged care and protect the budget bottom line.
Inevitably as the dementia advances, hospital placements will occur. Because our hospitals are not designed, funded or staffed to care for the frail elderly, despite the fact that they are overwhelmingly the majority of their clientele, a hospital placement will usually result in a rapid progression of the dementia, often triggering delirium, dehydration and a vastly increased risk of a fatal fall. Often alone, some pass the last moments of their precious lives in the midst of the impersonal chaos of an acute care ward. The experience of an elderly patient with dementia in hospital is overwhelmingly bad; lonely and impersonal it often leads to swift decline and premature death.
Hospital discharge starts one of the most heartbreaking stages of the dementia journey; the dramatic, deadline-fuelled scramble for a nursing home bed. Limited in choice because of a severe shortage in quality nursing home places, it becomes an auction of the least worst outcome and even this comes at a punishing financial cost that shocks and traumatises families as they search for any bed that is available. Distressing for the patient who will never again return to the home they knew and loved, the process can be devastating for the carer who has had to make the choice, and corrosive to families forced to confront fault lines in their relationships.
The trauma of forced relocation is just the precursor to the desolate reality of life in too many residential aged care facilities. For many residents this means confused loneliness and the loss of individuality, dignity and the most basic privacy. For some it will mean long hours of tedium and the overuse of anti-psychotic drugs to control behaviour. For a few it means care so poor that it amounts to elder abuse. Whilst there are creditable, quality exceptions too many nursing homes are at the sharp end of human rights shortcomings. Here residents have a right to a system that will protect and comfort and give them an easy passing, not one that ignores the significance of their lives.
Those rights are far from the norm even if your family is loving, articulate and financially sound. If you live alone, or have no carer, or you are poor, or if English is not your first language or if you are Aboriginal or gay or poorly educated or live in remote or regional Australia, if you are any of these things your hold on human rights as you age is even more tenuous. If you also have dementia, then your plight is particularly harrowing.
Children used to treated with such disregard in the past. Seen and not heard, corporal punishment tolerated, even expected, inadequate or unavailable childcare, class sizes of 40 students common. Now that has all changed and it is unimaginable that such mistreatment of children would be tolerated today.
One reason for the change was the fact that Australia signed up to the UN Convention on the Rights of the Child in 1989. It was a laudable step that gave certain legal protections to the child and encouraged the change in approach with children.
It is time for Australia to show equal concern and protection to our older citizens and push for a Convention. Our aged deserve nothing less.
We have a built a vast edifice of aged care that simply fails to adequately deliver for many of the estimated 400,000 Australians living with dementia. To change that outcome, we need a revolution; a revolution in funding and services, a revolution in care but mostly a revolution in seeing. We need our political leaders to see the care of older Australians with dementia to be an honour and sacred duty. We need companies involved in the provision of dementia services to see quality of care as their prime motivation. And we need all Australians to see our community as a place where every older citizen but especially those with dementia should be welcomed, where their needs are cared for and their rights respected. (1117 words)
November 2020
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