Should you force a person with dementia to move into aged care if they are unsafe at home? Should you lie to them if the truth will distress them? Can you still think of a parent who can’t recognise you as your mother or father – or has that person really “died” in all but body?
These difficult dilemmas are daily questions for many families caring for a person with dementia and for the aged care facilities managing an increasing number of cases.
Australian Catholic University researcher Dr Xavier Symons has been awarded a Fullbright scholarship to seek answers.
Dr Symons will work with leading aged care and disability scholars at the Kennedy Institute for Ethics at Georgetown University, Washington DC, focusing in particular on issues identified in the Royal Commission into Aged Care Quality and Safety.
He hopes to offer practical recommendations for how care can be adjusted to enable even people with severe forms of dementia to make decisions and communicate their preferences.
“Many people believe that patients with severe dementia and have lost the capacity for interpersonal communication, have no awareness of their surroundings, and no longer have a life that is worth living. This view is associated with a phenomenon known as social death, whereby dementia patients are completely excluded from our moral and social communities,” he said.
“But I intend to draw upon an extensive body of philosophical and social scientific research to show that patients with even severe forms of dementia retain communicative and decisional capacity, albeit in a diminished form. We can enable them to connect and continue to have meaningful relationships with others.”
With one in 10 Australians over the age of 65 experiencing dementia, the need for Dr Symons’s research is high. The interim report from the Royal Commission into Aged Care Quality and Safety found Australia’s aged care system to be in a “shocking tale of neglect” and noted that the poor quality of care right across the aged care system was “most marked in the care provided to people with dementia and other cognitive disabilities”.
Dr Symons is passionate about aged care reform, having volunteered in nursing homes in Sydney and Melbourne for several years and experienced first-hand the many human and organisational challenges facing aged care providers in Australia.
“We have a long way to go in optimising care for people suffering from the more severe forms of dementia as the COVID-19 pandemic has made painfully clear,” he said.
COVID-19 has also affected Dr Symons’s ability to take up his scholarship. He had planned to travel to the United States next month, but will now be delayed until early next year.
With thanks to ACU.