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Building a dementia tolerant society

  • 29 October 2019


These days I feel a persistent urge to speak out about the issue of ageing. This is hardly surprising in the midst of the work of Australia's Royal Commission into Aged Care Quality and Safety, in the midst of my own worsening memory for the names of things and my partner's lessening ability to remember what happened yesterday, and after the terminal dementia of both my beloved father and former husband.

The underlying tragedy will always be that the people who directly experience the condition of ageing and dementia do not survive to give us their evidence. But perhaps this puts more responsibility on those of us who can feel that they are drawing closer to it.

As I see our friends finding it harder to engage my partner and me in the entertaining conversation they have come to expect, I can see that our achievement and distraction-oriented culture is against us. But all may not be lost. Maybe we can change it. Look at the increased inclusion of disabled people in our community since the advent of the NDIS.

We are learning that people can be different in all sorts of ways so, why can't we accommodate people who are becoming repetitive or who cannot quite recall who they are? Surely we can learn to embrace such old friends and, if they become a risk to their communities, develop a signal like the white stick carried by the blind, so that we can look out for them in new and effective ways.

We must do something to hold our dear ones close to us and away from ghettos of so-called 'aged care' where their challenges are multiplied not only by under-qualified, underpaid and overloaded staff, but by engagement with others with the same problems.

Cultural change is what is needed. Most less developed countries do not share in our ever-expanding aged care industry and I suspect they have accommodated their aged, dementing and dying amongst them in, at least sometimes, more humane ways. How can we learn to do this? How can we, for instance, listen to friends who are becoming repetitive and forgetful so that we can meaningfully relate to them and keep them among us?

Vigorous conversation need not be our only meaningful link. Dementing people are the sum not just of what they can say to us today, but of what they symbolise about the parts of our lives that we have