Rethinking Dementia, 2020

Image source: Kate Swaffer 2020

Apologies this post was accidentally published yesterday, when is was meant for today, day 2 of #DAM2020! Arrgghhhh! It is easy to hit the wrong button!

Anyway, onto much more important things.

The need for everyone to rethink dementia continues to be highlighted in the many stories of neglect, abuse, restraint and deaths in Residential Aged Care Facilities (RACFs), which are referred to overseas as nursing homes, or Long Term Care (LTC) facilities.

This was happening long before the COVID-19 pandemic.

It is also relevant to people with dementia and their families and care partners living in the community, as there is lack of real support for them. All too often, ‘we’ are left to our own devices to find appropriate care, disability support and relevant and useful resources, especially age appropiate services or RACF options if we have younger onset dementia.

It is like being stranded at sea without a paddle, and I was stranded at sea 12 years ago when first diagnosed.

Disturbingly, people with dementia tell me their experience today, is no different to what mine was 12 years ago.

How is that people with dementia are still reporing they are still ONLY being advised to go home and prepare to die?

This continued Prescription of Disengagement® rather than proactive support to live, is not only harmful, it highlights that we are still being left behind in terms of equal access to health care, including rehabilitation and beign denied many of our most basic human rights are being breached.

This is because people with dementia are:

  • still being physically restrained
  • still being chemically restrained
  • still being confined (as if they are criminals)
  • still being segregated (often referred to as secure dementia or memory support units, to soften the blow)
  • still being neglected
  • still being abused
  • still at a loss to find services and support when diagnosed
  • still not receiving rehabilitation
  • still do not have equal access to universal health coverage

This list is merely the tip of the iceberg, and to me, makes it seem imperative that now is the time to work together to create change.

Searching for my paddle…

4 thoughts on “Rethinking Dementia, 2020

  1. Kate – very good questions. I ask them frequently. This is a life long endeavour. Your unremitting advocacy has accelerated change in many ways. We now just need to confront the phenomenal vested interests that are so resistant to change – many of which are wedded to biomedical models alone.


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