Keeping the world open for people living with dementia

For people living with dementia, living in isolation can be a reality all day, every day.

COVID-19 has changed everyone’s lives but for most of us, once the crisis has passed, we will be able to reconnect with family and friends and get back to usual routines, writes Maree McCabe.  

Maree McCabe

For people living with dementia, living in isolation can be a reality all day, every day. 

That’s why Dementia Australia is urging Australians to keep the world open for people living with dementia, not just during the COVID-19 pandemic, but every day. 

The experience of living in self-isolation has been challenging and insightful for many Australians and it’s an experience we can all learn from. 

People not impacted by dementia are now experiencing what life can be like being socially isolated.

People living with dementia are often socially isolated all day, every day. That’s not dementia, that’s discrimination.

Maree McCabe

Often, people stop talking to those living with dementia, staying in touch  or inviting them to events.  People living with dementia are often socially isolated all day, every day. That’s not dementia, that’s discrimination. 

As the peak body for people impacted by dementia, we have a national platform to elevate the voices of people living with dementia and we are privileged so many Dementia Advocates have shared their experiences with us to raise awareness of this issue.

Some of the experiences we have heard directly from our Dementia Advocates include:

  • “Our own self-perception becomes damaged and we feel constantly in the wrong.” 
  • “It stops you wanting to engage. It is devaluing.” 
  • “Everyone wants to make decisions for me.”
  • “I stopped going out because people aren’t going to listen anyway or understand what I am trying to say.”
  • “You are constantly second guessing. Is it me? Is it my husband? When you hear about social events, you think I would have liked to go to that.”

Aged care workers are uniquely positioned to be observing new or changed behaviours in their clients and residents. Changes in routine can create uncertainty for people living with dementia which can sometimes leave them feeling distressed, confused and isolated.

We know that where aged care staff know the story of the person in their care, understand their stage and form of dementia and are flexible in their approach, the better the outcomes for all.

With increased demand for remote support during this pandemic, Dementia Australia is committed to supporting aged care workers to build on their skills in providing quality care.

During the pandemic, aged care workers have been instrumental in keeping some of the most vulnerable people in our community safe. To say thank you, the Centre for Dementia Learning at Dementia Australia is offering free, short, online courses to assist frontline aged care staff delivering care to people living with dementia during the COVID-19 pandemic.

The first two courses focus on increasing the participants’ understanding of dementia and providing frameworks to help with problem solving. They are currently free to anyone within the age services industry who signs up to the Dementia Australia mailing list before 30 June 2020.

The Keep the World Open campaign is part of Dementia Australia’s ongoing drive to raise awareness of dementia and tackle discrimination. The campaign will continue in June and July and then be supported by Dementia Action Week in September 2020.

We are all physically isolating in some way, but it does not mean we have to feel socially isolated. By educating ourselves, using innovative strategies and working together we can create positive experiences for people living with dementia, their families and carers.

Find our more about the Keep the World Open campaign here.

Find out more about all the online courses and other education options here.

For further information and support contact the National Dementia Helpline on 1800 100 500.

*Maree McCabe is CEO of Dementia Australia

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