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For Dementia Action Week (20-26 September) this year we are continuing to lead the discussion about discrimination, which we know has a big impact on people living with dementia, their families and carers.
Often the discriminatory behaviour is unintended and results from a lack of understanding about dementia.
The good news is that a lot can be done to improve the experience for people living with dementia and carers.
This year’s campaign and theme, A little support makes a big difference, is a challenge to all Australians to increase their understanding about dementia and how they can make a difference to the lives of people around them who are impacted – and help to eliminate discrimination.
For Edgard, kindness and love were essential when caring for his mother who lived with dementia.
“My mother had a saying in Spanish, ‘cada persona es un mundo’. The literal translation is ‘every person is a world’,” Edgard said.
“My sister Cecile described our mother’s motto at her funeral in her eulogy. She said, ‘May we live life without judgment by showing compassion and understanding. We never know what is happening in someone’s mind and heart’.”
However, when Edgard’s mother had to move into care his family had a very different experience.
“During our mother’s dementia journey the discrimination was overwhelming, especially during the latter years as the dementia was slowly taking away her capacity to do the simplest tasks that we all take for granted,” Edgard said.
“It appeared that most of the elderly who were living with dementia were not permitted to have a voice and they were expected to behave in a quiet and obedient manner as though they had no feelings or emotions – it was heart breaking.
“The language barrier also made it difficult. As my mother’s dementia progressed her ability to articulate her needs in English became more difficult as Spanish is her native tongue.”
Although living with dementia presented some challenges for their family, Edgard believes that his mother losing her rights was the most difficult.
“The most difficult part of living with dementia was that all her human rights were taken away,” Edgard said.
“We took matters into our own hands.
“We discovered a whole new and wonderful world simply by embracing the world of our beautiful mother and allowing her to complete her life’s journey with dignity and grace through the power of love and kindness.”
Thank you to Dementia Australia Advocate Edgard for sharing his story.
Head to discrimination.dementia.org.au to find out more about how a little support makes a big difference and how you can be part of the change.
We are here to help. If you need information or advice, please call the National Dementia Helpline on 1800 100 500. The Helpline is available from 8am to 8pm, Monday to Friday excluding public holidays.