Dementia and discrimination survey results

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Download - dementia and discrimination survey results

In 2019 more than 5,000 people from across Australia completed a survey to help us better understand how discrimination for people living with dementia occurs and what it would take to end discrimination.

Below are the key findings from that survey. 

Discrimination is real

  • 63% of people living with dementia who responded to the survey believe discrimination against people living with dementia is common or very common 
  • 73% of family, friends or carers of people living with dementia who responded to the survey believe discrimination against people living with dementia is common or very common 
  • More than 90% of professionals, volunteers and people not impacted by dementia who responded to the survey believe people living with dementia were likely to be treated differently once they are diagnosed

I feel like no one calls me anymore

  • 65% of people living with dementia who responded to the survey say people they know have avoided or excluded them 
  • 74% of people living with dementia who responded to the survey say people haven’t kept in touch like they used to 
  • 94% of family members, friends or carers who responded to the survey say people haven’t kept in touch with a relative who lives with dementia as they used to

I’m not invited any more

  • 71% of family, friends and carers who responded to the survey say they haven’t been included in family activities 
  • 80% of family, friends and carers who responded to the survey say they haven’t been invited to social functions
  • 86% of family members, friends and carers who responded to the survey felt the discrimination came from friends or other people they know socially 

I don’t feel welcome any more

  • 80% of family members, friends or carers who responded to the survey say that people have gone out of their way to avoid their friend or relative who lives with dementia when they are out and about 
  • 81% of family, friends and carers who responded to the survey felt that people in shops, cafes and restaurants treat people with dementia differently 
  • 90% of family members, friends or carers who responded to the survey say that their friend or relative who lives with dementia has been treated with less respect than other people 

Your words affect me

  • 73% of family members, friends or carers who responded to the survey say people make jokes at the expense of their friend or relative who lives with dementia 
  • 96% of family members, friends or carers who responded to the survey say people act as if they don’t know what to say to their friend or relative who lives with dementia 

Here are some quotes from the people who responded to the survey:

“Not listening to them. Assuming that I know what would work best for them in their situation.” - Family, friend, carer

“Talked to the husband instead of my client about choices for menu and shopping.” - Professional/Volunteer

“Getting frustrated I think because unconsciously expecting the person living with dementia being able to act and react how they always have.” - Family, friend, carer

“In a shopping or commercial situation people who are not as quick thinking as they once were are prone to be taken advantage of and on occasion, I have stepped in to address this behaviour.” - Person who is not directly impacted by dementia

Download the dementia and discrimination survey results here.

Dementia. A little support makes a lot of difference.

Dementia Australia offers simple and effective ways to support people living with dementia. 

Dementia Australia provides life-changing and essential support services for people living with dementia, their families and carers, as well as health and aged care professionals.

To find the most appropriate support for your situation, please call the National Dementia Helpline on 1800 100 500. 

 

Citation

Dementia Australia. Dementia Action Week Discrimination Survey 2019, 5,767 valid responses collected from people living with dementia, families, carers, volunteers, health and aged care professionals, and people not directly impacted by dementia.