Discrimination is inevitable for people living with dementia 

Recent research conducted by Dementia Australia has identified that discrimination against people living with dementia is real and so entrenched that even those at risk expect to experience some form of discrimination.

The Dementia Action Week Report Discrimination and dementia - enough is enough, released today, has found more than two-thirds of people living with dementia anticipated they might experience discrimination. 

Maree McCabe AM, CEO Dementia Australia, said the research shows that people living with dementia and carers experience discrimination that can lead to social isolation, loneliness and poor mental health. And COVID-19 has intensified these experiences. 

“We need to change this experience for people impacted by dementia. People living with dementia, their families and carers tell us enough is enough,” Ms McCabe said.

“Now more than ever we need to shift our thinking around dementia to stop adding discrimination to the symptoms that people with dementia experience. 

“The good news is a little support does make a big difference and there are small actions we can all take to make a change for the better.”

Bobby Redman lives with dementia and has shared her story as part of this year’s Dementia Action Week campaign.

“Although discrimination is basically about ignorance, it doesn't take away the sting,” Ms Redman said.

“Just because I have dementia it doesn't mean I am stupid.  

“I have not lost my knowledge and life experience; it is just that I sometimes have difficulty in accessing the details."

Key findings from the research about dementia, discrimination, and the impacts of COVID-19 include:

• 75% of respondents who identified themselves as at risk of dementia indicated that they expect they will be treated differently if they are diagnosed. 
• 91% of people who have a loved one with dementia indicated other people don’t keep in touch with that person as they used to. 
• 87% of people living with dementia surveyed felt people patronise them and treat them as if they are not smart. 
• 65% of people surveyed who live with dementia and 58% of those who feel at risk of dementia believe discrimination towards people with dementia is common or very common.  
• More than 90% of professionals, volunteers and people not impacted by dementia agree that people living with dementia are likely to be treated differently once they are diagnosed.
• 43% of people living with dementia and 38% of family carers had postponed health or medical visits due to COVID-19 restrictions.
• 34% of family carers and 30% of people living with dementia indicated their physical wellbeing had declined due to COVID-19 restrictions.

“Research demonstrates that this discriminatory behaviour impacts all aspects of a person’s life; from the way they engage socially to the types of services they access and receive and the way their human rights are interpreted,” Ms McCabe said.

"This disempowerment leads to individuals being less likely to identify or fight for their fundamental human rights and sadly, it demonstrates that we have a long way to go to truly tackle discrimination against people impacted by dementia.

“This year’s Dementia Action Week 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.”

As part of Dementia Action Week, Dementia Australia is sharing simple and practical tips to: 

• Give a little support to a person living with dementia 
• Give a little support to a carer, friend or family member of a person living with dementia 
• Support health care professionals to make their practice more dementia-friendly.

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. 

Dementia Action Week 2021 is from 20-26 September. Tuesday 21 September is World Alzheimer’s Day.

The theme for Dementia Action Week was developed in consultation with Dementia Advocates, who have a lived experience of dementia. The campaign, which features people living with dementia and carers, will appear across television, radio, print, digital and social media.

More than 900 people responded to the survey, including people living with dementia, family carers, family/friends of a person with dementia, healthcare professionals and those not impacted by dementia. 

The full report can be downloaded here.

Dementia Australia is the source of trusted information, education and services for the estimated half a million Australians living with dementia, and the almost 1.6 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.

For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available and the Helpline is open 8am to 8pm Monday to Friday excluding public holidays. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au 

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Media contacts: Christine Bolt, Christine.Bolt@dementia.org.au, 0400 004 553 | Gabrielle Prabhu, gabrielle.prabhu@dementia.org.au, 0447 253 583 

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.