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Discrimination and dementia – enough is enough: opinion

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 this week, has found more than two-thirds of people living with dementia anticipated they might experience discrimination. 

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. 

Examples of the discrimination experienced by people living with dementia continues to include doctors and other health professionals. They often communicate only with the person’s carer, making an assumption that the person with the diagnosis no longer has the capacity to contribute to a conversation and/or make decisions for themselves and the widespread assumption that, because people living with dementia are experiencing a progressive decline, they are not offered the same access as everyone else to wellness, enablement and reablement services.

Systemic and societal discrimination against people living with dementia, their families and carers is still so strong that many individuals report this feeling of anticipatory discrimination – that is, they expect to be discriminated against because they have dementia or care for someone living with dementia. 

The impact of anticipatory discrimination can lead to people living with dementia, families and carers accepting discriminatory behaviour because they do not feel empowered to speak up when their rights are compromised. They also experience poorer care and fewer treatment options than those with other chronic diseases and do not feel able to challenge the system.

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.

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.

We need to change this experience for people impacted by dementia. People living with dementia, their families and carers tell us ‘enough is enough’.

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

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 importantly help eliminate discrimination.

The campaign features people living with dementia and carers, and is appearing across television, radio, print, digital and social media. It demonstrates that many people living with dementia can continue to live well for many years after their diagnosis with a little support, knowledge and understanding from those around them.

As part of Dementia Action Week, Dementia Australia is sharing practical tips to give a little support to a person living with dementia, carer, friend or family member of a person living with dementia and support health care professionals to make their practice even more dementia-friendly.

It can be as simple as giving someone the space to do things for themselves, listening to the person, not trying to solve all their problems, giving the person the time to find the right words or using technology to support someone in their day-to-day activities.

The good news is a little support does make a big difference and there are small actions we can take to make a big difference. Head to discrimination.dementia.org.au to find out more.  

Professor Graeme Samuel AC, is the Chair of Dementia Australia.

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