Sep 21, 2022

Experts call for better support for people living with dementia

21_9_22 dementia reports

A new Dementia Australia report, released today, has shown discrimination toward people living with dementia can lead to delays in diagnosis and increased social isolation.

The report, Dismantling dementia discrimination: It starts before the diagnosis, showed the impact of discrimination and how early diagnosis, community awareness and support are critical to ensure people with dementia are supported from the time they are diagnosed until end of life. 

A second report was also released for World Alzheimer’s Day in which experts called for post-diagnosis dementia care to be considered a human right.

This was prompted by new data showing that up to 85% of people living with dementia may not receive post-diagnosis care, treatment or support.

Dementia Australia Chief Executive Officer (CEO) Maree McCabe said delays in diagnosis and accessing services can have serious consequences for the physical, cognitive and psychosocial health of people living with dementia.

“An early diagnosis means people with dementia can access vital support and resources sooner, to help support a better quality of life and to plan for the future,” she said.

The Dementia Australia report also explored the idea that it is not always evident that someone has dementia.

“Dementia is largely an invisible disability and what people can’t see they don’t understand and what they don’t understand they tend to avoid,” Ms McCabe said.

“A little support for people living with dementia really can make a big difference and communities can play a big role in learning more about how they can support people living with dementia.

“Dismantling dementia-related stigma and discrimination requires a collective effort.”

The report offered practical tips for aged care workers, like considering how well a space can be navigated and introducing yourself to the person living with dementia each time you meet, even if you have known them for a long time.

“[This report] also includes tips for simple improvements to physical environments, like making sure any important signage is written in large, clear font with clear backgrounds, having environments that are less noisy and are well lit, as well as tips for how to communicate more effectively with a person with dementia,” Ms McCabe suggested.

Studies have shown that stigma and discrimination associated with a dementia diagnosis can discourage people from seeking health care and decreases their likelihood of engaging socially with family, friends and the broader community. 

This discrimination report follows a 2021 Dementia Australia survey, which found 65% of respondents who lived with dementia believed discrimination towards people with dementia is common or very common, and 87% felt people patronised them and treated them as if they were not smart.

Dementia care should be a human right

University of New South Wales (NSW) Sydney’s Centre for Healthy Brain Ageing (CHeBA) teamed up with Alzheimer’s Disease International (ADI), the global federation of 105 Alzheimer and dementia associations, and released a report highlighting the urgent need for significant improvements to essential post-diagnosis treatment, care and support services.

Contributing Author, Professor Henry Brodaty, said there is a focus on a cure and preventing dementia, but it was “critical” to keep care in mind, particularly the time after diagnosis. 

“Along with improving diagnosis rates, post-diagnosis dementia care must be recognised as a human right,” Professor Brodaty said.

“In the same way that people who have had a stroke or heart surgery are offered rehabilitation and continued support, people diagnosed with dementia deserve the opportunity to live positively, build on their assets and compensate for their disabilities using a reablement framework.”

Post-diagnosis dementia care, treatment and support refers to interventions that can improve the quality of life for those with dementia.

These include both pharmacological and non-pharmacological treatments, rehabilitation, cognitive stimulation therapy, access to healthcare and respite.

CHeBA recommended the Australian Government to identify a trained ‘navigator’ or ‘key worker’ to act as a liaison and support newly diagnosed persons with dementia so they have clear access to health resources, care, information, advice, and life adaptations.

Currently, more than 487,500 Australians are living with dementia and it is forecast 1.1million people will be living with dementia in Australia by 2058. 

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