Experts call for better support for people with dementia

A New Dementia Australia Report, Released Todayhas shown that discrimination against people with dementia can lead to delays in diagnosis and increased social isolation.

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

One second report was also released ahead of 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 with dementia may not receive care, treatment or support after diagnosis.

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

“Early diagnosis means people with dementia have faster access to essential support and resources to help support a better quality of life and to plan for the future,” she said.

The Dementia Australia report also addressed 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 usually avoid,” said Ms. McCabe.

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

“Dismantling stigma and discrimination caused by dementia requires a collective effort.”

The report offered practical tips for aged care workers, such as figuring out how well a space can be navigated and introducing yourself to the person with dementia every time you meet, even if you’ve known them for a long time.

“[This report] also includes tips for simple improvements to physical environments, such as ensuring important signage is written in a large, clear font with clear backgrounds, having environments that are less noisy and well-lit, as well as tips on how to communicate more effectively with a person with dementia ‘ suggested Mrs McCabe.

Studies have shown that stigma and discrimination associated with a diagnosis of dementia can discourage people from seeking health care and reduce their chances of socializing with family, friends and the wider community.

This discrimination report follows a Dementia Australia Survey 2021which found that 65% of respondents living with dementia believed that discrimination against people with dementia is common or very common, and 87% felt that people patronized and treated them as if they were not smart.

University of New South Wales (NSW) Sydney’s Center for Healthy Brain Aging (CHeBA) partnered with Alzheimer’s Disease International (ADI), the global federation of 105 Alzheimer’s and Dementia Societies, to release a report highlighting the urgent need for significant improvements to essential post-diagnosis treatment, care and support services.

The contributing author, Professor Henry Brodaty, said there is a focus on healing and preventing dementia, but it was “critical” to keep care in mind, especially the time after diagnosis.

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

“Just as people who have had a stroke or heart surgery receive rehabilitation and ongoing support, people diagnosed with dementia deserve the opportunity to live positively, build on their assets and compensate for their disabilities using a recovery framework.”

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

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

CHeBA advised the Australian Government to appoint a trained ‘navigator’ or ‘key worker’ to act as a liaison and support newly diagnosed individuals with dementia, ensuring they have clear access to health resources, care, information, advice and life adjustments .

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

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