“We don’t question whether people with cancer need treatment” – New report finds as many as 85 per cent of people with dementia could be missing out on post-diagnosis care

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  • Currently an estimated 487,000 people are living with dementia in Australia, a number predicted to rise to almost 1.1 million by 2058.
  • Dementia experts call for dementia care after diagnosis to be recognised as a human right
  • Planned post-diagnosis dementia treatment, care and support are vital to improving the quality of life for people with dementia and for those who care for them
  • Alzheimer’s Disease International (ADI) and Dementia Australia urge governments to embed robust post-diagnosis care plans into national dementia planning

LONDON - 21 September 2022: In response to new data showing that up to 85 per cent of the more than 55 million people living with dementia may not receive post-diagnosis care, world-leading dementia experts are calling for dementia post-diagnosis, care, treatment and support to be recognised as a human right.
Alzheimer’s Disease International (ADI), the international federation of 105 Alzheimer and dementia associations around the world, including Dementia Australia, is today releasing the World Alzheimer’s Report 2022 – Life after diagnosis: Navigating treatment, care and support, which was co-authored by McGill University. 

The report focuses on the urgent need for significant improvements to essential post-diagnosis treatment, care and support services for the more than 55 million people living with dementia across the globe and robust plans to support the forecasted 139 million people by 2050. 

Post-diagnosis dementia care, treatment and support refers to multiple interventions that can improve the quality of life for people with dementia, including both pharmacological and non-pharmacological treatments, caregiving, access to healthcare, support for daily life activities, home adaptations, social inclusion and respite. 

“We don’t question whether people with cancer need treatment, so why is it that when people receive a dementia diagnosis, they’re often not offered treatment or care? Repeatedly, they’re just told to get their end-of-life affairs in order,” says Paola Barbarino, ADI CEO. “Coupled with improving diagnosis rates, post-diagnosis dementia care must be recognised as a human right.”

“While dementia doesn’t yet have a disease-modifying ‘cure’, there is clear evidence that demonstrates that appropriate post-diagnosis treatment, care and support significantly improves the quality of lives of those living with this disease, allowing many to maintain independence for longer.”
The pressure on global healthcare systems during the pandemic has further exacerbated the ability for healthcare professionals to provide adequate post-diagnosis treatment, care and support for people living with dementia.

“The right support at the right time can enable people with dementia to maintain their independence and functional capacity for as long as possible,” says Maree McCabe AM, Dementia Australia CEO.

“We must prioritise post-diagnosis dementia treatment so that people living with dementia can access vital support and resources sooner that help them to maximise quality of life and plan for the future.”
Barbarino says that she’s sympathetic to the pressure that healthcare professionals are under, and governments must invest to support them as the world cannot afford to let post-diagnosis dementia treatment fall to the wayside. 

“Globally, clinicians are both under-educated on dementia, and under-resourced to provide adequate post-diagnosis care for people living with dementia,” says Barbarino. 

“It’s up to governments to shore up their healthcare systems so that it’s possible for healthcare professionals to provide quality care that people living with dementia desperately need.”

The United Nations already recognises dementia as a disability and as part of ADI’s and Dementia Australia’s call for post-diagnosis care to be recognised as a human right, they are urging governments across the globe to incorporate post-diagnosis care into their national dementia planning. 

“With an estimated half a million Australians living with dementia and almost 1.6 million people involved in their care, we need to see commitment from all sectors to ensure Australians living with dementia are receiving the post-diagnostic care they deserve,” says Ms McCabe.

“Dementia Australia is here for people of all ages, living with all forms of dementia, including younger onset dementia and mild cognitive impairment (MCI). We can connect people with life-changing information, support and services, including the popular Post Diagnostic Support Program, for people of all ages, living with all forms of dementia or mild cognitive impairment (MCI).

“The Australian National Dementia Helpline operates 24/7 and is free to call on 1800 100 500.”
Please read the World Alzheimer’s Report 2022 report at https://www.alzint.org/resource/world-alzheimer-report-2022/  

ENDS
For story ideas, interview requests and more information, please contact:

Gabrielle Prabhu
Dementia Australia 
T: 0447 253 583 
E: Gabrielle.Prabhu@dementia.org.au

Lewis Arthurton
Alzheimer’s Disease International (ADI)
T: +44 (0)20 7981 0886
E: l.arthurton@alzint.org


About Dementia Australia

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. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au   

About Alzheimer’s Disease International (ADI)

ADI is the international federation of 105 Alzheimer associations and federations around the world, in official relations with the World Health Organization. ADI's vision is prevention, care and inclusion today, and cure tomorrow. ADI believes that the key to winning the fight against dementia lies in a unique combination of global solutions and local knowledge. ADI works locally, by empowering Alzheimer associations to promote and offer care and support for persons with dementia and their care partners, while working globally to focus attention on dementia and campaign for policy change. For more information, please visit www.alzint.org