Calls for dementia post-diagnosis care to be recognised as a human right

Paola Barbarino, CEO, Alzheimer’s Disease International (ADI)

In response to new data showing that up to 85 per cent of the world’s 55 million people living with dementia may not be receiving post-diagnosis care, dementia experts are calling for dementia post-diagnosis, care, treatment and support to be recognised as a human right.

The findings were released today by Alzheimer’s Disease International (ADI) in the report 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 those living with dementia across the globe and robust plans to support the forecasted 139 million people by 2050.

According to the 2021 Dementia in Australia report, Dementia is now the third-leading cause of disease burden, with 472,000 people living with dementia, and between 134,900 and 337,200 Australians providing consistent unpaid care for a person with dementia.

Post-diagnosis dementia care, treatment and support refers to multiple interventions that can improve the quality of life for those 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 life of those living with this disease, allowing many to maintain independence for longer,” added Ms Barbarino.

Inside Ageing spoke with Dennis Frost from Nowra on the NSW south coast, who was diagnosed with dementia 9 years ago at the age of 59.

“When I was diagnosed I was given a list of health department phone numbers for support, and when I actually rang one I was told that if I could ring the number then they couldn’t help me.

According to Mr Frost, “Healthcare sees everything as a pathway to aged care.”

Mr Frost continues to live at home where he receives NDIS support with things like lawnmowing, speech pathology and occupational therapy, which he sees as a one size fits all approach.

I would like to see dementia classified as a disability and when local councils are planning for those with disabilities in their streetscapes and alike – they also cater for me!

Mr Dennis Frost

Of the healthcare professionals surveyed in the World Alzheimer Report 2022,

  • 37 per cent said that they feel stressed or under pressure often or all of the time with a quarter of these professionals reporting this impacted their ability to do their work.
  • 59 per cent said they do not feel they have adequate time to provide care for a person living with dementia. 

Ms 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”

Paola Barbarino, ADI CEO

“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.

“But as it stands, the care model where a primary care doctor hands over long-term post-diagnostic support to other specialists is untenable due largely to the shortage of such specialists and the ever-increasing numbers of people living with dementia. Every three seconds someone develops dementia.

“Life doesn’t stop at a diagnosis for people living with dementia. It’s an ever-evolving condition that can last throughout many years,” Ms Barbarino added.

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

“Approximately 139 million people are expected to have dementia by 2050. For many of those people, the responsibility of post-diagnosis care will fall on their family carers, and it can’t be up to them alone,” says Ms Barbarino.

ADI recommends that as a first step governments can take should be committing to identifying a trained ‘navigator’ to act as a liaison for a newly diagnosed person/s with dementia, to enable them to connect and engage with the vital supports and services they need.



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