In response to new data showing that up to 85% of the 55 million people with dementia worldwide may not receive post-diagnosis care, dementia experts are calling for post-dementia diagnosis; care, treatment and support are recognized as a human right.
The results were published today by Alzheimer’s Disease International (ADI) in the report World Alzheimer’s Report 2022 – Life after diagnosis: navigating treatment, care and supportwhich was co-authored by McGill University.
The report highlights the urgent need for significant improvements in essential treatment, care and post-diagnosis support services for people with dementia across the world and robust plans to support the projected 139 million people by 2050.
According to Australia Dementia Report 2021Dementia is now the third leading cause of morbidity, with 472,000 people with dementia and between 134,900 and 337,200 Australians providing regular unpaid care for someone with dementia.
Dementia care, treatment and post-diagnosis support refers to multiple interventions that can improve the quality of life of people with dementia, including pharmacological and non-pharmacological treatments, caregiving, access health care, support for activities of daily living, home adaptations, inclusion and respite.
“We don’t ask ourselves if people with cancer need treatment, so why is it that when people are diagnosed with dementia they are often not offered treatment or care? Many times they are simply told to put their end-of-life affairs in order,” explains Paola Barbarino, CEO of ADI.
“Associated with improved rates of diagnosis, post-diagnosis dementia care must be recognized as a human right.
“While dementia does not yet have a disease-modifying ‘cure’, there is clear evidence that demonstrates that appropriate treatment, care and post-diagnosis support significantly improve the quality of life of people with dementia. this disease, allowing many to retain their independence for longer,” Ms Barbarino added.
Inside Aging spoke to 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 service phone numbers for help, and when I called one I was told that if I could call the number, they couldn’t help me.
“Health care sees everything as a pathway to care for the elderly,” Frost said.
Mr. Frost continues to live at home where he receives support from the NDIS for things like lawn mowing, speech therapy and occupational therapy, which he sees as a unique approach. He would like dementia to be classed as a disability and when local councils plan for disabled people on their streets and such: – they also look after people like him.
Among the health professionals interviewed in the World report on Alzheimer’s disease 2022,
- 37% said they felt stressed or pressured often or all the time, with a quarter of these professionals saying it had impacted their ability to do their job.
- 59% said they did not have enough time to care for someone with dementia.
Ms Barbarino says she is sensitive to the pressure healthcare professionals are under and that governments need to invest in supporting them because the world cannot afford to drop post-diagnosis dementia treatment.
“It is up to governments to strengthen their health systems so that it is possible for health professionals to provide the quality care that people with dementia desperately need.
“But as things stand, the model of care in which a primary care physician hands over long-term post-diagnostic support to other specialists is untenable in large part because of the shortage of those specialists and the growing number of people with dementia Every three seconds, someone develops dementia.
“Life doesn’t end with a diagnosis for people with dementia. It is an ever-changing disease that can last for many years,” Ms Barbarino added.
The United Nations already recognizes dementia as a disability and as part of ADI’s call for post-diagnosis care to be recognized as a human right, ADI is urging governments around the world to integrate post-diagnosis care -diagnosis in their national dementia planning.
“Around 139 million people are projected to have dementia by 2050. For many of these people, the responsibility for post-diagnosis care will fall to their family caregivers, and it cannot depend on them alone,” says Ms Barbarino .
The ADI recommends that, as a first step, governments commit to identifying a trained “navigator” to act as a liaison for one or more people newly diagnosed with dementia, to allow them to connect and engage with the vital supports and services they need. .