Dementia experts from around the globe are calling for dementia care after diagnosis to be recognised as a human right.
The call from world-leading experts - including UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA) Co-Directors Scientia Professor Henry Brodaty AO and Scientia Professor Perminder Sachdev AM – comes in response to new data showing, appallingly, that up to 85 percent of the over 55 million people living with dementia may not receive post-diagnosis care, treatment or support.
Alzheimer’s Disease International (ADI), the global federation of 105 Alzheimer and dementia associations co-founded by Professor Henry Brodaty, is today releasing the World Alzheimer’s Report 2022 – Life after diagnosis: Navigating treatment, care and support.
Professor Brodaty says the Report - of which he is a contributing author - focuses on the urgent need for significant improvements to essential post-diagnosis treatment, care and support services for the over 55 million people living with dementia across the globe.
“There is a lot of attention directed at cure, as well as prevention,” he says.
“It is critical to keep care in mind. The time after diagnosis is particularly difficult for the person living with dementia – and their family.
“This report highlights the importance of post-diagnostic care and makes a recommendation on robust plans to support the forecast 139 million people living with dementia by 2050.
"Along with improving diagnosis rates, post-diagnosis dementia care must be recognised as a human right."
Professor Henry Brodaty
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, rehabilitation, brain training, cognitive stimulation therapy, lifestyle interventions especially physical exercise, caregiver support, access to healthcare, support for daily life activities, home adaptations, social inclusion and respite.
“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 re-ablement framework.
“This requires planning in partnership with the person living with dementia and their care partners, access to multidisciplinary support, information and positive attitudes from health professionals,” says Professor Brodaty.
“No one questions 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.
“While most dementias don’t yet have a disease-modifying ‘cure’, there is evidence 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.
Professor Sachdev emphasised the need for attention to the entire care continuum, from the time of diagnosis to end of life.
"Several good models of care are available. What we need is their proper implementation, and adaption to low resource settings when necessary."
Professor Perminder Sachdev
“The role of governments in bringing this about is paramount,” he added.
Spokesman for The Dementia Momentum initiative led by CHeBA, Dr Richard Grellman AM, whose wife Suellen has advanced young onset Alzheimer’s disease, says the global pandemic had a significant impact on post-diagnosis care in Australia.
“COVID-19 has placed unprecedented pressure on dementia care systems worldwide,” says Dr Grellman.
“This has resulted in reduced support for people living with dementia.
“I would like to see a coordinated approach for improvement across the sector, as well as consistency in service provision nationally,” says Grellman.
Barbarino says that while she’s sympathetic to the pressure that healthcare professionals are under, 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 in accord with ADI’s and CHeBA’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.
CHeBA recommends that a first step that Australian governments can take should be committing to identifying a trained ‘navigator’ or ‘key worker’ to act as liaison and support for newly diagnosed persons with dementia, to enable them to connect and engage with vital supports and services.
“It greatly improves the quality of life for a person with dementia if they have clear access to health resources, care, information, advice, support, and importantly life adaptations and adjustments,” says Barbarino. “Ensuring these navigators can act as a single point-of-contact for people living with dementia could be the key to helping navigate this incredibly complex journey.”