In a sweeping new report, Alzheimer’s and Dementia experts are urgently calling for better treatment for patients and better education for health-care professionals, revealing that the majority of dementia patients receive little to no post-diagnosis care.
Alzheimer’s Disease International (ADI) stated in a press release for the annual World Alzheimer Report that up to 85 per cent of dementia patients worldwide may not receive care for their dementia following diagnosis.
“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?” Paola Barbarino, CEO of ADI, said in the release.
“Coupled with improving diagnosis rates, post-diagnosis dementia care must be recognised as a human right.”
The 416-page report compiles numerous essays by experts, carers and patients, all shedding light on the various aspects of the condition, from early warning signs to diagnosis to treatment and living to the fullest with dementia.
Chapters include discussions on risk reduction, dementia in the LGBTQ2S+ community, examinations of specific dementia care models from Brazil to Canada, tackling the dementia care needs of a person with Down syndrome, and how to prevent falls in those who have a rare form of dementia first identified in Toronto.
“It’s a wealth of information that you can dip into that is available for free online,” Serge Gauthier, co-lead author of the report, told CTVNews.ca in a phone interview. “This will be the reference for the next five years worldwide.”
But the big takeaway this year for the World Alzheimer’s Report 2022 is on the need for post-diagnosis care to improve significantly.
About 55 million people around the globe, and more than 500,000 in Canada alone, are living with dementia, a condition that usually affects older adults and varies in severity. Alzheimer’s disease is the most common type of dementia, and one of the most serious.
Gauthier, a professor of neurology and psychiatry at McGill University and director of the Alzheimer Disease and Related Disorders Research Unit in the McGill Center for Studies in Aging, described dementia as “a combination of decline in function in the cognitive abilities, usually memory.
“But it could be finding difficulty with orientation, directions when you drive and eventually within your house, it affects your daily life, you cannot live alone safely,” he said.
Treatment for those diagnosed with dementia or Alzheimer’s disease can range depending on how severe their dementia is and the cause behind it, but encompasses a range of interventions to improve the quality of life for patients. This can mean home carers, access to health care, adaptations to a person’s home to allow them to continue living there as long as possible, therapy, support for daily activities and pharmacological treatments.
But many are not receiving this care, the report found.
“When people get diagnosed with dementia, most of them are not told what to do next other than ‘get your affairs in orders, and good luck,’” Gauthier said.
He gave the example of a cancer patient who would be set up with a nurse they could call for aid. This situation isn’t a given for dementia patients after a diagnosis.
“We need to take care of people with dementia, even if there’s no cure, because there’s a lot of good treatment and management, then people can have a good life for quite a few years after the diagnosis.”
One of the essays in the report is penned by Roger Marple, a Canadian living with dementia, who said in the release that it’s damaging to view a dementia diagnosis as the end of the road.
“After my diagnosis, I heard things like ‘Why should we do anything about dementia care? They (people with dementia) are just going to die anyway’,” he said. “These sorts of comments are incredibly demotivating.”
Dementia is not just "getting old," experts stress.
While some decline in memory and physical ability may be expected with aging, the affects of dementia go far beyond this, experts say.
But many health-care providers are still not aware of this, with a survey from the 2019 ADI report showing that out of 70,000 respondents across 155 countries, 62 per cent believed that dementia is a normal part of aging.
This belief is part of the broader issue with care access, “fuelling the lack of support offered to people living with dementia,” Barbarino said.
“Another part is that health-care systems around the world are not prepared for the growing public health crisis that dementia presents, and governments must act.”
Along with expert and patient essays, the report includes data from three surveys that aimed to create a snapshot of post-diagnosis dementia care, or lack thereof.
The surveys were carried out between May and June 2022, and included 365 people with dementia from 41 countries, as well as 1,669 informal carers and 893 professional carers spanning 68 countries and 69 countries respectively.
Nearly 60 per cent of health-care professionals surveyed said they feel they do not have adequate time to provide care for a person living with dementia.
More than a third of them stated that they feel stressed or under pressure at work, with a further quarter saying this impacts their abilities.
The pandemic’s impact on the health-care system — ranging from the COVID-19 death toll to the burnout and emotional stress that has driven many other health-care workers from the profession — has only made an existing problem worse, experts say.
Even before COVID-19 arrived, there weren’t enough clinicians that understood dementia treatment, showing the need for education.
“Globally, clinicians are both under-educated on dementia, and under-resourced to provide adequate post-diagnosis care for people living with dementia,” Barbarino said. “It’s up to governments to shore up their health-care systems so that it’s possible for health-care professionals to provide quality care that people living with dementia desperately need.”
Gauthier stressed that education for health-care professionals is one of the most important aspects in increasing good care for dementia patients.
Instead of referring patients to the dwindling number of specialists, family doctors would be better positioned to continue treating their patients if they developed dementia.
“One of the conclusions of the report is that education, if it’s well done, starting at the university or college, or whatever professional school these carers are trained in, if it was really done with input from persons who have dementia and families, carers who live through it, that would change the attitude, and maybe motivate people,” he said.
“So education is the big message we’re putting forward and the conclusion of this year’s report.”
McGill is currently starting a program that will require all the health professional schools to include “at least one exposure during their basic schooling to a person, a carer, someone who was taking care of someone with dementia, possibly even someone with mild dementia, (who) would come forward and talk about how they feel.”
Apart from better education, one of the main suggestions of the report is for governments to commit to funding to ensure a new role of health-care worker is possible: a "navigator," who could act as a liaison for a person who was just diagnosed with dementia, connecting them to resources and support.
“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,” Barbarino said. “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.”
Gauthier pointed out that more awareness of dementia in the general population can also make a huge impact in the quality of life for those experiencing the earlier stages of dementia.
“Most people in our culture in Canada, once you go into severe stages of dementia, where you cannot live alone, you end up in nursing home settings,” he said. “But the years before that, you’re home and you can be living alone maybe two to four years if you have just a visit once a day by your neighbor or relatives or staff from the community network, just to make sure you’re safe and take your pills and oven turned off and you have enough food in the fridge.”
With this kind of community support, seniors with mild dementia can maintain that independence for longer than they otherwise might not have been able to, he said. And when medical care is stretched so thin for those with dementia, it can be even more important.
Medical advancements in dementia care are on the horizon, he added, with some drugs likely to reach approval in Canada in around three years, and a blood test to quickly identify early onset dementia in the works.
But the clinician knowledge needs to be there to meet the moment, which is why Gauthier stresses education.
“Every professional school, whether it’s nursing, social work, or … pharmacists should have within its core program, something about dementia, at least enough about how to recognize it and the practice to know there’s someone who needs an assessment and then how to care for someone who’s known to have dementia.”
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