Most patients with dementia do not receive treatment after diagnosis:

In a new report, experts in Alzheimer’s disease and dementia are urgently calling for better treatment for patients and better education for healthcare professionals, revealing that the majority of patients Dementia receives little or no care after diagnosis.

Alzheimer’s Disease International (ADI) said in a press release for its annual World Alzheimer’s Report that up to 85% of dementia patients worldwide may not receive care for dementia. their dementia after being diagnosed.

“We don’t question whether people with cancer need treatment, so why is it that when people receive a diagnosis of dementia, they often don’t get treatment or care?” Paola Barbarino, CEO of ADI, said in the release.

“Along with improving diagnosis rates, post-diagnostic dementia care must be recognized as a human right.”

The 416-page report compiles many essays by experts, caregivers and patients, all of which shed light on various aspects of the condition, from early warning signs to diagnosis to treatment. treat and live life to the fullest with dementia.

But the big goal this year for the World Alzheimer’s Disease Report 2022 is that the need for post-diagnostic care needs to improve dramatically.

About 55 million people globally, and more than 500,000 in Canada alone, are living with dementia, a condition that often affects older adults and varies in severity. Alzheimer’s disease is the most common type of dementia and one of the most serious.

Serge Gauthier, a professor at McGill University and co-leader of the report, described dementia as “a combination of functional decline in cognitive abilities, usually memory.

He told in a phone interview: “But it can have trouble navigating, giving directions while you’re driving and eventually indoors, affecting your day-to-day life. , you cannot safely live alone.”

Treatment for people diagnosed with dementia or Alzheimer’s disease may depend on the severity of dementia and the cause behind it, but includes a range of interventions. to improve the quality of life for patients. This means caregivers in the home, accessing health care, adapting to a person’s home to allow them to continue living there for as long as possible, providing therapy, assisting with daily activities, etc. days and drug treatment.

But many do not receive this care, the report found.

“When people are diagnosed with dementia, most of them are not told what to do next other than ‘do your work on order, and good luck,’” says Gauthier.

“We need to take care of people with dementia, even if there is no cure, because with good treatment and management, people can have a good life for several years after being diagnosed. guess.”

One of the essays in the report was written by Roger Marple, a Canadian living with dementia, who said in the release that it would be disastrous to see a diagnosis of dementia as a way to end.

“After my diagnosis, I heard things like ‘Why should we do anything about dementia care? They (people with dementia) are going to die anyway,’ he said. “These kinds of comments are incredibly stimulating.”

Experts emphasize that dementia is not just “getting old”.

While some decline in memory and physical ability can be expected with aging, the effects of dementia go beyond this, experts say.

But many healthcare providers are still not aware of this, with a survey from the 2019 ADI report showing that of 70,000 respondents across 155 countries, 62% believe dementia Wisdom is a normal part of the aging process.

This belief is part of a broader problem with access to care, which “drives the lack of support being offered to people living with dementia,” says Barbarino.

“Another part is that healthcare systems worldwide are unprepared for the growing public health crisis that dementia causes, and governments must act.”

Along with expert and patient essays, the report includes data from three surveys that aim to create a snapshot of dementia care after diagnosis, or the lack thereof.

The surveys, conducted between May and June 2022, included 365 people with dementia from 41 countries, as well as 1,669 informal carers and 893 professional carers respectively across 68 countries and 69 countries.

Nearly 60% of healthcare professionals surveyed said they felt there was not enough time to care for someone with dementia.

More than a third of them say they feel stressed or pressured at work, with a further quarter saying this affects their ability.

The pandemic’s impact on the healthcare system – from COVID-19 deaths to burnout and emotional stress that has driven many other healthcare workers out of the profession – has only made an existing problem getting worse, experts say.

Even before COVID-19 arrived, not enough clinicians understood dementia treatment, indicating a need for education.

“Globally, clinicians lack dementia training and have limited resources to provide adequate post-diagnostic care to people with dementia,” says Barbarono. . “Governments depend on strengthening their healthcare systems so that healthcare professionals can provide the quality care that people living with dementia desperately need.”

In addition to better education, one of the report’s key recommendations is for governments to commit to funding to ensure the new role of healthcare workers is realizable: a “navigator” who can act as a liaison for someone just diagnosed with dementia, connecting them with resources and support.

“It greatly improves the quality of life for a person with dementia if they have clear access to health, care, information, advice, support and important resources,” says Barbarino. is to adapt and adjust to life. “Ensuring these navigators can act as a single point of contact for people with dementia could be key in navigating this incredibly complex journey.”

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