Experts call for better dementia care in a new report, saying most patients don’t receive treatment after diagnosis

In a comprehensive new report, Alzheimer’s and dementia experts urge better patient care and better training of healthcare workers, showing that the majority of dementia patients receive little to no care after diagnosis.

Alzheimer’s Disease International (ADI) said in a press release for the annual World Alzheimer’s Report that up to 85 percent of dementia patients worldwide may not receive treatment for their dementia after diagnosis.

“We do not question whether people with cancer need treatment. So why is it that people who are diagnosed with dementia are often not offered treatment or care?” Paola Barbarino, CEO of ADI, said in the press release.

“In conjunction with improving diagnosis rates, post-diagnosis care for dementia must be recognized as a human right.”

The 416-page report includes numerous essays by experts, carers and patients, all of which shed light on different aspects of the condition, from early warning signs to diagnosis, treatment and living to the fullest with dementia.

But the big takeaway for this year’s World Alzheimer’s Report 2022 is the need for significantly improved post-diagnosis care.

About 55 million people around the world and more than 500,000 in Canada alone are living with dementia, a condition that usually affects older adults and occurs in varying degrees of severity. Alzheimer’s disease is the most common form of dementia and one of the most serious.

Serge Gauthier, a McGill University professor and co-leader of the report, described dementia as “a combination of loss of cognitive function, usually memory.

“But there might be difficulties with orientation, directions when driving and eventually in your house, it’s affecting your daily life, you can’t safely live alone,” he told CTVNews.ca in a phone interview.

Treatment for patients diagnosed with dementia or Alzheimer’s disease may vary depending on the severity of their dementia and the underlying cause, but includes a range of interventions to improve patients’ quality of life. This can include home care, access to medical care, adjustments to a person’s home to enable them to live there for as long as possible, therapy, assistance with daily activities, and pharmacological treatments.

But many don’t get that care, the report says.

“When people are diagnosed with dementia, most of them aren’t told what to do next other than ‘Get in order and good luck,'” Gauthier said.

“We have to take care of people with dementia even if there is no cure, because there is a lot of good treatment and management, then people can have a good life for a few years after diagnosis.”

One of the essays in the report is by Roger Marple, a Canadian living with dementia, who said in the press release that it is harmful to view a diagnosis of dementia as the end of the road.

“After my diagnosis, I heard things like, ‘Why should we do anything to treat dementia? They (people with dementia) are going to die anyway,” he said. “Comments like this are incredibly demotivating.”

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

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

However, many healthcare providers are still unaware of this. A poll from the 2019 ADI report shows that out of 70,000 respondents in 155 countries, 62 percent believed dementia is a normal part of aging.

That belief is part of the broader problem with access to care “that amplifies the lack of support for people with dementia,” Barbarino said.

“Another aspect is that healthcare systems around the world are unprepared for the growing public health crisis that dementia brings, and governments need to act.”

In addition to essays by experts and patients, the report includes data from three surveys aimed at providing a snapshot of dementia care after diagnosis or lack thereof.

The surveys were conducted 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 from 68 and 69 countries, respectively.

Almost 60 percent of healthcare professionals surveyed said they felt they did not have enough time to care for a person with dementia.

More than a third of them say they feel stressed or under pressure at work, and another quarter say it affects their skills.

The impact of the pandemic on the healthcare system — from the death toll from COVID-19 to the burnout and emotional distress that has pushed many other healthcare workers out of the job — has only made an existing problem worse, experts say.

Even before the arrival of COVID-19, there were not enough doctors knowledgeable about treating dementia, showing the need for education.

“Around the world, dementia clinicians are undertrained and resourced to provide appropriate post-diagnosis care to people with dementia,” Barbarino said. “It is up to governments to strengthen their health systems to enable health workers to provide the quality care that people with dementia desperately need.”

Better education aside, one of the report’s main suggestions is that governments commit to funding to ensure a new role for health workers is possible: a ‘navigator’ who could act as a liaison for a person who has been fair with dementia diagnosed and given resources and support.

“Having clear access to health resources, care, information, counseling, support, and most importantly, adjustments and life adjustments greatly improves the quality of life of a person with dementia,” Barbarino said. “Ensuring these navigators can act as a one-stop shop for people living with dementia could be key to navigating this incredibly complex journey.”