Alzheimer’s: Improved survival highlights need to adapt services

A recent study with a large international sample, including Canada, shows a decreased relative risk of mortality for people with major neurocognitive disorders, such as Alzheimer’s. This can add to the burden on caregivers, highlighting the need to adapt available resources.

The study, published in the scientific journal Nature, analyzed data from 1.2 million people aged 60 and older with major neurocognitive disorders. The results suggest a consistent decrease in the relative risk of mortality among these individuals in the United Kingdom, Canada (Ontario), South Korea, Taiwan, and Hong Kong. No clear trend could be identified in Germany or Finland, and an increasing trend was observed in New Zealand.

In Canada, the median survival time was 4.9 years for those aged 60 to 64 and decreased only gradually with age (2.4 years for those aged 85 and older). These data are consistent with those of the Quebec Ministry of Health, which indicate that the average life expectancy after a diagnosis of Alzheimer’s disease is six years, although it can be as long as 20 years.

The study notes that understanding recent survival trends for people diagnosed with a neurocognitive disorder can help policymakers better plan the supports and services offered to the population.

Sylvie Grenier, Executive Director of the Quebec Federation of Alzheimer Societies, believes that with the aging of the population, it is imperative to diversify and adapt services for caregivers. “I’m talking about evolving services as well. Respite becomes increasingly important throughout the course of the disease. The more the disease takes up space for the person affected, the more the caregiver will need support and respite,” she explains.

Grenier notes that the various Alzheimer societies in Quebec are increasingly overloaded.

“The pressure is very high for respite care, whether it’s in-home respite or residential respite care,” she explains.

The most difficult thing for loved ones isn’t the cognitive symptoms, such as memory loss or language difficulties, says Dr. Félix Pageau, a geriatrician at the CIUSSS de la Capitale-Nationale and the CHU de Québec. “It’s often the psychological symptoms: sadness, depression, hallucinations, aggression, or behavioral symptoms—people go outside, run away in the winter, get lost—that can become a bit more of a burden for the family or any caregiver,” he says.

Dr. Pageau adds that some caregivers are very happy in their role, particularly giving back to a loving parent, spouse, or friend. “It can be very beneficial, but it’s not always, and it can be exhausting if people push themselves to the limit,” the doctor points out.

Earlier Diagnosis and Maintaining Ability

Furthermore, the study mentions that improved survival could be due to earlier diagnosis and better management of neurocognitive disorders.

Age is a significant risk factor for receiving such a diagnosis. “One in three people at age 85 and one in two people at age 90 will have a major neurocognitive disorder,” says Dr. Pageau.

As with any other health problem, it is the last year of life that will require the most care and services for the patient. “This is often when we conduct a lot of investigation, tests, and treatment to try to determine if we have a favorable prognosis and reversibility of the condition,” explains the expert.

Furthermore, knowledge about Alzheimer’s is evolving, emphasizes Grenier. “We know that the earlier we have a diagnosis, the better it is in the context of the disease because we can work to maintain abilities,” she says. It doesn’t cure the disease, but it allows the person to maintain their abilities longer, and that’s what we’re currently working on. It remains to be seen how we will develop support services for caregivers, as well as services or programs that will give people living with the disease some control over their cognitive health.

Dr. Pageau also points to advances in modern medicine to explain the improved survival rate. Doctors are able to detect harmful proteins that cause various cognitive diseases through lumbar punctures or specialized scans. Good lifestyle habits also play a role in delaying the disease or helping maintain abilities.

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The Canadian Press’s health coverage is supported by a partnership with the Canadian Medical Association. The Canadian Press is solely responsible for this journalistic content.

–This report by La Presse Canadienne was translated by CityNews