According to a new report sponsored by Alzheimer’s Disease International, nearly three-quarters of the 36 million people living with dementia have not been diagnosed with it. Experts say the lack of diagnosis has enormous repercussions on early treatment and care, and has a direct impact on the disease’s cost to society.
“Early diagnosis and intervention is good for people with dementia, their caregivers and society as a whole,” said Dr. Sube Banerjee, a professor of mental health and aging at King’s College London and co-author of the report. “The bad news is that there are lots of people who do not benefit from early treatment and care because they are simply diagnosed too late.” Treatment gaps are prevalent worldwide, said Banerjee, and because of this, countries should make dementia a national health priority by generating response strategies and policies to manage it. “It’s so important to have good quality dementia care because there is a dependence that happens and patients stay dependent, so it’s important for countries to have long-term strategies,” Banerjee said.
The global cost of Alzheimer’s disease and associated dementias reached an estimated $600 billion last year, according to Alzheimer’s disease International, and the cost constitutes about 1 percent of the world’s domestic product, or 1.5 percent of the U.S. GDP. If dementia were a country, its economy would rank No. 18 in the world, according to the report. And those numbers will spike even higher, as the illness is expected to increase three-fold by 2050. “Knowledge is power here,” Banerjee said. “But you can’t access care if you don’t know what you have.”
Experts say while early medical intervention can slow the progression of the disease, there are also smaller, simpler options that can go hand-in-hand with treatment. Peer and support groups allow patients and caregivers to share solutions and treatment options at early diagnosis. Studies have found that patients and their families benefit from such help and support in the early stages of diagnosis, the authors write.
“There are those beliefs out there that dementia is just a natural part of aging, but it’s not,” said Banerjee. “It’s a nasty, horrible illness. We can’t make it go away right now, but we can make life with it much better if they’re diagnosed early.”
“Failure to diagnose Alzheimer's in a timely manner represents a tragic missed opportunity to improve the quality of life for millions of people,” said Dr. Daisy Acosta, chairman of Alzheimer's Disease International.
This report, which makes the case for early diagnosis of Alzheimer's, comes just days before a United Nations meeting on Alzheimer's and is aimed at getting the disease on the agenda of world leaders. The group is pushing for all countries to develop a national dementia strategy that promotes early diagnosis and offers a range of care from primary care doctors, specialists, and community-based treatment centers. Recent studies suggest the disease starts developing at least a decade before symptoms appear. Many scientists and patient advocates believe earlier testing will play an important role in getting people treated and in preparing families for the burden ahead.
“The report is really mainly about the estimated 28 million out of 36 million people worldwide with dementia who don't have a diagnosis,” said Professor Martin Prince of King's College London Institute of Psychiatry, who led the study. Among the study's main findings, he said it shows that while current Alzheimer's treatments - Aricept from Eisai Co and Pfizer Inc, Reminyl from Shire, and Exelon from Novartis Exelon - are no cure for the disease, they can improve symptoms in some patients. That could allow some to delay a nursing home stay, for example.
Prince said early diagnosis could save high-income countries as much as $10,000 per patient. While that might not mean much to individual families taking care of a loved one with a disease that can span several years, those savings could make a significant difference on a global scale.
“Earlier diagnosis can also transform the design and execution of clinical trials to test new treatments,” Marc Wortmann, executive director of ADI, said in a statement. Researchers increasingly believe that many drugs being tested for Alzheimer's have been tried on people who are already too far gone. Earlier diagnosis will help countries develop infrastructure for treating people in the earliest stages of the disease, when drugs have the most chance of doing some good.
Dr. Sam Gandy of the Mount Sinai Alzheimer's Disease Research Center in New York said existing drugs are only modestly effective, and they always wear off. “Eighteen months after you start a drug, they are in the same place,” he said.
But Robert Egge, vice president of public policy at the U.S.-based Alzheimer's Association, said the burden of Alzheimer's is so great that even modest benefits are worth pursuing. “We certainly need to push for more effective disease-modifying treatments that can slow or stop the disease, and at the same time we see the treatment value that can follow from early diagnosis,” he said.
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