Dementia Takes More Than 3 Years to Diagnose, Research Finds
Early signs of dementia can resemble normal cognitive changes due to aging. But timely diagnosis can help people get the treatment and support they need.
New research has found it takes an average of 3.5 years for a person with dementia to receive a diagnosis after experiencing the first symptoms. For people with early-onset dementia, the delay is even longer, 4.1 years.
The results — which analyzed data from 13 previously published studies involving more than 30,000 people across Europe, the United States, Australia, and China — highlight a major gap that often keeps people from getting early treatment and support.
Many people and their families “may be living with uncertainty, and without access to the support, care, and planning resources they need,” says senior study author Vasiliki Orgeta, PhD, an associate professor of psychiatry at University College London in England.
The findings also highlight the urgent need to improve public awareness and training for healthcare providers and to streamline the referral process, says Dr. Orgeta.
Why Does Getting a Dementia Diagnosis Take So Long?
Unfortunately, it’s not surprising that diagnosis takes so long, especially in younger people, says David Reuben, MD, director of the UCLA Alzheimer’s and Dementia Care program in Los Angeles.
“People who are younger and have atypical presentations often tell me they spent five years trying to find out what was wrong with them,” says Dr. Reuben, who wasn’t involved in the study.
There are a few factors that go into that, he says, but a big one is that many types of dementia, including Alzheimer’s disease, are age-related diseases — which means symptoms can be subtle and are often mistaken for normal signs of aging.
“For example, at ages 65 to 70, Alzheimer’s affects about 3.5 percent of the population. So if somebody’s 65 years old, and they say they are having memory problems, it’s unusual for them to have dementia. But once you get to age 90, it’s almost one-third of the population,” says Reuben.
“Some people may also show changes in mood or behavior,” says Orgeta.
These signs usually start to appear in people over 65, but for some, especially those with young-onset dementia, symptoms can begin as early as their forties or fifties, she says.
How Can You Tell Whether Forgetfulness Is Due to Dementia or Normal Aging?
“This is a commonly asked question by patients and loved ones. It can often be challenging to recognize, especially in the early stages of dementia. Occasional forgetfulness can be part of normal aging,” says Arman Fesharaki-Zadeh, MD, PhD, an assistant professor of psychiatry and neurology at the Yale School of Medicine in New Haven, Connecticut, who wasn’t involved in the new study.
Screening can help, but it may miss people whose symptoms are more subtle, says Reuben.
“The best way to know for sure is to get a neuropsychological evaluation in which the individual’s cognitive abilities are measured against what is normal for people of their age and education level,” says Stephanie Towns, PsyD, a neuropsychologist and associate professor of neurology who also works at the Yale School of Medicine.
Can Early Diagnosis Make a Difference?
Early diagnosis is proving to be crucial, as is prevention, says Maryjo Cleveland, MD, an Alzheimer’s researcher and physician specializing in dementia management and frailty at Atrium Health Wake Forest Baptist in Winston Salem, North Carolina.
“We know now that people with normal cognition, who eat a healthy diet, get a significant amount of exercise, are cognitively and socially engaged, and who control their blood pressure can delay cognitive decline,” says Dr. Cleveland, who was not involved in the study.
“People who get a diagnosis of mild cognitive impairment or early Alzheimer’s may be eligible for the new anti-amyloid treatments that can delay the progression of the disease,” she says. Those include Kisunla (donanemab) and Leqembi (lecanemab), both approved to treat early Alzheimer’s disease or mild cognitive impairment.
The other benefit of an early diagnosis is that it gives you time to plan for the future, says Reuben. “This can include financial planning and might include planning for what kind of care you’d want at the end of your life — perhaps most importantly, identifying somebody who can speak for you if you progress to the point where you can’t speak on your own behalf,” says Reuben.
What to Do if You or a Loved One Shows Signs of Dementia
If you notice signs or symptoms of dementia, talk to your doctor about addressing any known reversible causes of cognitive decline — the most common being sleep disorders, depression, anxiety, and chronic pain, says Dr. Towns.
Cleveland suggests asking your primary care doctor about how to get a memory evaluation. “Some [doctors] may feel comfortable doing that themselves, while others may make a referral,” she says.
“Time is brain — so don’t wait,” says Cleveland.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Tom Gavin joined Everyday Health as copy chief in 2022 after a lengthy stint as a freelance copy editor. He has a bachelor's degree in psychology from College of the Holy Cross.
Prior to working for Everyday Health, he wrote, edited, copyedited, and fact-checked for books, magazines, and digital content covering a range of topics, including women's health, lifestyle, recipes, restaurant reviews, travel, and more. His clients have included Frommer's, Time-Life, and Google, among others.
He lives in Brooklyn, New York, where he likes to spend his time making music, fixing too-old electronics, and having fun with his family and the dog who has taken up residence in their home.
Becky Upham has worked throughout the health and wellness world for over 25 years. She's been a race director, a team recruiter for the Leukemia and Lymphoma Society, a salesperson for a major pharmaceutical company, a blogger for Moogfest, a communications manager for Mission Health, a fitness instructor, and a health coach.
Upham majored in English at the University of North Carolina and has a master's in English writing from Hollins University.
Upham enjoys teaching cycling classes, running, reading fiction, and making playlists.
