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.
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.
What Are the Early Signs of Dementia?
Orgeta says the early symptoms of dementia include:
- Memory problems
- Trouble finding words
- Getting confused in familiar places
- Struggling with everyday tasks
“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.
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.