Dementia symptoms appear years before official diagnosis: study

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Oct. 28, 2022 – When Michele Greenfield reflects on her mother Joan’s descent into dementia, the warning signs have been there for years: At an awards dinner, her mother pulled out dental floss and started flossing at the table. She forgot longtime family friends when her children mentioned her in conversation. The fact that she had stopped cooking, something she had long loved. But it was several years before the family could get Joan to the doctor for a diagnosis.

“We couldn’t bring her on board for testing,” says Greenfield, “and when we finally did and the doctor said she might have dementia, she was angry with him. This was a doctor she loved and had seen for years, but now she was angry with him.”

The family’s journey with Greenfield’s mother is common in that it often takes years before a diagnosis of dementia is made. Indeed new research from the UK suggests that in most cases the symptoms of dementia start up to 9 years before the actual diagnosis.

Using data from the UK Biobank, the researchers compared cognitive and functional measures in people who later developed some form of dementia with those who didn’t. The Biobank is a collection of medical and genetic data from half a million volunteers that help researchers prevent, diagnose and treat a variety of diseases.

“We wanted to see how early we can spot some of the signs of the disease,” says lead author Timothy Rittman, PhD, Senior Clinical Research Fellow in the Department of Clinical Neurosciences at the University of Cambridge.

“We suspected that subtle signs show up long before they’re actually noticed.”

The study included 500,000 people between the ages of 45 and 69 and examined their daily functions.

“We wanted to look for the meaningful differences between the groups,” explains Rittman. “Once we found them, we wanted to know if they had always had these symptoms and if they were getting worse or not. As the diagnosis got closer, they got worse.”

This confirms Greenfield’s experience. As her mother’s illness worsened, other symptoms emerged.

“She would talk to the TV or put her spoon straight into a bucket of ice cream, which she would never have done,” says Greenfield. “Then she had some fender flares while driving and we had to work on getting her license revoked.”

While symptoms become more obvious as dementia progresses, early signs are easy to ignore—or, in the case of the patients themselves, deny. But knowing what the early signs might be and acting on them can be important for early intervention.

What to look out for

Heidi Roth, MD, associate professor of sleep medicine, memory and cognitive disorders and leader of the Duke-UNC Alzheimer’s Disease Collaborative, says people often wait until they are severely impaired before requesting a screening for dementia.

“This could be a breakdown in their ability to function,” she says. “They struggle to take care of finances, go shopping, keep forgetting appointments and such obvious signs.”

Roth says the UK research pointing to a full 9 years from early symptoms to diagnosis makes sense for a number of reasons.

“There can be slight changes early on, but they’re probably not responsive,” she says. “Or family members may not want to accept that their loved one is showing signs of impairment because it can be a big adjustment for everyone.”

There’s also the fact that everyone suffers some minor cognitive declines as they age — like walking into a room and forgetting why you were there. Or forget the occasional appointment. Even in our 30s and 40s, we might worry about these cases. “But if the behavior becomes more consistent, or if people start commenting on your ‘little mistakes,’ you should pay attention,” says Roth.

Rittman suggests that you see a doctor if you or a family member have concerns about minor changes.

“You can test for logic, fluency, memory and thinking,” he says. “There are general signs that will emerge with dementia.”

Screening can initially determine if you are heading towards dementia or if there are other causes of the symptoms. In some cases, particularly in older patients, it may involve polypharmacy, or the use of multiple drugs to treat a single condition. Removing one or more drugs from the mix might be enough to eliminate some of the symptoms. Screening for – and treating if necessary – anxiety and depression can sometimes also reduce dementia symptoms early on.

If dementia is indeed the diagnosis, the value of early screening is that there are some lifestyle changes a patient can make that might help.

“There’s a lot of evidence that diet and exercise can reduce the risk of dementia,” says Roth. “There is also evidence that sleep may play a role in cognitive function. For example, people with untreated sleep apnea start showing cognitive decline a full 10 years before others.”

As clinical drug trials progress, there is also hope that useful therapeutics could halt disease progression if the disease is caught early enough.

“We’re making progress there, but we haven’t reached our goal yet,” says Roth.

Rittman agrees and sees his research as contributing to dementia research and treatment.

“The drugs are coming, but we also need to think more creatively about the mechanisms of these diseases and possibly combine drugs to attack them,” he says. “I’m confident that this study will help raise awareness that we need to be on the lookout for early when symptoms appear.”

Following her experience with her mother, Greenfield advises others to act early if they suspect dementia in a loved one.

“Don’t wait too long for the situation to become dangerous,” she says. “It helps to plan for the inevitable, especially when people live alone.”


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Dementia symptoms appear years before official diagnosis: study
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