Oct. 28, 2022 – When Michele Greenfield reflects on her mother Joan’s decline into dementia, the warning signs were there for years: At an awards dinner, where her mother pulled out dental floss and began flossing at the table. Forgetting longtime family friends when her children mentioned them in conversation. The fact that she stopped cooking, something she had long loved. Yet it was several years later before the family could get Joan to the doctor for a diagnosis.
“We couldn’t get her on board for any testing,” says Greenfield, “and when we finally did, and the doctor suggested she might have dementia, she was furious with him. This was a doctor she had loved and seen for years, but now she was angry with him.”
The family’s journey with Greenfield’s mother is common in that receiving a diagnosis of dementia often takes years. In fact, new research out of the U.K. suggests that in most cases, the symptoms of dementia begin as many as 9 years before the actual diagnosis.
Using data from the UK Biobank, researchers compared cognitive and functional measures in people who later developed a form of dementia with those who did not. The Biobank is a collection of medical and genetic data from half a million volunteers that’s used to help researchers prevent, diagnose, and treat of a wide range of illnesses.
“We wanted to see how early we could pick up some of the signs of the diseases,” says lead author Timothy Rittman, PhD, a 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 are really noticed.”
The study involved 500,000 people between the ages of 45 and 69 and looked at their day-to-day functions.
“We wanted to look for the meaningful differences between the groups,” explains Rittman. “Once we found them, we wanted to know if they’d always had these symptoms, and whether or not they were getting worse. The closer to diagnosis, the worse they got.”
This checks with Greenfield’s experience. As her mother’s disease worsened, other symptoms began to appear.
“She’d talk to the television or stick her spoon directly into a container of ice cream, which she never would have done,” says Greenfield. “Then she had some fender benders while driving, and we had to work to get her license revoked.”
While symptoms become more obvious as dementia progresses, early signs can be easy to reason away – or, in the case of the patients themselves, deny away. But knowing what the early signs might be and acting on them can be important for early intervention.
What to Watch For
Heidi Roth, MD, an associate professor of sleep medicine, memory, and cognitive disorders and a leader at the Duke-UNC Alzheimer’s Disease Collaborative, says that often, people wait until they're quite impaired before seeking an evaluation for dementia.
“This could be a breakdown in their ability to function,” she says. “They struggle to take care of finances, go shopping, are consistently forgetting appointments, and obvious signs like that.”
Roth says that the U.K. research pointing to a full 9 years from early symptoms to diagnosis makes sense, for a variety of reasons.
“There might be slight changes early on, but they probably don’t react,” she says. “Or family members might 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 has some minor cognitive declines with aging – walking into a room and forgetting why you were there, for instance. Or forgetting the occasional appointment. Even in our 30s and 40s, we might worry about these instances. “But it’s when the behaviors become more consistent, or when people begin to comment on your ‘little misses,’ that you should pay attention,” Roth says.
Rittman suggests that if you or a family member has concerns about subtle changes, see a doctor for an evaluation.
“They can test for logic, fluid intelligence, memory, and thinking,” he says. “There are general signs that will turn up with dementia.”
Screening can first determine if you are headed toward dementia or if there are other causes for symptoms. In some cases, especially with elderly patients, the issue might be polypharmacy, or using multiple drugs to treat a single condition. Removing one or more drugs from the mix could be all that is needed to clear up some of the symptoms. Screening for – and treating if needed – anxiety and depression can also sometimes lessen dementia symptoms early on.
If dementia is indeed the diagnosis, the value in 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 dementia risks,” says Roth. “There’s also evidence that sleep can play a role in cognitive function. For instance, people with untreated sleep apnea begin to show cognitive decline a full 10 years before others.”
As clinical drug trials advance, there’s also hope that if the disease is caught early enough, meaningful therapeutics might stop it from progressing as well.
“We’re making progress on that front, but we’re not there, yet” says Roth.
Rittman agrees and sees his research as a contribution to dementia research and treatment.
“The medications are coming along, but we also need to think more creatively on the mechanisms of these diseases, potentially combining medications to attack them,” he says. “I’m hopeful that this trial contributes to the awareness that we need to be looking early on when symptoms appear.”
After her experience with her mother, Greenfield advises others to act early when they suspect dementia in a loved one.
“Don’t wait too long, until the situation gets dangerous,” she says. “It’s helpful to plan for the inevitable, especially if people live on their own.”