UMich study finds most people with dementia are unaware of their diagnosis

A recent study published by the University of Michigan Medical School suggests most dementia patients are unaware of their diagnosis. This research initially stemmed from the BASIC Cognitive project, a Michigan Medicine-led project studying cognitive impairment in Nueces County, Texas. 

This study explored whether or not patients were aware of their diagnosis and how this differed among non-Hispanic white participants and Mexican-American participants, as well as whether or not a patient’s non-medical caregiver was aware of their diagnosis.

The researchers found if caregivers are not professionally trained to deal with dementia patients, the chances the patients will remain unaware increase. They also concluded an increase of physicians’ cultural competence in dealing with dementia patients in minority groups has the potential to improve their care.

In an interview with The Michigan Daily, Dr. Lewis Morgenstern, Medical school professor and a senior author of the study, explained the methods of the team’s research determined whether or not a patient suffered from dementia without ever being informed by other physicians. 

“We established this cohort of over 600 participants and caregivers,” Professor Morgenstern said. “We see them every couple years, see how they’re doing and ask about their health. In this particular study, we asked them whether they had ever been told by a healthcare provider that they had dementia. We do the neuropsychological testing to make a determination of dementia. So we’re comparing our diagnosis of dementia with whether the physician ever told them that they had dementia.”

Morgenstern also said a diagnosis is important for a patient’s ability to access resources to improve their quality of life.

“Having a diagnosis of cognitive impairment is really crucial so that people who have cognitive impairment can get global resources from the community,” Morgenstern said. “Those resources include help with transportation, help with power of attorneys and other legal issues … and potentially home improvements that would make the home more safe for somebody who has cognitive impairment.”

Researcher Joshua Caulfield, who also worked on this study, wrote in an email to The Daily a majority of participants in the study were unaware they had dementia, with the rate of uninformed participants being much higher among Mexican Americans.

“Essentially, of the participants in our study who we identified as probably having dementia, 81% were unaware that they had dementia,” Caulfield wrote. “The ethnic disparity was significant, as that number was 68% in NHW (non-Hispanic whites) participants and 85% in MA (Mexican-American) participants. The other important finding was that a diagnosis was not associated with less burden for caregivers, and further study is needed to understand why.”

Caulfield also explained that some physicians are quick to dismiss patients who may have dementia and some are afraid of the stigma behind cognitive disabilities, hence a possible reason for the low diagnosis rates for both groups.

“Physicians often cite not having enough time with patients to make diagnoses, not having dementia-specific training and not feeling comfortable diagnosing a patient with a stigmatized disease with no cure,” Caulfield wrote. “In every case, however, we think the onus is on physicians to ensure that they diagnose patients who they suspect could have dementia.”

LSA junior Isabella Liu, vice president of The Youth Movement Against Alzheimer’s student organization, said in an interview with The Daily she feels it is important to be empathetic and conscious towards individuals with memory loss as it could be frustrating to be constantly reminded of things one may not necessarily remember.

“When you go and remind things to these people, oftentimes they can be kind of aggravated because they don’t even remember,” Liu said. “They kind of feel like they’re being attacked because you’re trying to insinuate that their memory is declining and they don’t even realize it. I think it’s just very important to realize these symptoms and to approach your interactions with empathy and with understanding when you are informed.”

Morgenstern said that a greater scientific understanding of the cognitive processes associated with aging will become more important as the US faces the demographic challenge of an aging population — which will increasingly need health support — and declining birth rates among younger generations. 

“This country is going to face a huge increase in the number of people who have cognitive impairment and need to be cared for,” Morgenstern said. “So who’s going to take care of these people? There are not enough nursing home beds. … All of us, whether you’re in college or older, are going to be older at some point, right? That’s the nature of life. So it’s important to try to think about these issues and try to fix them now before they affect all of us on a personal level.”

Daily Staff Reporter Emma Sulaiman can be reached at emmasul@umich.edu.

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