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Digging In to Dementia Misdiagnosis

By | September 18th, 2023

With a deep dive article, a new landing page, upcoming LiveTalks and a new survey, we're exploring the common experience of inaccurate dementia diagnoses, including why they happen and how to help ensure your diagnosis is right.

After my mom was first diagnosed with Alzheimer’s disease, I spent much of the first several years wondering if she really had Alzheimer’s. Her symptoms would vary greatly. Some days she would repeat herself a lot, while other times, she would return to the mom I have always known. When I had previously thought of Alzheimer’s, I imagined a consistent decline, as opposed to this on-and-off variability.

Misdiagnosis is surprisingly common and second opinions are smart if you can get them, so I sought answers from experts, and was honestly  convinced for a time that she actually had vascular dementia instead. Eventually, we accepted the default diagnosis of Alzheimer’s disease, but to this day, I really cannot say for absolute certain that it’s right.

Explore the new landing page:
Why Is Dementia Misdiagnosis So Common?

We know Alzheimer’s starts in the hippocampus (the area of the brain responsible for memory), but then I learned that vascular dementia can start as lesions in the brain that later lead to the pathological symptoms of Alzheimer’s (beta-amyloid plaque and tau tangles). Most providers don’t have a good way to diagnose people without very expensive scans that are often not covered by insurance. No wonder people are confused!

We have been investigating — and now we’ve launched a special page exploring — Why Dementia Misdiagnosis Is So Common.

As we continue to build out this resource, we also want to hear YOUR experiences. We believe patient insights will help connect the dots between scientific research, medicine, and lived experience. If you or someone you care for has a dementia diagnosis, please take a moment to fill out our short survey on diagnosing dementia.

Help our reporting team create
more resources around this topic:
Take our Dementia Diagnosis survey.

Once we gather enough responses, we can start putting together a new resource for patients, scientists, doctors and healthcare providers to help answer questions like, How do I know for sure what dementia I may have?”

If you find our articles and interviews helpful, please consider becoming a supporting member of our community. Frustrated by the lack of an editorially independent source of information on brain health and Alzheimer’s disease, we decided to create Being Patient. We are a team of dedicated journalists covering the latest research on Alzheimer’s, bringing you access to the experts and elevating the patient perspective on what it’s like to live with dementia.

Please help support our mission.

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