They thought they had Alzheimer's disease. They even dedicated their lives to advocating for the Alzheimer's community. Then, they had the opportunity to take PET scans and learned their doctors had been wrong.
Imagine being diagnosed with Alzheimer’s in your early 60s and leaving your career, only to find out years later that you had no signs of Alzheimer’s pathology in your brain.
Among our 2024 Live Talks, I spoke with two women who have been living with what they thought was Alzheimer’s — and devoting themselves to advocacy for the Alzheimer’s community — only to find out almost a decade later that there was no beta-amyloid plaque in their brains.
LuPita Gutierrez-Parker and Doreen Monks were both finally able to get PET scans to see if they qualified for new Alzheimer’s monoclonal antibody therapies — only to discover they have been living with the wrong diagnosis.
For Years They Lived With Alzheimer’s. Then New Information Came to Light
When I shared, in this conversation, that I didn’t know whether to congratulate them or apologize, their answers highlighted how emotionally complicated misdiagnosis can be. Both Doreen and LuPita told me their first reaction was anger — anger at the fact that both had to give up careers they loved. LuPita worked as a college admissions officer, and Doreen was a neurology nurse practitioner. And then came the question: What comes next?
Both are determined to find out what exactly they do have — what has been causing their Alzheimer’s-like symptoms of cognitive impairment? Although their lives as Alzheimer’s advocates have taken a different twist, both women shared that they remain committed to helping people impacted by dementia.
Their stories are shocking, but at the same time, not so rare: Some studies have shown that as many as 25 percent of people diagnosed with Alzheimer’s actually have a different type of dementia.
For example, conditions like limbic-predominant age-related TDP-43 encephalopathy (LATE) or limbic-predominant amnestic neurodegenerative syndrome (LANS) mimic Alzheimer’s symptoms but do not involve plaque buildup. LuPita and Doreen’s stories highlight the complexities of diagnosis — and how important it is to educate people on how to pressure their doctors for better, more carefully considered or more informed answers. This is where new diagnostic innovations — like blood tests for Alzheimer’s — can help advance this process.
Making accurate diagnosis tools more readily available and, most importantly, more affordable, patients won’t have to wait years to find out if they’ve been misdiagnosed. These new technologies for detecting dementia earlier could mean a different path for patients. It certainly would have been for both LuPita and Doreen.
