Dr. Joseph Sirven

Dr. Joseph Sirven

Sometimes a note is all you need to make a medical diagnosis of Alzheimer’s. Our medical commentator, Dr. Joseph Sirven, explains.

My patient’s daughter slips me a note before entering the exam room to see her father. It says: “Don’t react! I need to tell you several things about my father.”  It goes on: “He’s paranoid accusing me of stealing. He is seeing people that aren’t there, he can’t figure out his checkbook. Please don’t say anything during the appointment. Please give me my dad back!”

I walk into the exam room, and I’m immediately struck — he looks like me. He’s young — early 50s. I negotiate the exam gingerly and when it comes to suggesting treatment options, the patient responds, “I’m fine. I don’t need anything!”

I’ve seen a marked uptick in the number of notes handed to me recently and even more surprised by the relatively youthful age of some of the patients, which studies say, should be five to 10 percent. Yet, early onset Alzheimer’s was responsible for legendary coach Pat Summit’s death at the age of 64.

I actually appreciate family notes because they literally spell out the situation for me. However, with privacy laws centered on patient autonomy and confidentiality, how to navigate these situations is often uncharted territory. My typical approach is to comply with the written requests in a manner that avoids escalating an emotionally charged situation while somehow maintaining the patient’s dignity and autonomy. These situations remind me of how dementia strikes the family more than the patient.

Most notes are written like responses to ransom notes casting doctors as the hostage negotiator, all ending with a plea for the return of their loved one.

These notes particularly when diagnosing younger aged patients with dementia now serve as a call to action. We can’t assume that Alzheimer’s is always a disease of older age. These recent encounters with my patient’s families and early onset Alzheimer’s should scare us right into combat: exercise, diet, socialization and, most importantly, advocacy for research. The last thing I want is for my family to be writing a note about me.

Dr. Joseph Sirven is the chairman of neurology at the Mayo Clinic.