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sharonmit Asked May 2013

What are steps doctors take to diagnose Lewy Body Dementia?

I know there are some on the site who have experienced this.. I am asking for some advice. I believe my mom has Lewey Body Dementia, for a myriad of reasons. I have done plenty of research on the disease and it fits like a T.

Her Physician, while wonderful, does not seem to take me very serious on this. If you have experienced this, what were the steps the Dr. took to diagnose?

The main symptoms are : active dreams, hallucinations that take up most of her day, good days and then bad days, no real conformity with the disease. I have taken her to urgent care many times specifically for a Urinalysis to rule out UTI due to psychotic type episodes. The urine is always clean, puts my mind at ease, only to have her back to "normal" the next day.

I will find another Dr. if I have to, but what should I be demanding he do?

yaya51 May 2013
Hi sharonmit - the first thing you need to do is get a referral from her primary care doctor, either for a neurologist or a geriatric psychiatrist who specializes in forms of dementia. Having researched this yourself you already know there are no "sure fire" tests for LBD, and that a diagnosis can only be confirmed at autopsy, but a qualified specialist will be your best shot at acquiring a reasonably firm diagnosis. When you take your mom to see the specialist, bring a written history with you....when and how symptoms first appeared, how they've progressed etc. The more information you can provide the better.

I believe my MIL also has LBD, but her initial symptoms were with mobility (gait, balance). She started "seeing things" a bit later...also has auditory hallucinations. It's an insidious and "crazy" disease. Like you said, it's all over the place, and no two patients are alike. There are meds and therapies that can be immensely helpful - get an appt. with a qualified specialist ASAP.

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