LBD - Is it denial or anosognosia?

In our months of counseling and therapy, we've learned about the difference between denial and anosognosia. Lewy Body Dementia can be very unpredictable. One day, our loved one seems to grasp his LBD diagnosis. Other times, he has no recollection of ever being diagnosed and sometimes gets rather insulted when it comes time to take meds or do physical therapy. At first look, it can seem like denial. In a LBD patient, though, especially with the drastic cognitive fluctuations that occur, it could be anosognosia. We've learned to "wait it out," especially if his present state is in the one with the masked expression or staring off with his mouth wide open. When he comes back to his more lucid state, he won't have any memory of denying his LBD. It is really really strange, but it is the new normal - for LBD patients to be all over the place with their cognitive state.

This became apparent when we had to go for a neurologist appointment and he kept asking "why are we seeing a neurologist? There's nothing wrong and I am fine!" In this case, he was pretty agitated so I ended up telling him we are going to the neurologist for me and I needed him to be with me.

"Therapeutic fibbing" makes me uncomfortable, because honesty and trust are personal values. This is where working with a family therapist will help - you have to learn to do this and more importantly you have to understand anosognosia is going to probably be a regular part of the LBD journey.

Right now, we are just trying to make sure all his needs are met. Don't argue. Don't take things personally. Try your best to maintain your composure as well as the LBD patient's dignity. It is very helpful to keep a daily journal of food, medication, and exercise. We've noticed certain times of the day are worse than others (post-lunchtime).

The symptoms will get worse, and small victories will become big ones the more you learn to adapt. Thanks to our kids for learning along with us, and understanding that with dementia, anosognosia is a thing.