- LBD Stages and the difficulty in diagnosis

[Guest guest]

> Wondering how you developed this questionnaire?

I started with an idea, cranked out an initial list of questions,

solicited feedback from the group, added more ideas from them, got a

few sets of answers that gave me more ideas, and it kept growing.

We are now over 80 questions!

>Are all of the things listed symptoms during one or all of the

stages?

Well, it appears from the answers that yes, nearly every one of

these is part of the course of the disease. Folks get them in

different orders and intensities, but they all seem tied together.

>I would love to know more about the stages. Is there currently a

list of stages and progression guide?

Not for LBD, which is why I started this project. There are stages

for AD and general dementia, but specifically for LBD, nope.

Nothing exists.

The disease mostly presents itself either with cognitive or physical

changes first, but not both. And depending on what problem is seen

by what doctor, the diagnosis is different depending on their

perspective. The patient is frequently unaware of the severity of

the problem and can't communicate or even acknowledge with much

accuracy what has changed. AND, depending on the observations of

family members, (and we all know that family members don't all agree

on what's going on with a LO) the doctor doesn't always get a

realistic picture of what's going on.

Diagnostig guidelines are a bit vague right now, especially in

defining what fluctuating cognition is. But there are studies that

are now providing insight into how to determine how to evaluate

whether or not fluctuating cognition exists.

I have no idea whether or not we're going to find any trends in my

project, but it's certainly worth giving it a good go! I will post

results here and in the Files section whenever I have enough data to

respond to...

Hope this helps!