instaling A Long Journey to an Uncertain End

These symptoms may increase in frequency or severity over time. Symptoms noted in an early phase may be present for the course of the disease. Instead, phases tend to “ebb and flow” or subtly appear. Due to the fluctuations of the disease, the phases are not linear. But, “to be forewarned is to be forearmed.”

It is developed as a very broad framework to refer to. It is in no way intended to represent research or science. The following piece is based on the discussions and observations of the LBD caring spouses. This is a subtle, but important difference to me. Keep in mind these categories and their contents are “potential.” Personally, I shy away from the phrase “stage” and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. In my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap. I defer to the exceptional work of an exceptionally resourceful and committed duo, Sue Lewis and June Christensen, who exhaustively compiled the document based on input from approximately 300 members of an online group called Lewy Body Caring Spouses in 2006. And for that reason, I present the best one I’ve found. Lewy Body Dementia life expectancy is impossible to predict.īut there’s a constant desire by people desperate for answers, for a clue to where they’re going, what’s next, how to plan or just get by. The only one I knew for certain, was the very end. So I never apply stages, phases or expectations. I’ve witnessed far, far too much variation.

I’m no fan of applying the concept of “stages” or “phases” to predict the trajectory of a person with Lewy Body Dementia. (If you need to, jump straight down the page to the potential phases/stages section.) The continuum and progression of Lewy Body Dementia symptoms is difficult to predict, but has some significant consistency that applies to many people and may help with planning.

Instaling A Long Journey to an Uncertain End