Square Peg.

One of the things that make Lewy Body dementia such a tough thing to diagnose is the capriciousness of its symptoms. Alzheimer’s can be a little more straightforward: the sufferer starts forgetting people they know very well, tasks they know how to do, and places they’ve been to for years. It then progresses on to other cognitive issues like decision-making, self-care, and executive abilities. It doesn’t tend to change day by day – people aren’t usually able to do something one day and not another. The progression is pretty predictable.

Patients with Lewy Body, on the other hand, can seem relatively normal on one day, and be completely non-functioning or unmanageable the next. It is one of the issues I hear about most from caregivers: “Yesterday Dad seemed fine, then today he doesn’t know who I am and he keeps talking to imaginary creatures. It’s like he doesn’t really have dementia sometimes. Is this normal?” Insofar as there is a “normal” in dementia, yes, this is normal.

It is one of the toughest realities of LBD. You can’t predict where in the brain it will settle or what functions it will affect or remove, and – even more strangely – sometimes some of those functions will come back! There’s no telling what is fully gone, or only obscured on a particular day, and what will come out from your loved one. They could remember your name and who you are one day, and not even recognize you the next. This, of course, only adds to the stress.

Dad was diagnosed with Alzheimer’s, but it never really fit him. Yes, when we took over he wasn’t feeding himself properly, wasn’t caring for his finances, and had some serious cognitive and executive-function issues. However, he remembered a lot, could figure things out, and was able to do a lot of things for himself. The fact that he was kind of high-functioning made things more difficult because at first I had to convince him to do what I needed him to do but also because he knew he wasn’t supposed to be with the barely-lucid people in the dementia ward, and it was hard for him.

Even though he hasn’t really talked much for the last three years, or spoken my name, or indicated in any way that he knows me – I’m sure that more is going on behind those eyes than he lets on. And I’ve thought that for a long time. When I found out that LBD sufferers don’t necessarily lose their memories or some cognitive functions, I knew that I was right – he was probably thinking more than I thought he was. I can only hope he isn’t aware of his situation anymore – I don’t think he is.

And that’s the problem with LBD. People who have it but who are diagnosed with Alzheimers are square pegs being fit into round holes. The problems won’t be the same, the solutions and medications won’t be as effective, and could actually be harmful, and people don’t know what to expect or how to respond. If your loved one seems like one of these square pegs, you might want to find out where they do fit: there are lots of other possibilities like Lewy Body dementia, Frontotemporal dementia, and Vascular dementia, to name a few.


Check out the new "Lewy Who?" campaign at the Lewy Body Dementia Association.
http://lbda.org/content/lbda-announces-launch-lewy-who-disease-awareness-national-pr-campaign