Behaviors, durations, severity, and the overall journeys will differ. Vastly.
There will likely be many similarities and commonalities, but all the terrifying stories you may hear do not necessarily have to come true. That said, just getting Dementia with Lewy Bodies is a horror show on its own.
Get Ready to Board The Lewy Body Dementia Rollercoaster
After diagnosis, don’t be convinced that a change or symptom is permanent, nor that it is the inevitable sign of the dread “final stage.” It could be…. but it could also be one of the constant fluctuations that bounce many Lewy Body Dementia sufferers all over the board.
I have seen both incredible rallies from frightening low-points, precipitous drops in ability and cognition, gradual declines, and improvements. But more than anything, I have seen the condition fluctuate widely, with extended periods of consistency.
Abandon Your Preconceptions About Behaviours
More than anything, be aware of exactly what is going on with your loved one, without preconceptions of what something means, or is a sign of. This requires sensitivity, careful observation, and patience. Remember that the conditions change, sometimes in an instant, so the behaviour you are witnessing right now, may be very different a moment from now, and you may have to act accordingly.
Learn as much as you can. There are many sources of information online, in books and on video and, hopefully, in person.
Be patient with yourself and with the one you’re caring for. They may surprise you more than you expect: I hope it’s a pleasant surprise. There will be no shortage of unpleasant ones, so celebrate every single positive one, and some of the neutral ones, too!
Again, every person with Lewy Body Dementia is going to react somewhat differently. Don’t base your expectations on the experiences of someone else. The famous, or infamous, cases like Robin Williams will likely bear only passing resemblance to your own experience.
Strength to you!