This is an article that was recently posted as a news story. October being LBD Awareness month, I wanted to write about this disease. As my mother's guardian - and daughter - I have a special interest in LBD. She lives in a nursing home just around the corner from me (actually it's a few corners but only a 4 minute drive...1/2 mile as the crow flies). There is no way I could care for her at home, but the professionals are doing a beautiful job with her, meeting needs that I could not meet, and giving her a much higher quality of life than she could otherwise expect. (She does come to my home quite often, loves to play with our critters, play the piano, help out in the kitchen, enjoy time with her great-grandson, etc...plus when I'm running errands I can swing by to pick her up so we can spend the time together, although we're nearing the end of her ability to do that unfortunately.)
Anyway, this article just touches the tip of the iceberg. One statement that is particularly important thought, is this one: "Winston [Jaron Winston, M.D., a geriatric psychiatrist] says because the disease takes awhile to show itself, often doctors won't realize the patient may be suffering from LBD until the patients are treated with Alzheimer's medications that tend to make the LBD symptoms worse."
In some cases the wrong medication can be lethal. As it nearly was for my mother. I can't stress enough that, unless and until you can find a "lewy-savvy" doctor for your loved one, you WILL NEED to be their advocate. A proper diagnosis is ESSENTIAL, and most physicians are not familiar with LBD yet, in spite of its prevalence. To many, "dementia is dementia is dementia, and it's all Alzheimer's." Given that an LBD victim can live many years with this disease (unless a wrong diagnosis and improper treatment shorten their lives), it is imperative that appropriate treatment is provided.
In my mother's case, in spite of the improper treatment by one hospital, the correct diagnosis and treatment helped her actually regain much of her cognition and all of her former personality. Once she once again was herself, she has been able to enjoy her life within each moment, and the misery and living hell that she had been existing in was a thing of the past - bad memories that she doesn't even have anymore. With her hallucinations and delusions under control with the right (delicate!) mix of meds, and her personality back, even with the memory issues, even with her "bad days" where her cognition is lower and confusion reigns (LBD is like a roller coaster of improvements and decline, unlike the steady decline of other dementias) - I have gotten my mother back. These 4 years are a blessing that I would not have had without the proper diagnosis, medication regimen, and care.
For more information about Lewy Body Dementia please visit the Lewy Body Dementia Association website. If you have a loved one with LBD, or suspect that they do, please familiarize yourself with this disease. Yes, it is fatal; but there is help for them!
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