Who Have YOU Told About LBD?

October is Lewy Body Dementia Awareness Month. It’s up to each of us to make a difference. Each person we tell, each person to whom we explain the seriousness of an incorrect diagnosis, each doctor we educate, each residential care facility we teach, they all count up. They count up in longer lives with more quality of lives for our loved ones because there’s less stress and less misuse of those LBD sensitive drugs. They count up in more cooperation and less frustration because we are finally dealing with people who KNOW.

But there’s still much to do. Just this week, we heard from two women on different sides of the nation. Jill’s husband is in a hospital and the hospital neurologist has decided that his previous diagnosis of LBD is wrong—he is “too functional” to have dementia and so he has some sort of delirium—and needs antipsychotics, of course. Sandra’s husband is also in early stage LBD and in his delusional paranoia, has rescinded her right to participate in his medical treatment. And so when her husband had minor surgery, no one considered his possible sensitivity to inhaled anesthetics. Sandy tried to warn the nurse anesthetist, but was ignored. Now he is nearly unable to walk, and very confused most of the time.

None of these professionals appear to be Lewy savvy.  Doctors who see patients for short periods of time don’t see what caregivers see. It is easy for those who aren’t aware to brush aside caregiver concerns. And sadly, there are many more like them in our hospitals and care facilities—and in our families as well.

Yes, our families. Over and over we hear stories of family members who refuse to consider that their parent, sister, brother, has LBD. Again, that fluctuation cognition gets in the way and they often see only the “Good Times.” Unlike the caregiver, they aren’t living with their loved one hour after hour, day after day. They don’t see the confusion, the acting out. And so often, they aren’t willing to listen to the ones who do know. They don’t want their loved one to have this dread disease—and so he/she doesn’t—as far as they are concerned.  And there’s no support, and much frustration and stress for the caregiver. Stress which is passed on to the loved one, of course, so that what the disbelieving family member means as support actually becomes harmful and leading to even worse symptoms.

How do we change this? First, we need to fund organizations like the LBDA who support research and awareness. Secondly, we need to speak up, often and loudly. When it is our loved one that’s involved, this often means going head to head with non-Lewy savvy medical personnel--and standing our ground. When it is family, we need to do all we can to expose them to information about this disorder. Our book, A Caregiver’s Guide to Lewy Body Dementia, is a good start. But there are many books, with interesting, easy to read stories about LBD out there now. You can find most of them in our website bookstore. Third, we need to talk about dementia in general just as we do about breast cancer or heart problems. It is still a condition that many people are ashamed of, afraid of and therefore, try to deny that it could happen in “my” family, “my” life.