Dr. Jekyll or Mr. Hyde?

One of the biggest things I hear about when I meet caregivers and other people touched by Lewy Body Dementia, are the radical behavior changes in those with LBD.  All of the dementia syndromes cause some level of emotional, or personality, or behavioral change.  Alzheimer's disease, the most common of the dementias, causes memory and cognitive impairment, which leads to anxiety, anger, strange behaviors, and, of course, a regression into the past.  Stroke-induced dementia shares many of the same traits.  LBD, however, is a little bit different.  It seems singular in the drastic nature of its behavioral effects.


Caregivers report aggression, rage, violent physical behaviors, profanity, acting out, and rapid shifts in mood; often from individuals known for calm speech and behavior, friendliness, kindness, and patience.  It seems most often to be males who are at the effects of this, although I have heard of a few women.  It is one of the most common symptoms of LBD, and the one that catches everyone off guard, and I try to spread the word as much as I can about its commonality, while helping people deal with the emotional shock of seeing their loved one so very changed.  It can seem like you're living with Dr. Jekyll and Mr. Hyde.  While everyone with a loved one suffering from dementia is justifiably disturbed by its unstoppable, cruel corrosions of the person we know, there is something viscerally difficult about seeing a completely different person emerge from someone you know so well; more difficult, in a way, than forgetfulness and cognitive breakdown. 


I have some personal experience with the phenomenon of one's loved one doing something completely out of character.  My Father loved the idea of control - exhorted us at all times to be in control of ourselves.  I rarely saw him completely lose his temper, he never expressed his anger physically, and I can't remember one time I heard him swear.  Which is why I was surprised to receive a call from the facility where he lived, telling me that he had gotten aggressively territorial with another resident, attempted to punch a caregiver, thrown a chair, and had had to be restrained by police and EMTs.  He spent three weeks in a gero-psych ward because of this incident, drugged up on anti-psychotics and bewildered at the change in his surroundings.  This was when we began to suspect that he did not have Alzheimer's, but may instead have a far less well-known disease called Lewy Body Dementia.


The fact that it was so poorly understood, and had much worse PR than Alzheimer's, made it difficult to know how to deal with it, especially in terms of Dad's facility, which didn't WANT to learn how to deal with it. We were lucky to find a caregiver and owner of an Adult Family Home, who understood the disease and its effects and welcomed Dad; many others are not so lucky.  It is for exactly this reason that we need to spread the word about LBD and its symptoms, until it is just as well known as Alzheimer's ( and receives the same attention and funding!)


For those of you walking this hard road with your loved one, shocked at the changes and behaviors you see in one you knew so well; I'm so very, very sorry.  Try to remember that it is the disease that is acting, not your loved one, and that that person remains somewhere, even if only a little bit.  There are things you can do to ease and soothe the behaviors, and also medications that help, although I don't advocate drugging a patient.  But most of all - you're not alone - others are with you who understand what you're going through.


 Toll-free LBD Caregiver Link – 800.539.9767

 http://www.lewybodydementia.org

 http://lbdtools.com/