LEWY BODY DEMENTIA
SERIES BACKGROUND
Arriving at an accurate diagnosis for both the presence of dementia and then the type of dementia takes time and requires clinicians to look at a variety of factors (Alzheimer’s Disease International, 2009). Recent research reflects a growing understanding of non-Alzheimer’s dementias. While Alzheimer’s disease continues to make up a majority of the dementia diagnoses, studies estimate the prevalence of vascular dementia to be 10-30%, making it the second most common dementia (WHO, 2012, Alzheimer’s Disease International, 2009; Stephan & Brayne, 2008; Alzheimer’s Society, 2007). Estimates for the prevalence of Lewy body dementia tend to be harder to pinpoint, with some studies estimating prevalence at less than five percent and others estimating it at ten percent or even as high as vascular dementia (Stephan & Brayne, 2008, WHO, 2012, Alzheimer’s Disease International, 2009).
It is estimated that Parkinson’s disease dementia, a type of Lewy body dementia, affects up to two percent of those over 65 and that of the nearly one million Americans with Parkinson’s, 50-80% will experience the dementia associated with it (Alzheimer’s Association, 2013). Additionally, there is increasing evidence to suggest that mixed dementia, a combination of two or more types of dementia, is more prevalent than previously thought and that it under diagnosed (Stephan and Brayne, dementia public policy; world report).
For these reasons it is important to provide sound, evidence-based training on the different types of dementias, including the origins, symptoms and best practice treatments. Therefore, this series, through virtual training and active learning, seeks to advance the training and workforce development goals of the Virginia Dementia State Plan.
The webinar series will include a pre-recorded 30-minute free lecture that briefly reviews types of dementia and three, live 60-minute free webinars on different types of dementia (Lewy body dementia, vascular and mixed dementias, and Parkinson’s disease dementia) and with a special emphasis on ethnic and racial minorities. This is the third live webinar in the series which will focus on the dementia with Lewy Bodies.
WHAT WILL YOU LEARN?
- Define Lewy body dementia
- Review characteristics of Lewy body dementia
- Review management of Lewy body dementia
SESSION OBJECTIVES
- The webinar will review the causes, signs and symptoms, disease trajectory, treatment options, and best practices for caring for the individual with Lewy body dementia as well as their caregivers.
- The webinar will pay particular attention to ethnic and racial minorities as well as available supports for individuals.
- The presenter will provide a case scenario to the webinar attendees and participants will be encouraged to answer questions and provide suggestions for how to handle the case.
- Flashcards will be available to allow participants to test their knowledge before and after the webinar.
TARGET AUDIENCE
The series addresses professional service providers which include medical doctors, registered nurses, social workers, geriatric care managers, gerontologists, gerontology students, counselors, ombudsman/patient advocates, and family caregivers.
PRESENTERS
Charles E. Driscoll, MD, is an emeritus clinical professor of family medicine at the University of Virginia and a clinical associate professor of family medicine at Virginia Commonwealth University in Richmond.
He is board certified in family medicine and geriatrics with special interest in dementia and frailty in the elderly. Together with his wife Jean Driscoll, MS, he founded and facilitated for three years the single accredited Lewy Body Dementia support group in Virginia after both served as caregivers for close family members with LBD.
Angela Taylor is the Director of Programs for the Lewy Body Dementia Association. In 2004, Angela joined LBDA as a member of LBDA’s Board of Directors when she was a caregiver for her father who had Lewy body dementia.
Angela now oversees all of LBDA’s programs and services, advocates to federal agencies on behalf of LBD families, and serves as the liaison to the Scientific Advisory Council.
MODERATOR
E. Ayn Welleford, PhD, 
received her BA in Management/Psychology from Averett College, M.S. in Gerontology and PhD in Developmental Psychology from Virginia Commonwealth University. She has taught extensively in the areas of Lifespan Development, and Adult Development and Aging, Geropsychology, and Aging & Human Values. As an educator, researcher, and previously as a practitioner she has worked with a broad spectrum of individuals across the caregiving and long term care continuum.
As Associate Professor and Chair of VCU’s Department of Gerontology, she currently works to “Improve Elder Care through Education” through her Teaching, Scholarship, and Community Engagement. Outside of the classroom, Dr. Welleford provides community education and serves on several boards and committees.
Dr. Welleford is former Chair of the Governor’s Commonwealth of Virginia Alzheimer’s and Related Disorders Commission, as well as a recipient of the AGHE Distinguished Teacher Award. In 2011, Dr. Welleford was honored by the Alzheimer’s Association at their annual Recognition Reception for her statewide advocacy. Dr. Welleford is the author of numerous publications and presentations given at national, state and local conferences, community engagement and continuing education forums.
In 2012, Dr. Welleford was appointed to the Advisory Board for VCU’s West Grace Village project. She is also the recipient of the 2012 Mary Creath Payne Leadership Award from Senior Connections, the Capital Area Agency on Aging.
QUESTIONS and ANSWERS
We thank Dr. Driscoll and Ms. Taylor for the additional time taken to respond to these audience-posed questions.
Q: Aricept is effective with Lewy Bodies? I had learned that it is effective with AD but has no effect with Lewy Bodies, does not work.
Aricept is an cholinesterase inhibitor medication and works well for many of the cognitive symptoms of DLB. Though of little help for memory (true of AZD as well), it is especially helpful to control behavioral aggresiveness, delusions and hallucinations, and other neuropsychiatric symptoms (e.g. anxiety, aberrant motor behavior, apathy, and indifference). They do not work acutely and are rather a long term solution. Reference Galvin, J.E., et al, Current Issues in Lewy Body Dementia Diagnosis, Treatment, and Research on LBDA.org web site.
Q: How can you differentiate fluctuating symptoms from delirium?
Fluctuations of cognition and levels of alertness are sometimes difficult to differentiate from stroke or seizures, but are not associated with the acute onset and shorter duration of delirium. The fluctuations are pretty dramatic with hypersomnolence, periods of almost near normal cognition, and prolonged staring spells. Speech can be slurred. I have seen many patients become unresponsive with normal vital signs and stay that way for hours or even up to two days without taking food or water. Recovery can be equally dramatic.
Q: I wondered if haldol can ever safely be given in a smaller dose, like the valium.
If 50% of patients experience a severe or dramatic reaction to these drugs, that means that 50% do not. Unfortunately, there is no way to predict which patients will have a dangerous reaction, so why take a chance? SSRIs are good medications to trial for controlling anxiety and depression and would be a better first line choice than valium. The atypical antipsychotics are recommended for acute behavior control rather than Haldol. An ECG would be advised prior to initiation of the drug if time permits as the cardiotoxic effects are also worrisome.
Q: What is the prevalence of DLB between men and women?
Slightly more in men than women, but about equal with the ration approaching 1.
Q: My mother is 85 and has DLB. She has incontinence and is on detrol. You are recommending not taking this drug. What do you recommend to help incontinence?
Detrol has anticholinergic effects which decrease brain activity. If the patient is alreading taking it and experiencing no problems, continue and watch closely for any increase in delusions, hallucinations, confusion or agitation. A trial off the detrol may show improvement in cognitive symptoms. I always recommend bladder training and behavioral control over medications. Voiding diary, scheduled toileting, using superabsorbent diapers, etc.
Q: Many of the symptoms for LBD, particularly those related to the sleep problems as well as the problem with memory, and audio/visual hallucinations sounds a lot like PTSD symtomology. Furthermore the case scenario of Hal and one of the clients discussed who was a retired colonel are (assumed) veterans during time periods where knowledge of PTSD was a lot less common or there were less evidence based supportive therapies to address and treat PTSD. Is there a possiblity of a link between decades of untreated PTSD and LBD? Or rather, could it be more so that in the cases of the vetarans discussed, the LBD was really more so the ravages of decades of untreated PTSD, and the accompanying physiological impacts we know that prolonged, acute stress has on the brain?
One of the cases I reported was a Colonel in the Air Force. He was a number-cruncher, flew a desk not a plane, and never saw any combat action. I am certain he did not suffer from PTSD based on his history. The second veteran was in combat, but according to his family had made smooth readjustment after the war (Korean) and did not have problems until his dementia surfaced. PTSD is an over-looked condition and your comment reminds us to maintain vigilance for it.
Q: Please discuss if possible the bio-psychosocial assessment and treatment strategies for aggression, including not stopping medication regimens that have been shown to work. We see high relapse rates associated with NH’s stopping medications, resulting in relapse of violence….
Medications are not the only answer to behavior control. Factors that play a role in the disordered behavior need to be searched for and corrected. Excessive lighting, fear, daily routines like bathing, pain, a high level of stimulation, sleep loss, etc. all need to be addressed. Arguing, punishment, or trying to convince a patient their actions are wrong or need to change is fruitless. Redirecting and tasking (e.g. a small box of Legos or folding napkins) can be useful. Music therapy can be of help. Snoozalin therapy has shown some success as have the same behavioral therapies used on autistic children. When medications are needed, cholinesterase inhibitiors and atypical antipsychotics are preferred approaches.
Q: Are you aware of LB support groups in Virginia – specifically the Shenandoah Valley area?
There are currently two support groups in Virginia, one in Fairfax and one in Lynchburg. The details on those groups can be found at https://lbda.org/sptgroups/%2A/node?field_state_value_many_to_one%5B%5D=VA. There are also virtual communities for LBD caregivers which you can find here: https://lbda.org/content/virtual-groups. LBDA also provides volunteer training to anyone who wants to start a support group in their community. You can contact LaToysa Scaife-Rooks at lrooks@lbda.org or start the volunteer orientation process by watching our short training online, found here: https://lbda.org/go/volunteer.
Q: what was the name of the study on Adult Day Services?
The study was called the Daily Stress and Health (DaSH) Study, by Steve Zarit, PhD, and collegues. LBDA published two articles in our e-newsletter about the findings of the study, which you can read here: https://lbda.org/content/new-study-shows-caregivers-benefit-adult-day-services and https://lbda.org/content/adult-day-service-boosts-beneficial-stress-hormone-caregivers.
The Other Dementias: Virtual Training and Active Learning on Non-Alzheimer’s Dementias series
is made possible through a grant from the
Virginia Center on Aging’s Geriatric Training and Education Initiative.
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