Lewy Body Dementia Research Center of Excellence at University of Miami
The LBD Research Center of Excellence (RCOE) at the University of Miami (UM) is hosted at the Miller School of Medicine, Department of Neurology within the Comprehensive Center for Brain Health (CCBH). The RCOE is led by Dr. James Galvin, a world-renown neuroscientist and leading international expert on Lewy Body Dementia (LBD) and Alzheimer’s Disease (AD), and the Neurology Cognitive Sciences Chief for Palm Beach and Broward Counties, who also directs the CCBH.
The RCOE program provides a centralized, coordinated research resource, supporting an expanded effort in conducting clinical trials related to LBD. Using a collaborative care model with neurologist, nurse practitioners, a licensed clinical social worker, psychometricians, and a physical therapist, the RCOE program helps provide cutting-edge personalized care for patients, families, and caregivers affected by neurodegenerative diseases including Lewy Body Dementia and Alzheimer’s Disease. This includes supportive services to research participants and patients with LBD and other neurodegenerative disorders and their families and caregivers such as: monthly LBD caregiver support group available in person or virtual; and individual, couple, or group psychotherapy sessions to improve patient and caregiver mental health and quality of life led by the licensed clinical social worker. Other supportive services offered include integrative nutrition services and life couching by a certified integrated nutrition and life couch, and clinical care follow-up by two full-time geriatric nurse practitioners.
Dr. Galvin and his team have also recently published a peer-reviewed paper supporting the utility of the Lewy Body dementia module (LBD-MOD) for the characterization of core and supportive LBD and MCI-LBD features and its use to clinically differentiate DLB from AD and cognitively normal controls, adding to the efforts to improve LBD diagnosis and advance research and therapeutic developments to better serve the DLB community. The article is available here.
In addition, to promote community and clinician LBD education, the RCOE team holds community talks and webinars (link to News feed tab), offers an annual Research Participant Conference to provide updates on LBD and other dementia research (link to News feed tab), provides Clinical Partner Rotations for clinicians interested in the newest LBD diagnosis and management modalities (link to Clinical Partner Rotations tab), and is building an Externship Network of industry collaborators to stimulate the development of pharmacological and non-pharmacological LBD therapies (link to Externship Network tab).
For more information on the UM Research Center of Excellence, see this magazine interview or this video interview by Dr. Galvin on LBD.
LBD Support Groups
DLBA Support Group
The Mindful Caregiver Psycho-educational Support Group
This support group meets twice a month on the 2nd and 4th Thursday of the month at 12pm for one hour. This group is organized and led by Iris Cohen, LCSW a social worker at the Comprehensive Center for Brain Health.
DLBA Support Group
The DLBA support group is offered on the first Thursday of the month at 12pm to care partners of patients that are diagnosed with Lewy Body Dementia. The meeting usually lasts 90-120 minutes in total. The group is facilitated by Iris Cohen, LCSW a social worker at the Comprehensive Center for Brain Health.
The group currently meets via Zoom due to Covid-19 restrictions. As a result, the monthly group meetings have grown from 6-10 participants in person per meeting to 15-20 participants per meeting via an online platform. This allows for people who previously could not attend the meeting due to distance and time restrictions to participate.
This is a traditional support group in which participants are encouraged to share from their own experiences talking about challenges and difficulties, emotions, and feelings. The group provides support to one another through advice and normalization and validation of experiences in a safe and supportive environment.
The Mindful Caregiver Psycho-educational Support Group
This is a psycho-educational group offered to members of the larger DLBA support group.
This support group meets twice a month on the 2nd and 4th Thursday of the month at 12pm for one hour. This group is organized and led by Iris Cohen, LCSW a social worker at the Comprehensive Center for Brain Health.
This group meets via Zoom due to covid 19 restrictions. Participants are capped at 10 per meeting to ensure a sense of safe and intimate group environment where group members share freely.
This support group introduces principals of Mindfulness Based Interventions to aide in the difficult task of caregiving. Each session is designed to help caregivers learn tools and techniques that can be utilized to overcome the challenges they encounter during everyday life.
Education
Lewy Body Dementia Association
National Institute on Aging
Lewy Body Dementia Resources
NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
Call 800-438-4380
Toll-free 8:30am to 5:00pm Eastern Time, Monday-Friday)
adear@nia.nih.gov
www.nia.nih.gov/alzheimers
The National Institute on Aging’s ADEAR Center provides up-to-date research-based information concerning Alzheimer’s disease and related dementias (ADRD) to health professionals, people with ADRD and their families, and the general public. Free publications about ADRD symptoms, diagnosis, treatment, caregiving, and information about current clinical trials are provided and staff is available to answer specific questions and refer to local supportive services and Research Centers specialized in research and diagnosis.
Lewy Body Dementia Association
404-935-6444
800-539-9767 (toll-free LBD Caregiver Link)
Lewy Body Dementia Resource Center
833-LBDLINE (toll free)
norma@lbdny.org
https://lewybodyresourcecenter.org
Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
Email: info@caregiver.org
FCA CareNav: https://fca.cacrc.org/login
Support our Lewy Body Dementia Research Center of Excellence
LBD is the second most common cause of dementia yet lags significantly in Federal research funding compared with Alzheimer’s disease, Vascular dementia, and other causes. You can help us reach our goals of developing better diagnostics and better treatments. Click here to learn how to help.