Retired University of Michigan professor Carl Rinne lived a full life with his wife Tamara Real until he began to experience symptoms that did not make sense.
As is typical with Lewy body dementia, Tamara and Carl saw multiple doctors in various specialties before receiving the diagnosis of Lewy body dementia. Tamara resolved that others should not face the same uncertainty about a disease that often goes unrecognized.
To honor her husband and to help others in Michigan who face a future with Lewy body dementia, Tamara established the Rinne Lewy Body Dementia Initiative which is administered by the Michigan Alzheimer’s Disease Center at the University of Michigan.
Rinne Lewy Body Dementia Initiative Activities:
- Support care partners
- Support people with an early Lewy body dementia diagnosis
- Educate health care professionals
- Build public awareness of Lewy body dementia in Michigan
More about the Rinne Lewy Body Dementia Initiative can be found in the following, short video:
Image above courtesy of the Lewy Body Dementia Association.
Lewy Body Dementia (LBD) is a brain disease that affects thinking and often mobility. It is the third most common cause of dementia after Alzheimer’s disease and vascular dementia. Lewy body dementia accounts for up to 20% of all dementia cases in the United States. Click here for a one page informational flyer on Lewy body dementia.
The cause of Lewy body dementia is not known. It is rarely inherited. In Lewy body dementia, the brain contains abnormal protein deposits known as Lewy bodies enriched in the protein alphasynuclein. Lewy bodies also occur in Parkinson’s disease, but are less widespread in Parkinson’s disease. In addition to Lewy bodies throughout the brain, microscopic brain abnormalities found in Alzheimer’s disease are also present with Lewy body dementia.
A person with Lewy body dementia may experience:
- Cognitive difficulties
- Visual hallucinations
- Significant day-to-day fluctuations in abilities
- Stiffness and slowness of movement
- Poor balance with falls
- Fainting or other periods of unresponsiveness
- Acting out dreams
Lewy body dementia is often confused with Alzheimer’s disease or Parkinson’s disease. Accurate diagnosis is critical because people with Lewy body dementia have distinct symptoms that require different treatment strategies and may be sensitive to certain medications. A diagnosis of Lewy body dementia is made after a thorough evaluation, which includes a discussion of symptoms, a physical examination and diagnostic testing. Blood tests and brain scans are often performed. The diagnosis may be confirmed after death with a brain autopsy showing Lewy bodies.
Prognosis & Treatment
Lewy body dementia worsens over time (years) and impairs the individual’s ability to live and function independently. Though there is no known cure for Lewy body dementia, three types of medications may be used to treat it:
- Cholinesterase inhibitors such as Aricept, Razadyne, or Exelon;
- Drugs used to treat people with PD (such as Sinemet); and
- Drugs for visual hallucinations and behavioral problems.
Where can I learn more?
More information about Lewy body dementia can be found at:
- The Lewy Body Dementia Association: Online here or by calling 404-935-6444.
- The Alzheimer’s Association: Online here or by calling 800-272-3900.
- The National Institute on Aging: Online here or by calling 800-438-4380.
The Rinne Lewy Body Dementia Initiative is a program of the Michigan Alzheimer’s Disease Center at the University of Michigan. This initiative supports those living with Lewy Body Dementia and their care partners, improving awareness of Lewy body dementia among healthcare professionals and the general public and advancing our understanding and treatment of this disease.
The success of finding new treatments in Lewy body dementia depends on having volunteers to participate. Below is a list of research studies offered by our Center for individuals living with Lewy body dementia and their caregivers.
If you are interested in joining a study, please contact Kate Hanson at firstname.lastname@example.org to complete a Research Volunteer Form.
Studies Looking for Individuals Living With LBD And Their Caregivers To Participate TogetherUniversity of Michigan Memory and Aging Project (UM-MAP)
Our main Center longitudinal study investigates changes in cognitive functioning over time to learn more about normal aging and neurodegenerative diseases. We are looking for adults with or without cognitive changes over the age of 55. This study sees participants in both Ann Arbor and Detroit. Contact Holly Bunker at email@example.com or 734-615-5319.COVID-19 Coping and Resilience Care Partners Study (CARE)
This study investigates experiences among couples living with dementia during the COVID-19 (coronavirus) pandemic to learn more about ways to help both partners live well together. Study is looking for couples (married or living together) residing in Michigan in which one partner has received a diagnosis of dementia within about 5 years or has early symptoms of dementia. This study sees participants by phone. Contact Diarratou Kaba at C19carepartners@umich.edu or 734-232-4565.Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of Life Experiences (PACE-DLB)
This study aims to understand what changes might predict the end of life in people living with DLB to help patients, caregivers, families, and health care professionals know what to expect in later stages of DLB. The study is looking for individuals with at least moderate stage DLB and their main caregiver, and the caregiver must be able to answer questionnaires related to the DLB and caregiver experience. This study sees participants virtually or by phone. Contact Kelly Mattingly at firstname.lastname@example.org or 734-223-9297.Repairing Sleep for Persons Living with Cognitive Impairment and their Caregivers (Repair Sleep Study)
This study is examining whether a videoconferencing behavioral intervention for sleep troubles provided to both persons living with cognitive impairment and their caregivers is practical, useful, and improves sleep. This study is recruiting both persons living with MCI or mild to moderate dementia and their care partners. Contact Dr. Glenna Brewster at email@example.com or 404-712-9164. This study is delivered all online. A study flyer is available here.
Studies Looking for Individuals Living with LBDEarly Serotonin System Changes in Prodromal Dementia with Lewy Bodies
This study aims to understand whether the brain’s serotonin system is a critical modifier of disease burden in Dementia with Lewy Bodies (DLB). The study is looking for interested participants with DLB age 60 or older and not on serotonin medications. This study sees participants in Ann Arbor. Contact Cate Lewis at firstname.lastname@example.org or 734-232-1199.Lewy Body Dementia Biomarkers
This study investigates new brain imaging approaches that investigators hope will identify protein accumulations in the brain of individuals with Parkinson’s disease-related dementia. The study is looking for adults age 55 and older with Parkinson’s disease dementia, DLB, or AD. This study sees participants in Ann Arbor. Contact Ishita Ghosh at email@example.com or 734-936-1035. A study flyer is available here.Stimulation of Cingulo-opercular Alertness Network (SCAN)
This study examines the use of transcranial electrical stimulation (tES) as a potential treatment for cognitive challenges in those living with Lewy body dementia (LBD). The study is looking for adults diagnosed with LBD who are over the age of 50. This study sees participants in Ann Arbor. Contact Max Padgett at firstname.lastname@example.org or 734-764-4446.
Studies Looking for Caregivers of Someone Living with LBDThe STYLE Caregiving During COVID Study (COVID STYLE)
This study investigates the dementia caregiving experience during the COVID-19 pandemic and how the pandemic and shelter-in-place policies impact caregivers’ mental health and health services use. The study is looking for primary caregivers for a friend or family member with a diagnosis of dementia. This study sees participants virtually or by phone. Contact the study team at email@example.com or 734-623-9911.A Web-Based Tool to Improve Quality of Life for Military Veterans with Dementia and their Caregivers (WeCareAdvisor)
This study is seeking caregivers to test the WeCareAdvisor, a web-based tool that aims to help users learn more about and manage behavioral and psychological symptoms of dementia like wandering, repeated questioning, anger, depression or apathy. The study is looking for participants who have access to a computer or mobile device with internet and are also the primary in-home caregivers for a military Veteran who is living with dementia. This study sees participants virtually. Contact Barbara Stanislawski at firstname.lastname@example.org or 734-232-0323.
Please note: Due to the COVID-19 pandemic, most in-person Lewy body dementia support groups we offer are currently meeting virtually. For details on specific group meeting format, see the group location listing below.
We are pleased to offer several monthly support groups across the state of Michigan specifically for Lewy body dementia. Newcomers are always welcome and should contact us (contact information below) to ensure time and location information is accurate.
While our support groups are meeting virtually, we do hope that attendees register for the support group that they plan to attend once in-person meetings are in session again. Registration for support groups is required while we meet virtually. To protect everyone’s privacy, those who do not register for a support group will not receive a link for the meeting.
First time attendees, and anyone with questions, please contact Renee Gadwa at email@example.com or 734-764-5137.
Registration for virtual support groups is located here.Virtual Afternoon Support Group
This support group meets via Zoom on the 2nd Tuesday of each month from 2:00-3:00 PM for caregivers and 3:00-4:00 PM for individuals living with LBD. All caregivers and individuals living with LBD are welcome to attend.Virtual Evening Support Group
This support group meets via Zoom on the 2nd Tuesday of each month from 6:00-7:00 PM for caregivers. All caregivers are welcome to attend.Boyne City In-Person Support Group
This support group for caregivers and those living with LBD meets on the 2nd Tuesday of each month from 2:00-3:00 PM. *This group meets at Sommerset Pointe Yacht Club and Marina, 00970 Marina Drive, Boyne City, MI 49712.
Contact Mary Whitlock at firstname.lastname@example.org or 231-350-8283 with questions or if you plan to attend.
For a one page informational flyer on Lewy body dementia, click here.
Are you interested in viewing LBD educational videos? Review presentations from some of our previous visiting lecturers in the links below.“Lewy Body Dementia Update: Diagnosis, Management, and Future Directions” - October 30, 2019
Dr. Melissa Armstrong presents the 4th Annual Carl Rinne Lewy Body Initiative Lecture in conjunction with Neurology Grand Rounds on October 30, 2019. Dr. Armstrong is the Director of the Mangurian Clinical-Research Center for Lewy Body and Parkinson’s Disease Dementia at the University of Florida. Click here to view the presentation.“Lewy Body Dementia Basics & What to Know about Hospitalization in LBD” - October 29, 2019
Dr. Melissa Armstrong presents the 4th Annual Carl Rinne Lewy Body Initiative Community Presentation at the Kensington Hotel on October 29, 2019. Dr. Armstrong is the Director of the Mangurian Clinical-Research Center for Lewy Body and Parkinson’s Disease Dementia at the University of Florida. Click here to view the presentation."Lewy Body Dementia Update: Diagnosis, Management, & Future Directions" - October 24, 2018
Dr. Bradley Bouve presents the 3rd Annual Carl Rinne Lewy Body Initiative Professional Presentation in collaboration with U-M Neurology Grand Rounds on October 24, 2018. Dr. Boeve is the Little Family Foundation Professor of Lewy Body Dementia at Mayo Clinic in Rochester, Minnesota. Click here to view the presentation.“Understanding Lewy Body Dementia” - October 23, 2018
Dr. Bradley Bouve presents the 3rd Annual Carl Rinne Lewy Body Initiative Community Presentation at Huron Woods Retirement Community on October 23, 2018. Dr. Boeve is the Little Family Foundation Professor of Lewy Body Dementia at Mayo Clinic in Rochester, Minnesota. Click here to view the presentation.“How Do you Define a Disease? Lessons from Neurodegeneration” - October 18, 2017
Dr. James Leverenz presents the 2nd Annual Carl Rinne Lewy Body Initiative Lecture in conjunction with Neurology Grand Rounds on October 18, 2017. Dr. Leverenz is the Director of the Cleveland Lou Ruvo Center for Brain Health, and the Joseph Hahn, MD Endowed Chair of the Cleveland Clinic Neurological Institute. Click here to view the presentation.“Lewy Body Disorders” - October 30, 2015
Dr. Carol Persad presented "Lewy Body Disorders" at the University of Michigan Udall Center's Parkinson's Disease & You Symposium on October 30, 2015. Dr. Persad is a Clinical Professor and the Director of the Neuropsychology program at the University of Michigan. Click here to view the presentation.
The Lewy Body Dementia Association (LBDA) offers a variety of online support groups for those living with LBD and their care partners. More details below.LBDA Care Partner Facebook Support Group
A place to provide support and guidance as well as share information and resources. Membership is limited to care partners of those living with Lewy body dementia. Click here to access.Living with Lewy Facebook Support Group
A place to provide support and guidance as well as share information and resources. Membership is limited to those living with Lewy body dementia whether diagnosed or seeking a diagnosis. This group also offers a weekly virtual Zoom based support group. Click here to access.Living Together with Lewy Facebook Support Group
Living together with Lewy is an LBDA-sponsored Facebook support group for those living with Lewy body dementia (LBD) and their care partners. The goal of this group is to meet the needs of people who are newly diagnosed with LBD, those who have early symptoms of LBD, and those who anticipate a diagnosis of LBD. In addition to providing understanding and support to one another, members focus on topics such as maintaining independence, collaborating on care decisions, and promoting living well despite LBD. Both people living with LBD and their care partners are encouraged to join to unite into one group with mutual respect and shared insights. Click here to access.LBD Caring Spouses
An internet discussion forum support group for those whose husband or wife is living with one of the Lewy body disorders: Dementia with Lewy bodies (DLB) or Parkinson's Disease Dementia (PDD). Click here to access.
For those who are interested in at-home exercise programs, there are many resources offered free-of-charge. While these programs are aimed at people living with Parkinson’s disease, many who experience the motor difficulties associated with Lewy body dementia will benefit.Michigan Parkinson Foundation
The Michigan Parkinson Foundation offers both a power movement class and an adapted yoga class virtually for individuals with Parkinson’s. Available here.American Parkinson’s Disease Association’s Greater St. Louis Chapter’s YouTube channel
This channel can serve as your home base for online PD exercise since it hosts a large number of pre-recorded classes that you can watch and follow. There are archived classes that feature tai chi, yoga, interval training, kickboxing, chair exercises and more. Additional classes will be added over the next few days and weeks, so keep checking back. Available here.Dance for PD, administered by the Mark Morris Dance Group
This group offers specialized dance classes to people with Parkinson’s, their families, friends and care partners, typically held in person in eight locations around New York City. Since the in-person classes have been suspended due to the COVID-19 outbreak, Dance for PD is offering both free live classes (via Zoom) as well as a multitude of archived classes online for free. Check out the schedule and links for the live online classes, as well as the archived classes here.The Jamestown, New York YMCA
The Jamestown, New York YMCA has two short instructional online videos demonstrating Moving for Better Balance, a fall prevention program (Part I and Part II). Parts I and II take approximately 15 minutes if done together.
Part I is available here.
Part II is available here.Brain Grant Foundation
This webpage contains seven Parkinson’s exercise videos, including a warm up, lunges, tai chi, aerobics and agility, boxing, Parkinson’s boot camp, Pilates and yoga. Note: to access the videos you must click on ‘Read More,’ then scroll down on the subsequent page to find and start the video. Click here to access.Northwest Parkinson’s Foundation Live Streamed Yoga
Online streaming (and archived) 45-minute yoga classes, taught by Renee Le Verrier, a certified yoga instructor and person with Parkinson’s, and focused on areas particular to Parkinson’s. Supports: chair, wall, cushion, block, blanket - aid balance and reduce the fear of falling. Classes include step-by-step movements with variations; cues on how, what and where to notice yoga’s effects, relaxations techniques, tips to try, ways to apply yoga to everyday activities. Click here to access.Rock Steady Boxing Exercise Videos
This archive contains more than 50 short exercise videos in four categories: warm up, workout, CORE and stretch. You pick one video from each category and, by the time you’ve done all the exercises as many times as recommended, you have done a complete workout at home. Additional videos include exercise ideas, motivation, tips and tricks, and challenges, as well as Rock Steady Boxing event videos and personal stories. Available here.Ruth Davidson Hahn and Company Dance Classes
Ruth Davidson Hahn and Company specializes in Dance for Parkinson’s and Movement & Music classes. In light of COVID-19, the company has created a video archive of Parkinson’s dance classes found here.
Lewy Body Dementia Association Announces 24 Research Centers of Excellence
In April 2018, the Lewy Body Dementia Association (LBDA), the leading advocacy group dedicated to raising awareness and advancing research about Lewy body dementia, announced the launch of the LBDA Research Centers of Excellence (RCOE). This collaboration features 24 preeminent academic medical research centers across the United States, coordinated by Mayo Clinic.
The LBDA RCOE program will provide a centralized, coordinated research resource, supporting an expanded effort in conducting clinical trials related to Lewy body dementia while helping to provide expert clinical care for patients, families and caregivers.
The Michigan Alzheimer’s Disease Center is thrilled to have been selected as one of the best in Lewy body dementia research, clinical care, and supporting patients, families and caregivers.
For more on the Lewy Body Dementia Association Research Centers of Excellence, visit the site here.