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.
Activities of the Rinne Lewy Body Dementia Initiative:
- 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
Rinne Lewy Body Dementia Initiative Manager, Renee Gadwa, shares more about Lewy body dementia and the activities of the Rinne Lewy Body Dementia Initiative in this video.
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.
We are pleased to offer several virtual and in-person 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.
For in-person support group meetings, registration is not required. Registration for virtual support groups is required to receive a link for the meeting and the registration form is located here.
First-time attendees, and anyone with questions, please contact Meagan McGee at firstname.lastname@example.org or 734-615-1715.Virtual Afternoon Support Group
This support group meets via Zoom on the second Tuesday of each month from 2 - 3 p.m. for caregivers and 3 - 4 p.m. for individuals living with LBD. All caregivers and individuals living with LBD are welcome to attend.
Registration for virtual support groups can be found here.Virtual Evening Support Group
This support group meets via Zoom on the second Tuesday of each month from 6 - 7 p.m. for caregivers. All caregivers are welcome to attend.
Registration for virtual support groups can be found here.Boyne City In-Person Support Group
This support group for caregivers and those living with LBD meets on the second Tuesday of each month from 1 - 3 p.m. This group meets at Boyne District Library, 201 E Main St, Boyne City, MI 49712.
Contact Mary Whitlock at email@example.com or 231-350-8283 with questions or if you plan to attend.Ann Arbor In-Person Support Group
This support group for caregivers and those living with LBD meets on the fourth Thursday of each month from 2 - 3 p.m. This group meets at the Michigan Alzheimer's Disease Center, 2101 Commonwealth Blvd, Suite D, Ann Arbor, MI 48105.
Contact Meagan McGee at firstname.lastname@example.org or 734-615-1715 with questions or if you plan to attend.Traverse City In-Person Support Group
This support group for caregivers and those living with LBD meets on the second Thursday of each month from 1 - 3 p.m. This group meets at Peninsula Community Library, 2893 Island View Road, Traverse City, MI 49686.
Contact Mary Whitlock at email@example.com or 231-350-8283 with questions or if you plan to attend.
For a one page flyer on Lewy body dementia, click here.
Are you interested in viewing LBD educational videos? Review presentations from national leaders in LBD here.
Lewy Body Dementia Association Announces 22 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 22 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.