Lewy body dementia

The Alzheimer’s disease and dementia series

Michigan Alzheimer's Disease Center has established support groups for people with Lewy body dementia and their caregivers.

In partnership with a caregiver, Michigan Alzheimer’s Disease Center is offering support groups for people with Lewy body dementia and their caregivers.

Lewy body dementia (LBD) is the second most common form of degenerative dementia in the United States. LBD affects an estimated 1.4 million Americans. The symptoms of LBD are often mistaken for more well-known diseases like Alzheimer’s and Parkinson’s disease. They are so similar that only 30-50% of all LBD cases are accurately diagnosed.

What makes LBD different? 

The presence of Lewy bodies—abnormal deposits of the protein alpha-synuclein that build up in the brain—distinguish LBD from other dementias. The Lewy bodies are tiny spherical structures that develop inside nerve cells. Their presence leads to the degeneration of brain tissue. 

LBD is an umbrella term for two related diagnoses: Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB).

Early symptoms of Lewy body dementia

Some of the most common early symptoms of LBD include:

  • Acting out dreams
  • Loss of initiative
  • Hallucinations
  • Trouble with balance

When the Lewy bodies begin in the back of the brain, difficulty with motor and balance skills are the initial, most prevalent symptoms. For other people, the Lewy bodies begin in the front of the brain and symptoms generally affect cognition first and movement in later stages of the disease.

While the earliest symptoms of LBD and PDD are different, they reflect the same underlying biological changes in the brain. Over time, almost all adults with LBD will develop similar cognitive, physical, sleep and behavioral symptoms.

New Lewy body dementia support groups

In partnership with Tamara Real, who cared for her husband while he had LBD, the Michigan Alzheimer’s Disease Center (MADC) is now offering a support group for family care partners of adults with LBD, as well as a simultaneous support group for those living with LBD.

Meetings are held the first Tuesday of each month from 2-3:30 p.m. at Huron Woods, located on the campus of St. Joseph Mercy Ann Arbor Hospital, 5301 McAuley Dr., Ypsilanti, MI 48197.

If you’re interested in attending a support group or would like more information, please call the MADC at 734-936-8803. You may also e-mail stepcamp@umich.edu for information about the caregivers group.

Next steps

Erin_MobleyErin Mobley is an intern at the Michigan Alzheimer’s Disease Center Outreach Recruitment and Education department. Mobley received her bachelor’s degree in the social sciences from Michigan State University and is pursuing a dual master’s degree from the University of Michigan in public health and in social work, with a focus on aging.



MADC logoThe Michigan Alzheimer’s Disease Center (MADC) was established at the University of Michigan Health System through affiliation with the Department of Neurology and aims to conduct and promote research on Alzheimer’s disease and related disorders; ensure state-of-the-art care for individuals experiencing cognitive impairment or dementia; and enhance the public’s and health professionals’ understanding of dementia through education and outreach efforts. The infrastructure of the Center stems from a 20-year history as an NIH-funded Alzheimer’s Disease Research Center.