Lewy body dementia occurs because of abnormal deposits of a protein called alpha-synuclein that develop inside the brain’s nerve cells. The deposits are called ‘Lewy bodies’ after the scientist who first described them, Dr. Freidrich Heinrich Lewy. Lewy body dementia accounts for between 5 and 10% of all dementia cases.
These protein deposits – or Lewy bodies – typically affect the areas of the brain that involve thinking and movement. The built-up mass of Lewy bodies block messages between brain cells, leading to dementia.
Lewy bodies are also found in Parkinson's disease. When Lewy bodies first appear in the part of the brain responsible for thinking, the term Lewy body dementia is used. When Lewy bodies first appear in the part of the brain responsible for movement, the term Parkinson's disease dementia is used.
Lewy body dementia can also be referred to as:
- Dementia with Lewy bodies or
- Lewy body disease.
Lewy body dementia can cause symptoms that are similar to both Alzheimer’s disease and Parkinson’s disease.
- People living with Lewy body dementia commonly experience a progressive loss of memory, language, reasoning and other higher cognitive functions, like the ability to calculate numbers.
- Unlike Alzheimer's disease, memory loss may not occur at the early stages of the disease. Difficulties with planning, organizing, and marked fluctuations in attention and alertness may be some of the first symptoms. The person may also experience changes to visual-spatial perception in the early stages.
- Other symptoms of Lewy body dementia can include:
- Difficulty with short-term memory, finding the right words to use, or maintaining a train of thought.
- Depression and anxiety.
- Changes in sleeping patterns, including feeling tired during the day and alert throughout the night.
- Visual hallucinations and seeing things that are not real (hallucinations often include people, children, and animals who are not present).
- Mistakes in perception of objects or textures (for example, seeing faces in a carpet pattern).
- Motor symptoms of Parkinson's disease, which may include stiffness of muscles, tremors (shaking), stooped posture or slow, shuffling movements.
- Acting out one's dream. This may occur years before the development of other symptoms.
No single test can diagnose Lewy body dementia.
Doctors typically diagnose Lewy body dementia by eliminating other diseases and conditions that cause similar symptoms.
Common assessments can include a neurological exam to assess:
- The way a person walks (referred to as a ‘gait analysis’),
- Posture and
- How rigid or stiff the person’s body is.
Other measures to assist in a diagnosis include:
- Obtaining a detailed medical history,
- Brain imaging (e.g. MRI) and
- Physical and neuropsychological testing.
Doctors do not know what causes Lewy body dementia.
However, Lewy bodies have a protein that is also seen in Parkinson’s disease, suggesting the conditions may be linked in some way.
If a family member has Lewy body dementia, you may have a higher risk of developing the disease. Lewy body dementia is also more common in men than in women. More research is being done to understand Lewy body dementia.
Unfortunately, there is currently no known cause of Lewy body dementia. However, it is sometimes possible to treat symptoms using medications associated with treating Alzheimer's disease, Parkinson's disease and hallucinations.
Cholinesterase inhibitors are medications used to treat Alzheimer’s disease. They can improve alertness and cognition in some people with dementia and may reduce hallucinations and other distressing symptoms. However, due to the multiple types of symptoms of Lewy body dementia and Parkinson’s disease, treatment of one symptom may worsen another. One strategy to prevent this is to treat symptoms in order of their severity.
Behavioural therapeutic strategies also help people living with Lewy body dementia. This can include using physical activity and music as treatments. Research shows that quality of life for people living with dementia and their caregivers is significantly improved by activities that use strengths and abilities. By understanding a person’s personality, life experiences, support systems and ways of coping, a person-centred approach to care can preserve and improve quality of life for the person living with Lewy body dementia.
More links, downloads and resources
Lewy body dementia. Alzheimer Society of Canada, 2022. This downloadable PDF brochure contains additional details on Lewy body dementia beyond the content of this website page.
The Lewy Body Dementia Association (LBDA). The LBDA offers information, supports and resources for people living with Lewy body dementia.
Lewy body dementia: Information for patients, families and professionals. National Institutes of Health (NIH), 2018. This U.S.-focused comprehensive resource covers symptoms, risk factors, management techniques, and advice for carers and family members.
The spectrum of Lewy body disease: Dementia with Lewy bodies and Parkinson’s disease dementia. brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium on Neurodegeneration in Aging (CCNA), 2012. This webinar covers neurodegenerative disorders characterized by accumulation of Lewy bodies in brain cells. Presented by Mario Masellis, MSc, MD, PhD, FRCPC, Clinician Scientist and Associate Professor, Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto.
An update on Lewy body spectrum disorders. brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium on Neurodegeneration in Aging (CCNA), 2020. This is an update on the 2012 webinar on Lewy body disease. Presented by Mario Masellis, MSc, MD, PhD, FRCPC, Clinician Scientist and Associate Professor, Division of Neurology, Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto.
Rare Dementia Support Canada. Provides a free specialist Information and support service for people living with, or affected by, a diagnosis of rare or young onset dementia.
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