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Hard Road to Diagnosing Lewy Body Dementia


Watch Robin and Lis discuss their long road to getting a correct LBD dementia diagnosis. This diagnosis can be vital, yet 50% of people with Lewy Body Dementia are originally misdiagnosed.

Lewy body disease is a common neurodegenerative disease of ageing. This means that the disease causes gradual brain damage. For reasons not fully understood, it occurs when there is an abnormal build up of a protein called alphasynuclein in brain cells.

Continued below video…

These abnormalities occur in specific areas of the brain, causing changes in movement, thinking and behaviour. Lewy body disease is one of the most common types of dementia. Unlike Alzheimer’s disease, it is not well known.

Lewy body disease includes three overlapping disorders:

  • Dementia with Lewy bodies
  • Parkinson’s disease
  • Parkinson’s disease dementia

This overlap results in the disease being called a spectrum disease.

In this video, Robin Groves and his wife Lis discuss how they finally obtained a Lewy body disease diagnosis, and discuss some of the challenges they have faced.

To learn the warning signs of Lewy Body dementia, the Lewy Body Disease Association offers these helpful indicators:

Lewy Body Dementia Symptoms and Diagnostic Criteria

Alzheimer’s Australia
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September 30, 2018 2:38 pm

Yes, it was difficult to diagnose when a friend had it in 2007. She had very vivid visual hallucinations and her cognition went form normal in one moment to not so much the next moment.

May 2, 2021 6:35 pm

My husband who was diagnosed in 2017 actually had visual/special distortions which were disruptive to our lives and his ability to do certain things as far back as 2007.

B. Berger

B. Berger

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This site was inspired by my Mom’s autoimmune dementia.

It is a place where we separate out the wheat from the chaffe, the important articles & videos from each week’s river of news. With a new post on Alzheimer’s or dementia appearing on the internet every 7 minutes, the site’s focus on the best information has been a help to many over the past 15 years. Thanks to our many subscribers for your supportive feedback.

The site is dedicated to all those preserving the dignity of the community of people living with dementia.

Peter Berger, Editor


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