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Lewy Body Dementia

Updated on January 30, 2013

What is Lewy Body Dementia (LBD)?

My mother in law was recently diagnosed with Lewy Body Dementia, so I decided to educate myself and others on the illness.

Lewy bodies are clumps of abnormal proteins found in brain cells. Lewy bodies can only be seen in autopsies. They've been found in the brains of Parkinson's patients who had dementia symptoms, patients who had a dementia similar to Alzheimer's, & patients who had distinct dementia symptoms. The exact relationship between the Lewy bodies, Parkinson's, Alzheimer's and dementia itself is uncertain.

Bootsie
Bootsie

Our Bootsie

In dealing with my mother in law's LBD, I'm discovering things that have calming effects on her. Elvis is one. She adores him, so I keep Elvis on all day for her. She also was feeling "useless". I put together gift baskets, and she used to make yarn coasters called mug rugs, so we gathered the material she needs to make them, and she's enjoying the feel of being useful, because I will now include one of her rug mugs in my gift baskets.

We are not her primary caregivers, but she responds well when she visits us. There are few outbursts, and I'm quickly learning how to divert her attention away from the sources of the ones she does have.

Bootsie's Mug Rugs

Bootsie's Mug Rugs
Bootsie's Mug Rugs

Facts abou LBD

  • LBD is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States, but many doctors or other medical professionals still are not familiar with LBD.
  • LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson's disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms. The characteristics of the final stage of Lewy body dementia will depend on whether it most resembles Parkinson's, Alzheimer's or distinct Lewy body dementia.
  • While it may take more than a year or two for enough symptoms to develop for a doctor to diagnose LBD, it is critical to pursue a formal diagnosis. Early diagnosis allows for important early treatment that may extend quality of life and independence.

    LBD is a multisystem disease and typically requires a comprehensive treatment approach. This approach involves a team of physicians from different specialties who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. Many people with LBD enjoy significant improvement of their symptoms with a comprehensive approach to treatment, and some can have remarkably little change from year to year.

  • Some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer's or Parkinson's in addition to certain over-the-counter medications.
  • If you have a loved one who has frequent hallucinations or other signs of dementia, please suggest the possibility if LBD to their physician, as it is frequently overlooked.

Have you ever dealt with LBD? Did this information help you at all?

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    • MartiLawrence profile image

      Marti Lawrence 4 years ago from Grain Valley, Missouri

      Great lens! My moth-in-law also suffered LBD and it was devastating. I was her primary caregiver and had never heard of this disease. We knew she had Parkinson's for several years, but the dementia was only the last 18 months or so of her life. She passed away in July. I had a lot of trouble finding information about the disease and doctors who understood what was happening.

    • profile image

      GentlemenGogoVEVO 5 years ago

      Good morning, yes thank you nice!

    • hprudavis profile image

      hprudavis 6 years ago

      Really good lens. Thank you for putting this work into raising awareness. I was searching Parkinson's because I was recently prescribed a parkinson medication to control my shaky hands. I just want to do a little (muy pequena) research to try and prepare myself in case I have something nobody wants to tell me about! It's okay, I'm not being a hypochondriac, just peeking at some stuff in case... Thank you.

    • Lady Lorelei profile image

      Lorelei Cohen 6 years ago from Canada

      Good start to this lens.