1/25/2012 – What would you do if your parent was diagnosed by a series of different doctors first with Alzheimer’s disease, then Parkinson’s disease, and then Lewy body dementia (LBD)? How would you know who to trust? After three confusing diagnoses and years of unanswered questions, Norma Loeb turned to the Internet. A visit to the Lewy Body Dementia Association’s (LBDA) website revealed that her mother, Lillian, had nearly all of the most common symptoms associated with LBD.
Lewy body dementia is a degenerative brain disease that progressively impairs a person's thinking and movement, as well as impacts their behavior and sleep. Although it affects an estimated 1.3 million people in the U.S., LBD is most often misdiagnosed as Alzheimer's disease or Parkinson's disease. LBD features progressive dementia, plus varying combinations of other symptoms like parkinsonism, hallucinations, fluctuating levels of cognitive abilities and attention, sensitivity to certain medications to treat behavioral problems and REM sleep behavior disorder, where person moves about in their dreams, sometimes violently.
But it was in talking with other LBD caregivers through virtual LBD caregiver communities that one symptom finally settled Norma’s question. Lillian thought someone replaced her home with an exact duplicate. This delusion is called Capgras syndrome and when Norma learned that other LBD caregivers reported this problem regularly, she knew she finally had the right answer. She became a regular participant in the online LBD caregiver community and met volunteers from the Lewy Body Dementia Association.
About 5 years ago, Norma was encouraged by LBDA volunteers to launch an LBD caregiver support group in her community. Norma readily agreed and launched a group in Manhattan, where she met other LBD caregivers with very common experiences, such as delayed diagnosis or multiple misdiagnoses, problems with medication side effects, behavioral challenges and high caregiver stress levels. “I think the reason the group continues is that we are people who understand LBD, and it’s not the same as going to an Alzheimer’s or Parkinson’s group,” stated Norma. As her support group grew in size, Norma launched a second support group in Long Island, NY. Loeb said, “Being connected with other LBD caregivers virtually was a tremendous advantage and provided lots of information, which I have been able to pass on to others in my community.”
As time passed, her involvement expanded to include inviting LBD expert speakers to her group, and taking the initiative to promote LBD awareness to journalists. She also served as the point person for grass roots volunteers who gathered in Manhattan to promote LBD awareness through their presence in the audiences of major network morning shows. For her outstanding commitment to increasing LBD awareness and providing outreach and support to LBD families, the Lewy Body Dementia Association named Norma Loeb LBDA’s Volunteer of the Year for 2011.
“Norma has touched the lives of hundreds of people in New York City and her effort to support national LBD awareness has been tremendous,” stated Angela Herron, President of LBDA’s Board of Directors. “She is a testimony to the power of what one person can do to make a difference in the lives of others, both near and far.”
Quick facts about LBD:
- LBD is more common in men than women.
- People with LBD are more functionally impaired than people with Alzheimer's disease with similar cognitive test scores.
- There is a shorter disease course in LBD to both long term care admission and death than in Alzheimer's disease.
- People with LBD may respond more favorably to certain dementia medications than people with Alzheimer's
- People with LBD respond more poorly to certain medications for behavior and movement than people with Alzheimer's or Parkinson's, sometimes with dangerous or permanent side effects.
The Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA's Scientific Advisory Council is comprised of leading experts from the United States, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit www.lbda.org.