Lewy Body Dementia - What are your questions?

Want to know how this disease occurs, symptoms and remedy

Thanks for your reply, Jodi. I am registered for the May 3 event and I'm looking forward to it. I am the mentor for the Parkinson's discussion group on Mayo Clinic Connect and I've had some members report on an LBD diagnosis, mainly of their loved ones.
I also had a friend whose husband was misdiagnosed as Alzheimer's and then later saw another specialist who corrected the diagnosis to LBD. She felt a lot of time was wasted treating him with Alzheimer's meds and I was just wondering how doctors are now progressing with correcting this. Specifically, what tests provide a correct diagnosis. She now has a support group for LBD caregivers.

I saw this blog in Connect and was curious because I had never heard of LBD. If others are interested in what it is, Mayo has good web page with basic info:
https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
Laurie

In this work, we often say, "if you know one person with dementia, you know ONE person". Your question doesn't have a cut and dry answer. It is different for everyone, and often depends on other factors like other health conditions such as diabetes and heart disease. Also, some people are diagnosed early in the disease process, and some later. Thank you for asking, because the more we talk about dementia, the more we can raise awareness and decrease stigma. People with dementia can and do live full lives, as those of us supporting them work to understand how to empower strengths and support needs.

My late mother-in-law had it. I took her to a Neuropsychologist for testing and then her new Geriatrician. We followed symptoms, prescribing small amounts of meds as needed. They watched her stand, sit, walk each time. We learned that many of her hallucinations were tied to urinary tract infections so as soon as they increased, I took her in for lab work. I received a lot of support and tips from a Lewy Body caregivers group on Facebook. It's a heartbreaking disease.

I would encourage you to register for our LBD Knowledge & Support Summit to hear from our experts and other professionals throughout the day, as well as take advantage of the post event educational videos that will be shared via Connect. Here is the link for the Summit: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

This is a great question because Lewy Body Dementia does present with different symptoms when compared to other types of dementia. I would encourage you to register for our LBD Knowledge & Support Summit to hear from our experts and other professionals throughout the day, as well as take advantage of the post event educational videos that will be shared via Connect. Here is the link for the Summit: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

I can answer specific to what we offer in the Mayo Clinic Alzheimer's Disease Research Center. If you go to the Dementia Hub main page, you will see two newsfeed posts on Caring Conversations, as well as Caring for Lewy. Both are virtual support groups with information dates/times hosted and how to register for the zoom link. Caring for Lewy also has an educational component where we bring in expert speakers a few times throughout the year. The LBD Summit is another example of educational programs that we provide to support families and caregivers. Here is that link: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

Stay tuned to "the Hub" for more information as our team will be posting about upcoming education & programs at Mayo and linking out to community resources as well.

I have LBD so I’m very interested

My husband talks during sleep. I ignore his talking and we both go back to sleep. Is this appropriate or should I wake him?