Lewy Body Dementia - What are your questions?

Apr 13, 2021 | Jodi Melius | @jodimelius | Comments (45)

During our upcoming Lewy Body Dementia Knowledge & Support Summit we will be hearing from leading experts on LBD!

What are your questions? Do you want to learn more about sleep, medications, movement? Or do you have general questions about Lewy Body Dementia?

What does it mean to live well with LBD, and how do caregivers and families find support and joy in this journey?

Please comment with questions!  We hope to see you at our upcoming LBD Summit on May 3rd!

 

Interested in more newsfeed posts like this? Go to the Dementia Hub blog.

How difficult is it for practitioners to differentiate between a diagnosis of LBD and other cognitive disorders like Alzheimer's, etc.?

Are there meds currently to treat LBD in the same way there are meds to treat Alzheimer's?

Generally speaking, how long does it take for a person to be diagnosed with LBD? Is there a particular pattern to the symptoms of LBD?

Are therapies, other than meds, available to treat LBD?

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What are clinical study updates? Better way to handle office visits with some private caregiver time before bringing in patient.

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I believe my mother died from LBD. She passed in October 2006. As both she and my sister lived in Florida and I was living in New England, my sister found 2 or three Nursing Homes for her. Every time she was given medication, she became worse. She would bite, kick, scream etc. She hated being placed in a geri chair. I went to a seminar about dementia a few yrs ago and the speaker mentioned that medication that can help people with dementia could cause the behavior of folks with LBD to become worse. Is this typical? Finally, my sister found a residential home licensed by the State as Assisted Living for four women. I think my mother was the only one in residence. She became calm and I assumed some of the meds were D/C. I believe she choked on some food, always pureed, and that caused her death. I see that as a blessing as she had no quality of life. But is it typical for people LBD to become worse when given meds that normally help people with dementia?

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@hopeful33250

How difficult is it for practitioners to differentiate between a diagnosis of LBD and other cognitive disorders like Alzheimer's, etc.?

Are there meds currently to treat LBD in the same way there are meds to treat Alzheimer's?

Generally speaking, how long does it take for a person to be diagnosed with LBD? Is there a particular pattern to the symptoms of LBD?

Are therapies, other than meds, available to treat LBD?

Jump to this post

These are excellent questions! First, I want to direct you to our upcoming LBD Summit on May 3rd. We will have expert presenters answering these very questions; as well as presenting a video series post event on these and other topics. Information and registration via this link: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

It can be difficult for practitioners to diagnose LBD if they have not been exposed to diagnostic information about this type of dementia. LBD can start with sleep disorders years to decades before other symptoms appear. Mental health symptoms such as depression, apathy and anxiety can also appear first, and be a primary focus before memory and other cognitive changes appear. In short, it is a complex form of dementia with many symptoms to piece together in making an accurate diagnosis. Mayo Clinic and other research centers are working hard to provide this information to providers, allied health staff, families and community to help close this information gap.

There are medications that can help with symptom management; and there are medications that should NOT be given. Please join us for the Summit to hear more from expert presenters on this and the rest of your questions. Thank you for asking them!

REPLY
@connymason1945

What are clinical study updates? Better way to handle office visits with some private caregiver time before bringing in patient.

Jump to this post

We will be providing updates on the research at our upcoming LBD Knowledge & Support Summit. There will also be an educational video series that will be posted on Connect, that will follow the event that will highlight many topics related to LBD. Here is that link for information and registration: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

I will add your second question to my list for the summit, thank you for asking it!

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@wiseowlinga

I believe my mother died from LBD. She passed in October 2006. As both she and my sister lived in Florida and I was living in New England, my sister found 2 or three Nursing Homes for her. Every time she was given medication, she became worse. She would bite, kick, scream etc. She hated being placed in a geri chair. I went to a seminar about dementia a few yrs ago and the speaker mentioned that medication that can help people with dementia could cause the behavior of folks with LBD to become worse. Is this typical? Finally, my sister found a residential home licensed by the State as Assisted Living for four women. I think my mother was the only one in residence. She became calm and I assumed some of the meds were D/C. I believe she choked on some food, always pureed, and that caused her death. I see that as a blessing as she had no quality of life. But is it typical for people LBD to become worse when given meds that normally help people with dementia?

Jump to this post

Thank you for sharing this difficult story about your mother; I am sorry for your loss. There are medications that can negatively impact people with LBD.

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/

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@jodimelius

Thank you for sharing this difficult story about your mother; I am sorry for your loss. There are medications that can negatively impact people with LBD.

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/

Jump to this post

My mother always had extreme anxiety and I know she was depressed. I believe she saw psychiatric medications as a stigma and never received help. She also awakened at 4AM every morning and dressed for a day filled with not much of anything. She became a serious alcoholic in her 60's. Also her nutrition was terrible. She never learned to cook. I am now in my 70's and have learned how to cook healthy meals, rarely using refined sugar and using EVVO judiciously. Thank you for your comment, I appreciate it!!

REPLY
@hopeful33250

How difficult is it for practitioners to differentiate between a diagnosis of LBD and other cognitive disorders like Alzheimer's, etc.?

Are there meds currently to treat LBD in the same way there are meds to treat Alzheimer's?

Generally speaking, how long does it take for a person to be diagnosed with LBD? Is there a particular pattern to the symptoms of LBD?

Are therapies, other than meds, available to treat LBD?

Jump to this post

How long do you live with dementia

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Will the sleep apnea machine slow dementia down from getting worse

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What resources are available from Mayo for family/spousal caregivers, especially given a significant portion are unpaid.

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Want to know how this disease occurs, symptoms and remedy

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@jodimelius

These are excellent questions! First, I want to direct you to our upcoming LBD Summit on May 3rd. We will have expert presenters answering these very questions; as well as presenting a video series post event on these and other topics. Information and registration via this link: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

It can be difficult for practitioners to diagnose LBD if they have not been exposed to diagnostic information about this type of dementia. LBD can start with sleep disorders years to decades before other symptoms appear. Mental health symptoms such as depression, apathy and anxiety can also appear first, and be a primary focus before memory and other cognitive changes appear. In short, it is a complex form of dementia with many symptoms to piece together in making an accurate diagnosis. Mayo Clinic and other research centers are working hard to provide this information to providers, allied health staff, families and community to help close this information gap.

There are medications that can help with symptom management; and there are medications that should NOT be given. Please join us for the Summit to hear more from expert presenters on this and the rest of your questions. Thank you for asking them!

Jump to this post

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.

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