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.

Colleen Young, Connect Director | @colleenyoung | Apr 15, 2021

Welcome new members @connymason1945 @diannu @dusty14 @wiseowlinga @marcia101
Mayo Clinic Connectis an online community where people can share experiences and ask each other questions about any health issue. I see that for several of you, your comments here are your first posts and that you are following the expert blog: Dementia: Hub and the LBD Summit.

You may also be interested in joining the online support groups for people living with LBD, mild cognitive impairment and Parkinson's and also groups for Caregivers and people who are dealing with grief and loss. For example:
- Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/
- Loss & Grief https://connect.mayoclinic.org/group/loss-grief/
- Parkinson's Disease https://connect.mayoclinic.org/group/parkinsons-disease/

Here is the complete Group Directory: https://connect.mayoclinic.org/groups/

Please let me know if I can help you find anything or connect you with other members like you.

Jodi Melius | @jodimelius | Apr 16, 2021

In reply to @dusty14 "I have LBD so I’m very interested" + (show)

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/

Jodi Melius | @jodimelius | Apr 16, 2021

In reply to @diannu "My husband talks during sleep. I ignore his talking and we both go back to sleep...." + (show)

There is usually no reason to wake your loved one during sleep talking or activity during sleep. Making sure that you are both safe; considering risks of falls or anything else that could cause a risk if there were activity or movement during sleep is the biggest priority.

diannu | @diannu | Apr 16, 2021

In reply to @jodimelius "There is usually no reason to wake your loved one during sleep talking or activity during..." + (show)

Thanks

patf | @patf | Apr 24, 2021

My husband is up all night. He is taking 125mgs seroquel and 10mgs melatonin, do you have any suggestions to improve his sleep? Thank you

Colleen Young, Connect Director | @colleenyoung | Apr 24, 2021

In reply to @patf "My husband is up all night. He is taking 125mgs seroquel and 10mgs melatonin, do you..." + (show)

@patf, sleep issues is a great topic to be addressed at the LBD Summit. To connect with other caregivers talking about sleep and other dementia-related topics, please join the discussions here:
- Caregivers: Dementia https://connect.mayoclinic.org/group/caregivers-dementia/

I think you'll find the members in the group to be very supportive and helpful. I invite you to start a new discussion in the group and to ask members your question about your husband's nocturnal habits. They will certainly have suggestions to help you and your husband get some sleep.

patf | @patf | Apr 25, 2021

In reply to @colleenyoung "@patf, sleep issues is a great topic to be addressed at the LBD Summit. To connect..." + (show)

Thank you

jkostyn | @jkostyn | May 3, 2021

Is there a link between Posterior Cortical Atrophy and LBD? My parnter's first symptoms were all visual and he was diagnosed with PCA before other symptoms began to become obvious.

mikeshilts | @mikeshilts | May 3, 2021

Thank you for the session this morning. Did I hear correctly one of the doctors say that olanzapine should not be prescribed because it is a dopamine blocker?

dlhays | @dlhays | May 5, 2021

Could you share a list of the drugs / drug classes that one should be at best cautious of for people with LBD? (eg I noted Haldol and Seroquel, but missed the names of some of the other ones).

My mother's LBD is advancing. She has never been assessed for sleep apnea that I know of. However, she sleeps on her back, snores loudly, and seems to snort at times at night. She experiences hallucinations and is increasingly having nightmares and yelling out at night. Is it too late to assess her for sleep apnea? It would be a challenge to get her to wear an oxygen mask or sleep on her side, so I am not sure that it is worth it to try to assess her.