Caregivers: Lewy Body and Emotional Effects

Posted by nnyllorac @nnyllorac, Apr 26, 2023

Have been caring for husband for 5 yrs with Lewy Body Dementia. I do not see this as a "defined" support group, but see a need for sharing the emotional aspects with other caregivers. It is similar to Parkinson's.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

drcmladd | @drcmladd | Apr 27, 2023

LBD is so different from AD or PD that a dedicated space makes so much sense. Both for caregivers and those of us living with it.

melaniego | @melaniego | Apr 28, 2023

How does one find out whether they have LBD or PD?

Teresa, Volunteer Mentor | @hopeful33250 | Apr 28, 2023

Hello @nnyllorac and @drcmladd

On Mayo Connect there is a support group for caregivers of LBD patients. Here is the link to that discussion group:
https://connect.mayoclinic.org/discussion/lewy-body-dementia-at-age-51/
Also, here are some blogs related to LBD:
https://connect.mayoclinic.org/blog/dementia-hub/

Kim Webb | @mrjohnwebb | May 4, 2023

In reply to @melaniego "How does one find out whether they have LBD or PD?" + (show)

Go see a neurologist with a specialty in dementia. There are tests now that can confirm what disease is manifesting itself.

drcmladd | @drcmladd | May 5, 2023

In reply to @mrjohnwebb "Go see a neurologist with a specialty in dementia. There are tests now that can confirm..." + (show)

Just be aware that the tests are not definitive - not yet. The only 100% definite way to diagnose LBD is through an autopsy of the brain.

susanbrownstein | @susanbrownstein | Jul 26, 2023

SYN-ONE TEST

Cheryl D | @nmrcdigman | May 25 1:23pm

There is a monthly Zoom support group. Are you aware of it? You are required to register and I have attended for 3 months. There are some other caregivers at the meeting that have given me some excellent examples how to cope as well as some validation for how I’m feeling (some days like Wiley Coyote having the anvil land on him).
Peace, Cheryl