Follow
Share
This question has been closed for answers. Ask a New Question.
Find Care & Housing
Try the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas for their online support group for caregivers of those with LBD.
Helpful Answer (0)
Report

I found this from the Lewy Body Dementia Association

https://www.lbda.org/local-support-groups/
Helpful Answer (0)
Report

Trying an online support group can be a good thing.
I would like to suggest you try several different groups to get support.
Even one that has nothing to do with your responsibilities as a caregiver.

I have a friend who helps me by directing me to gardening websites.
Hope you find some friends on this forum.
Helpful Answer (0)
Report

Lewy body dementia is only slightly different than Alzheimer's. Lewy body dementia produces hallucinations, visual type more than auditory. They see people, animals like in a dream, but while they are awake. The cognitive impairment can vary from day to day. Frequently, it exist together with Parkinson's disease. Survival is shorter than in Alzheimer's. Like all dementias, Lewy body type is incurable. Medication is only used to control agitation, insomnia and aggressive behavior. I don't see he need for a specialized forum of caregivers. Caring for dementia patients, regardless of type, is pretty much alike.
Helpful Answer (0)
Report
Countrymouse Apr 2022
You don't see the need? From the Lewy Body Society's website:

"Dementia with Lewy bodies (DLB) shares mental symptoms, such as confusion and loss of memory, with Alzheimer’s disease and motor symptoms, such as gait and slow movement, with Parkinson’s disease. For that reason it is often misdiagnosed. Accurate diagnosis is essential for successful treatment of the disease; people with DLB are characteristically highly sensitive to certain drugs which can worsen unpleasant symptoms or even be fatal.

Dementia with Lewy bodies (DLB) was virtually unknown until the beginning of this century. Due in large part to a close collaboration between researchers in the UK, Japan and the USA, it is now recognised as a distinct medical condition and not a variant of Alzheimer’s or Parkinson’s diseases."

Slapping a blanket label of dementia on people is easy but wrong. I do have a concern about the development of cliques (our dementia is more evil/important/worthy of research than your dementia) but patients, families and caregivers can have much more confidence in a support group that they know is fighting the same enemy.
(3)
Report
https://www.agingcare.com/search?term=Lewy+body+dememtia

Check this link to see if you can find helpful information.
We have had long time posters whose LO had LBD. They might have ideas of an alternate group.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter