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.
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.
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.
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.
https://www.lbda.org/local-support-groups/
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.
"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.
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.