Support Groups

I haven’t been able to write in this blog or record my Podcast for more than four weeks. I am an LBD patient and I have experienced the loss of a child, a loss worse than losing my own life. I got some help, but not in a way you would probably guess. I became part of a support group for grieving adults that have lost a child. It has helped a lot, but the good news is really that there are some awesome support groups for Lewy Body Dementia patients and, as importantly, they give support to caregivers and they are most often the closest loved ones to the patient.

My wife and I belong to two Lewy Body Support Groups. They are both on Facebook. One is called ‘Lewy Body Support Group’ and the other is called ‘Our Journey with Lewy Body Dementia.’ We can tell you they are both essential to our ability to cope. Both give us more information than a doctor visit! The group gives us one thing doctors can’t, first-hand experiences and immediate advice.

Our Journey with Lewy Body Dementia also offers Podcasts and weekly Zoom meetings. The podcasts are available on demand and the Zoom meetings happen every Wednesday afternoon. They are a chance to meet and share stories and questions of your own and many others.

There are a couple of blogs that are very informative, especially for caregivers. One that I follow very closely can be found at Dementia Science – Explains the science behind dementia. The URL is and it is written by Michael Hornberger. He is the Professor of Applied Dementia Research at the Norwich Medical School, University of East Anglia, Norwich, United Kingdom. His blog is laid out so a person can see all of the subjects right on the first page. They are clear and concise with the content being well written.

Another blog I enjoy following is Dementia, Caregiving and Life in General. It is what it says it is. Both blogs can be emailed to you as they are published. Every article might not be for you, but there are a variety of subjects and, like the support groups, they are things that interest you. Many subjects we don’t know and can be grateful they were brought up. The best ones are those that we have experiences with and can help someone else.