I know this is an old post but I hope this helps, all of these questions have been answered for me by listening to the new podcast called Lewy Body Rollercoaster. Its hosted by a man who has Lewy Body and Linda, who’s husband has LBD. They speak of their experiences, interviews with other families, they have online support groups, and medical professionals and authors have also appeared on episodes. Its a fantastic podcast, I’ve learned SO much.