These are excellent questions! First, I want to direct you to our upcoming LBD Summit on May 3rd. We will have expert presenters answering these very questions; as well as presenting a video series post event on these and other topics. Information and registration via this link: https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

It can be difficult for practitioners to diagnose LBD if they have not been exposed to diagnostic information about this type of dementia. LBD can start with sleep disorders years to decades before other symptoms appear. Mental health symptoms such as depression, apathy and anxiety can also appear first, and be a primary focus before memory and other cognitive changes appear. In short, it is a complex form of dementia with many symptoms to piece together in making an accurate diagnosis. Mayo Clinic and other research centers are working hard to provide this information to providers, allied health staff, families and community to help close this information gap.

There are medications that can help with symptom management; and there are medications that should NOT be given. Please join us for the Summit to hear more from expert presenters on this and the rest of your questions. Thank you for asking them!

How long do you live with dementia

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.