My Mom passed away from Lewy body dementia last week. We found it challenging to learn about the disease. In particular what was the best treatment to help her make the most of the time she had left and what is the disease like at the various stages. We had learned that it's a 5-7 year ordeal. Three years ago, we had no idea anything was wrong, although Dad may have known more than he let on.
Looking back at photos, we can now observe a change between 3 and 4 years ago that matches some of the descriptions on the LBDA website. The changes are minimal, but recognizable when you are looking for those specific traits. It was only in the last 30 months, that something was clearly wrong.
Ironically I started a home care business 18 months ago. An expected benefit was that I made contacts and became much more aware of care that was available for seniors. We never found what I would consider local expertise to deal with LBD.
It may be that nothing could have been done to help Mom or give her more time. It would have been helpful to the family, especially Dad, to know more about the different stages and especially, what the end would be like. We were blindsided at how her last 3-4 days unfolded.
I think all of us would be willing to help other families struggling with this situation.