What are good books to read about Parkinson's dementia caregiving?

4 answers | Last updated: Sep 26, 2016
Margeryv asked...

We are dealing with mom who is in the early stage of Parkinson's dementia along with occasional delusions. Can anyone recommend some books that can shed some light on this most disturbing aspect of caregiving?

Expert Answers

Graham A. Glass, MD, is the deputy director of the San Francisco Parkinson's Disease Research, Education, and Clinical Care Center (PADRECC) and an assistant clinical professor of neurology at the University of California, San Francisco (UCSF). He completed a fellowship in movement disorders at the Mayo Clinic.

This is a good question, and I'm not sure that I have great answers for you. In terms of dealing with the dementia issues, books like "The 36 hour day" have been helpful for some of our patients even though it is targeted more at Alzheimer's disease. The basic principles hold true.

In addition, the "Lewy Body Dementia Association" has a lot of down loadable resources that you might find really helpful.

Even though Parkinson's disease dementia (PDD) is thought to be somewhat different from Lewy Body Dementia, there is significant overlap in the symptoms and in fact, patients who have had PDD and Lewy Body Dementia have very similar, if not indistinguishable, pathology in the brain.

I hope these help and look forward to hearing what resources others find helpful.

Community Answers

Lplourde answered...

Try the Caregives Guide to Lewy Body Dementia - excellent book

Bwildbillyjoe answered...

I really liked the "36 hour day"--it has alot of information in it. I learned alot from this book. It lets you know more about what to expect---big thing is someone needs to get power of attorney now!! After too long they wont be able to assign one. I was in the dark: didnt know anyone who had been through this before. Lots of times i just cried because I couldnt find out from any sources I called. I prayed alot and found some answers. But this book was one of the first I read and most of the things in the others are in this book. The best thing i have found is this website!!!!!!!!!!! I have learned alot more about patient and caregivers (me) than I have anywhere. If you dont get their emails--Sign up now!!!

Elsabee answered...

Best by far so far, and I've read many (my husband, aged 73 has PD, diagnosed in 2007) is "The Comfort of Home for Parkinson Disease" I got a Comfort of Home from the library and saw there was one specifically for PD and ordered it from Amazon. (It wasn't as as expensive as from Barnes & Noble)