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The current issue of Aging Well (January/February 2013) has an article titled "Can You Recognize Lewy Body Dementia?" It is written by a doctor for other doctors (geriatric professionals) and it points out that LBD is often misdiagnosed and that has consequences for the treatment plan.

It is written for professionals but I don't think it is too technical for us lay people.

It is available online. Copy this in the search box (Google or other) and you should be able to find it easily: Can You Recognize Lewy Body Dementia? By Charles E. Driscoll, MD, with Jean Driscoll

If you suspect your loved one might have this version of dementia, you might find it helpful to bring the article to the doctor's attention. (Getting a good diagnosis for someone with LBD can be a frustrating experience!)

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Jeanne, I have many questions about LBD, and it seems you are somewhat of an expert in this area. Mom has PD, and late stage dementia, but I don't think she has LBD. She has moments where it seems the PD takes over, but her stage of dementia pretty much is consistent all the time. I recently started to keep sugar from her diet. She was having ups and downs after the paid caregiver would feed her really sugary desserts to help "fatten" her up. What I noticed was she could not wake up the next morning and was sleepy all day. She also had a UTI a few days before X-mas and got IV antibiotics at the ER and cipro at home. She was really good on X-mas day, then went downhill after that. The paid caregiver was feeding Mom all the leftover desserts after her meals and Mom was crashing an Hour or 2 later. The UTI got worse and she had to be put on another antibiotic for 5 more days. It took one more "fattening her up with sweets" episode to make me realize that all the sugar was killing her. Not only does bacteria love to feed on sugar, but it causes brain fog and blocks the chemical our brains produce to make memories. Studies are being done on the affects of sugar and it's role in AD and dementia. In the last four weeks I have cut down Mom's sugar intake, drastically and she is more cooperative, awake, and cognitive of her surroundings than she has been for a long time.
She is still a challenge to feed as she will not open her mouth so I can get the food in. She is wheelchair bound due to weakness from the PD, but this is a blessing as her severe OCD causes her to be very "hands on" and busy all the time.
I will check out your reading suggestions and see it it will help me with Mom. Thanks for all the input you give us!
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Alzheimer's Disease and Dementia with Lewy Bodies are two separate diseases, both having dementia as a primary element. The symptoms are quite different, and the progress is different. For example, in both diseases the patient may have hallucinations but in AD they typically come later in the progression and are often frightening. In DLB visual hallucinations may be among the first symptoms and are often (but not always) benign. Another important difference is the AD progresses in a somewhat predictable pattern and goes through recognizable stages. There are no "stages" in DLB. DLB lurches between almost normal cognition and severe confusion and everything in between, and these fluctuations can occur within the same day! Both diseases get worse over time, but the pattern for doing so is different.

There are many other differences, including reactions to certain drugs. (Generally DLB gets better results from Aricept, for example, and dangerously worse or negative results from Haldol.) Your family is lucky to have a specific diagnosis. That helps establish a good treatment plan.

Whatever kind of dementia someone has, the caregiver has to deal with each symptom as it arises. Books like the 36 Hour Day or Creating Moments of Joy can be very helpful for that. Just keep in mind that if the book was written primarily for Alzheimer's Disease then it may not be totally applicable to DLB. There are also books specifically for caregivers of folks with Lewy Bodies. A good one for starters is "Treasures in the Darkness" by Pat Snyder.

As a spouse of someone with DLB I think it is very helpful if other family members become familiar with the disease and know what to expect. I also recommend that the family find a support group for caregivers of this specific disease. My local support group has had several spouses attend with adult children.

The pathology in the brain is different between AD and DLB and looking at brain tissue is currently the only way an exact diagnosis can be made. My husband donated brain tissue for research. I am awaiting the post mortem examination report. His symptoms and reactions to drugs, etc. were consistent with DLB and that is what his treatment plan was based on. It will be interesting to see if that is confirmed.
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Sorry I meant to say he was diagnosed with "Alzheimers with Lewy Bodies" not "Dementia with Lewy bodies".
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Hello, My father was diagnosed with Dementia with lewy Bodies. I am going to good the information you provided. Any information on this disease will be greatly appreciated. My mother has been taking care of my father and is stressed out with the day to day confussion my father goes thru. She has been reading a bood called "A 36 hour day" but my question is, Is Alzheimers with Lewy Bodies the same as Demetia with Lewy bodies? What is the difference if any? Please help...Thank you!! marty
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Excellent information, Jeanne. I was surprised to see ALS as a LB related disease. I am googling ALS now to learn more about it. LBD must be one of the most difficult diseases for caregivers with the ups and downs. There must be much early hope that things are not so bad, only to be repeatedly discouraged. I know the last few years have been hard ones for you. I admire that you were still able to reach out to help others. I hope that anyone with loved ones that are showing signs of LBD will ask their doctors and get the correct dx so their loved ones can get the right treatment.
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