Carenote from Laura

January 7, 2019

2:01 PM

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns.

Lewy Body Dementia

I don't know that much about LBD...I stay with my husband 24/7..I see the changes but very scared and confused about his prognosis. Almost nobody's heard of it..in pretty much...lost.

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Lewy Body Dementia

It is important that you contact the Lewy Body Dementia Association online. My brother was diagnosed with LBD and we went through much trial and error with his meds. LBD can present with symptoms similar to Parkinson's and Alzheimer's and some of the meds used to treat those conditions can cause irreversible damage with LBD. The LBD Assoc can provide you with essential information about the condition that you should carry with you at all times, especially if a trip to the emergency room is required as most Dr's there are probably unfamiliar with the diagnosis.

Eileen Moffit more than 6 years ago

Lewy Body Dementia

Reach out to the Lewy Body Dementia Association online. They provide a wealth of information about the disease, what to expect, caregiving advice, and have an online forum for exchanging information with other caregivers. I found it to be most helpful when caring for my younger brother who had Downs Syndrome and lived long enough (65) to unfortunately develop Lewy Body Dementia.

Eileen Moffit more than 6 years ago

Lewy Body Dementia

I don't know your location, but this is not as uncommon as you think...you might want to check in with your local or nearest Alzheimer's Assn to see if there is a support group; they may have one that has a focus on LBD as the behaviors can be a bit different than other types. Here in Cleveland, the Cleveland Clinic co-sponsors a group with the Alz Assn that meets monthly. I have a friend who attended and found it very helpful.

Robin Rosner more than 6 years ago

Lewy Body Dementia

Please reach out to the Alzheimer's Association. They have a 24/7 Helpline number at 800.272.3900. You will be able to speak with a Care Consultant who can give you information on Lewy Body Dementia as well as be connected to your local Alzheimer's Association Chapter. Through your local Chapter you will learn about educational classes that are offered, caregiver support groups as well as connecting with the staff for a Care Consultation to help you with your specific needs. There is no cost for these services.

Lori Stahl more than 6 years ago