10 Things You Should Know About Lewy Body Dementia (LBD)

Lewy Body Dementia is a progressive dementia that affects about 1.4 million Americans and 11 million people worldwide. Even though it’s relatively common, millions of people have never heard of it. Many of us at the Lewy Body Dementia Resource Center have had family members and other loved ones who suffered from LBD, so we understand personally how heartbreaking and confusing this disease can be. On top of everything else, it’s a very complicated disease and can be difficult to diagnose. Here are some tips that a first-time caregiver or someone new to LBD should know.

1.    LBD is the second most prevalent type of progressive dementia after Alzheimer’s disease according to the Mayo Clinic. LBD is characterized by the presence of a type of protein deposit in the brain. Learn more about LBD.

2.     LBD typically presents with a few of these aspects:
Symptoms of Parkinson’s disease –shuffling gait, muscle stiffness, blank stare, problems with balance Cognitive and memory symptoms Visual hallucinations, anxiety, depression and delusions.

3.    In addition to the three presentations we’ve already covered, symptoms may include sudden changes in cognitive ability and attention, REM sleep disorder and sensitivity to antipsychotic medications. Read more about LBD symptoms.

4.    Early intervention is key. People with LBD may have better long-term outcomes if the disease is diagnosed early. How is LBD Diagnosed?

5.    You are not alone. There is a huge network of support for people with LBD and their families and caregivers. We founded LBDRC to raise awareness, encourage early diagnoses and intervention, and provide a strong support system for caregivers and loved ones. New York has many resources for LBD caregivers. You may also email me or contact us directly. We’ve cared for our parents, spouses and family members with LBD and understand how you’re feeling.

6.    Communication is key. Even though it may be challenging, it’s critical that caregivers learn to meet the emotional and communication needs of a person with LBD. This means always answering questions (even if it’s for the 100th time!), taking turns speaking, using positive language and being respectful and support of their emotions. Emotion and communication tips for caregivers.

7.    Establish a daily routine. People with LBD do best when they have a daily routine, plus it takes a lot of stress and work out of your daily caregiving requirements. When creating a daily plan, be sure to allow extra time for meals, dressing and other aspects of self-care. Read these other great everyday care tips for caregivers.

8.    Healthcare workers’ knowledge is lacking. Many medical professionals have only recently begun learning about LBD and how it differs from Parkinson’s and Alzheimer’s.

9.    Many symptoms of LBD can be treated. Although you have to be very careful giving people with LBD antipsychotic medications, other aspects of the disease can be treated with medication, exercise and various therapies, such as music therapy.

10.    Awareness and advocacy are in their infancy. Organizations like ours are in the early stages of raising awareness about LBD, and it’s difficult because there is very little research on the disease. With more research, we could develop tools to help diagnose and treat LBD, plus new therapies to manage it. Your donation can help.