What to Tell Others About Lewy Body Dementia

December 8, 2014
Sharing information about LBD can help. (image courtesy of Ambro/FreeDigitalPhotos.net)

Sharing information about LBD can help. (image courtesy of Ambro/FreeDigitalPhotos.net)

Although more than 1,000,000 people in the United States are afflicted with Lewy body dementia, it is still largely unknown among the general populace. Surprisingly, many healthcare professionals have, at best, only a passing familiarity with the disorder.

With that in mind, it is often up to the caregiver to provide some education to others about Lewy body dementia.

What to tell friends and family members

The caregiver and the loved one can determine what specific information should be shared and with whom, but in general friends and family members should know the basics:

  • Lewy body dementia is not contagious and they will not “catch” anything from the patient.
  • The disorder causes changes that they may have noticed or may notice in the future. These changes may include increasing dementia, a decline in cognitive function, difficulty moving and getting around, changes in mood and emotional state, sleep issues, hallucinations, and incontinence.  Again, not all of these changes may apply to the individual in question, and the caregiver and patient may decide which of these they feel comfortable sharing. Whatever the decision, for those who will be around the loved one frequently, it helps to be as comprehensive and as specific as possible.

What to tell healthcare professionals

Talk about what you know with the doctor. Hopefully, the patient’s treating physician is up-to-date in terms of information about Lewy body dementia. Sometimes, however, a caregiver may have done research which has revealed information about which the doctor may not be aware. Although it can be awkward, it’s important that the caregiver shares this information if he or she believes it is important and may have an impact on the care of the patient. Be respectful and perhaps broach the subject by saying something like “I recently came across some information which surprised me, and I wanted to ask you if this is something we should be talking about.”

Many times, especially in an emergency room or hospital setting, a person with Lewy body dementia may be receiving care from people without an extensive background in this disorder. There are certain things that they must know, including:

  • The name and contact information for the doctor who regularly treats the patient for Lewy body issues.
  • The patient may be extremely sensitive to antipsychotic drugs, and they should never be given without first getting permission from the doctor who regularly treats the patient for Lewy body issues.
  • The dementia, cognitive issues, and behavioral problems are often worsened during an emergency room or hospital visit. Help the staff to understand what is “typical” behavior for the loved one, how it is usually handled, and what kind of treatment is likely to have a negative effect.
  • If movement difficulty is an issue, explain exactly in what way this presents. If the movement difficulty is likely to increase disorientation or behavioral issues, make them aware of this as well.
  • Provide a list of medications, along with the appropriate dosing information. (It’s a good idea to have this updated and readily available at all times.) Caregivers should also make sure that they have a comprehensive list of any allergies and other disorders or conditions the patient may have.
  • Have copies of up-to-date insurance cards and contact information at the ready.

Because too few people know about Lewy body dementia, sharing information is key. The Lewy Body Dementia Association can provide brochures and other materials that can help.


Writer, Craig Butler

Craig Butler has been writing on a wide range of topics for more than fifteen years. As the National Communications Director for the Cooley's Anemia Foundation, Craig regularly writes on a range of health and medical topics. Among the many projects he has written for the Foundation is the Cooley's Anemia Storybook, a collection of original short stories for children with the blood disorder Cooley's Anemia. His freelance work has ranged from reviewing moves and CDs to creating entertainment-related stories about baldness, to creating text for comic strips. Craig looks forward to having a dialogue with you about senior care and issues of concern.

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