Caregiving Publications

Caregiving Publications

While it may be uncomfortable to consider caregiving needs of end-stage LBD, palliative care and hospice help both the person with LBD and the caregiver.

This white paper examines the experience of hundreds of LBD caregivers seeking medical care for LBD and the psychosocial impact of being an LBD caregiver.

Anticipating behavioral changes in dementia and understanding the causes helps caregivers deal with them more effectively.  This is a must-read for caregivers.

If you are just beginning your LBD journey, or need a refresher on a particular topic, then our Care Brief series is just for you. This series covers a variety of important care related topics.
Each Care Brief includes:

  • An overview of the topic
  • Some helpful suggestions
  • Links to additional resources

If there is a topic you’d like to see covered in this series, please let us know! Send your suggestion to and put “Care brief request” in the subject line.

Care Briefs:

The Ultimate Gift: FAQ about Brain Donation – Learn common questions about brain donations, the process and if it is right for you.

Genetics – Learn how much genetics do or do not play a role in who gets LBD.

Community Resources – From home meal delivery to adult day programs, every community offers a variety of services that can help families facing LBD.

Behavioral Symptoms – Changes in behavior in LBD are a common challenge for families. Start here to learn the different factors that may influence behavior.

Medications – A comprehensive treatment plan in LBD can improve quality of life for both the person with LBD and the family caregiver. But not every symptom warrants treatment all the time.

Sleep Disorders– An overview of sleep disorders experienced by those with LBD and how to deal with them.

Be Aware of Polypharmacy – Learn about the dangers and effects of combining medications.

Care Briefs on Behavioral Changes in LBD:

These Care Briefs were developed by Dr. Rosemary Dawson, a former care partner to her husband who died in 2014. Other LBDA volunteers, current and former care partners, LBDA staff, and members of the LBDA Scientific Advisory Committee provided input and reviewed the Care Briefs.

Care Brief #1 Behavioral Changes in LBD: Introduction and Overview – This Care Brief provides definitions, descriptions, and examples of common behavioral and mood changes (hallucinations, illusions, delusions, paranoia, misidentification, Capgras syndrome, reduplicative paramnesia, depression, apathy, anxiety, agitation, verbal and physical aggression, disinhibition, wandering, and catastrophic reactions).

Care Brief #2 Behavioral Changes in LBD: Causes of Behavioral Changes in LBD – This Care Brief summarizes possible causes or triggers for behavioral changes which may help LBD families understand, prevent or minimize the symptoms, develop strategies to cope with them, and support the person with LBD and their care partners.

Care Brief #3 Behavioral Changes in LBD: Non-Drug Strategies that May Prevent Behavioral Changes – This Care Brief summarizes evidence-based, non-drug strategies that care partners can incorporate into daily life that may possibly prevent or curb behavioral changes.

Care Brief #4 Behavioral Changes in LBD: Non-Drug Strategies to Manage Behavioral Changes – This Care Brief summarizes strategies that care partners can use to manage, reduce, or perhaps even eliminate many behavioral changes.

Care Brief #5 Behavioral Changes in LBD: Alternative Non-Drug Therapies – This Care Brief addresses the non-drug therapies that can be used alone or in combination: physical, occupational, speech, art, music, aroma, reminiscence, touch, massage, pet, nutrition, light, validation, support group, individual, and family therapies.

Care Brief #6 Behavioral Changes in LBD: Medications for Behavioral Changes in LBD – This Care Brief summarizes things to know about LBD treatments, in general; when to consider medication to treat behavioral and mood changes; medications that may reduce behavioral and mood changes; and medications that should be avoided or used with caution.

Care Brief #7 Behavioral Changes in LBD: Resources about Behavioral Changes in LBD – This Care Brief lists some online resources related to the topics of each of the six Care Briefs on behavioral changes in LBD.

Lewy Briefs:

LBDA Responds to Flu and COVID Vaccines – This Lewy Brief focuses on what vaccines are and their importance to those with LBD.

Additional LBD-Specific Educational Resources on this Topic:

Telemedicine and LBD Lewy Brief Companion Article – This article accompanies the Lewy Brief: Expert Views on LBD titled Telemedicine and LBD.