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Finding Your Way with the Lewy Body Dementia Association: A Caregiver’s Guide to Resources and Support

When you or your loved one receives a Lewy body dementia (LBD) diagnosis, it can feel like you are entering a maze without a map. The Lewy Body Dementia Association (LBDA) is a national nonprofit dedicated to improving the quality of life for everyone affected by LBD. They offer a wide range of free, practical resources—from symptom checklists and educational courses to a network of specialized medical centers and a community of people who truly understand. This article walks you through exactly what the LBDA provides, how to access it, and how to use these tools to feel more informed, connected, and capable in your caregiving journey.

Key points

  • The LBDA is the go-to organization for LBD-specific resources, including symptom checklists, educational webinars, and support groups.
  • Download and use the family symptom checklist to track changes and improve communication with doctors.
  • Connect with a Regional Center of Excellence for expert diagnosis and treatment—there are about 24 across the U.S.
  • Join an LBDA support group to reduce isolation and gain practical advice from others who understand LBD.
  • Watch the documentary 'Spark' to understand the reality of LBD and feel less alone.
  • Always discuss medication changes with a clinician who understands LBD, especially antipsychotics which can be dangerous.
  • Use the LBDA helpline for urgent questions and personalized guidance.

What is the LBDA and Why Does It Matter for LBD?

The Lewy Body Dementia Association (LBDA) is the leading national organization focused exclusively on Lewy body dementia. Their mission is simple but powerful: to improve quality of life for those affected by LBD by accelerating awareness, advancing research for early diagnosis and better care, and providing comprehensive education and support. Unlike general dementia organizations, the LBDA’s resources are tailored specifically to the unique challenges of LBD—such as fluctuating cognition, visual hallucinations, movement problems, sleep disorders, and extreme sensitivity to certain medications. This specialization is critical because LBD is often misdiagnosed as Alzheimer’s or Parkinson’s, and the wrong treatment can cause serious harm. The LBDA exists to help you get the right information, the right care, and the right community from the start.

What Resources Does the LBDA Actually Offer?

The LBDA provides a comprehensive suite of resources designed for both families and healthcare professionals. For caregivers and patients, the most accessible tools are their free downloadable symptom checklists. There are two key checklists: a comprehensive symptom checklist for families and care partners to track changes over time, and a diagnostic symptom checklist designed for healthcare professionals. Both are available on the LBDA website (lbda.org) and help turn observations into accurate information that can be shared with doctors. The LBDA also hosts educational webinars, online support groups, and a library of articles covering topics from medication safety to managing hallucinations. They have partnered with organizations like the Mayo Clinic to create professional-level courses on LBD diagnosis and management, which are also available for caregivers to learn from. Additionally, the LBDA has a documentary called 'Spark' about Robin Williams’ battle with LBD, which offers an honest look at the challenges of the disease and the importance of early diagnosis. This documentary is free to watch on the Mediflex channel.

How Does the LBDA Connect You to Expert Care?

One of the most valuable resources the LBDA offers is its network of approximately 24 Regional Centers of Excellence across the United States. These are hospitals and medical centers with specialized expertise in diagnosing and treating Lewy body dementia. Being connected to a Center of Excellence can make a profound difference because these clinicians understand the nuances of LBD—they know which medications are safe, how to manage complex symptoms, and how to coordinate care across neurology, psychiatry, and other specialties. The LBDA also recently launched an advisory group made up of four individuals living with LBD and three caregivers. This group works directly with the LBDA to raise awareness, develop new ideas, and help reach more people. For caregivers who feel isolated or overwhelmed, this community connection can be a lifeline, providing both practical advice and emotional support from people who have walked the same path.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Download the LBDA family symptom checklist and bring your completed version to every medical appointment — your careful observations help clinicians see what office visits often miss.

  2. Find your nearest LBDA Regional Center of Excellence and schedule a consultation, or ask your neurologist to consult with one remotely if distance is a barrier.

  3. Join an LBD-specific support group — online, by phone, or in person — to connect with caregivers and patients who understand your experience.

  4. Set aside time to explore LBDA's free webinars and articles on medication safety, especially the life-threatening risks of typical antipsychotics in LBD.

  5. Reach out to the LBDA helpline for urgent guidance, specialist referrals, or emotional support from someone trained in LBD.

What not to do

  • Don't rely on general Alzheimer's resources — LBD has unique symptoms and dangerous medication sensitivities requiring LBD-specific guidance.

  • Don't wait for a crisis — proactively using LBDA resources protects both you and your loved one.

  • Don't assume your local doctor is trained in LBD — bring the LBDA checklist, ask about their familiarity with LBD, and request a referral to a Center of Excellence.

  • Don't argue with or confront your loved one during hallucinations — use LBDA's reassurance techniques.

  • Don't stop or change medications without consulting an LBD-knowledgeable clinician — cholinesterase inhibitors may help, while many antipsychotics can be life-threatening.

Practical tools

  • LBDA Symptom Checklists

    Two free PDFs on lbda.org. The Family Version tracks cognition, movement, sleep, hallucinations, and fluctuations over time. The Healthcare Professional Version lists core diagnostic features and can be given to your clinician to speed accurate diagnosis.

  • LBDA Regional Centers of Excellence Directory

    A searchable directory of ~24 U.S. hospitals with LBD expertise. Use it to find the closest Center; if none is near, ask your neurologist to consult remotely.

  • LBDA Support Group Locator

    A filterable tool on lbda.org for online, phone, and in-person LBD-specific groups, including early-stage and caregiver-only options.

  • LBDA Educational Webinars and Article Library

    Free recorded webinars and articles on medication safety, hallucinations, fall prevention, communication, and caregiver self-care. Professional courses like 'Caring with Confidence' are also accessible to motivated caregivers.

  • LBDA Helpline

    Free, confidential phone and email helpline staffed by trained LBD professionals. Use for urgent questions, specialist help, or emotional support.

Discuss with your clinician

Ask your doctor if they are familiar with the LBDA’s diagnostic criteria and medication safety guidelines for LBD.

Discuss the risks and benefits of any antipsychotic medication before starting it. Ask specifically about the risk of severe side effects in LBD, including sudden changes in consciousness, impaired swallowing, and worsening of Parkinson’s symptoms.

Inquire about cholinesterase inhibitors (like donepezil or rivastigmine) which may help with cognitive and behavioral symptoms in LBD. Ask about potential side effects and how to monitor them.

Ask your doctor about the possibility of a referral to a Regional Center of Excellence or a specialist with LBD expertise.

Discuss advance care planning, including living wills and healthcare proxies, as LBD progresses. Ask your clinician how to document your loved one’s wishes regarding end-of-life care.

If your loved one experiences falls or loss of consciousness, ask your doctor about fall prevention strategies and whether a neurology or physical therapy evaluation is needed.

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