Bringing awareness and supporting with love
LBD creates an extraordinary caregiving burden — affecting cognition, movement, behavior, and sleep all at once. LBDRC exists to walk alongside every person and family navigating this disease, with free guidance, support groups, and local resources.
Speak to someone who has been there. Our helpline consists of former caregivers who understand LBD firsthand.
What makes LBD caregiving uniquely challenging
LBD affects every aspect of a person. The combination of cognitive, motor, and behavioral symptoms creates a highly demanding set of challenges — and caregiver burden is extraordinarily high. As one caregiver noted: “None of it is easy. None of it makes sense.”
The insights below come directly from caregivers and clinicians who know LBD deeply. They won’t make it easy — but they can help.
People with LBD feel your energy and are extremely sensitive to emotions. If you're frustrated, they will feel it. Patience, quiet, and routine work best.
Speak caringly and slowly. Wait about 20 seconds for a reply. Respond to repeated questions as if it's the first time you've heard them.
Limit activities and visitors. People with LBD are often overwhelmed by too much stimulation, noise, or too many people. Keep groups small and conversations focused.
Try your best to create special moments for both of you. Though this disease is difficult, moments of connection you share would not have been possible otherwise.
“Though caregiving is some of the most difficult and demanding work that we will ever do — and demands great patience and strength of character — it is also a role for the courageous and the optimistic. Stay strong, celebrate each tiny victory, laugh when you can and cry when you must.”
— Tom & Karen Brenner, authors of You Say Goodbye and We Say Hello
💡 Emotional needs of people with LBD
— Communication
Effective communication reduces distress for both the person with LBD and their caregiver. These evidence-based techniques from the Mayo Clinic can make a real difference day to day.
Fine-tune your communication. When someone asks the same question repeatedly, respond with the same patience and care as if you're hearing it for the very first time. Validate, don't correct.
Frame things positively. Instead of "you can't go out," try "Let's get ready for our walk at 3 o'clock." Connect activities to familiar routines they enjoy.
Only one person should speak at a time. Wait for a response — up to 20 seconds — before speaking again. Crowded conversations are overwhelming for people with LBD.
If someone believes something that isn't true — like a spouse is having an affair — don't argue the facts. Acknowledge the feeling: "I'm sorry you feel that way. I love you."
Avoid appearing over-controlling. Offer limited, simple choices to preserve their sense of autonomy. "Would you like tea or water?" rather than deciding for them.
Play soothing music if they enjoy it. Minimize background noise during conversations. A calm environment significantly reduces anxiety and agitation in people with LBD.
— Support Groups
We’ve been offering support groups in the New York metro area since 2008. Today we offer national and international groups for both people living with LBD and caregivers at every stage — all via Zoom, all free.
For people living with LBD
For LBD caregivers in New York/New Jersey/Connecticut
For LBD caregivers — focused on feelings & needs in the present moment
For people under 65, newly diagnosed, or experiencing symptoms without a diagnosis
For LBD caregivers — evenings to accommodate working caregivers
For later-stage LBD caregivers
For LBD caregivers worldwide — launched 2025
For those who have lost a loved one to LBD
Email us and we'll help you find the best fit. All groups are free and open to everyone.
✉️ Email norma@lbdrc.org— Local Resources
LBDRC has compiled comprehensive, state-specific directories of home care aides, adult day programs, hospice, support groups, eldercare consultants, and much more.
The most comprehensive resource directory — covering NYC, Long Island, and beyond
Resources for caregivers and families across Florida
Resources for caregivers and families across California
For information on other states, please call our Helpline at 516-218-2026 or email us at norma@lbdrc.org and we will be happy to help you with resources in your State.
— Caregiver Tip Sheets
These resources from the Alzheimer’s Disease Education & Referral Center at NIH cover the most common challenges caregivers face with LBD.
— We're Here to Help
Whether you’re newly diagnosed, a caregiver searching for answers, or a healthcare professional seeking guidance — our live helpline connects you with knowledgeable LBD specialists. Free, always.
Comprehensive resources covering everything families need to know
Find local specialists, support groups, and care resources
Worldwide directory of movement disorder specialists
Expert-led conversations and firsthand stories
Founded by Norma Loeb, LBDRC provides free support, education, and community to individuals and families navigating Lewy body dementia — across the U.S. and around the world.
📞The information on this website and our Helpline is provided as a resource for LBD caregivers, but is not intended as an endorsement of any product, medication, or medical procedure, and is not a substitute for professional medical advice.
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