Caregiver Resources for Lewy Body Dementia & Related Dementias

Practical, caregiver-created tools to support families navigating dementia — designed for real-world use.

Living With Lewy is a caregiver-founded resource hub offering practical tools, plain-language education, and emotional support for families living with Lewy Body Dementia and related dementias. These resources are grounded in lived experience and designed to complement — not replace — professional care and clinical guidance.

Who These Resources Are For

This page is intended for professionals and organizations who support individuals and families affected by dementia, including:

  • Neurologists & behavioral neurologists

  • Social workers & care coordinators

  • Community outreach & education teams

  • Memory care & dementia support organizations

  • First responders & emergency services partners

What Living With Lewy Provides

🧭 Safety & Emergency Preparedness

Tools designed to help families prepare for emergencies, behavioral crises, and safety concerns.

>> View safety & emergency preparedness resources

🧠 Dementia Education (Plain Language)

Caregiver-friendly educational materials designed to reduce confusion and overwhelm.

  • Lewy Body Dementia explainers

  • Understanding behaviors, fluctuations, and symptoms

  • Education written for families, not clinicians — using plain, accessible language

>> View dementia education resources

 

📋 Organization & Daily Care Support

Practical tools to support day-to-day caregiving.

  • Logs, planners, and tracking tools

  • Daily support resources for caregivers

>> View caregiver organization and daily care resources

 

🩺 Medical Visits & Caregiver Advocacy

Resources to help caregivers communicate concerns clearly and advocate effectively within the medical system.

  • Doctor visit preparation tools

  • Symptom tracking and observation aids

  • Communication supports for appointments and follow-up care

>> View caregiver advocacy and doctor visit resources

 

💛 Emotional Support for Caregivers

Validation-centered resources that acknowledge the emotional weight of caregiving.

  • “I See You” reflections and encouragement tools

  • Journals and caregiver support resources

  • Materials addressing stress, grief, and caregiver burnout

>> View emotional support for caregivers resources

 

How Professionals Use These Resources

Living With Lewy resources are designed to be:

  • Shared directly with families

  • Linked in emails, resource lists, or websites

  • Printed for workshops or support groups

  • Used as supplemental caregiver education

Some extended toolkits and books are also available for families who would like deeper, self-guided support outside of appointments.

About the Creator

Living With Lewy was created by Deb Jeffrey, a long-time dementia caregiver whose mother lives with advanced Alzheimer’s disease and whose husband lives with Lewy Body Dementia. The resources on this site are grounded in lived experience and developed to support caregivers alongside professional care teams.

Where to Start

To explore resources or share them directly with families:

▶ Start Here: Caregiver Resources
▶ Emergency & Safety Tools
▶ Dementia Education for Caregivers

Sharing & Professional Collaboration

You are welcome to share this page and its resources with families, colleagues, and community partners.

Professional feedback and collaboration are always welcome.

Website: LivingWithLewy.net
Contact: [email protected]

This page is designed to be shared freely with families and community partners.

Looking for additional caregiver support tools?
Explore journals, workbooks, and extended resources →