Michael Fox — Licensed Insurance Advisor
Michael Fox Insurance
Phone: 856-676-9358
Email: michaelfox13@gmail.com
michaelfoxinsurance.online
Lewy body and frontotemporal dementia — Resource Guide
Curated by Michael Fox Insurance
Printed June 18, 2026
LBD & FTD support & resource hub
Lewy body and frontotemporal dementia aren't Alzheimer's. Different symptoms, different medications, different care — and the right help matters.
LBD and FTD are commonly misdiagnosed and demand different treatment than Alzheimer's. This page gathers the most trusted helplines, specialist directories, behavioral symptom guidance, financial aid, and caregiver support — all in one place.
If this is a medical emergency, call 911 immediately.
Talk to someone right now
Helplines and direct support
Free, confidential, and staffed by trained specialists. You don't need to know what to ask — just reach out.
LBDA Lewy Line
800-539-9767Free, confidential information and emotional support from the Lewy Body Dementia Association. Mon–Fri.
Visit websiteAFTD HelpLine (Frontotemporal Degeneration)
866-507-7222Free help from the Association for Frontotemporal Degeneration. Email info@theaftd.org.
Visit websiteAlzheimer's Association 24/7 Helpline
800-272-3900Open 24/7 — covers all dementias including LBD and FTD. Multilingual support.
Visit websiteEldercare Locator
800-677-1116Federal directory connecting older adults to local dementia services and home care.
Visit website988 Suicide & Crisis Lifeline
988Free, confidential 24/7 emotional support — depression and caregiver burnout are common with LBD/FTD.
Visit websiteTrusted national organizations
Where to learn, connect, and get guidance
Lewy Body Dementia Association (LBDA)
The leading nonprofit for LBD — education, advocacy, and family support.
Open resourceAssociation for Frontotemporal Degeneration (AFTD)
The leading nonprofit for FTD — including bvFTD, PPA, ALS-FTD, and CBD/PSP.
Open resourceAlzheimer's Association
Programs, helpline, and resources covering all dementias including LBD and FTD.
Open resourceCurePSP (PSP, CBD, MSA)
For progressive supranuclear palsy, corticobasal degeneration, and MSA — atypical Parkinsonisms with significant care needs.
Open resourceBrain Support Network
Family-focused support specifically for LBD, PSP, MSA, and CBD.
Open resourceDementia Action Alliance
Person-centered community of people living with dementia and their care partners.
Open resourceDiagnosis & specialist care
Finding the right doctor and treatment plan
LBD and FTD are commonly misdiagnosed as Alzheimer's, Parkinson's, or psychiatric illness. A behavioral neurologist or movement-disorder specialist gives you the best shot at the right plan.
LBDA Research Centers of Excellence
LBDA-recognized centers with expertise in LBD diagnosis and treatment.
Open resourceAFTD Centers of Excellence
Multidisciplinary centers specializing in frontotemporal degeneration.
Open resourceADEAR Center (NIA) Specialist Search
NIH-curated resource for finding dementia specialists and local services.
Open resourceMedications to Avoid in LBD (LBDA)
Critical: many antipsychotics can cause severe reactions in LBD. Share with every clinician.
Open resourceHospice & Palliative Care Locator
Palliative care alongside dementia treatment significantly improves quality of life and family well-being.
Open resourceBehavioral & symptom support
Tools for managing the toughest symptoms
LBD brings hallucinations, REM sleep behavior, and Parkinsonism. FTD brings personality changes, language loss, and disinhibition. Each needs targeted strategies.
AFTD Daily Care Strategies
Evidence-based caregiver strategies for behavior, communication, and safety.
Open resourceLBDA Symptom Management
Practical guidance for hallucinations, sleep, movement, and cognitive fluctuations.
Open resourceTeepa Snow — Positive Approach to Care
Widely respected dementia caregiver training — videos, classes, and certified specialists.
Open resourceMemory Cafés Directory (Dementia Friendly America)
Welcoming, judgment-free social spaces for people with dementia and care partners.
Open resourceMedicAlert Wandering Support
ID jewelry and 24/7 emergency response — wandering is common in advanced disease.
Open resourceFinancial assistance & benefits
Help paying for care, medications, and home support
FTD on Compassionate Allowances list
Several FTD subtypes qualify for fast-tracked SSDI — the determination is much faster.
Open resourceSocial Security Disability (SSDI)
Many LBD and FTD patients qualify — apply early; the process can take months.
Open resourceAFTD Comstock Grants
Direct financial assistance for FTD families with respite, equipment, and home safety.
Open resourcePatient Advocate Foundation
Case management and copay relief for chronic and serious conditions.
Open resourcePAN Foundation
Disease-specific copay assistance — funds open and close based on availability.
Open resourceLong-term care planning with Michael
LBD and FTD typically require years of significant long-term care. Plan ahead while you're insurable.
Open resourceCaregiver support
Help for spouses, partners, and family caregivers
AFTD Support Groups
FTD-specific support groups — the experience is very different from Alzheimer's care.
Open resourceLBDA Support Groups
LBD-specific peer groups — in person, virtual, and caregiver-only options.
Open resourceCaregiver Action Network
Help Desk (855-227-3640), peer forums, and toolkits for family caregivers.
Open resourceFamily Caregiver Alliance
State-by-state services finder and online support groups.
Open resourceWell Spouse Association
Support specifically for spouses & partners of the chronically ill.
Open resourceARCH National Respite Network
Find local respite providers — essential for dementia caregivers to avoid burnout.
Open resourceClinical trials & research
Be part of the search for treatments
ALLFTD Study
The largest North American observational FTD research study.
Open resourceDLB Consortium
LBD research network — accelerating diagnosis and treatment.
Open resourceClinicalTrials.gov — LBD
Federal database of every registered LBD trial in the U.S.
Open resourceClinicalTrials.gov — FTD
Federal database of every registered FTD trial in the U.S.
Open resourceFTD Disorders Registry
Patient and family-driven registry to accelerate FTD research.
Open resourceLocal & community help
Find services in your neighborhood
AFTD Regional Coordinators
Connect with FTD volunteer leaders in your region.
Open resourceLBDA Local Resources
Find local Centers of Excellence and support contacts.
Open resourceEldercare Locator
Federal directory (800-677-1116) of local services and home care.
Open resource211 (United Way)
Local help with food, transportation, utilities, and care needs.
Open resourcePlanning ahead
Decisions that protect your family
Both diseases progress. FTD often hits in mid-life — sometimes in the 40s or 50s — making early planning especially important.
Five Wishes Advance Directive
The most widely used living will in America.
Open resourceNAELA — Find an Elder Law Attorney
Powers of attorney, healthcare proxies, and asset protection planning.
Open resourceAFTD Younger-Onset Resources
FTD often impacts working-age adults — disability, work, and family planning resources.
Open resourceLong-term care planning with Michael
Hybrid LTC, traditional LTC, and annuity-with-care options that fit your situation.
Open resourceShare this with someone you love.
A diagnosis can feel isolating and overwhelming — but you can be the light in someone else's darkest moment. If you know a family walking through Lewy body and frontotemporal dementia, forward this page. One small act of sharing can connect them to the hotlines, specialists, and community that help carry the weight.
A note from Michael
You don't have to face Lewy body and frontotemporal dementia alone.
I built this hub because watching my own family navigate a serious diagnosis showed me how hard it is to find trustworthy help when you need it most. If something here eases the load — even a little — it's worth it.
When you're ready to talk about protecting your family financially, I'm here — no pressure, no cost.
Informational only — not medical, legal, or financial advice. Always consult a licensed professional. In an emergency, call 911.