Resources

Area: Alzheimer’s
English: Yes
Spanish: Yes
Services: 24/7 Helpline
Remote or In-Person? Both
Phone: 800.272.3900
Email:
Website: https://www.alz.org/help-support/resources/helpline

Area: Alzheimer’s
English: Yes
Spanish: Yes
Services: Caregiver Resources
Remote or In-Person? Both
Phone: 212-983-0700; 800-432-5378
Email:
Website: https://www.alz.org/help-support/caregiving

Area: Alzheimer’s
English: Yes
Spanish: No
Services: Alzheimer’s Association & AARP Community Resource Finder is a database of dementia and aging-related resources that makes it easy for individuals and families to find programs and services in a specific location. Resources include community services, housing support, educational programing, medical services, care programs, and more
Remote or In-Person? Both
Phone:
Email:
Website: https://www.communityresourcefinder.org/

Area: Clinical Trials
English: Yes
Spanish: No
Services: Presentation on resources for enrolling in clinical trials by Associate Director of Research Programs @ Alz Assoc.
Remote or In-Person? Both
Phone:
Email:
Website: https://leads-study.medicine.iu.edu/about/leads-lectures-webinars/2024-family-meeting/resources-for-enrolling-in-clinical-trials/

Area: Elder Law & Estate Planning
English: Yes
Spanish: No
Services: Presentation on elder law & estate planning resources
Remote or In-Person?
Phone:
Email:
Website: https://leads-study.medicine.iu.edu/about/leads-lectures-webinars/2024-family-meeting/elder-law-estate-planning-resources/

Area: FTD
English: Yes
Spanish: Yes
Services: Support groups, research, awareness, advocacy, helpline
Remote or In-Person?
Phone: 866-507-7222
Email: info@theaftd.org
Website: https://www.theaftd.org/

Area: Lewy Body
English: Yes
Spanish:
Services: Comprehensive library of electronic Caregiver Publications
Remote or In-Person?
Phone:
Email:
Website: https://www.lbda.org/caregiving-publications/

Area: Lewy Body
English: Yes
Spanish:
Services: Free resources from LBDA. Can place order to anywhere in the US free of charge; if desired for BEYONDD, we can make them available in bulk
Remote or In-Person?
Phone:
Email: awareness@lbda.org
Website: https://www.lbda.org/order-lbda-materials/

Area: Neuropsychology & Psychology
English: Yes
Spanish: No
Services: Presentation on neuropsychology resources as it relates to dementia
Remote or In-Person?
Phone:
Email:
Website: https://leads-study.medicine.iu.edu/about/leads-lectures-webinars/2024-family-meeting/neuropsychology-psychology-resources/

Area: Social Work
English: Yes
Spanish: No
Services: Presentation on social work resources as it relates to dementia
Remote or In-Person?
Phone:
Email:
Website: https://leads-study.medicine.iu.edu/about/leads-lectures-webinars/2024-family-meeting/social-worker-resources/

Area: Speech Pathology
English: Yes
Spanish: No
Services: Presentation on speech pathology resources as it relates to dementia
Remote or In-Person?
Phone: 812.855.7760
Email: bcstark@iu.edu
Website: https://leads-study.medicine.iu.edu/about/leads-lectures-webinars/2024-family-meeting/speech-pathology-resources/

Area: Elder Law & Estate Planning
English: Yes
Spanish: No
Services: Publicly available tool to find a licensed practicing NAELA member attorney; virtual/live programming for elder law-related content
Remote or In-Person? Both
Phone:
Email:
Website: https://www.naela.org/Web/Web/naela_Resources.aspx?hkey=1e07503a-588d-4e61-98c0-a975d05fb4a6

Area: Clinical Trials
English: Yes
Spanish: No
Services: Free, easy-to-use clinical studies matching service for people living with dementia, caregivers, & healthy volunteers w/o dementia
Remote or In-Person? Both
Phone:
Email:
Website: https://www.alz.org/trialmatch

Area: FTD
English: Yes
Spanish:
Services: “The Registry is an online database that collects information from those affected by all types of frontotemporal degeneration (FTD):
behavioral variant FTD (bvFTD)
primary progressive aphasias (PPA)
progressive supranuclear palsy (PSP)
corticobasal degeneration (CBD)
FTD with motor neuron disease (also called FTD-ALS)
Persons diagnosed, current and former caregivers, family, and friends can join.”
Remote or In-Person? Both
Phone: 888-840-9980
Email: manager@ftdregistry.org
Website: https://ftdregistry.org/

Area: Clinical Trials
English: Yes
Spanish: Yes
Services: Online registry for participation in brain research
Remote or In-Person? Remote
Phone:
Email:
Website: https://www.brainhealthregistry.org/

Area: FTD
English: Yes
Spanish:
Services: ALLFTD seeks to learn more about FTLD and understand the difference in brain changes due to FTLD compared to normal aging.
Remote or In-Person? In-person
Phone:
Email:
Website: https://www.allftd.org/workouts-stella

Area: Alzheimer’s
English: Yes
Spanish: Yes
Services: Alzheimer’s Disease Neuroimaging Initiative (ADNI) is a brain health research study that is helping us better understand the disease. The study’s goals are to improve how doctors diagnose and treat a patient with Alzheimer’s disease and to provide data to researchers around the world. This study involves cognitive tests, blood tests, and brain imaging. This is all at no cost to participants. It is longitudinal,
Remote or In-Person? Both
Phone:
Email:
Website: https://www.adni4.org/

Area: EOD
English: Yes
Spanish: No
Services: nonprofit social impact organization designed to empower youth and families, living with younger-onset dementia
Remote or In-Person? Both
Phone: (773) 636-9192
Email: info@lorenzoshouse.org
Website: https://lorenzoshouse.org/

Area: Lewy Body
English: Yes
Spanish:
Services: National Support Groups (in-person & online)
Remote or In-Person? Both
Phone:
Email:
Website: https://www.lbda.org/local-support-groups/