This is a list of resources that we hope will help you or your loved one. Please feel free to email other suggestions to info@neurologymindcare.com.
Disease-Related Resources:
The following disease-related websites are the go-to-guides for information about the different types of dementia. Explore the websites for education on the diseases, finding community support, getting connected with a clinical research trial, and much more.
- For information about Alzheimer’s disease as well as many other types of dementia: The Alzheimer’s Association
- For information about the various forms of frontotemporal degeneration: The Association for Frontotemporal Degeneration
- For information about dementia with Lewy bodies: The Lewy Body Dementia Association and The Lewy Body Dementia Resource Center
- For information about progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy: CurePSP
- For information about various types of dementia that are considered atypical and less common: Rare Dementia Support
- For information about aphasia: The National Aphasia Association
Research:
- All clinical trials: https://www.clinicaltrials.gov/
- Alzheimer’s disease: https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials
- Dementia with Lewy bodies and Parkinson’s disease dementia: https://www.lbda.org/research/
- Frontotemporal degeneration: https://www.theaftd.org/research-clinical-trials/ways-to-participate/
Driving and Dementia:
Advanced Care Planning and Legal Documents:
- https://www.alz.org/help-support/i-have-alz/plan-for-your-future/legal_planning
- https://www.alz.org/help-support/caregiving/financial-legal-planning/legal-documents
- https://www.theaftd.org/living-with-ftd/legal-financial-planning/
- https://theconversationproject.org/
Patient Advocacy and Healthcare Coordination:
Home Care:
- https://www.alz.org/help-support/caregiving/care-options
- https://www.homeinstead.com/location/236
- https://thekey.com/locations/new-york
- https://friendsforlifeny.com/
- https://www.caringpeople.com/locations/new-york/ny-jericho/
- https://www.northwell.edu/doctors-and-care/at-home
- https://www.nassaucountyny.gov/2754/In-home-Services
- https://www.suffolkcountyny.gov/aging/In-Home-Care
Day Programs:
- https://www.lidementia.org/our-services/
- https://www.nassaucountyny.gov/4551/Social-Adult-Day-Care
- https://www.dayhaven.org/
Patient Support:
- https://www.alz.org/help-support/i-have-alz/programs-support
- https://www.theaftd.org/living-with-ftd/support-for-people-with-ftd/
Caregiver Support:
- https://www.lidementia.org/our-services/caregiver-services/caregiver-support-groups/
- https://www.alz.org/help-support/community
- https://www.alz.org/longisland/helping_you/caregiver-support-groups
- https://alzfdn.org/caregiving-resources/alzheimers-and-dementia-support-groups/
- https://www.adrcinc.org/counseling-and-referrals/
- https://www.sunriseseniorliving.com/communities/sunrise-of-huntington/about.aspx (the contact # for “Residents and Family”)
- https://www.northwell.edu/behavioral-health/programs-services/dementia-caregiver-support
- https://www.parkerinstitute.org/category/hope-and-healing
If you do not know where to start and want to call someone to help begin to figure it out:
- https://www.lidementia.org/ (516) 767-6856
- https://www.adrcinc.org/ (631) 580-5100
- https://www.alz.org/ (800) 272-3900