A very close loved one has Alzheimer’s Disease which has been a painful and scary realization. But, I’ve come to understand that one of the most powerful tools in fighting fear is to get educated. The following are resources that I have come across, both through the book A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier, and via my own Internet research. I hope they are as helpful to you as they have been to me.
General Information / Education
• Alzheimer’s Disease Education & Referral Center (ADEAR) www.nia.nih.gov/alzheimers (formerly www.alzheimers.org) – multiple resources and publications
o Caregiver Guide numerous helpful tips (28 pages, PDF)
o Comprehensive Caring Guide (146 pages, PDF)
• The Alzheimer’s Project from HBO www.hbo.com/alzheimers/ – documentary films offering insight on the disease with examples of actual patients and their families – a bit depressing, but well done. The site also has resources and many links.
• Alzheimer’s Association www.alz.org: offers detailed information with local chapters, and an online forum.
o A Carefinder Guide (30 pages, PDF) with a list of care issues and an area for taking notes.
• Fisher Center for Alzheimer’s Research Foundation www.alzinfo.org – an easy to navigate site with the latest research and helpful tips, videos, blogs, a newsletter, and Preserving Your Memory magazine
• NIHSeniorHealth.gov – Alzheimer’s Disease – http://nihseniorhealth.gov/alzheimersdisease/toc.html short, easy-to-read items covering the basics of the disease, along with links to educational videos.
o This video in particular explains the technical details of how Alzheimer’s disease impacts the nerve cells of the brain. http://nihseniorhealth.gov/alzheimersdisease/whatisalzheimersdisease/video/a2_na.html
• Alzheimer’s Resource Center of Connecticut www.arc-ct.org – a nonprofit organization focused on Alzheimer’s care in Connecticut
• Family Caregiver Alliance – www.caregiver.org fact sheets, newsletters, and information for caregivers.
Site provides an amazing amount of care resources by state, including a detailed chart of services for family caregivers
• American Health Assistance Foundation www.ahaf.org/
o Comprehensive list of resources http://www.ahaf.org/alzheimers/resources/helpfulorganizations.html
o Excellent free guides that can be ordered or viewed online (as PDFs) via this page http://www.ahaf.org/alzheimers/resources/publications.html One that is particularly helpful is on managing caregiver stress (9 pages, PDF)
• Alzheimer Research Forum www.alzforum.org – research-oriented site designed for clinical professionals and those looking for in-depth scientific information.
• Alzheimer’s Disease Research Centers http://www.nia.nih.gov/Alzheimers/ResearchInformation/ResearchCenters/ – A list of the Alzheimer’s Disease Centers (ADCs) around the US funded by The National Institute on Aging funds
Finding Alzheimer’s Care
In general when looking for a physician to treat someone with Alzheimer’s disease search for “Geriatricians” since they are the specialists who are most likely to have expertise in the disease.
• Eldercare Locator www.eldercare.gov – a service of the U.S. Administration on Aging that allows you to search for specific care option based on your location.
• The FHA Physician Referral Service http://www.healthinaging.org/public_education/physician_referral.php – After filling out a form, you are given access to an online search [Note you may need to enter multiple neighboring towns to find a doctor]
• You can also find local treatment option by visiting Google.com and entering the terms “Memory Clinics” or “Memory Centers” along with your town or state (i.e. Memory Clinics, CT)
Good luck in your journey!