A long time friend of ours was visiting with my wife on the phone a couple of nights ago. During the conversation, she disclosed that a neighbor of hers had a loved one that was just diagnosed with AD. She asked my wife Penny where she might go to on the internet for more educational information about AD to share with her friend?
It has been a long time since I had compiled and updated a list of such web sites so the question caught me flat-footed. Here I am blogging about the disease and have so for nearly four years, yet I have not created or maintained any kind of comprehensive list of AD web sites to refer folks to.
So after the call, I got inspired and thought it was an appropriate time to gather up all of the web sites that I visit regularly, have visited or have recently discovered that offer helpful and empowering information on dementia and Alzheimer’s disease.
1. Alzheimer’s Association www.alz.org/
This is a nationwide AD web site. Top down information from Congress, the National Institute of Health, international AD research and trial news and clinical trial updates are all featured at this site. They also offer a 24 hour help line at: 1-800-272-3900.
The Alzheimer’s Association is in constant lobbying contact with our policy makers and influential congressmen and women. Information pertaining to national and worldwide Alzheimer’s research initiatives can be found here.
2. Alzheimer’s Reading Room www.alzheimersreadingroom.com/
Bob DeMarco out of DelRay, Florida founded this site in 2003. He is to be commended for being one of the first caregivers and AD activists to offer a comprehensive set of links pertaining to all related dementia and AD topics all available through his site. According to The Alzheimer’s Reading Room’s own statistics, they average approximately 60,000 readers per month.
This site features up to the minute articles along with his blog about everything in the news about AD along with cutting edge medical research and the latest clinical trials. There are also a wide variety of inspiring personal stories from both caregivers and those who have AD that wish to express their feelings and passions.
I recommend that you bookmark this web site for frequent visits to keep yourself educated on what is going on with AD.
3. Dementia Weekly www.alzheimersweekly.com/
This is another excellent educational web site. Whether you are new to the frightening world of dementia/AD care or a veteran caregiver, you’ll want to include a bookmark of this site as one of your go-to places to keep informed. A section called Caregiver News features a substantial variety of helpful topics each month. Current featured articles include: 10 Questions to Ask Before Hiring a Caregiver, Walking Styles Detect and Fight Alzheimer's, and, The Alzheimer’s - Diabetes Connection: Much More Than Coincidence.
This web site also features an active Blog section, a Library Learning Center for on-line educational articles and a section entitled, Ask Nurse Dina. Here, visitor questions can be submitted to a nurse with over 20 years of experience with dementia/AD patients. Dina Adelman is a licensed and registered nurse in New York and New Jersey.
4. Alzheimer’s Disease. Com www.alzheimersdisease.com/
This is an informational site sponsored by the pharmaceutical firm, Novartis.
Novartis markets the dementia/AD medication, Exelon, along with other popular medications such as Lamisil, Lescol, and Reclast. Novartis is based in Basel, Switzerland and was formed in 1996 in a merger between Sandoz Labs and Ciba-Geigy.
This site offers “Conversations in Caregiving,” which currently features author as well as television and radio personality, Leeza Gibbons. Leeza wrote the book, “Take Your Oxygen First,” which is her own poignant personal story of caregiving for her AD diagnosed mother.
5. Fisher Center for Alzheimer’s Research Foundation www.alzinfo.org/
The Fisher Center Foundation was established in 1995 at Rockefeller University in New York City. The web site is a winner of the 2011 Web Health Awards. This is an in-depth, comprehensive informational site to learn more about AD, risk factors, and current medical research.
It features an Ask The Experts section, a Blog Section and a vast Resource Locator. The Resource Locator offers 32 different links to such topics as ADD Chapters, Elder Law Attorneys (NAELA), MediCare information and Nursing Homes.
6. The Mayo Clinic www.mayoclinic.com/
This web site is the home of the famed Mayo Clinic in Rochester, Minnesota founded in 1889.
The Mayo Clinic is known across the United States for specializing in treating difficult cases. In 2011, the Mayo Clinic was ranked #3 in the United States overall out of 4,825 hospitals by US News & World Report.
Under the heading of Disease Conditions, Alzheimer’s Disease lists 124 written articles on a wide variety of educational topics including how to help your caregiver, helping children understand the disease, considering options for long term care, and, diabetes and alzheimer’s and how they are linked.
Under the Health Information header at the top of their page, a pull down menu directs you to a series of health and medical blogs including one specifically for AD. It is written and authored by Mayo Clinic Educational Outreach Coordinator, Angela Lunde. There are plenty of educational articles and reports at this web site.
The National Institute on Aging has established several Alzheimer’s Disease Centers around the United States. One of them is right in our Sacramento, California back yard. The address is as follows:
7. Alzheimer’s Disease Center University of California Davis
www.ucdmc.ucdavis.edu/alzheimers/
This web site is designed to serve primary care doctors, caregivers, students and medical researchers. It also features links for Spanish speaking readers and African-American’s who suffer from a much higher risk of vascular disease. An underlying condition of vascular disease substantially increases the possibility of developing dementia/AD as a person ages.
The UC Davis Medical Center is located in Sacramento at 4860 Y Street, Suite 3700, Sacramento, California. An information line is set up at: 916-734-5496. Fax: 916-703-5290
If you suspect a dementia/AD problem with yourself or a family loved one, it is important to see your family doctor or primary care physician. They in turn can refer you to a neurological specialist who can arrange for further diagnostic testing to make a more accurate diagnosis.
Although Alzheimer’s Disease is the most predominant type of dementia diagnosed, there are approximately 30 different kinds of dementia, some of which, mimic or present themselves with AD like symptoms but are not AD.
Start with your doctor and medical professionals. Then start the process of educating yourself and your family more about this disease.
Jeff Dodson
July 31st 2012
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