Resources – Remembering When

If you want to learn about dementia and Alzheimer’s, Google it. There’s information about books, organization websites, memory products, services and opportunities to volunteer, the list is endless. There are national and local organizations offering products, caregiver respite time, information on senior communities, everything is there. It becomes overwhelming.

The key is, how to use these sites. Get recommendations and do your own research.

Compare at least three sources for one topic. Find the common thread between the different sites. That thread will stand out as helpful. Then bookmark it.

What to watch for:

Check the address. Are you at Alz.org or Alzheimer’s.net?
1. Sites will try to ‘sound’ like one another to ‘catch customers’.
If the need is to review a book , Google ‘book review’.
Mom, dad (patient) has a hard time telling time, Google, ‘Clocks for Alzheimer’s patients.’

Clocks

There are dozens of options for clocks and related items. A particular clock is featured on several sites. It ranges in price from $48.00 to $189.00. Do the research to discover the differences.

Some clocks are digital. Some show digital and analog. Some come in a fancy frame, another with a plastic back support. Another will say ‘day time’ and ‘night time’ instead of AM & PM.

There’s a $.99, time app. Can the patient use an app? So many things to consider. So many friends with opinions. In the end, it’s up to the individual to decide what works best for their situation.

The important thing to remember …this is about what clock works best for the patient. If the care partner likes the $.99 app because it seems easier and is cheaper, first ask, “Will it work for the patient?”

It’s the same with medications, advice, caregiver information, resources or research. Use reputable sources. After reading all the information, if the site’s goal is to sell you something…move to another site. If the site has a ‘new’ food product that will prevent Alzheimer’s, think twice.

If the new diet program prevents Alzheimer’s it would use a different distribution model besides the internet. Consult your doctor if there’s a real question.

FOR STARTERS:

ALZ.ORG: LBGTQ links Brief Issues – https://www.alz.org/media/Documents/lgbt-dementia-issues-brief.pdf

Friendly Provider:

https://www.alz.org/norcal/about_us/everyone-is-welcome/lgbt-resources

LGBTQ caregivers:

www.alz.org/national/documents/brochure_lgbt_caregiver.pdf

NATIONAL INSTITUTES OF HEALTH – https://www.nih.gov/

The NIH describes itself this way:

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.

The National Institutes of Health (NIH) is a United States health agency devoted to medical research. It falls under the Department of Health and Human Services (HHS) and is funded by the US Congress. It provides yearly progress updates at Congressional hearings.

THE ALZHEIMER’S ASSOCIATION – www.alz.org

The Alzheimer’s Association’s vision:

Formed in 1980, the Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research.

Their mission:

To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

THE MAYO CLINIC – www.mayo.edu/research/centers-programs/alzheimers-disease-research-center

The Alzheimer’s Disease Research Center at Mayo Clinic promotes research and education about healthy brain aging, mild cognitive impairment, Alzheimer’s disease, Lewy body dementia, frontotemporal dementia and other related dementia disorders.

FOR MORE ALZHEIMER’S RESEARCH INFORMATION, GOOGLE:

Alzheimer’s disease research centers

There are listings of other research programs, centers and charities. Click several pages 2, 3, 4, etc.

Other interesting sites…. give yourself time to browse, there’s a lot of information out there.

Alzheimer’s Store/clocks and other items

www.alzheimers.net/9-10-14-clocks-for-dementia/

www.alzstore.com/clocks-alzheimers-dementia-s/1553.htm

Alzheimer’s Assoc. Shop/items…t-shirts, travel cups, mugs, pins, blankets, magnets, notebooks, bags.

www.shop.alz.org

Health Line/clocks, calendars, mind games etc.

www.healthline.com/health/alzheimers-disease/best-products#1

Thrive Pharmacy

http://www.thrivepharmacysolutions.com/

Safety

Mayo Clinic

www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/home-safety-tips/art-20046785

National Institutes on Aging/NIH

www.nia.nih.gov/health/home-safety-and-alzheimers-disease

Safety Alerts – Alzheimer’s Association

www.alz.org/help-support/caregiving/safety/medicalert-safe-return

Fun/Active

https://faculty.washington.edu/chudler/jpuz.html

MORE RESOURCES

Highlight this month on AARP’s contributions to dementia, Alzheimer’s and care partner support and information. Look up their Movies-for-Grownups. In 2018, Hilary Swank and Blythe Danner brought their own life experiences to a caregiving love story, “What They Had”. It’s worth the time to see it

https://www.aarp.org/entertainment/movies-for-grownups/info-2018/annual-film-awards-nominations.html

Copy/paste the sites listed below to reference questions and stories from healthy life styles to current research, caregiver tips, information on the relationship between the brain and gut, influence of stress on the brain…and more.

AARP

Washington DC

1-888-687-2277

https://www.aarp.org/health/dementia/

https://www.aarp.org/states/

Local offices found by adding /states/

Alzheimer’s Association
225 North Michigan Avenue
Floor 17
Chicago, IL 60601-7633
info@alz.org
http://www.alz.org
Tel: 312-335-8700; 800-272-3900 (24-Hour Helpline); 312-335-5886 (TDD)
Fax: 866.699.1246

For local offices go to alz.org and enter zip code.

Alzheimer’s Disease Education and Referral Center (ADEAR)
National Institute on Aging
P.O. Box 8250
Silver Spring, MD 20907-8250

adear@nia.nih.gov
https://www.nia.nih.gov/alzheimers
Tel: 1-800-438-4380
Fax: 301-495-3334

BRAIN
P.O. Box 5801
Bethesda, MD 20824
800-352-9424
http://www.ninds.nih.gov

Center for Brain Health

2200 W Mockingbird Ln

Dallas, TX 75235

214-905-3007

https://brainhealth.utdallas.edu

Research studies on all brain function from Alzheimer’s, traumatic head injury, veterans, cannabis studies, autism, neurostimulation and many others.

Centers for Disease Control and Prevention
Office of Public Inquiries
1600 Clifton Road, NE
Atlanta, GA 30333
404-639-3311
800-232-4636

https://www.cdc.gov/

CJD Aware!
2527 South Carrollton Ave.
New Orleans, LA 70118-3013
cjdaware@iwon.com; info@cjdaware.com
http://cjdaware.com/2.html
Tel: 504-861-4627

Creutzfeldt-Jakob Disease (CJD) Foundation Inc.
341 W. 38th Street, Suite 501
New York, NY 10018
help@cjdfoundation.org
http://www.cjdfoundation.org
Tel: 800-659-1991
Fax: 330-668-2474

Department of Agriculture (USDA)
National Agricultural Library
10301 Baltimore Avenue
Beltsville, MD 20705-2351
Tel: 301-504-5755; 301-504-6856 (TTY)
Fax: 301-504-6927

National Institute of Allergy and Infectious Diseases
Office of Communications and Government Relations
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612
866-284-4107

https://www.niaid.nih.gov/

National Institute on Aging
Alzheimer’s Disease Education and Referral Center
P.O. Box 8250
Silver Spring, MD 20907-8250
800-438-4380

https://www.nia.nih.gov/

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT 06810
orphan@rarediseases.org
https://rarediseases.org/
Tel: 203-744-0100; Voice Mail: 800-999-NORD (6673)
Fax: 203-798-2291

National Prion Disease Pathology Surveillance Center
Case Western Reserve University
Institute of Pathology Building, Room 419
2085 Adelbert Road
Cleveland, OH 44106-4907

216-368-0587
https://case.edu/medicine/pathology/divisions/prion-center

World Health Organization
Avenue Appia 20
1211 Geneva 27
Switzerland, info@who.int
http://www.who.int
Tel: (+ 41 22) 791 21 11
Fax: (+ 41 22) 791 3111

To learn more about steps taken to ensure the safety of beef and other agricultural products in the United States, contact:

Food and Drug Administration (FDA)
10903 New Hampshire Avenue
Silver Spring, MD 20993
888-INFO-FDA (1-888-463-6332)

These are just a few examples. Be sure to share helpful sites you’ve found.