When you’ve lived with Alzheimer’s disease in your family, it’s common to feel like you want to do something to keep other families from having to go through the same struggle. While others may suggest that you do volunteer work in the area of dementia, many caregivers, including me, could not even think about volunteering for such work. But the feeling of hoping others will be spared the anguish of seeing their loved one suffer from dementia does not go away.

Not long after my husband, Bob, passed away from Alzheimer’s disease, I received an envelope in the U.S. Mail from an organization named “Alzheimer’s Disease Research.” I opened the envelope, glanced through the contents, and quickly saw that it was a request for a donation.

My grief-filled brain was incapable of serious analysis so I mistakenly concluded that it was from the Alzheimer’s Association. I sent a small donation and promptly forgot about it until I received a repeat request some months later. This time I was clearer thinking and took the time to do a search on the internet to see if there was a connection between the two Alzheimer’s organizations. There was none. I decided to limit my donations for Alzheimer’s research to the Alzheimer’s Association.

You never knows how your name ends up on a mailing list, but just in case you are on the Alzheimer’s Disease Research’s (ADR) mailing list I have gathered some interesting facts from Charity Navigator. It is the largest evaluator of charities in the country.  Its mission is to gather data from non-profits and make them available for free to interested parties.

To begin with, I was surprised to learn that ADR is a program—not a stand-alone charity— of a nonprofit called BrightFocus Foundation. The mission statement for BrightFocus is as follows: “BrightFocus funds exceptional scientific research worldwide to defeat Alzheimer's disease, macular degeneration, and glaucoma and provides expert information on these heartbreaking diseases.”

I was not able to find specific data related to ADR’s work in the area of Alzheimer’s disease. However, on the ADR home page, I learned, “Since 1985, the Alzheimer's Disease Research (ADR) program has awarded nearly $120 million to support promising research in fields ranging from molecular biology to genetics to epidemiology”; an average of $3.5 million a year. By comparison, the Alzheimer’s Association, founded in 1980, awarded over $165 million to active grants for research in 2018 alone!

More important to me was when I researched what advocacy for dementia research funding each organization had done, I couldn’t find any information about ADR’s advocacy, but the Alzheimer’s Association has a sterling record of advocating for Alzheimer’s funding from the U.S. Congress:

• Starting in 2000, the Alzheimer’s Association worked with Congress to improve Medicare benefits for Alzheimer’s patients and their families.
• Its most recent advocacy in 2019 resulted in a $350,000 million increase for Alzheimer’s and dementia for research funding at the National Institutes of Health.

Making even a small donation to a charity working on behalf of Alzheimer’s families can make a former caregiver feel like they are doing something for others. I know it does that for me.

Caregivers are encouraged to check out any organization claiming to be assisting in Alzheimer’s research by going to the Charity Navigator website:  charitynavigator.org