Ethics and Alzheimer's - Part One: Why I Can't "Walk to End Alzheimer's"

Nancy Valko
August 21, 2016
Reproduced with Permission
Nancy Valko

In the 1980s, my mother was diagnosed with Alzheimer's disease, a progressive mental deterioration due to generalized degeneration of the brain. It was quite a shock to the family and at that time, there was an unfortunate stigma attached to Alzheimer's that led some family members to insist that mom's illness be kept secret.

At one point, my mother even wound up in a psychiatric unit before we found a good geriatrician, a doctor who specialized in care for older people as well as dementia. My mother eventually died of cancer while in the later stages of Alzheimer's but she was able to be cared for at home until she died in her sleep the day she went to a nursing home.

After my mother's death, I was glad to later learn about groups like the Alzheimer's Association and the development of community resources to help people with Alzheimer's and their families. It would have been helpful with my mother.

Since it started in 1980, the Alzheimer's Association is now international and the largest nonprofit funder of Alzheimer's research . The organization's public profile has exploded through media coverage of celebrity supporters and fundraising efforts like the "Walk to End Alzheimer's" , the world's largest event to raise awareness and funds for Alzheimer's disease care, support and research.

However, I cannot walk for Alzheimer's because of its support of embryonic stem cell research as well as concerns about the organization's position statements on issues like medical treatment and tube feedings. I will be addressing those issues in future blogs.

I do not intend to just single out this organization or portray it as "bad".

I have been a volunteer for several organizations whose causes have directly touched family members and friends. However, I do examine each organization to determine how and where its fundraising is used before I volunteer to help.

Alzheimer's Association Statement "Research Using Human Stem Cells"

This 2011 position statement on their website states:

"The Alzheimer's Association policy supports and encourages any legitimate scientific avenue that offers the potential to advance this goal, including human embryonic stem cell research ; and, we oppose any restriction or limitation on research , provided that appropriate scientific review, and ethical and oversight guidelines and compliance are in place." (Emphasis added)

Raising funds for research resulting in a cure of any disease is laudable, but without ethical boundaries, such research can cross the line. Embryonic stem cell research necessarily involves the destruction of human lives in their earliest stages and should not be allowed on even just humanitarian grounds, much less funded.

Ironically, embryonic stem cells have been a great disappointment in human research and even very harmful in some cases while ethical, non-embryonic stem cells are achieving great breakthroughs, for example in treating cataracts of the eye and even paralysis .

As a nurse, I have known for decades about the ethically obtained stem cells from bone marrow donors that now every year save the lives of tens of thousands of people with cancer and other diseases.

In fact, my own grandson's life was saved 3 years ago because of a bone marrow transplant!

So while I appreciate the Alzheimer's Association's effort to help people with Alzheimer's and their families find practical resources for help and support , I cannot walk to raise research money for a group that not only supports embryonic stem cell research but also opposes any restrictions.