Alzheimer's blog

Alzheimer's research volunteers critical to helping find a cure

By Angela Lunde February 7, 2012

Every year, it seems there's buzz around a miracle treatment for Alzheimer's that captures our attention. Right now, it's stories of Alzheimer's being halted or reversed with coconut oil. The recent testimonials are compelling indeed.

Those of you who read this blog know that I'm deeply passionate about helping caregivers stay positive and find ways to cope with the devastation that surrounds Alzheimer's — you know I would love nothing more than to share in the excitement and possibility of a cure. As it stands however, there's been limited research on coconut oil. Any existing evidence lacks scientific confidence that it helps. The individuals who have experienced such incredible results remain too few to get our hopes up just yet. But, like many of you, I'll remain cautiously optimistic and pay attention to what unfolds.

This compels me to take this time and highlight how critically important it is to keep research moving forward. What follows is a guest posting by Elisabeth Paine. Elisabeth is a fellow caregiver on this journey who exquisitely describes her story and her bold effort to fight back.

"At the age of 42, I married a wonderful man, John, who was intelligent, competent, independent and fun. We laughed a lot. We talked about growing old together, traveling and building memories. That vision shattered about three years ago. When he was 65, John was diagnosed with Alzheimer's.

I began to suspect something was wrong long before we heard the official news. I was practiced; I have watched first my grandmother, then my father and now my husband be slowly destroyed by dementia. Now at 53, I am caring full time for John as he suffers from this irreversible, progressive and heartbreaking disease. Although I fear for my husband as he struggles with his daily challenges, I am also worried about losing myself to this new set of responsibilities ... forgetting who I was and who I am.

I see my new life as existing in three concentric circles.

The innermost circle is for John: caregiving. It is not a natural role for me and I have to work hard at it. I try to slow down, to be a lot more patient. Both are a constant struggle. I read books and blogs and take classes, all to educate myself, to develop techniques and learn about the disease.

The next bigger circle is for me: a support group for early onset spouses which I started. Our issues are different than those of older people with Alzheimer's and we help each other cope by sharing knowledge, techniques, laughter and providing a safe place to vent. Starting this group let me fight back a little against this disease.

My biggest "fight back" is my outermost circle: participating in Alzheimer's research as John's study partner. This circle is for both of us, for his sons and for future generations. Alzheimer's is currently not just incurable but untreatable. The available drugs can alleviate some of the symptoms, but they don't slow the disease.

We joined a clinical trial, led by the Alzheimer's Disease Cooperative Study (ADCS), for two reasons. The personal one was that it gave John access to a potential new treatment that might help him. That was a long shot, though, and the bigger reason was to pull some good out of our situation by contributing to a future cure. John is very proud to be contributing to science.

There are over 5 million Americans today living with Alzheimer's and 14.9 million Alzheimer's caregivers like me. My brother, my stepsons and I all have a history of Alzheimer's in the family. I want a cure before this disease devastates another generation, for us and for the millions of other families like us.

Fifty percent of people past the age of 80 will get this disease — yes, that means you and your family are on the firing line. And right now the pace of research is slowed because of a lack of volunteers!

Please, please think about getting involved in Alzheimer's research. We need people from all age groups — not just the elderly — and all levels of cognitive ability: "normal", mild impairment and Alzheimer's patients. Do it for yourself, for your children, for the greater human good.

Studies like the Alzheimer's Disease Neuroimaging Initiative (ADNI) are at the cusp of further discoveries that could help better treat Alzheimer's, but need volunteers to be successful. To continue the momentum, we must spread the word that everyone can contribute in some way to finding a cure. Changing the face of Alzheimer's is possible, but we can't find the answers we need without volunteer partners in science.

The National Institute of Aging is the lead Federal agency for Alzheimer's disease research and continues to study new drugs to reverse Alzheimer's disease. In addition, websites of ADNI, Alzheimer's.org and clinicaltrials.gov offer information on research opportunities and ways you can help."

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Feb. 07, 2012