Posted 25 May 2005

On April 13/14, 2005, several major newspapers (including the Washington Post and the Wall Street Journal) ran an article titled, "Alzheimer's Drug May Help Delay Onset of the Disease" (and the findings appeared online in the New England Journal of Medicine on April 14). I wanted to share my response/comments to this article from the perspective of a future geriatric social worker, and from my experiences working with/caring for Alzheimer patients and their families (my grandmother is in the late stages of Alzheimer's, and I also volunteer at an Alzheimer respite center in Virginia).

My grandmother was on Aricept several years ago (as are many of the people at the Alzheimer respite center where I volunteer). This article gave me the impression that some doctors want to prescribe it before a person has been diagnosed with Alzheimer's, but has shown signs of dementia.

I like the idea of using the drug in the pre-Alzheimer/early stages to "buy time," so that families can talk openly about the disease and the plans that will need to be made in preparation for the future. I have seen firsthand how early diagnosis is important because it allows plans to be made ahead of time, rather than once it's too late and the situation has progressed into a crisis. Unfortunately, I have seen other families hesitate to receive a diagnosis and postpone these discussions out of fear ("I'd rather not know"), denial ("It's really not that bad right now"), or lack of information/education ("This is just part of getting old"). Therefore, it seems that this approach to using Aricept has the potential to be effective.

However, it also seems that this approach would only be effective if combined with counseling/education by doctors, social workers, etc., who can walk families through the necessary steps they must take during this time they have "bought." Since Aricept typically delays progression by 6 to 12 months, families need to act quickly on measures such as obtaining medical power of attorney, writing a living will, choosing a nursing home or making arrangements for home care (when the time comes), and implementing home modifications to accommodate physical and cognitive changes brought on by Alzheimer's, etc.

My grandmother—who was formally diagnosed with Alzheimer's 7 years ago but who has clearly had the disease for over a decade—took Aricept several years ago, which probably delayed the progression of the disease to some extent. However, these benefits were short-lasting because my family did not use that time to discuss options openly (including discussing them with my grandmother). They are now in a downward spiral where issues are being dealt with after the fact, which has resulted in significant stress and pain for everyone involved. For example, my grandfather never got medical power of attorney. Last week, my grandmother was taken from her nursing home and placed in a psychiatric hospital because she "wouldn't stop screaming"; as if that wasn't stressful enough, she had to become a ward of the state (in North Carolina) before being transferred (which actually entailed a "police escort" and five long hours sitting in the hospital waiting room).

Had a trained professional (such as a social worker) intervened earlier-perhaps at the time the Aricept was prescribed-and spoken frankly with my family about all the things they must consider for the years to follow, then perhaps that nightmare could have been avoided. As many know (and I am learning), Alzheimer's is such an emotionally draining disease that it's hard for many people to handle the logistical/legal issues-on top of the realization that you are about to lose your loved one forever. Although I was not able to help my family during the early stages of my grandmother's illness, I am committed to becoming a social worker so that I may ease the burden of other families like mine in the future (I am currently enrolled in a graduate social work program at Catholic University in Washington, DC).