Thursday, March 17, 2011

The Narrative of Fear vs. the Narrative of Hope

There are competing narratives about Alzheimer’s disease, the narrative of fear and the narrative of hope. The narrative of fear is filled with words like “devastating,” “deteriorating,” “debilitating,” and “heartbreaking,” all of which can be found in the third paragraph of the Alzheimer’s Association’s new report, “generation Alzheimer’s: the defining disease of the baby boomers.” A page later we come to the terms “crisis” and epidemic,” and even then the narrative of fear is just beginning to build a head of steam. It perhaps reaches its zenith with the words “Most of America’s baby boomers will spend their retirement years either with Alzheimer’s disease or caring for someone who has it.” If you are experiencing a distinct shortage of fear and dread in your life, you can order a copy from them. Oh, the report is not available on the Alzheimer’s Association website: you must provide contact information, and then they will email you a copy. Which likely means you will receive many more emails and letters filled with fearful language and a plea for funds.

There is a bit of hope woven into this narrative of fear: the hope that with enough research (and enough money to fund it) we will surely find a cure for AD (“Scientists believe we are at a tipping point right now!”) and baby boomers will live joyously in a lovely land of rainbows and unicorns. I must be talking to the wrong researchers, because the ones I know are investing their hopes in early diagnosis and treatment that begins long before the symptoms of dementia present themselves, not in “curing” AD that has already developed. And they do not think this will happen next week, or next year.

There is certainly truth woven into the narrative of fear. It claims that research on AD and other dementias is terribly underfunded, and that ageism is a factor in this underfunding. I can’t argue with that one. There is growing evidence that AD will one day be preventable in some persons and better manageable in others. But for the majority of baby boomers, any pharmacological breakthrough will likely come too late to benefit them directly.

Let me be very blunt: the Alzheimer’s Association is engaging in fear-mongering in this report, and an unavoidable consequence of such fear-mongering is to further stigmatize those already living with AD. How can it not when so many words of horror and revulsion are used to describe the condition and the cost to society it brings? Ironically, local chapters of the Alzheimer’s Association continue to do wonderful work, providing support and services to many, many people living with AD and their care partners, even as the national organization has shifted its emphasis to research advocacy and fund-raising, focusing on “curing” AD rather than serving those already living with it.

I support the cause of more dollars for research, but reject the narrative of fear. In our book, Susan and I hopefully make a contribution to the narrative of hope, arguing that a person living with dementia remains fully a person, able to share in relationships of love and laughter, and that communities must find creative new ways to value and include those of us journeying into progressive memory loss. We are not Pollyannas who deny that dementia can bring terrible hardship, particularly in the late stages. But we believe that it is not only possible, but morally essential, to seek the fullness and goodness of life for our friends with dementia.

Another voice in the narrative of hope is Michael Friedman, who in a marvelous article in The Huffington Post (which has recently published a number of excellent pieces about dementia) talks about how he used to fear developing dementia so badly that he used the standard line “just shoot me,” but increasingly is able to envision living with dementia while still experiencing love and joy. He concludes with these words:

There are, as we all know, people with dementia who become depressed, frightened or angry -- some so angry that they are abusive to people who try to care for them. There are some people with dementia who wonder why they are alive, or wish for death.

But there are also people with dementia who experience pleasure, who feel love and who are at peace.

So, even though I still fear developing dementia, I no longer say with any sense of certainty, "Just shoot me."