Q: In your experience, can memory loss sometimes help people focus on what's important in life? Can memory loss actually make someone wiser?
A: Perhaps memory loss can indeed make a person wiser because I surely continue to learn a great deal from people with memory loss. I experience a sense of immediacy in my interactions with many people with all stages of Alzheimer's - it's an experience of being engaged in each moment and yet not being too attached to that moment because the next one may be quite different.
They have taught me that what is important in life is really being present with someone else - we are often so distracted and trying to be efficient doing so many things at once. To be present with a person with Alzheimer's is to really shut out other stimulus and focus, and there is a centering that is required that can be a very valuable (and challenging) practice.
And as memory loss advances to interfere with complex thinking functions, I think what we find is a resulting greater illumination of essential feelings, values, truths - what is important may vary from person to person, but there is common ground in some essential components of our humanity and these components are often preserved well into advanced dementia - the capacity to care for and about another person - to show concern and to give comfort; the ability to feel a sense of humor and joy in the face of extraordinary losses and challenges; a stronger sense of intuition that can be revealed as other cognitive capacities are diminished.
Perhaps what is so compelling is that is doesn't require much memory to be a caring and compassionate human being and I think we'd all be wiser if we realized that.
Q: I like how you note that most of us will face some sort of disability, and so everyone has much in common with people diagnosed with Alzheimer's. Is our attitude towards Alzheimer's a mirror of our attitude towards illness, vulnerability and advanced age in general?
A: While I think our attitudes towards many aspects of aging and illness have become more dimensional and encouraging in many regards, our cultural attitudes towards Alzheimer's continue to be resoundingly fear-based. We still struggle with this prevailing paradigm of the "loss of self", the "empty shell" etc. The media as well as Alzheimer's organizations have helped to shape this fear over the years not maliciously, but in order to get attention and support for the advancement of science and services.vvWere we as terrified when our grandparents became "senile?" or simply "forgetful a few decades ago?" Not so much, but we are terrified when a loved one now has "Alzheimer's."
Q: Do you think this attitude has changed in the years since your first edition came out?
A: I don't think the fear has changed since Speaking Our Minds first came out, but I think our responses to that fear are changing. We are finding the enduring humanity in people with AD [Alzheimer's disease] -- and the development of creative life-affirming "person-centered" programs and services are a positive outcome of this greater awareness.
If fear can drive us to work towards preserving the dignity of people with AD because we fear our own loss of dignity if we, too become forgetful, then that is a positive outcome of recognizing our shared vulnerability.
Q: Do you think the current economic woes will change these attitudes?
A: Economic woes increase feelings of vulnerability and there is much fear based attention now on the costs of care and the expenses of AD. It is frightening to be vulnerable in this society, but even more frightening when you are poor. One positive is that I see people reach out to each other more within their communities - perhaps there is a bit less stigma about AD now and so there can be a way that people can come together during tough times that is heartening.
Q: Why did you choose to revise your book now?
A: I chose to revise the book now because in the last decade we have become even more focused on a cure and on a disease that people are dying from such that we often forget the importance of understanding how people LIVE during the course of AD. We need to be reminded of these stories and to continually open our minds to the stories of others.
When the book first came out, people questioned that those profiled could be so articulate about their circumstances. How could they speak their minds when they should have lost their minds? I don't know if people were as ready for the book then as they may be now. There has been a surge in awareness about Alzheimer's in the past decade and as a public, I think we are becoming more receptive to listening.
There was also much factual information to update about progress in science and care approaches (non-medical and medical) and well as the whole emerging advocacy movement that is more inclusive of persons with AD.
Q: To those hoping for a "cure," it might be disappointing to think that Speaking our Minds is as relevant today as it was ten years ago....
A: Essentially, Speaking Our Minds is timeless regardless of whether there is a cure for AD or not. The stories will always be relevant because the feelings and circumstances behind those stories will always exist for us even if AD does not. Yes, those profiled talk about symptoms of AD, but they also talk about issues relevant to many disabilities or illnesses: how they cope with changes in self concept; relationship shifts based on the onset of disability; the need to adjust expectations of oneself and others; what to do to get through challenging circumstances; responses from others that both open and shut doors.
Q: If you were to release another edition in 2019, what additional revisions do you think you'll be able to make? Do you think the stories will still be relevant?
A: In 2019, there will be more advances in science and care to talk about. I will add new stories from baby boomers who may shape their experiences differently (or not) based on how we continue to socially and personally construct the AD experience. We are in an evolutionary process medically, scientifically, socially, and personally and I believe that there will be positive advances in all of these areas in the next decade.