Q: What makes this book different from other available resources on Alzheimer’s disease?

A: There is no other book that provides detailed and diverse accounts from multiple people with Alzheimer’s on the experience of living with the disease. There are a handful of books written by individuals that chart a singular experience, but these do not provide varied perspectives coupled with professional commentary that enhance the reader’s education and understanding of the Alzheimer’s experience.

Q: What motivated you to write this book?

A: I wrote this book to illuminate and honor the varied voices of people with Alzheimer's and to alleviate the personal isolation that can accompany this disease. Although we have a wealth of valuable scientific, professional, and caregiver literature, we are only beginning to explore and make public the direct experience of the person diagnosed.

Q: Is there a specific reason why the book is laid out as it is?

A: Speaking Our Minds is organized to reflect the processes involved in respectful and engaging dialogue. Part 1, Listening, sets the tone for how the reader can better realize the importance of listening and creating a climate where a person with Alzheimer’s feels safe to speak. Part 2, Speaking, provides the conversational narratives between myself and seven people with Alzheimer’s. We all speak our minds and express our perspectives on the Alzheimer’s experience. Part 3, Responding, reveals to the reader the ways in which individuals, organizations, and societies are compelled to respond to the messages that those with AD have spoken.

Q: How can this book be used?

A: Speaking Our Minds can be used to sensitize care partners, professionals, students, or any reader to what it feels like to have Alzheimer’s. Care partners can read the book to become more in touch with what their loved one might be experiencing; professionals can learn not only about the lived experiences of the clients they work with, but also through my own reflections, gain insight into more effective ways to work with and relate to persons with Alzheimer’s. Students (medical, gerontology, nursing, social work, other allied health care professions, or long-term care providers) can read the chapters as case studies with each person providing distinct presentations of symptoms, coping styles, and issues that confront those attempting to provide care.

Q: How did you choose the seven individuals you interviewed?

A: I did not set out to write a book; rather I began to interview people with Alzheimer’s in an attempt to become more sensitized to their experiences. Their interviews became so compelling to me that I felt they warranted a more public audience. From those I had begun to interview, I selected seven individuals of diverse ages (ages 34-82), ethnic backgrounds (Caucasian, Hispanic, African American) and with varied symptoms, coping styles, and educational and socioeconomic backgrounds who were willing to have their messages made public in a book. I also made sure that each person had a comprehensive diagnostic evaluation from a reputable medical group and that the diagnosis remained consistent over time through repeat evaluations.

Q: What have you learned as a result of your work on this book?

A: I have learned that there is no one approach to living with Alzheimer’s – that seven other people would have told seven different stories and that each person needs to be approached first as a person and second as a person with Alzheimer’s. I have learned from the opportunity to have detailed conversations over time that I have much more in common with people with Alzheimer’s than I have differences – that our shared humanity can uphold and affirm our relationships when the symptoms of disease threaten to drive their distancing wedges.

Q: In your opinion, what do individuals with Alzheimer’s teach us?

A: Our society has not positioned people with Alzheimer’s as our teachers and that is a great loss. If we allow ourselves to be students, there are countless lessons in the Alzheimer’s experience. Each person will be tested in different ways and gain insights into both their strengths and their shortcomings as they attempt to live with symptoms or care for another affected by them. What is unique to the Alzheimer’s experience, however, is the acute memory loss that permeates so much of the daily life experience. What we can all learn over time is that what we really only have is NOW – the past is increasingly elusive, the future is uncertain, and the present is here in this moment.

And what makes up those moments we have? How present are we in them? I lived for a year with my grandmother when she had dementia. She had been an artist and she
would sit quietly for long periods of time during the day and stare or sleep. One afternoon, she was staring intently at a bowl on the sideboard across the room. She called to me, pointed and said, "look at that – look at the light on the bowl." I looked and indeed, the light on the bowl was gorgeous – the angle illuminated the contours of the bowl and it was glowing.

A few years later, lying in her bed, she could no longer speak and was near death. She pointed out the window at the sunlight on the greenery and smiled slightly. When so much memory and ability was lost to her dementia, she never forgot how to see beauty. We can learn that when we feel overwhelmed and separated by what has been lost, we can lose sight of what remains.

Q: Can reading your book change the life of a caregiver or a person with Alzheimer's?

A: Our individual lives and our societies are all changed, enhanced, and made more humane when we are afforded the opportunity to feel empathy for one another — to have a greater sense of connectedness to one another and a shared responsibility for our individual and collective well-being.Caregivers often wonder what their loved ones are thinking and experiencing and sometimes struggle to have empathy for their loved one’s experiences. Speaking Our Minds open doors to a greater understanding of what it feels like to live with symptoms and can help to build a pathway to greater empathy and connection between the care partner and the person with Alzheimer’s. For people with Alzheimer’s, they often express feelings of relief and reduced isolation when they learn they are not alone – that others walk this confusing and sometimes lonely path. Hearing others speak their minds can give readers with Alzheimer’s the courage or permission to speak their own minds and stay connected to others through this opportunity for communication.

Q: If your book broke new ground 10 years ago when it first published, what do you hope it will accomplish in a revised edition?

A: Once the ground is broken and the seeds sown, it requires continued cultivation to ensure that a new movement in how we understand and approach persons with Alzheimer’s can grow and flourish. In Speaking Our Minds, the perspectives of the persons with Alzheimer’s are enduring and their voices continue to teach and nurture new insights in readers. The revised edition hopes to reveal to readers the ways that our society has grown in the past decade as a result of better listening and responding to persons with Alzheimer’s around the world. It is a hopeful testimony that while
scientists continue to work towards a cure for this devastating disease, individuals and societies are working towards cultivating greater compassion and quality of care for this growing and more public segment of our population.

Q: How has your experience as a researcher shaped your views about Alzheimer’s?

A: My research has been into the psychological and social ramifications of having Alzheimer’s and on the efficacy of support interventions aimed at improving quality of life. Research is by definition, the process of searching – of seeking confirmation for hypotheses or assumptions. While some research findings have been very helpful in illuminating the lived experience of AD, they do not represent the whole truth. I remain continually open to this searching process throughout my work with persons with AD and, as a result, continue to learn.

Q: What would you say to a family caregiver who is reading your book for the first time? A professional caregiver? An individual with Alzheimer’s?

A: If you are caring for a person with Alzheimer’s, this book is not intended to be a manual or practical guide. There is no advice offered, no steps outlined. Speaking Our Minds aims to provide insights into the concerns and experiences of your loved one and will illustrate the profound importance of your own role in his or her life. The issue of human relationships is ever present in these narratives, revealing the ways in which we open our hearts and minds to one another — and how we sometimes shut them down, too. You may want to read this book with your loved one and use it as a starting point for conversation. If the one in your care denies having Alzheimer’s or is uncomfortable discussing it, I commend you for seeking the voices of those able to talk about it so that you may learn from them what your loved one is unable to convey.

If you are a professional caregiver, this book reminds us of the people who form the core of your commitment. Although the individuals profiled in this book are able to speak about their reflections and feelings, in all likelihood their expressions will change over time from verbal to nonverbal — to more behavioral or symbolic gestures. If we can learn the themes of communication early on, perhaps we can be sensitive to the ways they might be repeated later in the course of the illness. People may continue to experience similar feelings but express them differently as their confusion increases and their capacity to speak decreases. We must begin to listen early in the course of
Alzheimer’s in the hope that doing so will enhance our understanding as symptoms advance.

If you are reading this book and have been diagnosed with Alzheimer’s, you will be introduced to seven of your peers. Some of their voices may resonate with you and speak to your thoughts, feelings, and reflections. Other voices may offer less with which to identify. That’s the nature of honest discussion about a highly variable disease. Alzheimer’s will profoundly affect you, but it will not wholly define you. You will have your own unique voice as you experience and live with symptoms. As you listen to these individuals speak their minds, through your own agreement or disagreement may you find a forum for your own voice to be heard.

Q: Explain about the role of listening when it comes to interacting with someone with Alzheimer’s disease.

A: All too often it is assumed that due to their cognitive “deficits” persons with Alzheimer’s lose the ability to engage in meaningful communication and have little left to communicate. Listening requires negating this prevailing assumption and assuming instead that, as long as he or she is alive, a person with Alzheimer’s has messages to convey that are waiting and needing to be heard. When we adopt this belief, we begin to adopt a listening stance that opens our minds and hearts to communication.

Q: During your interviews with the individuals with Alzheimer’s, did they ever say anything that surprised you? What was it and why?

A: I was surprised that some of the symptoms that we associated with more advanced disease and a time when we assume that persons with AD cannot communicate about their symptoms effectively were actually described quite clearly by some of the persons I interviewed. For example, we assume that not being able to recognize a loved one was an advanced stage symptom, but Bob describes in detail an episode of not recognizing his own son. Bea is able to discuss with candor and recall the frustration with not being able to dress herself, also a symptom associated with more significant
impairment.

I was also surprised by the creative and conscious ways in which the persons I interviewed worked to protect their dignity. A common assumption is that people with AD have little insight into their symptoms and this assumption was repeatedly negated by their descriptions of self-protective responses to the symptoms that threatened their selfhood.

Q: Did you learn anything new about the symptoms of Alzheimer’s during your interviews?

A: In addition to my answers to the previous question, I also learned that Alzheimer’s symptoms are really in some ways dramatic and ultimately devastating exaggerations of experiences anyone can have in daily life. The symptoms are not bizarre; they are extreme and repeated encounters with common problems.

Q: How would you like to be treated by others if you developed Alzheimer’s?

A: I would want people to know what was important to me during my life – my values, preferences, likes and dislikes that shaped my sense of self so that they could continue to be affirmed. I would want to be treated with patience, respect, and above all with kindness. And I would want touch – gentle massage, hugs, the security of connectedness to others who cared about me.

Q: Given all of your work with Alzheimer’s, what questions do you have about the experience that have gone unanswered? Do you think they will ever be answered?

It is hard to gain as much insight into the advanced stages of Alzheimer’s as expressions of communication become so challenged. We are learning much more effective ways to engage a person with advanced symptoms through music, touch, and other sensory experiences, but we need to learn more effective ways to be present and connected to persons with advanced Alzheimer’s. We can’t succumb to the notion of a “long goodbye” when people with Alzheimer’s need us to continue to say "hello."

Q: Do you ever find that you personally identify with someone with Alzheimer’s with whom you are working? In what ways?

A: It’s rare that I don’t identify with the persons with Alzheimer’s with whom I work. They invite me to expand my own self-awareness and empathy. Identifying means to find the common spaces of existence that form bridges between us as human beings – whether it is empathy for an expressed feeling or circumstance, a shared piece of history, a manner of coping, a communication style, an enduring capacity for hope. There is plenty to identify with if you are willing to build that bridge and walk onto it.