Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers

When I was diagnosed with ALZ — not AD — some fifteen months ago, I looked for many sources of understanding. I found many good ones: Cohen, “Loss of Self;” Powell, “Alzheimer’s Disease: A Guide for Families;” Hodgson, “Alzheimer’s: Finding the Words;” Jones, “Gentle Care;” and especially Small, “The Memory Bible;” and Shenk, “The Forgetting.” All of these treat the person diagnosed with ALZ with respect, since “There’s Still a Person in There” [Castelman].

Now we come to Kuhn’s opus minor. Here I am reminded of the climatic scene in the book “Hannibal.” Lector has seized the FBI Supervisor Paul Krendler {Ray Liotta in the movie}, has sliced off the top of Krendler’s cranium, and is serving up slices of fried brain, with fava beans. Kuhn somewhat resembles Anthony Hopkins in his condescending regard for those of us with ALZ. It is interesting to note that a “Daniel Kuhn” has posted two reviews on , one of this book {} and one on DeBaggio, “Losing My Mind.” The latter posting rivals Lector’s exploits in “Red Dragon” with its cruelty towards DeBaggio.

Nevertheless, one cannot accuse Kuhn of false advertising: his subtitle indicates that his book is “A Guide for Family Members and Friends.” By the principle of inclusis unis, exclusis alterius, one can conclude that he did not intend his book to be read by facilitators, therapists, and other professionals in the ALZ field, as well as those of us who have “windows of clarity” as this insidious affliction takes us in its downward spiral. Since I am neither a family member nor a friend, I cannot speak, except as one who regards his label as a challenge, rather than as the Kuhn suggested stigmata or disgrace.

Thus, it is an affront to a person with diagnosed ALZ to state that “the decision about disclosing the diagnosis must be weighed in light of the needs of the person with [ALZ] and the needs of others.” [p.113]. On the previous page, he mentions with obvious distaste those “people with the disease [who] sometimes have an uncanny ability in the early stages to “rise to the occasion” and [have the efrontery to] hide the symptoms.”
We don’t hide the symptoms, or hide from the symptoms, we face the symptoms, and adapt to them. But to do this would require Kuhn and others of his ilk to communicate with us, so that we can “Speak Our Minds,” Snyder.

Although Kuhn claims more than 25 years as a clinical social worker in the fields of aging and health care, he has been a MSW since 1987, and is currently director of education for the Mather chain of assisted living. His book claims director of eductation at the Rush Alzheimer’s Disease Center in August 1999, but Mather states that he joined their auspices in 1999. As an Emeritus Professor, I am well aware of the student jibe that “Those who do, Do. Those who can’t, Teach. Those who can’t teach, Teach Teachers. And, Those who can’t teach teachers, become Deans or Education Directors.” Kuhn demonstrates the truth of that folk observation in every chapter.

Since I am looking at this book from the standpoint of one who is diagnosed with ALZ, his Chapter 9 on “What is it like to have Alzheimer’s Disease” deserves most crucial scrutiny. Here he points out “that only five books have been authored by people with [ALZ], written with the help of their loved ones.” He has not spoken with any of us who keep journals, diaries, et al, at considerable emotional energy expenditures, since he regards these five as “[PROBABLY] exceptional individuals with a high degree of awareness about their disease who [RETAINED] a remarkable ability to communicate.” [p. 81, emphasis added.]Au contraire, if Kuhn were to attend some ALZ-only sharing groups, unhindered by his displayed ignorance, he would learn that most of us are keenly aware of our disease, and can communicate that awareness to those that have “ears to listen, and eyes to see.”

Oh yes, some of us are dually diagnosed with major unipolar depression as well as ALZ, and we add Prozac and Wellbutrin to our daily Donepezil. If we were holistic physicians we would prescribe human kindness and empathy to Kuhn’s daily regimen, but he would likely not to stick to his medication because of the side effects. As for Kuhn’s revision, one would hope that he will include some qualitative research as well as his quantatative surveys, which are useless for individuals and those around them. Otherwise, Uvis aridior puer passis quae suco caret ut putrisque pumex.
Rating: 2 / 5

I was reading everything I could find on the subject, but I wished that there was a book about the early stages. I was a long way from needing all of the end of life material I was reading. I found my answers in this book and will review it as time goes on. Thank you.
Rating: 5 / 5

This was written by a professional (clinical social worker), but can be easily understood by laypeople. It gives stages of Alzheimer’s–what one can look for in the early, middle and later stages. And is also helpful about how to seek help.
Rating: 4 / 5