Still, I wondered who the book was written for, and sent a note to Dr. Zeisel asking about his intended audience. This wasn’t an idle question - I’m working on a printed Patient Guide called Living with Memory Loss, and have been thinking about who the audience will be. Nor was it an easy question – as you’ll see by his response below, it took Dr. Zeisel a while to mull this over.
Most publications about Alzheimer’s are written for caregivers. But I know that my father wanted detailed information about memory loss when he had mild dementia. I’ve also noticed that Tangled Neuron readers (or at least the ones who comment or email me) are a varied lot, ranging from caregivers to people diagnosed with dementia, to still-sharp baby boomers worried that they will develop Alzheimer’s. So I’ve decided to try to make the material in Living with Memory Loss valuable for people with memory loss as well as for caregivers, and see what kind of feedback I get.
I’m glad Dr. Zeisel concluded I’m Still Here is relevant to this broader audience. His book is an important reminder that people with cognitive challenges are valuable members of families and society. Including them as much as possible in educational efforts makes good sense.
Q: Is the book written mostly for caregivers?
A: I feel the book is most pertinent to caregivers, whom I call “partners” in the book. This includes family members, paid caregivers, and professionals. I feel reading I’m Still Here is also particularly relevant to people living with Alzheimer’s and dementias early in the illness. From the book they can gain hope that their lives can be rich as well as difficult, in relationship as well as in illness, positive despite losses. Finally, I’m Still Here is also written for the millions of baby boomers who stigmatize the illness and live in almost constant fear. I want them to know that life goes on beyond a diagnosis—that an Alzheimer’s diagnosis is not an Alzheimer’s “sentence.”
Q: Would you say that the observations and recommendations in your book pertain mostly to people with moderate to severe dementia?
A: Some people have told me they feel the book is primarily about people living in the early stages of Alzheimer’s; others have said it pertains more to those living in the moderate to severe phases of dementia. I personally believe that the I’m Still Here approach is applicable to all those living with Alzheimer’s and other dementias no matter how long they have lived with it. The discussion of symptoms in the first few chapters covers the entire span of the illness. People can benefit from museums at any stage of Alzheimer’s. And being a partner who wants to build a relationship with their partner has to start at the beginning and stay the course. It is up to the reader to gather what he or she can from the book and sensitively apply those lessons to the person they know, care for, and love—no matter what stage of the illness.
Q: Are there portions of your book you think would be beneficial for people with mild memory loss to read?
A: There are. I particularly recommend ……
(The reason I took so long answering this email is that it has taken me all this time to decide the answer to this question. At first I thought I needed to identify the parts most relevant to a person with mild memory loss. I could not find any one or two parts particularly for them. Then I decided to identify those parts that might be too difficult or painful for them. I could not find any part. So I asked a friend or two and they had no answer either. Now, after rereading I’m Still Here I have an answer.)
The entire book would be beneficial for everyone with mild memory loss. The descriptions are in straightforward English. The message is both factual and hopeful. The book addresses the present and the future in non-emotional language, expecting the reader—hopefully many with mild memory loss—to see the positive message: Let’s focus on the present and all the capacities we have; let’s make sure that we cherish what is meaningful to us and that we continue to add meaning to our lives; let’s build relationships with those we love and who love us; let’s not allow the rest of the world to dictate that an Alzheimer’s diagnosis is an Alzheimer’s “sentence”; and let’s face the future together.