I first came across I’m Still Here: A New Philosophy of Alzheimer’s Care by John Zeisel at Lisa’s review here. One of the main points she discusses there, of not “testing” the person with Alzheimer’s (Do you know who I am? Who this is? Do you remember…) but rather giving them the information they need first hand (Hi Mom, it’s your daughter, Barbara, and this is your grandson, Jesse. We’ve come to visit you today) was so simple and practical and yet so good and helpful, I wanted to read the rest of the book. My own mother-in-law in our home does not have Alzheimer’s, but she has had bouts of dementia, and I thought some of the general information about aging might be helpful as well as the specifics about dementia.
One of the overriding themes of the book is to concentrate not so much on what the person has lost, but to deal with what they have now. “Those living with Alzheimer’s who use parts of their brains that still function well, feel enabled and competent, and are less apathetic, agitated, anxious, and aggressive” (p. 9). Those last four “A’s,” he says, are not so much symptoms of the disease itself but rather reactions or results that can be minimized.
Another theme would be to “discard old expectations and role relationships that limit our ability to see the person and relate to him or her in a new way” (p. 11).
Another would be that Alzheimer’s is more complex than just short term memory loss. For instance, a patient “doesn’t ‘forget’ how to get dressed or brush his teeth; it is just more difficult to put all the steps in the right order for multistage activities” (p. 70). Likewise, socially, it’s not so much that they “forget” how to act, but rather “losing control over naturally occurring feelings” (p. 71).
The author discusses the medical aspects of Alzheimer’s, which parts of the brain are affected and which still work well but may need help to be accessed, and gives multitudes of ways to help access that part of the brain and reduce some of the negative reactions. So many of these are so helpful and practical, such as the supplying of information rather than asking questions I mentioned earlier, or the birthday party he described for a person who angered easily. He suggested having it in a dining room, so the setting helps the person know what is expected (rather than a living room or community room where they don’t know what to expect), seating them next to a grandchild, which “evokes hardwired caring instincts,” and having everyone wear name tags (pp. 71-73).
One chapter dealt with arranging living spaces to facilitate patients’ movement and avoid problems. One good idea was “landmarks located at points where a decision must be made, such as a corner or a doorway.” Another was “camouflaged exits.” This was a big problem at one facility my mother-in-law was in. The main doorway was set off by a hall, making it so the workers couldn’t see it unless they walked that way. A lot of the residents accumulated at the doorway, making it hard for visitor to get in and out (in fact, I got scolded once for letting a resident out, but I didn’t know she was a resident. Visitors shouldn’t be expected to police the doorways). Another tip here would have helped this facility: have walkways that are safe and go somewhere, so the patient walks instead of wanders (p. 145). This particular place had no place for patients to “go” – they just had hallways to rooms and a big sitting area, and the aides tried to herd everyone in the sitting area to sit brain dead and silent in front of a TV to keep them under control and out of trouble (as you can surmise, I do not have good feelings or memories of this place). By contrast, the first facility she was in had walking paths that made a circle through the building (she was still using a walker then, and when my husband visited, they would “take a walk” around the circle). They also had a nice screened-in porch (without a door to the outdoors) so residents could enjoy the weather and view and fresh air and still be safe. “The hormone oxytocin is released in the brain when people feel safe. This in turn contributes to lower stress and to greater trust and sociability” (p. 138), so setting up an atmosphere as safe and wired for success as possible helps.
The author asserts that one area of the brain that still works well is creativity, and he spends a good portion of the book discussing the use of the various arts. My first thought was that that would not have been helpful with my husband’s mother, as she was never one for museums or art galleries or plays and such. But as he presented it, I saw ways they might have been useful earlier in her life, though I can imagine she would not have been excited about a trip to the museum at first. But many might find these tips helpful. I did appreciate some of the helpful, thoughtful tips scattered throughout this section, like not asking “What does this painting represent,” but rather asking a specific question about something in it, explaining why they were in the museum or gallery without being asked, not asking them what they saw a half-hour ago, not pursuing a line of conversation if they get anxious, and others (pp. 96-97). Some of these would translate well to other excursions.
One of the most valuable sections is on communicating with a person with Alzheimer’s. The author puts forth these rules and elaborates on them:
- Hear and respond to the other person’s “reality.” Don’t try to talk them out of it.
- Be honest.
- Always address the person directly.
- Don’t test (as discussed in the first paragraph).
- Don’t say “don’t”; divert and redirect instead.
A few other important points:
It’s not right to think of Alzheimer patients as entering their “second childhood.” They have knowledge and life experience children don’t have (p. 10).
“Be sure to ask the person with Alzheimer’s for expressions of emotions rather than cognitive data. Ask how they feel about a topic, not who was there a little while ago, or someone’s name” (p. 190).
When moving someone with Alzheimer’s into a new living situation, don’t buy all new things for them or their room (p. 185). Make sure they are surrounded by familiar items, clothes, wall decorations, etc.
I admit near the end I got a little frustrated, because it seemed as if the author were saying that if we just did all of these things, everything would work out fine and Alzheimer’s would be a beautiful and rewarding experience, and I know from many friends experiencing this with loved ones that it is not that way, no matter what you do. But he does advocate, in a section on caring for yourself as a caregiver, having someone you can safely “vent” to, to “pour out your heart with all its anguish and fear” and share “the ‘terrible’ feelings you have” (p. 213). It helped to see this admission that there will still be those times. These tips won’t eliminate every difficulty with Alzheimer’s, but they will help in many ways.
There were a few places I disagreed with him. In one place discussing different types of health care and aid available, he mentions nursing homes as an option as if one can just choose and make arrangements to go there. I don’t know how it works in other states, but here, it’s pretty much impossible to get into one unless you’re coming from a hospitalization. One social worker said she could put us on a waiting list, but they almost never admit someone from a waiting list because they have so many admitted from the hospital (much of this due to Medicare regulations). A few pages later he mentions staff members in both assisted living facilities and nursing homes “who want to work there because they have a natural empathy with elders living with Alzheimer’s” (p. 206). As much as we would hope so and like to think so, that is just not the case (I could tell you stories….). Maybe they started out that way but got burned out, I don’t know. Finally, there is a New Age-y/Zen/Buddhist feel to parts of the book, culminating in a chapter on mindfulness meditation that I would personally be uncomfortable with and even find harmful.
But the strength of the book, and what I appreciated most about it, is the gracious and thoughtful approach to communicating with and dealing with those with Alzheimer’s that permeates every facet of the book.
Potential objectionable elements: Buddhist-type philosophies
My rating: For what I mentioned in the last paragraph, I’d give it a 10 out of 10, but due to some of the philosophical differences, overall I think I’d give it a 7 out of 10.