I'm Still Here: A New Philosophy of Alzheimer's Care

by John Zeisel

A glass-half-full look at Alzheimer's that reveals how to connect with someone through the fog of the disease. As many as five million Americans are living with Alzheimer's. The popular perception of the disease is that people who receive an Alzheimer's diagnosis are lost to themselves and to those who love them-and that they have no future. But as John Zeisel, an innovator in nonpharmacological approaches to treating Alzheimer's, makes clear in this book, this view is wrong. The disease often lasts ten to fifteen years-a time span that definitely constitutes a future. In I'm Still Here, Zeisel shows that during the course of Alzheimer's, caregivers can have a vibrant and meaningful relationship with people who have the disease. I'm Still Here focuses on connecting with individuals with Alzheimer's through their abilities that don't diminish with time, such as understanding music, art, facial expressions, and touch. Zeisel demonstrates that people who have the disease are highly creative and emotionally intelligent. By harnessing these capacities, and by using other approaches to treatment-such as building memory cues into their living environment, which encourages independent movement and helps eliminate sources of frustration-it's possible to offer them a quality life with connection to others and to the world.

Genres: Health, Nonfiction, Psychology, Reference

284 pages, Kindle Edition

First published January 20, 2009

Reviews

[Norma Nill · Rating 5 out of 5]

This book really helped me to reaffirm what I believe about respecting people, no matter how forgetful they are. Instead of testing them by saying, "Do you know who this is?" or "What year is this?", the author suggests we greet the person by giving our name, our relationship to them, and a smile and a hug, which will help them relax and feel cared for. Not only will our time together be more pleasant, but also, a person who feels safe and cared for--and this is key--is more likely to remember things better. Even if they don't seem to understand our words, they don't forget how to read a smile, kind gestures, and approval. I highly recommend this book. For more info, see
http://normanill.com/im-still-here-al...

[Carissa · Rating 4 out of 5]

Great book! It offers a beautiful, innovation perspective for caring for individuals with dementia. Families and caretakers would benefit from reading this.

[Jody Morris · Rating 4 out of 5]

I love this approach to Alzheimer's as a chronic condition rather than a death sentence and the focus on finding new relationship with the person with Alzheimer's based on their abilities instead of dismissing them as not being at all capable. People with Alzheimer's eventually need assistance with activities of daily living (ADLs) but they do not cease to be persons with emotions, capability for joy and connection. Given that there are about 7 million people in the U.S. living with Alzheimer's and the exorbitant cost of Memory Care facilities home-based caregiving partners of those with Alzheimer's could use a lot more support and community resources in providing the person with Alzheimer's a well designed environment that enables at least some independence, is a source of emotional security and a place to continue to enjoy life no matter how long.

[Heidi · Rating 4 out of 5]

I liked this book's approach. It talked about how to deal with the reality of Alzheimer's, not just some clinical definitions and such. It gave a lot of good advice on how to deal with your loved one no matter what stage they may be in. Most of all, it's a book that gives a lot of hope. It never makes you feel like you're fighting a losing battle taking care of someone with the disease. I really appreciated it's positivity.

[Erin Johnson · Rating 5 out of 5]

A must read for anyone who is caring for a loved one with Alzheimer's along with the 36 hour day. Very eye opening!

[Yoobin · Rating 4 out of 5]

"I'm Still Here" introduces an interesting take on the care of Alzheimer's Disease patients, expressing his concerns with the lack of emphasis on non-pharmacological treatments (ie. relationship development, environment optimization, etc.). While there have been various attempts to treat the disease pharmacologically (ex. Aducanumab), they've shown little to no significant effects in improving AD but at a very, very expensive cost. Rather than looking for a miracle drug, Dr. Zeisel urges readers to look at the glass half full rather than half empty. Society has this stereotypical view of AD patients being completely debilitated and unable to remember anything, when in reality, in earlier stages of the disease, they are very much cognizant of their identity.

Alzheimer's is divided into 6 categories called Braak stages (Braak stage 1, Braak stage 2, etc.); what most people picture when thinking of Alzheimer's Disease likely fall into Braak stages 5 & 6, but what happens when we lump all patients into this one category? We strip patients of their confidence and autonomy. When doctors choose to discuss next steps with the patient's caregiver/partner instead of the patient themselves, they demonstrate a complete disregard for the individual in front of them.

I don't exactly agree with everything in the book; for instance, there are times when expectations of partners of AD patients seem idealistic/contradictory. But there are also messages that speak volumes. These are just a few random thoughts I had while reading but would highly recommend for anybody with a personal connection to neurodegenerative diseases.

[John Hayward · Rating 4 out of 5]

I’d have been tempted to give John Zeisel’s “I’m Still Here” five stars if he hadn’t concluded with the mumbo-jumbo of Christless mindfulness, as the rest of the book was full of helpful insights and suggestions. The fundamental premise is one that many people evidently still need to hear: “Alzheimer’s is treatable, and the best treatment is one that carefully balances nonpharmacological with pharmacological approaches. Nonpharmacological treatment includes carefully planning and managing both the social and physical environment.”

[Evan Thacker · Rating 5 out of 5]

Learned about this book when I attended Gerontological Association of America (GSA) annual conference in late 2018. I attended a lecture by the author. This was the best book on Alzheimer's disease I have ever read. I learned so much and developed a new perspective. I hope that if/when I can for people with dementia I can treat them in the way this book teaches. And I hope that if/when I have dementia, the people caring for me will follow what this book teaches.

[Elise Barker · Rating 4 out of 5]

A lot of this resonates with my values, especially the use of mindfulness and the arts as practices for living with Alzheimer's. I thought it's anti-medication perspective was a little frustrating, but I guess I understand why he cautioned against relying on medication to fix problems that might be addressed in other ways.

[Santiago Gonzales · Rating 4 out of 5]

Very helpful and positive book about understanding loved ones with Alzheimer's. What they can't do, what they still understand well and even some things which they are better than non-impaired adults at.

[Kris · Rating 4 out of 5]

4.5

DESIGN FOR LIVING

“Everyone has pre-existing, instinctual abilities that building a caring relationship can capitalize on, such as our ability to understand music, facial expressions, and human touch – the meaning of a song, a smile, and a huge. Drawing on these innate abilities enables everyone living with Alzheimer’s to function better than expected, because they are never lost.

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.

… assumes that memories are gone, which they are not, they are just increasingly inaccessible without some help.

Design for people living with Alzheimer’s reduces the secondary symptoms of the illness – those that are not directly caused by changes to the brain, including apathy, anxiety, agitation, and aggression that to a large degree are not caused by the disease. Rather, they are caused by a person living in a place that is frustrating and difficult to negotiate.

Taking care of oneself [caregiver] is the surest way to help the person you love."


POWER OF ART

"Art experiences enable them to focus for longer periods, to perceive and express their perceptions, and to access both long- and short-term memories. Art of all sorts also enables people living with Alzheimer’s and those without it to focus together on something outside themselves, rather than on each other. Such shared experiences bring everyone closer together and serve as a basis for building new and strong relationships

… people living with Alzheimer’s are often freer, more honest, and more expressive than most others."


LIVING IN THE MOMENT

"People living with Alzheimer’s live in the present moment. Mindfulness of being in the present moment ourselves is a first step toward being in the mind of a person living with Alzheimer’s.

People living with Alzheimer’s tend more and more to experience a point rather than the line of time. Someone might talk about a long-dead relative as if he were just about to arrive for a visit. Or a daughter of sixty is seen as a sister of thirty. It is as if past experience and the future have drawn together with the present as one; much like how our unconscious minds combine several dimensions of time and place when we dream. The present moment represents all moments.

[Family or friends] generally say they have stopped visiting because “what’s the use?” The “Use,” I tell them, is that they and their memories keep their friend attached to life. I suggest they assemble a book of photographs from trips they have taken together or from an anniversary party, go over to their friend’s house, introduce themselves by name, and look through the book, recalling feelings they may have had at the time and talking about the wonderful memories."


► Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste – Alzheimer's, communication, living environment
► Creative Engagement: A Handbook of Activities for People with Dementia by Rachael Wonderlin – dementia, activities, empathy
► The Art of Making Memories: How to Create and Remember Happy Moments by Meik Wiking – memory, happiness, Alzheimer's
► With the End in Mind: Dying, Death, and Wisdom in an Age of Denial by Kathryn Mannix – dying, medical professionals
► Death Is But a Dream: Finding Hope and Meaning at Life's End by Christopher Kerr – dying, dreams, palliative care

[Little · Rating 4 out of 5]

I recommended this to Virginia, the head of restorative, as a good resource for our staff in how to think about treating dementia patients therapeauticly. Care for dementia not about teaching, quizzing, or trying to "get them to remember." It's about tapping into the humanity we all share. And Zeisel talks about that approach beautifully.

This is not, however, a practical "what to do" book for full-time caregivers. It gives you new ways to think, which is wonderful for those struggling to understand and relate to loved ones with dementia. It gives you wonderful ideas for fine arts and creative arts programming, but those ideas are all labor and time intensive, making them impractical for those caring for relatives at home.

Should you read it? Yes. It's a quick read, so go for it. Apply those ideas that are practical for your situation, and don't stress if you can't take Mama to the Louvre for a tour.

[Sherry · Rating 4 out of 5]

I started this book before, but never had time to finish it. I finally re-started it, and finished it. The key learning for me, is that while Alzheimer's can damage many parts of the brain, the deeper parts of the brain remain intact. So we have to learn to relate to them on the level that they are still themselves. My mom, while she can't come up with words to have a conversation, and can't remember anything from 5 minutes ago, and has even lost the memories of the stories of her life, she still lives in the moment, is happy, recognizes me, enjoys our time together. Now that Assisted Living takes care of all her immediate needs, I can spend time with her figuring out what makes her happy, what makes her laugh, etc. She even makes jokes, even if she can't think of the words. I'm relating to her on her terms, and it's more fun than we've had in years. This book explains why, and gives more ideas for ways to reach her. I recommend it.

[Zoe · Rating 5 out of 5]

Who knew that such a small, simple book could totally change my perspective on Alzheimer's disease? I am now less afraid of encountering this disease in myself or those I care about. More than that, I am very interested to try working with Alzheimer's patients to see if that might be something I love or am naturally good at. The chapters that spoke to me the most dealt with the role of art and poetry in increasing quality of life and human connection for the person with Alzheimer's. I am hoping to Skype with the author in the next few weeks; his company does trainings in the Bay Area, and I am inspired to work with him in some capacity.

[Kim · Rating 5 out of 5]

While one of the reasons I appreciate this book so much is its affirmation of what I've come to believe over the past five years, I sincerely wish I had read it five years ago! Presenting many practical tips and suggestions for improving quality of life and relationship for both the person with Alzheimer's and his/her partners (spouses, children, siblings, relatives, caregivers, etc.), Zeisel offers an asset-, person-, and brain-based framework for understanding Alzheimer's disease and its effects.

[Beatriz · Rating 5 out of 5]

I am delighted with this book its establish Art as an effective medium to relate and connect with this collective, the author also describes the immense creativity, sensibility and perception of the people with Alzheimer. As well it's really helpful and inspiring how the author observes and describe the misconceptions, misunderstandings and common mistakes of the therapists and caregivers in general, and around the A.D.
foundation www.imstillhere.org.

[Veronica Knudson · Rating 4 out of 5]

This would be a good book for anyone with a family member/friend with Alzheimer's to read. Might actually be good to read before the diagnosis. The author has been working with the Alzheimer population for many years and has some great suggestions about how to approach, engage and still reach the person who may not have the memory that they once had. I'm going to keep it on my shelf if anyone wants to borrow it.

[Kathy · Rating 2 out of 5]

A provocative look at Alzheimer's disease. The book has helpful information on how to communicate with and engage the person diagnosed with AD to keep them vital. Some of the book gets bogged down with technical information that is not so helpful.
I thought that some of the ideas were worth trying.

[Heather · Rating 3 out of 5]

This book has some approaches I have already found helpful, but the suggestions are really just that. You'll have to try and see what works for you/affected folks. Sometimes the writing veered toward the fuzzy, platitude-esque and therefore skimming ensued, but this book definitely gives you food for thought.

[Jeri]

there is a good chart on what kinds of memory remain and which ones go first....could be very helpful...not one that I would add to a personal alzheimer's library, but I would recommend reading it once. nothing earth-shattering, but some pages had good information

[Marianne Peksa · Rating 3 out of 5]

Most of the experiences in the book are in a group setting, although there is some very helpful advise for caregivers that are still in the home setting. The title truly says it all. I am amazed how people perceive Alzheimer's.

[Daniel Mok · Rating 5 out of 5]

A great read. He makes you see from the point of view of the patient and how the caregiver can help to make the QOL of the aging respectable and enjoyable for those around them.

[Diane · Rating 3 out of 5]

Some good information on Alzheimers.

[Janice · Rating 3 out of 5]

Understanding the person with Alzheimer's