Published by: Munn Avenue Press
Release Date: September 11, 2026
Contributors: Kenneth Robbins MD MPH (Author), Charles Levin (Author), Alison Coulson BSN RN (Author), Carrie Pierce (Author)
Pages: 198
ISBN13: 978-1969679704
ASIN: B0HJGPG21G
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Overview

No one tells you what dementia caregiving is actually like.

“Easily the single most compassionate, compact, constructive, and complete guide to living with Alzheimer’s for everyone involved. Led by Dr. Robbins’ deep insights and experience, it’s a beautiful Master Class in what to know and do.”
—Paula Spencer Scott, author of Surviving Alzheimer’s

The repeated questions. Being mistaken for a stranger by someone who raised you. Deciding when it’s no longer safe for them to drive, or live alone, or be left for an afternoon. Grieving the loss of a person who is still here.

Dementia rarely shows up all at once. It's a forgotten conversation. A moment that doesn't add up. A flash of temper that isn't like him. One at a time, they don't mean much. Add them up, and they do.

Until You’re In It pairs renowned psychiatrist and internist Dr. Kenneth Robbins’ decades of experience and clinical knowledge of dementia with real stories from caregivers who lived it. Most books out there give you one or the other. This one gives you both: what’s happening medically, and what it actually feels like to go through it.

Inside, you’ll find:

• The types and stages of dementia, and what to expect with each one
• Early signs families often miss or explain away
• How to get through diagnosis, medical appointments, and the difficult conversations that come after
• Practical guidance for managing anxiety, hallucinations, sleep problems, safety concerns, and emotional outbursts
• How to think through memory care, legal planning, and end-of-life decisions
• Caregivers’ own accounts of what this really feels like, day-to-day

There's no right way to do this. There's just doing it.

“...Ultimately this is a book about kindness from experts who have been ‘in it.’ A must-read for caregivers, family members, and really anyone facing dementia.”
—Thomas R. Insel, MD, Former Director of the National Institute of Mental Health

If dementia has touched someone you love, this book will tell you what’s coming, what to do about it, and what other caregivers wish they’d known sooner.

Dr. Ken Robbins is board-certified in both psychiatry and internal medicine and has spent decades caring for geriatric patients, particularly those living with dementia. He has also led healthcare system initiatives to better integrate psychiatric and medical care, advancing a team-based approach that treats the whole person.

Foreword

If you are holding this book, there is a good chance that dementia has entered your life in a way you did not choose and could not have fully prepared for. I understand that more personally than I ever expected to.

I have known Dr. Kenneth Robbins since our college days, and for years, I encouraged him to write this book. I had seen the depth of his experience and the compassion he brings to his work, and I believed that what he knew could truly help people. What I did not anticipate was how much I would come to rely on that same wisdom myself.

My father-in-law, a man I worked with every day for more than twenty years and loved deeply, was diagnosed with Alzheimer’s and gone within a year. Watching someone so intelligent, so present, and so full of life fade so quickly was both heartbreaking and disorienting. I did not fully understand what I was seeing at the time. I only knew that something precious was slipping away.

Now, I find myself in the role of caregiver for someone very close to me who is living with mild cognitive impairment and significant memory loss. This time, I am experiencing it differently. Working on this book with Ken, Alison, and Carrie has given me a language for what is happening, a framework for how to respond, and, perhaps most importantly, a way to approach this role with more patience, more clarity, and more love.

Nothing about this is easy, but this book has helped me make sense of what I lost, and it is helping me, in real time, care for someone I love. That is my hope for you.

My hope is that within these pages and through the stories of caregivers who have walked this path and through the steady, compassionate guidance of Dr. Robbins, you will find not only answers, but also reassurance. That you will feel a little less alone. That you will feel more prepared for what lies ahead. And that even in the hardest moments, you will find ways to show up with the kind of presence and love that this journey, however difficult, still makes possible.
—Charles Levin

Introduction

A diagnosis of dementia is frightening for all concerned. To have an illness that gradually kills brain cells and dims one’s capacity to think and remember, as dementia does, is truly nightmarish. This book is for anyone whose life has been touched by dementia. This includes those of you living with or caring for someone with dementia, as well as those who want to learn more about these complex conditions.

I am writing this book because I believe the course of this dreaded disease can be significantly improved. I believe that the experiences of those with dementia and their caregivers can be dramatically less disruptive and traumatic by possessing knowledge, understanding, and realistic expectations of the stages of dementia.

I am board-certified in both internal medicine and psychiatry. This combination of training has lent itself well to diagnosing, treating, and caring for individuals with various forms and stages of dementia. I have been involved with treating people with dementia in a variety of settings, including inpatient hospitals, extended care facilities, home settings, and hospice care. My experience has taught me repeatedly that caring for people with dementia requires an integrated approach that includes all members of the caregiving team. 

To ensure optimal outcomes for those with dementia, caregivers must be supported and knowledgeable about how dementia affects an individual. Realistic expectations, paired with suggested responses, are almost always helpful. Often, it is all that is needed to decrease stress and tension and contribute to successfully coping with the challenges they are confronting. Discussing problems, exploring solutions, and remaining available as dementia progresses can transform the experience for the person with dementia and the caregiver alike, from one of fear and overwhelm to one of feeling supported and capable.

This book is intended to provide readers with insights into caring for a person with dementia. It is my hope that it will give you the tools needed to prepare for this journey and provide you with an opportunity to experience how the heroic role of caregiving can actually have many positive aspects. 

As a note to the reader: the From the Doctor’s Office sections are my clinical commentary and stories.
—Kenneth Robbins, MD, MPH