Summary: The Alzheimer's Action Plan is a comprehensive resource for patients and families. It's not likely that most people with memory loss will get the standard of care the authors would want for their own parents, but the guidelines in the book will help patients and families get as close to that standard as possible.
The scenario at the beginning of The Alzheimer's Action Plan will be familiar to many adult children whose elderly parents have memory problems: warning signs, denial of problems by both your parent and his doctor, increasing problems, seemingly sudden diagnosis of Alzheimer's, no advice or support. While this scenario doesn't exactly reflect my family's situation, I wish we had had this book when my father was alive.
I met the authors at ICAD last week. Dr. Murali Doraiswamy is Chief of Biological Psychiatry and past Director of Psychiatry Clinical Trials at Duke University Medical Center. Lisa Gwyther is Director of the Alzheimer's Family Support Program at Duke's Center for Aging and current President of the Gerontological Society of America. The combination of the viewpoint of a doctor involved in clinical trials and that of a social worker who has worked with thousands of families makes The Alzheimer's Action Plan a comprehensive resource.
Dr. Doraiswamy and Ms. Gwyther wrote the book to answer the question they often hear: "what would you do if your mother was starting to have memory problems?" To get a flavor for how the book is structured around real-world concerns, read the last chapter, "Our Top 40 Questions and Answers," first. You'll find thoughtful answers to other questions they hear, including:
- "How do I get my father to go to the doctor when he thinks nothing is wrong?"
- "Is it worth it to get a second opinion? The doctor said my dad's CAT scan was normal, but he just isn't himself anymore."
- "Is there anything I can do now to keep from getting Alzheimer's like my mom and her mom?"
This book has something for everyone - people with memory loss, their families, and anyone worried about cognitive problems. But at 400+ pages, it might be best-suited for the adult children audience the authors had in mind. Parts one and two of the book cover what you need to know when you're in the doctor's office: the latest diagnostic tests, what you can and can't expect from treatment, the pros and cons of participating in clinical trials and patients' rights. Parts three and four are about life outside the doctor's office: living well with early-stage Alzheimer's, dealing with changes in behavior and emotions, and finding peace of mind in later stages. Part five contains advice for a brain-healthy lifestyle.
The real achievement of the book is laying out guidelines or standards for diagnosis and care. If I had had this resource when my father was alive, I wouldn't have had to spend so much time researching diagnosis and treatments. I would have been more comfortable asking Dad's doctors questions.
"Knowledge is power," Dr. Doraiswamy says. "We wrote this book to give families the highest quality information which we hope will empower them to become their own best advocates for better brain and memory health."
But if I had had this book, would my father's diagnosis, treatment or care have been any different? I don't think so. Despite our best efforts, and those of numerous doctors inside and outside of a university-based memory clinic, we were not able to get the kind of diagnostic work, treatment or care described in The Alzheimer's Action Plan. I suspect that is true of many families.
In between sessions at ICAD, I asked Lisa Gwyther if the book raises expectations too high. "I hope not," she said. "What we're trying to do is talk about what's possible, what to aim for as an advocate for yourself or your family member." To be fair, Dr. Doraiswamy and Ms. Gwyther write frankly about the shortcomings of the medical system and the limits of treatments. But what can be done to move toward their vision of excellent care?
From Ms. Gwyther's point of view, the answer may lie in a chronic disease management team approach, where overall patient care is coordinated among a variety of healthcare professionals. "You can't expect to get all of your information from one physician," she said. "Sometimes we need translators or interpreters, and we can get more time and more in-depth answers from experienced geriatric nurse specialists, social workers or other members of the healthcare team. Geriatricians know a lot about dementia, and they are more likely to focus on enhancing function and comfort by treating excess disabilities or other chronic conditions. Sometimes the most important thing you can do is get a 'tune-up and oil change' - go to a geriatrician or your regular doctor and make sure the things you can fix, treat or manage are treated. Then look at what can be done to make your environment safer, and your daily routines and relationships more pleasant and meaningful."
It's not likely that most people with memory loss will get the care Dr. Doraiswamy and Ms. Gwyther would want for their parents, but the guidelines in The Alzheimer's Action Plan will help patients and families get as close to that standard as possible.