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The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss
After 35 years, still the indispensable guide for countless families and professionals caring for someone with dementia. Through five editions, The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer disease. Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs. Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new information on • devices to make life simpler and safer for people who have dementia
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members The central idea underlying the book―that much can be done to improve the lives of people with dementia and of those caring for them―remains the same. The 36-Hour Day is the definitive dementia care guide.
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members The central idea underlying the book―that much can be done to improve the lives of people with dementia and of those caring for them―remains the same. The 36-Hour Day is the definitive dementia care guide.
416 pages, Hardcover
First published November 1, 1981
3473 people are currently reading
6491 people want to read
About the author
Nancy L. Mace
12 books17 followersNancy L. Mace, MA, now retired, was a consultant to and a member of the board of directors of the Alzheimer Association and an assistant in psychiatry as coordinator of the T. Rowe and Eleanor Price Teaching Service of the Department of Psychiatry and Behavioral Sciences at the Johns Hopkins University School of Medicine.
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Displaying 1 - 30 of 609 reviews
July 21, 2021
Developed to help caregivers and family members who are coping with a loved one with mental impairment due to disease, I wished, while reading, that someone had referred me to this book years ago. Most of what it contains I have learned already through trial and error or independent research, but it is a fairly comprehensive, but easy to read, book on the subject.
As someone who is dealing daily with the problems this book addresses, I felt I needed to review the book and encourage anyone who is seeing those early symptoms, the mood changes, the short-term memory loss, the confusion, the complaints of eyesight problems when the ophthalmologist says nothing is wrong with the eyes, or a sudden lack of interest in doing things, to please pay attention and get an early diagnosis and help.
One thing people should realize, but often don’t, is that there are many diseases that fall under the umbrella of dementia. Alzhiemer’s is only one of them. This book does go into the different types and points you in the direction that you need to go for the specific type of dementia you are dealing with. My husband has dementia associated with Parkinson’s, but also that brought on by stroke, so I am dealing with a two-fold disease. And, very important--your loved one may have delirium, which is treatable and often reversible, so you need a true diagnosis and the sooner the better.
Don’t stop pushing for a diagnosis, particularly if you are dealing with an elderly individual. I went through a number of health professionals who patted my husband on the head and said “not fun getting old, is it?” before I found one who would listen to me that there was much more going on here than aging. Once I got the diagnosis, I got some help, and that has made a great deal of difference for him, and for me. You cannot stop dementia or Parkinsons, they are degenerative diseases, but you can help with symptoms, know what to do in the face of what seems unfaceable, and you can feel a little more in control when you know what to expect and what new symptoms mean.
I read a fair amount of medical information and I do not tend to review those kinds of books here, but I truly felt that if only one person who suspects there might be a problem read this book early on, I might be actually helping. My husband first began to display symptoms in 2014; I got a diagnosis in 2019. Those five years of not knowing and no help were the hardest to bear. I made radical changes in our lives to get that diagnosis, and the last two years have been easier, despite the fact that his disease has become more pronounced and harder to manage.
Forgive me if this review is just too personal. I could find no way to write it without bringing my own situation fully into the picture. My prayers are with everyone out there who is dealing with these horrendous diseases that steal our loved ones in bits and pieces. BTW, if you are not directly involved in taking care of someone with dementia, but you know someone who is, you might want to read this book and know what they are dealing with. They need your understanding; they need your prayers.
As someone who is dealing daily with the problems this book addresses, I felt I needed to review the book and encourage anyone who is seeing those early symptoms, the mood changes, the short-term memory loss, the confusion, the complaints of eyesight problems when the ophthalmologist says nothing is wrong with the eyes, or a sudden lack of interest in doing things, to please pay attention and get an early diagnosis and help.
One thing people should realize, but often don’t, is that there are many diseases that fall under the umbrella of dementia. Alzhiemer’s is only one of them. This book does go into the different types and points you in the direction that you need to go for the specific type of dementia you are dealing with. My husband has dementia associated with Parkinson’s, but also that brought on by stroke, so I am dealing with a two-fold disease. And, very important--your loved one may have delirium, which is treatable and often reversible, so you need a true diagnosis and the sooner the better.
Don’t stop pushing for a diagnosis, particularly if you are dealing with an elderly individual. I went through a number of health professionals who patted my husband on the head and said “not fun getting old, is it?” before I found one who would listen to me that there was much more going on here than aging. Once I got the diagnosis, I got some help, and that has made a great deal of difference for him, and for me. You cannot stop dementia or Parkinsons, they are degenerative diseases, but you can help with symptoms, know what to do in the face of what seems unfaceable, and you can feel a little more in control when you know what to expect and what new symptoms mean.
I read a fair amount of medical information and I do not tend to review those kinds of books here, but I truly felt that if only one person who suspects there might be a problem read this book early on, I might be actually helping. My husband first began to display symptoms in 2014; I got a diagnosis in 2019. Those five years of not knowing and no help were the hardest to bear. I made radical changes in our lives to get that diagnosis, and the last two years have been easier, despite the fact that his disease has become more pronounced and harder to manage.
Forgive me if this review is just too personal. I could find no way to write it without bringing my own situation fully into the picture. My prayers are with everyone out there who is dealing with these horrendous diseases that steal our loved ones in bits and pieces. BTW, if you are not directly involved in taking care of someone with dementia, but you know someone who is, you might want to read this book and know what they are dealing with. They need your understanding; they need your prayers.
April 26, 2022
This is a remarkable resource. Seriously, I'm too exhausted from my 36-hour days of sole caregiving of my mother to go into all the things this book has taught me and all the ways it's helping me and anyway, it's comprehensive. Seems like The 36-Hour Day covers every conceivable situation, sometimes skimming the surface and sometimes taking a deeper dive, and always offers information, practical advice, resources, a supportive space between the pages. If it's not in the book, information on how and where to get that information is.
It's been updated many times since Johns Hopkins first released it decades ago, and the e-book has updated twice as I've been reading it. There are recommendations of all sorts and specific info on which organizations can help with what. There are checklists of questions to ask of agencies that employ home health aides. Same for management and staff at facilities and day care programs, as well as things to look for there, look at on the sly and ask about. Ways to handle it all, broken down into bits because it can be so overwhelming. It's written with compassion and throughout an understanding of how difficult it is for the caregiver and the cared-for.
Each avenue I've pursued thanks to the book has led to others. My mother's symptoms change and so do situations, so I've reread sections of the book and gotten more from them at the right time for them. Parts that didn't register much on first reading are invaluable later. It's organized with that in mind, conveniently, with chapters that include subtopics and a thorough index.
There's guidance on ways to deal with specific behaviors and behavioral changes. There's support around how difficult it can be whether you're alone or with siblings or a partner. The book goes into how caring for one parent can create tension in a marriage or relationship and when there is disagreement among siblings among how things ought to be done.
Transitioning from home care to a facility is dealt with at length and in practical and supportive terms. There are suggestions for how to make it better for the patient, checklists of things to ask when choosing a facility -- including under what circumstances and by what method they restrain patients.
Many of these things are difficult to contemplate but far better to know as much information about everything as possible in the calm before a storm. There are legal matters and medico-legal matters to decide. So much.
The trajectory for every patient is different, the lifestyle before and after diagnosis as well and of course the situation of the caregiver(s) throughout the course of the illness. I can only say for me that it was a surprising and still sometimes is a frightening thing we're living with, a new abnormal, and there's nothing I can't find or find out about, which is a huge comfort. And there's support, so I don't need to lean on my friends continuously; many of them have done this already or are now, some of whom will, sadly, sometime do it for the love of their life.
Know what else is a comfort? There are so many people in the world who are so much worse off. When she's responding "shut up" to everything I say to or ask her, or when she's impetuously going out the door and I have to stop what I'm doing and go flying after her, that's not helpful. But times like now when she's settled down, and in the middle of the night when it's quiet as I lie awake, it's important to me to remember that and be grateful.
It's been updated many times since Johns Hopkins first released it decades ago, and the e-book has updated twice as I've been reading it. There are recommendations of all sorts and specific info on which organizations can help with what. There are checklists of questions to ask of agencies that employ home health aides. Same for management and staff at facilities and day care programs, as well as things to look for there, look at on the sly and ask about. Ways to handle it all, broken down into bits because it can be so overwhelming. It's written with compassion and throughout an understanding of how difficult it is for the caregiver and the cared-for.
Each avenue I've pursued thanks to the book has led to others. My mother's symptoms change and so do situations, so I've reread sections of the book and gotten more from them at the right time for them. Parts that didn't register much on first reading are invaluable later. It's organized with that in mind, conveniently, with chapters that include subtopics and a thorough index.
There's guidance on ways to deal with specific behaviors and behavioral changes. There's support around how difficult it can be whether you're alone or with siblings or a partner. The book goes into how caring for one parent can create tension in a marriage or relationship and when there is disagreement among siblings among how things ought to be done.
Transitioning from home care to a facility is dealt with at length and in practical and supportive terms. There are suggestions for how to make it better for the patient, checklists of things to ask when choosing a facility -- including under what circumstances and by what method they restrain patients.
Many of these things are difficult to contemplate but far better to know as much information about everything as possible in the calm before a storm. There are legal matters and medico-legal matters to decide. So much.
The trajectory for every patient is different, the lifestyle before and after diagnosis as well and of course the situation of the caregiver(s) throughout the course of the illness. I can only say for me that it was a surprising and still sometimes is a frightening thing we're living with, a new abnormal, and there's nothing I can't find or find out about, which is a huge comfort. And there's support, so I don't need to lean on my friends continuously; many of them have done this already or are now, some of whom will, sadly, sometime do it for the love of their life.
Know what else is a comfort? There are so many people in the world who are so much worse off. When she's responding "shut up" to everything I say to or ask her, or when she's impetuously going out the door and I have to stop what I'm doing and go flying after her, that's not helpful. But times like now when she's settled down, and in the middle of the night when it's quiet as I lie awake, it's important to me to remember that and be grateful.
March 22, 2015
I spent 18 years of my professional life as a social worker specializing in the problems of the aging. Thirteen of those years were in nursing homes and rehab facilities. I could always identify the families of residents with Alzheimer's: they had big black circles under their eyes from lack of sleep. The 36 Hour Day was and is still the best thing written for the loved ones and caregivers of dementia patients. This book will help you deal with the terrible burdens of anger, love, guilt and confusion that dementia imposes on its victims and those who love them. In this one volume you will find out what to expect and many ways of dealing with it. Personality changes, weird, unpredictable behaviors, outbursts of emotion, loss of simple skills and uncontrollable anxiety can make even your beloved Mom into a terrible burden to her caregivers. How do you cope when your darling Daddy turns into a befuddled stranger? What do you do when the state troopers find Auntie Elma on Highway 19 in her nightie? Who do you turn to for advice? Where do you get the best medical care? Can you keep Mom at home or does she need an institution? This book really does have some good answers and some hints on other questions you may need to answer. This book can save you a lot of stress, trust me, I KNOW THIS!
January 12, 2011
I had heard that The 36-Hour Day is the Alzheimer's caregivers bible, and I can see why. Having read other books on the subject, I'd say The 36-Hour Day is a more complete reference guide, helpful in many different stages of caregiving. Chapter titles are Dementia, Getting Medical Help for the Person with Dementia, Characteristic Behavioral Symptoms of Dementia, Problems in Independent Living, Problems Arising in Daily Care, Medical Problems, Behavioral Symptoms of Dementia, Symptoms That Appear as Changes in Mood, Special Arrangements If You Become Ill, Getting Outside Help, You and the Person with Dementia as Part of a Family, How Caring for a Person with Dementia Affects You, Caring for Yourself, For Children and Teenagers, Financial and Legal Issues, Nursing Homes and Other Living Arrangements, Brain Disorders and the Causes of Dementia, Research in Dementia. My copy is 306 pages.
Because of my family's situation, the chapters that helped me most at this time were on daily care and medical issues. When these chapters described some issues my dad has, I was able to recognize the symptoms as being connected to the dementia. When these chapters gave suggestions for dealing with arguments and providing recreation, I was enlightened and given hope for more ways to make my dad's last days more enjoyable. The chapters on caregivers' emotions are supportive. I have trouble feeling guilty that I'm not doing more, so reminders that caregivers need respite cannot come too often.
I recommend buying this book and keeping it handy. Read it, but make a point to page through it at least once a month to see what info might refresh you in that moment.
Because of my family's situation, the chapters that helped me most at this time were on daily care and medical issues. When these chapters described some issues my dad has, I was able to recognize the symptoms as being connected to the dementia. When these chapters gave suggestions for dealing with arguments and providing recreation, I was enlightened and given hope for more ways to make my dad's last days more enjoyable. The chapters on caregivers' emotions are supportive. I have trouble feeling guilty that I'm not doing more, so reminders that caregivers need respite cannot come too often.
I recommend buying this book and keeping it handy. Read it, but make a point to page through it at least once a month to see what info might refresh you in that moment.
April 20, 2024
This is the seventh edition of The 36 Hour Day and it is filled with valuable information for those who find themselves in a caretaker role for someone with dementia. Unfortunately I am in this position now as my dad has Alzheimer’s. The book covers the different types of dementia, getting the right diagnosis, common behaviors of the dementia patient, finding help whether it be in your home or in a memory care facility. There are also chapters on how to care for the caretaker, insurance issues, financial and legal information in caring for a dementia patient and new research and advances. I found the information was presented in a clear and practical manner and there are personal stories of others who have found themselves navigating this path. You may find you pick it up and read it from start to finish or you may find you only want to read certain chapters that speak to your current circumstances. It is a resource that you can draw on again and again. Read it early in the journey if you can as I believe there is a lot of helpful information and the more you know the better you will be able to plan for the care that will need to be provided.
February 13, 2015
I picked up this book because it was recommended by the doctor who is helping keep up with the progress of my husband's grandfather's disease. He recommended that all family members read it, but much of the family was avoiding it, claiming it was horrible and too depressing. So I offered to read it and pass on the information that I found useful.
It was an extremely interesting book, though very, very repetitive in its mantra - there is no way that any human being will be able to take care of a loved one who has this disease alone - not without lots of help and support from friends and family, breaks/respite care so the caregiver can have some alone time... or else a complete loss of sanity and possibly harm to themselves and their ill loved one. So many stories in this book focused on people who tried to take care of their loved ones at home but ended up going crazy and having to put them in a home, and feeling horrible about it.
The moral of the story is, if you can't do it alone, don't try. It's not such a bad thing to put them into a home (as long as you've done your research in choosing homes and make sure to visit often!) and often improves their quality of life and everyone's health. If you really do want to care for your loved one at home, it will take a lot of patience (you know, if they want to keep the silverware in their sock drawer... it's not hurting anyone, you might as well let them to avoid a tantrum), a lot of help from friends and family to be sure you get the time you need away from the situation, a lot of rearranging of the home and making the house safe for someone with memory loss and probably loss of coordination as well. Even if they don't remember the happy times shortly after they happen (claim you never visit them at the home, claim you never let them do anything anymore, don't remember that the grand kids just visited or that you just played a game with them...) it is actually shown that although they don't remember why, the happy feelings tend to stay and it improves their behavior and attitude for the rest of the day.
It's a horrible disease, and I cried at some of the stories in the book from real people who have gone through this with a family member. I was horrified by the possible changes that are to come for my grandfather-in-law. It's a sad, sad thing. But this book is useful - points out places you can go for help, things to watch out for, things to make sure the doctor looks into and doesn't just write off as "getting older" or doesn't take care of because they have Alzheimer's disease and won't realize what is going on anyway, ways to improve their quality of life, and a whole chapter on the current research that is happening to help find a cure. I highly recommend it (probably in small doses) for anyone who has a family member suffering from Alzheimer's disease.
It was an extremely interesting book, though very, very repetitive in its mantra - there is no way that any human being will be able to take care of a loved one who has this disease alone - not without lots of help and support from friends and family, breaks/respite care so the caregiver can have some alone time... or else a complete loss of sanity and possibly harm to themselves and their ill loved one. So many stories in this book focused on people who tried to take care of their loved ones at home but ended up going crazy and having to put them in a home, and feeling horrible about it.
The moral of the story is, if you can't do it alone, don't try. It's not such a bad thing to put them into a home (as long as you've done your research in choosing homes and make sure to visit often!) and often improves their quality of life and everyone's health. If you really do want to care for your loved one at home, it will take a lot of patience (you know, if they want to keep the silverware in their sock drawer... it's not hurting anyone, you might as well let them to avoid a tantrum), a lot of help from friends and family to be sure you get the time you need away from the situation, a lot of rearranging of the home and making the house safe for someone with memory loss and probably loss of coordination as well. Even if they don't remember the happy times shortly after they happen (claim you never visit them at the home, claim you never let them do anything anymore, don't remember that the grand kids just visited or that you just played a game with them...) it is actually shown that although they don't remember why, the happy feelings tend to stay and it improves their behavior and attitude for the rest of the day.
It's a horrible disease, and I cried at some of the stories in the book from real people who have gone through this with a family member. I was horrified by the possible changes that are to come for my grandfather-in-law. It's a sad, sad thing. But this book is useful - points out places you can go for help, things to watch out for, things to make sure the doctor looks into and doesn't just write off as "getting older" or doesn't take care of because they have Alzheimer's disease and won't realize what is going on anyway, ways to improve their quality of life, and a whole chapter on the current research that is happening to help find a cure. I highly recommend it (probably in small doses) for anyone who has a family member suffering from Alzheimer's disease.
January 13, 2016
A useful and well put together guide about the complex world of Alzheimer dementia and how to care for people who are suffering from it.
March 20, 2018
Damn depressing but darn useful
June 26, 2010
This is a fabulous and exhaustive guide for families caring for people with Alzheimer's, dementia, and memory loss. It's been around and continually updated for the last 25 years and is couched in compassionate and clear language.
The book goes through all the stages of these tragic, often irreversible conditions, and how to deal with them in various ways, how to discuss and approach them, what (few) medications and (more) therapies are out there, the history and research behind the conditions and treatments, what support systems exist and how/when to use them, what to think about in terms of cost, nursing care, insurance, personal care, household adjustments, and so on. There's even a chapter for kids to read.
I found it a little weirdly structured - for e.g., the definitions and causes of various dementias are in the back of the book, rather than in the beginning. But maybe they wanted to get to the helping parts quickly as many families know the medical and research stuff already. All in all, great book and I highly recommend it for anyone interested in or affected by these disorders.
The book goes through all the stages of these tragic, often irreversible conditions, and how to deal with them in various ways, how to discuss and approach them, what (few) medications and (more) therapies are out there, the history and research behind the conditions and treatments, what support systems exist and how/when to use them, what to think about in terms of cost, nursing care, insurance, personal care, household adjustments, and so on. There's even a chapter for kids to read.
I found it a little weirdly structured - for e.g., the definitions and causes of various dementias are in the back of the book, rather than in the beginning. But maybe they wanted to get to the helping parts quickly as many families know the medical and research stuff already. All in all, great book and I highly recommend it for anyone interested in or affected by these disorders.
January 11, 2018
Though I make no claim to having surveyed books on caring for those with dementia, etc., The 36-Hour Day strikes me as one of the most complete guidebooks one could want. From definitions, information on stages, how one relates to those stages, references to support groups, a guide to evaluating care facilities, particular problems that might arise, caregiver stress signs, financial concerns, research on dementia. It's all there. Every person in the position of providing care for someone with Alzheimer's or another form of dementia should have a copy handy.
March 27, 2019
A little hard to read some parts, not because of the information or style of writing, but because I'm living the things described. However, this is the best all-in-one resource I've found that answers as many questions as anything can about an unpredictable disease that follows no rules. Definitely worth the read regardless of the stage your loved one happens to be in, and I also highly recommend it for other family members and friends who are not direct caregivers so they can at least begin to understand what the primary caregiver goes through.
December 14, 2017
“Thorough and compassionate, offering accessible information and practical advice, The 36-Hour Day is a necessary resource for families living with dementia. Still the gold standard, this book is the trusted reference that families turn to first—and over and over—for guidance and support in caring for someone with Alzheimer’s disease.” –Lisa Genova
July 16, 2025
I bought the book because it is THAT helpful!
August 31, 2017
The 36-hour Day describes itself as “A Family Guide to Caring for People Who Have Alzheimer Disease, other Dementias, and Memory Loss” and opened with Mary who thought she was losing her mind due to memory loss and instead of helping her, her doctor gave her some pills and told her, her memory loss was due to aging.
Just a few things from the book
1. Dementia does not mean the person is crazy
2. Dementia describes a group of symptoms that can be caused by many diseases
3. Severe memory loss is never a normal part of growing older
4. Some people experiences changes in personality
5. Some retain the qualities they always had
6. Some change dramatically
7. Types of care facilities
8. When to discuss legal finances and power of attorney
9. How to recognize differences between absentmindedness and dementia
10. Importance of following a Mediterranean diet
The 36-hour Day is a great reference book to refer to over-and-over again.
Just a few things from the book
1. Dementia does not mean the person is crazy
2. Dementia describes a group of symptoms that can be caused by many diseases
3. Severe memory loss is never a normal part of growing older
4. Some people experiences changes in personality
5. Some retain the qualities they always had
6. Some change dramatically
7. Types of care facilities
8. When to discuss legal finances and power of attorney
9. How to recognize differences between absentmindedness and dementia
10. Importance of following a Mediterranean diet
The 36-hour Day is a great reference book to refer to over-and-over again.
Read
February 19, 2020While this book is very thorough and full of things I have experienced, I ended up skimming the majority of this book. I was too late to this advice. If you are at the stage were Mom or Dad's growing quirkiness, forgetfulness, behavior changes are starting becoming a bigger problem, this would be a good book to get at that stage. If you are 2 years into full-blown Dementia then you've already fought your way through most of these topics.
May 6, 2013
wow is all i can say.. i love this book will be buying it for references ..
One of the keys to the success of this book is their acceptance that caregivers are going to have emotions, unrealistic ideas about the prognosis, misinformation about the nature of dementia and will underestimate the diseases effects on them and their family. It's okay to feel guilty, it's okay to feel conflicted, it's okay that you eventually may be unable to care for this person you love, whose personality is changing slowly before your eyes.
But once the authors are past the emotions, they also have a huge database of information built on the experiences of others. Time after time, you read in this book "this may happen, but it doesn't happen to everyone." That wide panorama of experience will help caregivers deal with virtually every circumstance that might come up.
You need to read this book, not to become a cocktail party expert, but so you will understand not only what's happening to your loved one, but also to yourself. When do you need to intervene? (Taking away the car keys, for example, is a huge step, both practical and symbolic.) What can you do to deal with erratic behavior? How do you help them deal with their finances?
It is never easy to deal with dementia. It will change your outlook on life, as well as how you feel about your parent or spouse who has dementia. I strongly recommend this book, not only for caregivers but also for those who are only starting to think "Boy, Mom sure has some weird ideas lately."
One of the keys to the success of this book is their acceptance that caregivers are going to have emotions, unrealistic ideas about the prognosis, misinformation about the nature of dementia and will underestimate the diseases effects on them and their family. It's okay to feel guilty, it's okay to feel conflicted, it's okay that you eventually may be unable to care for this person you love, whose personality is changing slowly before your eyes.
But once the authors are past the emotions, they also have a huge database of information built on the experiences of others. Time after time, you read in this book "this may happen, but it doesn't happen to everyone." That wide panorama of experience will help caregivers deal with virtually every circumstance that might come up.
You need to read this book, not to become a cocktail party expert, but so you will understand not only what's happening to your loved one, but also to yourself. When do you need to intervene? (Taking away the car keys, for example, is a huge step, both practical and symbolic.) What can you do to deal with erratic behavior? How do you help them deal with their finances?
It is never easy to deal with dementia. It will change your outlook on life, as well as how you feel about your parent or spouse who has dementia. I strongly recommend this book, not only for caregivers but also for those who are only starting to think "Boy, Mom sure has some weird ideas lately."
October 26, 2013
“Mom is 87 and we've gone through a lot in the last year or so. She is diagnosed with AD and is at the point where she can't live by herself anymore. We attended an all day seminar on Dementia and Alzheimer Disease and they recommended this book. It is excellent and very thorough. It explains the different forms of dementia and all the various different problems that come with it. It covers research and suspected causes along with other medical problems. For me, the best part was when it dealt with help for the caregivers of AD patients regarding independence, daily care, behavior difficulties, moods, getting outside help, family conflicts and changes in roles, caring for yourself and all the different emotions that come with it, financial and legal issues, etc. I started a blog on "Aging Parents" www.wat2dowitmom.blogspot.com and I highly recommend this book if you have a loved one that has been "slipping" mentally. ”
May 30, 2012
I can't imagine a more comprehensive and compassionate book on caring for a loved one with dementia. Even if you are not a primary caregiver, this will be of interest if you know someone who is or have someone with dementia in your life. The author describes the person is trying his/her best, often making an incredible effort to get through each day and the reasons people with dementia do many of the things they do. I am dealing with this right now and it was an eye-opener that made me more forgiving and contains a wealth of information on how best to help a loved one.
August 14, 2025
I wish I found this book 3 years ago when my mom was first diagnosed. And yet, the book helped me understand what may have caused my moms dementia to accelerate, that not all the meds are even working, that I may not inherit this dreadful disease. But most importantly, love my mom and be with her during this time.
August 2, 2025
Aunque le falta algún detalle, muestra la cruda realidad que nos espera, tanto a pacientes como a cuidadores.
August 8, 2015
I hadn’t had any practical knowledge of Alzheimer’s Disease beyond dealing with end-of-life dementia in my grandparents so I thought my common sense would steer me through this new journey our family is undertaking. It took a comment from a relative, who’s been dealing with neurological problems, for me to realize how inadequate my education was: when discussing getting lost while driving, I inquired why she didn’t just use her iPad? Exasperated, she replied, “Because it’s not that I couldn’t figure out the directions, it’s that I couldn’t remember how to use an iPad.” That was the beginning of my awareness of how grossly inadequate my knowledge was. Alzheimer’s is a physical disease that eats away the brain: it’s not a mental illness that can be contained or managed.
I had been told this was the definitive book on care and I can’t argue that: it’s thorough and logical and practical and supportive (I read the fifth edition). Some of the explanations gave me tremendous insight into the mind of an Alzheimer’s patient. Other segments provided “Aha!” moments about behavior I’d already seen. It was also good that it reiterated how it’s self-defeating to try repeatedly to teach an Alzheimer’s patient something when it’s beyond their physical ability, so stop with the “Don’t you remember?” questions or the “I just told you” answers that just frustrate and hurt them. Then, of course, there are the many, many things that sucked the breath right out me and brought me to tears.
It took me almost eight weeks to read the book and, until the very end, I read it straight through. I don’t necessarily recommend that – picking segments from the contents may be best for a lot of people. There were times that I just needed to put it down for a while, and I started reading it at times other than before bed as it just wasn’t healthy for me to have these things in my brain as I tried to fall asleep. This was a library copy and I’ll probably be acquiring a personal copy to refer to in future. I strongly recommend it.
I’ve had people in my life die unexpectedly and suddenly, and others after long, protracted illnesses. I don’t mean to dismiss the agony and grief that occurs with those, but this is by far the most horrendous, horrifying, disturbing and cruel illness I’ve ever encountered, for both the patients and those who love them. I hope this book is no longer needed in the near future.
I had been told this was the definitive book on care and I can’t argue that: it’s thorough and logical and practical and supportive (I read the fifth edition). Some of the explanations gave me tremendous insight into the mind of an Alzheimer’s patient. Other segments provided “Aha!” moments about behavior I’d already seen. It was also good that it reiterated how it’s self-defeating to try repeatedly to teach an Alzheimer’s patient something when it’s beyond their physical ability, so stop with the “Don’t you remember?” questions or the “I just told you” answers that just frustrate and hurt them. Then, of course, there are the many, many things that sucked the breath right out me and brought me to tears.
It took me almost eight weeks to read the book and, until the very end, I read it straight through. I don’t necessarily recommend that – picking segments from the contents may be best for a lot of people. There were times that I just needed to put it down for a while, and I started reading it at times other than before bed as it just wasn’t healthy for me to have these things in my brain as I tried to fall asleep. This was a library copy and I’ll probably be acquiring a personal copy to refer to in future. I strongly recommend it.
I’ve had people in my life die unexpectedly and suddenly, and others after long, protracted illnesses. I don’t mean to dismiss the agony and grief that occurs with those, but this is by far the most horrendous, horrifying, disturbing and cruel illness I’ve ever encountered, for both the patients and those who love them. I hope this book is no longer needed in the near future.
December 29, 2014
Where to begin? I read the 1990 version (16th printing) of this originally-printed in 1981 book to glean information in dealing with a loved one who suffers from dementia, so I knew going in that much of the information could potentially be outdated. Given how old it is, it's remarkably current in many/most ways that matter. (If the organization website URL'S and phone numbers are outdated, they're easy enough to find on the web.)
Overall, it was a most helpful read and am so grateful to have had a copy land in my hands (sadly, it belongs to the family member who is now suffering through it). The Truth is spelled out in great detail, in turns reassuring and utterly depressing, with plenty of opportunity to identify with the various examples Mace & Rabins give to illustrate their points. I was amazed at how many times I found myself thinking, "That's happened," or "That's EXACTLY how I feel," and I found that comforting.
I have a better understanding now that what I'm seeing in our patient is less "the way she's always been," and more "this is the brain damage at work," and liked that they tended to refer to dementia patients as the "confused person," throughout the book. That helped a lot to drive home the "baffled" feeling that comes along with the memory loss we tend to focus on. It's not just that they can't remember - it also makes no sense much of the time - which must be very frightening, indeed.
There are strategies, techniques and candid explanations that can help improve the quality of life for the patient and their caregiver(s) and, while this particular edition is quite old, they include a lengthy list of recommended reading for both laypersons and professionals. (I wish more doctors would read this!!)
If you're caring for a dementia patient or want to better understand the various dementias for other reasons, this is a good starting point.
Overall, it was a most helpful read and am so grateful to have had a copy land in my hands (sadly, it belongs to the family member who is now suffering through it). The Truth is spelled out in great detail, in turns reassuring and utterly depressing, with plenty of opportunity to identify with the various examples Mace & Rabins give to illustrate their points. I was amazed at how many times I found myself thinking, "That's happened," or "That's EXACTLY how I feel," and I found that comforting.
I have a better understanding now that what I'm seeing in our patient is less "the way she's always been," and more "this is the brain damage at work," and liked that they tended to refer to dementia patients as the "confused person," throughout the book. That helped a lot to drive home the "baffled" feeling that comes along with the memory loss we tend to focus on. It's not just that they can't remember - it also makes no sense much of the time - which must be very frightening, indeed.
There are strategies, techniques and candid explanations that can help improve the quality of life for the patient and their caregiver(s) and, while this particular edition is quite old, they include a lengthy list of recommended reading for both laypersons and professionals. (I wish more doctors would read this!!)
If you're caring for a dementia patient or want to better understand the various dementias for other reasons, this is a good starting point.
May 8, 2022
Realizing I couldn’t continue much longer with my current situation, I decided there had to be a better way. I actually saw this book recommended on a FB group for dementia/Alzheimer’s caregivers. i checked it out from the library not really expecting a whole lot. Never have I been so happy to be so wrong. From its first pages, I knew this is exactly what I needed. It is so comprehensive, but not overly clinical or scientific. It was very easy to understand. and did I say comprehensive? Just wow! Literally every issue I have been dealing with, and many I have not yet encountered, are discussed thoroughly and compassionately. I would highly recommend this book for anyone that may even suspect their loved one has Alzheimer’s or dementia. Since I had to return this one to the library, I have ordered both a hard copy and audio version for my own library. I have a feeling I will be referring to this one a lot in the coming days.
September 7, 2013
Update: Taking this book off my "currently reading" shelf since my dad's struggle has ended. I hope to not ever have to return to it, but I will keep it around in case I am confronted with the need again. It is a wonderful and incredibly useful book. Please support the Alzheimer's Association in finding prevention and a cure for this terrible disease.
Original review: This is probably going to be on my "currently reading" list for as long as my dad has Alzheimer's. It's not a book you want to sit and read all at once, but it contains a great deal of useful information for people who care for and love someone with Alzheimer's, and it describes the stages and behaviors that may be encountered during the course of the disease. The book is compassionately written both toward the patient and the caregiver.
Original review: This is probably going to be on my "currently reading" list for as long as my dad has Alzheimer's. It's not a book you want to sit and read all at once, but it contains a great deal of useful information for people who care for and love someone with Alzheimer's, and it describes the stages and behaviors that may be encountered during the course of the disease. The book is compassionately written both toward the patient and the caregiver.
November 7, 2021
Maybe 2.5 stars rounded down.
This book wasn’t terrible, it just had a ton of information not really applicable to our situation. I would really have liked a useful section on helping a dementia patient through grief. Yet didn’t need the sections on home care, caregiver self care, or finding resources. I felt like the examples could be slightly patronizing. It gave me the feeling that the whole book was intended for someone with zero experiences with dementia or perhaps understanding human nature at all. Judging from the glowing reviews, it does seem like most people who loved this book were just starting on their cognitive impairment journey. That’s great that it was a valuable resource for them, but it’s far too exhaustively basic for anyone already in the trenches. Maybe would have been good for my dad to read about what my mom was going through at the start of it all.
This book wasn’t terrible, it just had a ton of information not really applicable to our situation. I would really have liked a useful section on helping a dementia patient through grief. Yet didn’t need the sections on home care, caregiver self care, or finding resources. I felt like the examples could be slightly patronizing. It gave me the feeling that the whole book was intended for someone with zero experiences with dementia or perhaps understanding human nature at all. Judging from the glowing reviews, it does seem like most people who loved this book were just starting on their cognitive impairment journey. That’s great that it was a valuable resource for them, but it’s far too exhaustively basic for anyone already in the trenches. Maybe would have been good for my dad to read about what my mom was going through at the start of it all.
November 19, 2020
The most comprehensive guide on Alzheimer and Dementia
As someone with a family member that has just been diagnosed with a possible pre-dementia, this book is immensely helpful. I get to see the many different worst case scenarios that await us, as well as how to handle them all properly.
Because yes, unfortunately we cannot cure dementia (yet), but with the right attitude, the right knowledge, and with the many different hacks available to us, we can deal with it less painfully and live a perfectly functional life.
No wonder that this book has been the number 1 go-to book on Alzheimer and dementia for almost 4 decades. It gives back the much needed sense of control over an unwinnable battle. Thank you Nancy and Peter, I’m forever grateful.
As someone with a family member that has just been diagnosed with a possible pre-dementia, this book is immensely helpful. I get to see the many different worst case scenarios that await us, as well as how to handle them all properly.
Because yes, unfortunately we cannot cure dementia (yet), but with the right attitude, the right knowledge, and with the many different hacks available to us, we can deal with it less painfully and live a perfectly functional life.
No wonder that this book has been the number 1 go-to book on Alzheimer and dementia for almost 4 decades. It gives back the much needed sense of control over an unwinnable battle. Thank you Nancy and Peter, I’m forever grateful.
November 29, 2022
This is a dense book packed with just about everything a family could encounter when dealing with dementia. I've been caring for my Mom who has Alzheimer's for more than a decade, and I think this book told me more than I've heard in all our doctor visits combined. Absolutely phenomenal resource and highly recommended for those who are dealing with this illness in their family.
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September 9, 2022This doesn't have to be read page by page. You can read the areas that pertain to where your care receiver is at this point in his/her journey. My psychiatrist recommended it to me when my husband was first diagnosed
May 17, 2013
This book is more helpful than anything I've ever read or an advice I have ever received on Alzheimer's disease. It is the ultimate help for family and caregivers.
March 4, 2014
A classic! It's one of the best books in helping caregivers understand Alzheimer's disease and other types of dementia.
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