book review the 36 hour day

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The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss

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The 36-Hour Day: A Family Caregiver’s Bible (review)

For more than three decades The 36-Hour Day has been a definitive guide for caregivers of people with dementia . In the guide, authors Nancy L. Mace and Peter V. Rabins cover every aspect of caring for persons with cognitive impairment. They also have wise words about caregiver self-care, and their style is medically accurate and easily accessible. Thus, it is a book a caregiver may wish to keep close by for handy reference.

The authors acknowledge that dementia remains unpreventable and incurable, as it was in 1981, when the book was first published. Yet, they say, much has been learned about helping people care for dementia sufferers. The authors remind readers that “confused people and their families do still experience joy and happiness.” They note that keeping a sense of perspective and humor helps all around.

The authors say the word “dementia” describes a group of symptoms characterized by three things. These are: 1.) impaired daily functioning due to damaged intellectual abilities, 2.) adult onset, 3.) awake and alert patients.

They say half or more of dementia cases stem from Alzheimer’s disease. Much smaller percentages are caused by vascular disease, a combination of Alzheimer’s and vascular disease, Lewy body dementia, frontotemporal dementia, or other medical conditions.

First things first: a diagnosis of dementia

Diagnosis is important, because depression, which is fairly common in older people, can mimic dementia. It is important, the authors assert, not to ascribe memory loss and loss of function or confusion to “old age.” The authors emphasize that “severe memory loss is never a normal part of growing older.” In fact, very small percentages of older people have dementia. Diseases giving rise to dementia do become more prevalent in people who survive into their 80s and 90s. Yet even then, only 50% to 70% of those who live into very old age suffer significant memory loss or other symptoms of dementia. Dementia is not the norm for growing older.

“Severe memory loss is never a normal part of growing older.”

50 to 70% of those who live into very old age never experience significant memory loss or other symptoms of dementia.

The person with dementia

Mace and Rabins evoke much empathy for dementia sufferers. They remind readers that dementia is caused by biological factors–chemical and structural deterioration in the afflicted person’s brain. There is nothing deliberate or willful about the person’s behavior or lapses.

The authors remind caregivers that: “The person who has dementia probably feels lost, worried, anxious, vulnerable, and helpless much of the time. He may also be aware that he fails at tasks and feels that he is making a fool of himself . . .” The authors remind readers: “The person you are caring for is also often miserable and is doing the best he can.”

Such perspectives can help caregivers take difficult times less personally. It is important to know that it is the disease talking and acting–not the person with dementia and not because of any shortcomings of the caregiver.

Catastrophic reactions–the dementia caregiver’s dread

For a person with this disease, even simple tasks may seem overwhelming. Thus, the person’s stress levels may escalate into a “catastrophic reaction.” These reactions can get physical and it is best to prevent them, if possible. Knowing common causes of catastrophic reactions can help.

For example, telling the person to do something that involves many steps may overwhelm him or her. A suggestion such as “Dress yourself” or “Take a bath” may result in overload. The authors say, “The key is to simplify, to reduce the number of signals the impaired, disoriented brain must sort out.”

Other factors also may make dressing and bathing bases for catastrophic reactions. Bathing and dressing can be sensitive. As the authors say, “Having other people’s hands and eyes on one’s naked, aging, not-so-beautiful body is an acutely uncomfortable experience.”

The authors suggest that keeping a log of catastrophic reactions and looking for triggers to avoid may help reduce such incidents.

Other maddening behaviors–wandering and shadowing

Dementia sufferers engage in some unsettling behaviors. Some may pace, rummage through drawers, wander off, or shadow a caregiver. The authors counsel the caregiver to look for the reasons underneath such disturbing behavior. The wanderer probably feels lost and may be searching for who he or she used to be, or for familiarity. The person who shadows a caregiver constantly may be clinging to someone trustworthy in a seemingly confused and unreliable world. Calm equanimity is the best response on the caregiver’s part. It helps to understand that the behaviors are because the person is in the grip of a disease he or she can neither fight nor control.

Empathy for the dementia caregiver

The authors note that caregivers may be impacted in their marriages and their relationships with their young, teenage, or adult children. Their work lives may suffer. Their relationships with parents, siblings, and other family members will be altered. Dementia has family-wide impact.

What is more, caregivers sometimes need care themselves. Whether physically sick or not, they need periodic respite.

Caregivers may suffer from an array of uncomfortable emotions, including anger, powerlessness, resentment, shame, guilt, sorrow or anxiety. Yet there may also be moments of joy, fulfillment, and emotional reward. Navigating the emotional roller coaster can be difficult for the caregiver.

The authors advise caregivers to get out and about. It is important to have friends, avoid isolation, and get help. They can also join support groups to bond with others in similar situations. Also, it is vital for caregivers to pursue individual interests so that caregiving does not become all-consuming.

The 36-Hour Day is full of wisdom and useful information. The book is a readily understandable, accessible, and helpful guide for caregivers of dementia patients. It is no wonder it has been called the “Bible” of dementia caregiving for decades.

Mace, Nancy L., and Rabins, Peter. V. (September 2012). The 36-Hour Day. A Family Guide to Caring for People Who Have Alzheimer’s Disease, Related Dementias, and Memory Loss. New York: Grand Central Life & Style. Originally published by the Johns Hopkins University Press, 1981. Direct quotes: Pps. 18, 11-12, 39, 41, 53, 142.

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The 36-Hour Day

Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH

With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated! For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the...

With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated! For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is widely considered to be the most detailed and trusted book available.

Highlighting useful takeaway messages and informed by recent research into the causes of dementia, this new edition has been completely updated. It features

• brand-new content on everything from home care aides to useful apps to promising preventative techniques and therapies • practical advice for avoiding caregiver burnout—plus tips for when and how to get additional help • a completely new two-column design that allows readers to quickly access what they need

The central idea underlying this indispensable 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.

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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.

Both a guide and a legend.

Excellent guidance and clear information of a kind that the family needs... The authors offer the realistic advice that sometimes it is better to concede the patient's frailties than to try to do something about them, and that a compassionate sense of humor often helps.The New York Times

An admirably realistic guide to caring for people with Alzheimer's.

The best guide of its kind.Chicago Sun-Times

An excellent, practical manual for families and professionals involved in the care of persons with progressive illnesses. The book is specific and thought-provoking, and it will be helpful to anyone even remotely involved with an 'impaired' person. Highly recommended, especially for public and nursing libraries.

For a reader who wants a book about Alzheimer's and caregiving, this is still the one to buy. Recommended.

This is for carers and families, but equally should be on the reading list for nursing and medical students. Every ward should have a copy as nursing and clinicians can learn so much from this and ensure a high standard of care for these patients.

An excellent book for families who are caring for persons with dementia. A book that physicians can confidently recommend to the families of their patients.

Continues to be the 'bible' of recommendation for any caregiver whose family member suffers from dementia.

Recommended to all caregivers and families of persons with dementia as an indispensable source of valuable information on a very wide range of topics.

An excellent guide with general information for family caregivers of persons with dementia. The text is person focused and describes the complexity and depth of the care required not only for persons with Alzheimer's disease and other forms of dementia but also for caregivers.

An essential guidebook full of detailed, practical, and compassionate advice for those caring for a PWD. The 36-Hour Day continues to serve as the gold-standard care guide for millions of dementia caregivers.

We yearn for the day when there is no Alzheimer's, no Alzheimer patients, and no Alzheimer caregivers. Until then, there is The 36-Hour Day .

Having lived the chapter and verse of The 36-Hour Day for twenty years, I know how this book empowers families with constructive and compassionate advice. This new edition offers definitive testament to the slow destructive force of Alzheimer's disease and how it challenges families caring for loved ones with dementia. It is a must read by all those who serve our aging generation.

From its knowing title to its knows-everything contents, The 36-Hour Day 'gets' what you're going through. This encyclopedia of dementia care misses no aspect of life affected, from tough behaviors to challenged relationships to medication decisions—describing each with both the honesty and compassion we caregivers deeply need.

Book Details

Foreword Preface 1. Dementia 2. Getting Medical Help for the Person Who Has Dementia 3. Characteristic Behavioral Symptoms in People Who Have Dementia 4. Problems in Independent Living 5. Problems Arising

Foreword Preface 1. Dementia 2. Getting Medical Help for the Person Who Has Dementia 3. Characteristic Behavioral Symptoms in People Who Have Dementia 4. Problems in Independent Living 5. Problems Arising in Daily Care 6. Medical Problems 7. Managing the Behavioral and Neuropsychiatric Symptoms of Dementia 8. Symptoms Associated with Mood Change and Suspiciousness 9. Special Arrangement If You Become Ill 10. Getting Outside Help 11. You and the Person Who Has Dementia 12. How Caring for a Person Who Has Dementia Affects You 13. Caring for Yourself 14. Financial and Legal Issues 15. Long-Term Care Arrangements 16. Preventing and Delaying Cognitive Decline 17. Brain Disorders and the Causes of Dementia 18. Research in Dementia Index

Nancy L. Mace, MA

Peter v. rabins, md, mph.

with Hopkins Press Books

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5 years ago · Leah Fogt · 0 comments

Book review: the 36 hour day.

You know how they say children don’t come with an instruction manual?  The same this is true for diagnosis of Alzheimers or Dementia.  However, this book comes pretty close!

While  this book is fairly comprehensive and widely recognized a go-to resource for caregivers, I do not recommend reading this book cover-to-cover.  Especially for those who are new to caregiving, the multitude of topics and problems addressed in the book can be overwhelming or even a little scary.  I advise using this book more as a reference, using the sections that apply to you, your loved one, and your family at the time, to avoid catastrophizing or excessive worry.  Don’t get ahead of yourself!

This is an older copy. I highly recommend the more recent 6th edition.

There are many additions to this book since it’s original publication in 1981.  The book has grown and evolved over the years, as our knowledge of Alzheimer’s and Dementia has also grown and evolved.  I recommend the more recent editions for the most up-to-date information and resources.  The 6th Edition was published in 2017.  Below you can hear one of the authors, Dr. Peter Rabins talk about the latest edition.

I give this book an A.

It’s comprehensive, honest, and compassionate.  Be prepared that reading it may stir up some strong emotions, however you will come away from reading informed, equipped, and self-aware.

Mace, N. L., & Rabins, P. V. (2011). The 36-hour day: A family guide to caring for persons with alzheimer disease, related dementing illnesses, and memory loss in later life . Baltimore: Johns Hopkins University Press.

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