AD/RD (Alzheimer’s Disease and Related Disorders) lasts for many years, during which time behaviors and abilities change as the disease progresses. It is imperative that you, as the primary caregiver, educate yourself about AD/RD. Without knowledge and training, you will not be able to care for your loved one in the best way possible, no matter how sincere your intentions. You will also burn out quickly. Caregiving does not only mean hands-on care, it is care management and advocacy.
Each person with this disease will live his or her journey in a unique way. The 36-Hour Day by Nancy L. Mace and Peter V. Rabins is the book to read if your loved one has the disease. Written over 30 years ago, it has since been updated and remains the best-seller in books covering this topic. It is a practical guide for loved ones of AD sufferers.
The book, or family guide as it is called, begins with basic information on dementia and getting evaluated. It goes on to cover problems with behaviors and mood, and the effects on the family. Later chapters discuss finances, legal issues and living arrangements. The book also provides information on such topics as sexuality and dementia that is not often openly talked about. Caregivers are given tools to care for themselves and advice on getting outside help. No one can do this alone!
When clients ask me what book they should read that could provide them with practical tips on caring for their loved ones, The 36-Hour Day is the guide book I recommend. It provides necessary information without clinical overloads giving the reader clear and realistic explanations from the early stages and through different behaviors common to Alzheimer’s Disease. But, since the book covers the disease from early diagnosis to late stages, many find the information overwhelming and may not be ready to read about stages that are not significant at a given time.
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I caution readers not to read the entire book at once. There is much information and going through all the stages can be overwhelming and depressing. When you are already feeling lost and scared, why burden yourself with reading about difficult behaviors your loved one may never experience?
AD is an insidious disease but some individuals can have an easier journey, entering a world unknown to us without serious behavior issues. In such situations it may not be wise to read about difficulties that may never arise and may only cause anxiety and stress.
Knowledge is power. Because there is so much misinformation about AD, this practical guide is invaluable. As The New York Times reviewer wrote “Excellent guidance and clear information.”