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Book Review - The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders
The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders
by Donna Cohen and Carl Eisdorfer
W.W. Norton, 2001
Review by Diana Pederson
Nov 19th 2003

The diagnosis of Alzheimer Disease is one of the most devastating a family can receive about a family member. It ultimately means that unless some other problem kills the person sooner, eventually that person won't even know who his family members are. As Alzheimer's patients say, they lose their "self."

The book has an emphasis on family care giving. It states:

After the diagnosis is made, an individual may live five, ten, or fifteen years or more. These are long human years. Therefore, it is important to set realistic goals, involve appropriate family members to make plans together, find appropriate professional help, and prepare for the future and all the changes it will bring. If the patient and family as well as fictive kin and close friends are able to prepare themselves to deal with the future, there is time to live and love, despite the ravages of a progressive brain disease. [Page 23]

The authors provide fifteen fact filled chapters. The first 3 deal with "The Loss of Self", "The Diagnosis of Dementia" and "Reactions to the Diagnosis". The steps to diagnosing this disease are carefully outlined. Since there is no medical test that can diagnose this disease, the doctor must rule out other possibilities before coming up with this particular diagnosis. Unfortunately, it can take time and be frustrating for the family members trying to provide necessary care for the patient.

Chapter 4, "Setting Goals after the Diagnosis," provides 8 guidelines for coping with the future. These guidelines are (quoted from section titles):

  1. Find Competent and Compassionate Mental Health Professionals.
  2. Find a Confidant.
  3. Hold Regular Family Meetings to Discuss How the Patient is Functioning and Try to Anticipate Future Changes.
  4. Do Not Blame the Patient or Yourself When Things Go Wrong and Your Frustration Level is High.
  5. Try to Sustain or Develop a Sense of Humor.
  6. When You Talk with Your Relative, It Is Sometimes More Important to Listen and Observe Than to Speak.
  7. Honesty is the Only Basis for a Relationship with Your Relative.
  8. Just as Parents Provide Consistency, Love, Security, and a Sense of Order for Children, So Do Family Members Provide a Stable Emotional Environment for the Patient.

Following these guidelines will help the family survive this medical crisis. If they combine these guidelines with the suggested sixteen goals, both the patient and the family can continue to thrive in spite of the mental difficulties.

The remaining chapters talk about the drugs that may possibly help these patients and explains the pros and cons of such treatment. Then several chapters provide an indepth discussion of family care followed by chapters on nursing homes and their cost if that should prove necessary. The final chapter deals with death and dying, the ultimate end of all human beings.

Recommendation: This is a comprehensive book that should be on your shelf or at your fingertips if you have a family member with Alzheimer disease or one of the other dementia disorders. It suggests things you can do to help you be prepared to help with everything from bill paying to finding a nursing home.


2003 Diana Pederson