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Alzheimer's: Hard Questions for Families
 
 
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Alzheimer's: Hard Questions for Families [Paperback]

James Lindemann Nelson (Author)
4.3 out of 5 stars  See all reviews (3 customer reviews)


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Book Description

October 1, 1996
Caring for a loved one who is terminally ill can be tremendously stressful under any circumstances. If that person has a degenerative and dementing disease such as Alzheimer's, and is unable to participate in decisions regarding his or her care, the stress is that much greater. When it comes to making those difficult moral and ethical decisions which will preserve the dignity and integrity of the patient while also maintaining the caregiver's own selfhood, this is the book that can help.

How much should the patient be told? How strongly should he be urged to plan for his own future? Is it ever right to lie to the patient about her condition? When is it right to place your loved one in a nursing home--and not feel guilty about it? How do different family members arrive at agreement among themselves in each of these situations?

Authors and bioethicists James and Hilde Lindemann Nelson have written an invaluable step-by-step guide to tackling these and other difficult decisions. Using their extensive research on moral issues in health care, the Nelsons create hypothetical scenarios that demonstrate some of the most common situations caregivers will have to face during every stage of the illness, and show by example how they can make the right choices for themselves, the patient, and the rest of the family. This invaluable information, combined with a state-by-state and city-by-city guide to agencies and support groups offering practical assistance, as well as a list of suggested reading on the subject, make this book unique--and the most complete source of advice available.

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Editorial Reviews

From Library Journal

Nelson, James Lindemann & Hilde Lindemann Nelson. Alzheimer's: Answers to Hard Questions for Families. Doubleday. Nov. 1996. c.224p. ISBN 0-385-48533-6. $21.95. Cutler, the director of California Clinical Trials, and Sramek, its director of clinical research, provide a readable, straightforward guide to understanding Alzheimer's, which affects one in five older Americans. Their introductory chapters offer a detailed discussion of diagnostic procedures, various theories about causes, and a brief outline of normal brain functioning. While practical suggestions for caring for Alzheimer's patients make up the bulk of this book, ideas for communication techniques, daily routines, and legal and financial matters are also covered. The authors review current drug treatments, and their general description of how drugs and treatments are developed will be of interest to anyone who is considering participation in an experimental drug trial. Appendixes cover diagnostic criteria, drugs, videos, further reading, and resource organizations at the national and state levels. The Nelsons, who as members of the philosophy department of the University of Tennessee teach bioethics, concentrate on the stresses of decision-making by the spouse and/or children of an Alzheimer's patient no longer able to participate in the process. Unfortunately, their style is somewhat pedantic, and they are occasionally judgmental concerning the ethical questions facing the caregivers in their hypothetical scenarios. One wishes they had been less analytical and more sympathetic. Still, families may find that their dispassionate tone is just what is needed to help sort out the multitude of feelings generated by trying to decide what a loved one would have wanted. Of the two titles, Cutler and Sramek's is the preferable purchase for health collections because of its good overview of the disease and its inclusion of up-to-date treatments.?Jodith Janes, Cleveland Clinic Fdn., Lakewood, Ohio
Copyright 1996 Reed Business Information, Inc.

Review

Praise for Hilde and James Lindemann Nelson's previous book, The Patient in the Family: An Ethics of Medicine and Families:

"This is a pioneering work...The Nelsons write clear, untechnical prose with an uncommonly fine eye for detail, and the case descriptions are superb."
--John Hardwig, East Tennessee State University

"Their critique of the current dogmas that tend to guide medical decision-making in the care of incompetent patients is very powerful. This is a clearly written, accessible book that will play a prominent role in subsequent discussions of health care ethics."
--Susan Sherwin, Dalhousie University

Product Details

  • Paperback: 224 pages
  • Publisher: Doubleday; 1 edition (October 1, 1996)
  • Language: English
  • ISBN-10: 0385485336
  • ISBN-13: 978-0385485333
  • Product Dimensions: 7.4 x 5 x 0.6 inches
  • Shipping Weight: 7.2 ounces
  • Average Customer Review: 4.3 out of 5 stars  See all reviews (3 customer reviews)
  • Amazon Best Sellers Rank: #8,137,344 in Books (See Top 100 in Books)

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Customer Reviews

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Average Customer Review
4.3 out of 5 stars (3 customer reviews)
 
 
 
 
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21 of 25 people found the following review helpful:
3.0 out of 5 stars Too judgemental for the subject matter, October 10, 1999
By 
Martha Mckie (Jacksonville, FL USA) - See all my reviews
(REAL NAME)   
The words "selfish" and "selfless" are used repeatedly in this book, and the authors state very clearly that "selfish" is bad and "selfless" is good. It is "selfish" not to take care of your Alzheimer's-afflicted relative in your own home, it is "selfless" to take care of your Alzheimer's-afflicted relative in your own home.

I think that this is already the baseline model that each of us brings with us when we start deciding how to accomodate an Alzheimer's patient that we love. No fresh new outlooks from the labs of academia here. Nor is there any educational material about how ethicists arrive at the conclusions they do.

The format of the book is descriptions of seven composite family scenarios. The tone of the writing underlines the judgemental quality of the thinking by narrating in a sing-songy rhythm, and using character descriptions that remind me of the lesson book we used in my Catholic catechism class during grade-school.

The selfhood discussion comes too late in the book. The concept of "selfhood" and the effects of Alzheimer's on selfhood would have made a much better focus for this discussion than the "family-care good" "institutional-care bad" framework that was so overpowering. They should have featured why a family would want to protect a patient's selfhood, and how other considerations like safety, inconvenience, and concommitant and equally important tasks (such as parenting young and teenage children) might come into conflict with (or dovetail with) protection of the patient's selfhood.

The long-term consequences to each individual of the choices that they make during an Alzheimer's convalescence would have been a less judgemental angle to approach issues of "selfishness" from. There was no recognition in any of the scenarios of the effect of long-standing mental illness in family members, including but not limited to the patient, or ethical ways of viewing "dysfunction" in families facing the care of an Alzheimer's patient.

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5.0 out of 5 stars a wonderful resource!, October 3, 2009
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This book is a wonderful resource for family members with loved ones suffering from dementia. It spells out real life dilemmas, while offering a user friendly ethical and moral compass to help navigate the heart wrenching decisions family members face. I read this book looking for support and practical help in managing my mother's illness... and I found it. Thank you to the authors!
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2 of 5 people found the following review helpful:
5.0 out of 5 stars A Useful Guide to Alzheimer's, June 11, 1999
By A Customer
Answers to Hard Questions for Families guides readers through the difficult moral and ethical problems any family dealing with the disease will have to face.
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Inside This Book (learn more)
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First Sentence:
MARY O'KEEFE is fifty-seven, but she could easily pass for ten years younger. Read the first page
Key Phrases - Statistically Improbable Phrases (SIPs): (learn more)
dementing disease, demented person
Key Phrases - Capitalized Phrases (CAPs): (learn more)
Family Huddle, Howards End, Alzheimer's Association, Dementia Special Care Unit, Marjorie Gibbard
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