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13 - Caring for Individuals with Alzheimer's Disease

Ethical Issues along the Way

Published online by Cambridge University Press:  05 June 2012

By
Robyn S. Shapiro
Edited by
Thomasine Kushner
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Summary

A man does not consist of memory alone. He has feeling, will, sensibilities, moral being. … And it is here … that you may find ways to touch him.

– A. R. Luria (from a personal letter to Oliver Sacks)

What is the first and most important thing you as a caregiver can do for a patient diagnosed with Alzheimer's disease? Learn everything you can about the disease. This will help you not only in understanding what to expect but also in planning, managing, and making the most of available options.

Chapter Sixteen in this book, “Being and Thinking,” describes the characteristics of dementia, which can have many causes. It is estimated that in industrialized nations around the world, approximately 60% of dementia is attributed to Alzheimer's disease. Every seventy seconds, someone develops Alzheimer's disease; as many as 5.3 million people in the United States are living with it now, and nine million cases are projected by 2040. This prevalent and devastating disease presents numerous challenges not only to patients, but also to caregivers. This chapter discusses a variety of issues that caregivers may confront in different stages of the disease and suggests further reading and useful resources.

Stages of the Disease

Although several scales have been developed to describe the progression of Alzheimer's disease, researchers and health professionals generally refer to three broad stages, characterized by the following usual symptoms:

Mild: The patient has difficulty concentrating and exhibits a diminished ability to plan and carry out household tasks, manage finances, or organize daily living.

Keywords

Alzheimer's diseasecaregiverscognitive abilitiespatientdementia
Type
Chapter
Information
Surviving Health Care
A Manual for Patients and Their Families
 , pp. 179 - 190
Publisher: Cambridge University Press
Print publication year: 2010

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References

Martin, RJ, and Whitehouse, PJ: The clinical care of patients with dementia. In Dementia Care: Patient, Family, and Community, edited by Mace, N. L. (Baltimore: Johns Hopkins University Press, 1990): 25.
[2] Sacks, O: Musicophilia: Tales of Music and the Brain (New York: Knopf, 2007): 201–231.
Bell, V, Troxel, D: The Best Friends Approach to Alzheimer's Care (Baltimore: Health Professions Press, 1997).Google Scholar
Binstock, BH et al. (ed.): Dementia and Aging: Ethics, Values and Policy Choices (Baltimore: Johns Hopkins University Press, 1992).
Center for the Study of Bioethics at the Medical College of Wisconsin: Making Day-to-Day Decisions Wisely: A Practical Handbook on Ethical and Legal Issues for Caregivers of Individuals with Alzheimer's Disease. (Milwaukee: Medical College of Wisconsin, n.d.).
Kitwood, T: Dementia Reconsidered: The Person Comes First (Buckingham: Open University Press, 1997).Google Scholar
Mace, NL (ed.): Dementia Care: Patient, Family and Community (Baltimore: Johns Hopkins University Press, 1990).
Mace, NL, Rubins, PV: The 36-Hour Day (Baltimore: Johns Hopkins University Press, 1991).Google Scholar
Morris, JC (ed.): Handbook of Dementing Illness (New York: Marcel Dekker, 1994).
Post, SG: The Moral Challenges of Alzheimer's Disease (Baltimore: Johns Hopkins University Press, 1996).Google Scholar
Sabat, SR: The Experience of Alzheimer's Disease: Life Through a Tangled Veil (Oxford: Blackwell, 2001).Google Scholar

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