What does it mean to provide palliative care (described in detail in chapter 8) to Alzheimer's patients and their families? Essentially, the goal is to keep dying patients comfortable while supporting and comforting family and loved ones. Beyond the usual requirements of palliative care, Alzheimer's patients and their families need palliative care for two physical milestones that come near the end of life and that can overwhelm and distress families. These are a patient's markedly decreased appetite (and inability to eat) and a tendency to take to bed, where physiologic changes cause people to curl up in a fetal position.
As Alzheimer's patients near the end of life, their appetites decrease, or they begin to refuse food or to choke on it. Patients "forget" how to chew or how to swallow. Family caregivers can find this change quite difficult, challenging the very human desire to comfort and nurture others by offering food. Families may or may not want to offer artificial hydration and nutrition-or the patient may have expressed preferences in an advance directive. In either case, health care providers must address loved ones' concerns and fears.
More than patients with other diseases, Alzheimer's patients spend a substantial period at the end of life marked by being mostly unresponsive and bed-bound. At this stage, a patient can be positioned in a recliner; however, she will spend most of her time asleep, punctuated by rather aimless activity or moaning. Usually, this condition comes during or after substantial weight loss and is accompanied by a strong tendency for the legs to contract. Such a patient is "curled in a fetal position," with little muscle and little fat. The patient requires total nursing care, and avoiding skin breakdown is challenging. Such total care is difficult in part because the patient cannot respond in any meaningful way.
As Alzheimer's progresses through its series of dramatic and devastating changes, families learn to adjust to constant losses, living in an almost constant state of bereavement. Some model programs serve as guideposts for how to ease the necessary transitions and have pioneered methods that physically protect and comfort patients while maintaining their safety and supporting loved ones.
13.1.1 Case Study - Oregon Restraint Reduction Project
13.1.2 Case Study - Jacob Perlow Hospice
13.1.3 Case Study - Dementia Study Unit of the Bedford Veterans Hospital
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].