Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 13.0 Alzheimer's and Other Dementias

It is common sense to take a method and try it. If it fails, admit it frankly and try another. But above all, try something.
- Franklin Delano Roosevelt

Opportunities to Honor Life

Roosevelt's admonition to "try something" holds true for organizations working to improve end-of-life care for patients with Alzheimer's and other dementing diseases (referred to as Alzheimer's throughout this chapter, since it is more prevalent). Yet when nothing seems to work, when patients are unresponsive, bed-bound, or wandering, when the caregivers own patience and skill have been tried, what else can be done? This chapter offers some descriptions and ideas for what might be done.

In his best-seller The Notebook (1996), Nicholas Sparks writes about one man's determination to remain connected to his wife of more than 50 years, even as her progressive dementia makes him a stranger to her. The couple has come to live in a nursing home, where they have separate rooms. Each night, the husband secretly goes to his wife and reads to her from a journal that chronicles their shared lives. As Noah Calhoun writes, "There are no monuments dedicated to me and my name will soon be forgotten, but I've loved another with all my heart and soul, and to me, this has always been enough."

The fictional character's dedication to his wife reflects the challenging reality many professional and family caregivers face as they deal with the long and slow progression of Alzheimer's. Despite the dehumanization Alzheimer's seems to cause, loved ones maintain a human and humane desire to stay connected. But the long and slow progression of Alzheimer's takes a toll on patients and families. Family caregivers may need additional emotional and social support as they care for loved ones in the end stages of these diseases.

Until the end of life, patients with Alzheimer's and other dementias need and deserve respect and compassion-and treatment to manage symptoms and maintain comfort. As one leading researcher explains, "I think that it's crucial to recognize that people with very advanced dementia are still sentient human beings who are aware of the environment and still require comfort measures and stimulation" (Volicer et al., 1999).

Health care organizations will increasingly face the needs of people dying of Alzheimer's, which is an ultimately fatal disease: It is the most common dementia and accounts for two-thirds or more of all dementia cases (Costa, 1996). Dementia is an acquired syndrome in which memory and cognitive function decline, eventually rendering patients completely dependent on others.

Even though all patients with dementia will eventually die without having ever returned to health, and even though most will die from the complications resulting from their dementia, health care providers and the general public often forget to view this disease as a fatal condition. Because patients with Alzheimer's may live with the disease for three to seven years, caregivers can find it difficult to recognize when a patient has reached a terminal stage of illness.

As the disease progresses, patients lose their ability to care for themselves and eventually become completely dependent on others, usually on family members-often, frail elderly spouses. The range, frequency, and severity of cognitive deficits and problem behaviors associated with dementia put these family caregivers under physically demanding and unremitting stressors. Providing care to an Alzheimer's patient can result in undesirable social role changes, depression and anxiety, and strained family relations; these caregivers often come to find that life is uncontrollable and overwhelming (Barnes et al., 1981; Morycz, 1985; Rabins et al., 1982; Williamson and Schulz, 1990; Zarit et al., 1980; Collins et al., 1994). Sherwin B. Nuland eloquently describes the life of many Alzheimer's caregivers when he writes, "It often seems as though the families of Alzheimer's patients are sidetracked from the broad sunlit avenues of ongoing life, remaining trapped for years, each in its own excruciating cul-de-sac" (Nuland, 1994).

Alzheimer's and other dementing diseases challenge the creativity and dedication of people who want to improve the quality of life for patients. A few innovative programs and policy initiatives already illuminate how to provide better care for end-stage dementias. The seven promises inherent in reliably competent care (discussed in chapter 2) apply directly to the care of dying dementia patients.

Using these promises, organizations would be able to develop and shape an ideal service program. Patients, families, and professional caregivers would find in their communities the social, medical, and emotional support essential to living with such a debilitating illness.

Organizations and individuals would work together to:

The heart of such a program would be its ability and willingness to celebrate and honor the life coming to a close. Much remains to be done before this vision becomes a reality-but groups involved in breakthrough change can begin to sketch the outlines for this picture.

In This Chapter

Few organizations have applied the Plan-Do-Study-Act model to improve care for dying dementia patients. Yet the success of this model in other areas of health care suggests that it can be applied to Alzheimer's care in a way that leads to reform and improvement. Teams that aim to improve care for Alzheimer's patients will need to use the approaches described elsewhere in this book and tailor them to the needs of dementia patients and their families. This chapter provides background information to guide quality improvement teams, specifically:

The chapter highlights the experiences of a few especially novel programs that have begun to examine the best ways to care for patients with dementia.

Innovators Need to Know

  • The usual elements of good end-of-life care also make sense in shaping programs that serve patients with advanced stages of dementia.
  • Although prognostication is uncertain, many patients could make use of the Medicare hospice benefit or of hospice programs.
  • Advance planning is often quite important, and improvement activities are often effective.
  • Family caregiver support is often a high-yield improvement strategy.
  • Nursing facilities offer a fertile arena for improvement work.
  • Some values issues are sufficiently controversial that improvement teams should be cautious and thoughtful about selecting aims that endorse a particular point of view.

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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 ].

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