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Part IV: Politics, Policy, and the Perspectives of the Caregiver and Patient
- Johns Hopkins University Press
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PART IV Politics, Policy, and the Perspectives of the Caregiver and Patient Since the recovery (described in Chapter 1) of the original file of Auguste D., Alzheimer’s first patient, her haunting photograph has begun to attain iconic status in professional lectures on the disease around the world—indicating the significance attached to the perspective of the patient. It is, after all, the sufferings of the patient and caregiver that biomedicine aims to alleviate. Yet in practice, the perspectives of patients and their caregivers are often difficult to discern. In part, this is because the disease makes it difficult for patients to articulate, and for professionals to hear, a coherent perspective. But another difficulty lies in the political climate of the public policy arena in which the professional perspectives of biomedical scientists, lobbyists, and policy makers tend to overshadow the everyday concerns of patients and caregivers. The chapters in this section seek to elucidate both the difficulty and the crucial importance of the perspectives of caregivers and patients if we are to formulate effective and ethically sound policies. Understanding the perspective of the caregiver and patient must begin with recognition that the concept of Alzheimer disease (AD) has multiple meanings, determined by one’s experience of the disease and the particular problems it presents in a given context. For biomedical researchers struggling to win National Institutes of Health support for their work, the disease presents itself as both a daunting scientific challenge and an opportunity to build a career. Public policy makers and analysts experience the disease as one of many claims on an increasingly scant pool of resources. Caregivers, as Gubrium’s chapter in the previous section showed, experience the disease in terms of their concrete, every- 206 Concepts of Alzheimer Disease day struggles to meet the immense physical and emotional burdens of caring for the demented patient. In a similar way, Stephen Post’s chapter demonstrates that the meaning of AD for the patient (in the context of our culture) lies in its profound threat to the integrity of the self. The history of the Alzheimer’s Association, the subject of the chapters by Patrick Fox and Katherine Bick, is central to understanding both the difficulty and importance of the caregiver perspective because the association has aspired to translate that perspective into public policy. In so doing, the association played a pivotal role in making AD a major public health issue in the early 1980s. Founded in 1979 by the merging of seven organizations around the country, the Alzheimer’s Association combined the grassroots support and energy of families and caregivers with the professional authority and political savvy of scientists and federal officials to lobby the federal government to assist with the material burdens of caregiving and to mount an extensive research program to discover treatments and ultimately a cure for AD. Thus, from the outset , the association has had to balance the interests of caregivers, biomedical researchers, and federal officials. Where the interests of caregivers have been identical with those of researchers and interested federal officials (e.g., winning federal support for a massive biomedical research effort), the association has been able to translate caregiver interests into policy. Where the interests of caregivers have been unrelated to, or in conflict with, those of biomedical researchers and federal officials (e.g., establishing federally funded long-term care insurance), it has been far less successful. Fox’s chapter explores in detail the creation of the association around a disease-specific strategy to win funds for basic biomedical research on AD, and argues that this tremendously successful strategy has contributed to the failure to attain the association’s policy objectives regarding support for caregivers in the form of policies such as universal health coverage and long-term care insurance. Caregiver input in the form of lobbying Congress was a major part of the strategy to win funds for research. At numerous congressional hearings and media events, caregivers told personal stories of the crushing emotional, physical, and financial burdens AD imposed, lending the lobbying efforts a tremendous moral appeal—an appeal that Robert Butler, former NIA director and one of the principal architects of this strategy, termed the ‘‘politics of anguish.’’ But when it came to policy aimed to assist with the burdens of caregiving, the disease-specific approach was counterproductive. The disease-specific strategy rested on an argument that finding effective treatments and ultimately a...