Services Needed by Alzheimer Patients

A report of the Presidential Commission for the Study of Ethical Problems in Medicine, Seeking Access to Health Care , notes the depth of a society's concern about health care can be seen as a measure of its solidarity in the face of suffering and death. A society's commitment to health care reflects some of its most basic attitudes about what it means to be a member of the human community.

Our society needs to determine the level of health care that will assure both persons with Alzheimer's disease and their families that we truly value them as members of the community. Our present commitment to the health care needs of Alzheimer families is growing but still falls short of what is needed. Recent studies indicate that families provide most of the services needed by Alzheimer patients. The families interviewed indicated that they must exhaust most of their personal resources in order to qualify for Medicaid coverage. The burden they bear can be gauged from the cost of covering four million persons with Alzheimer's in nursing home settings, at an average cost of $60,000 per year .

Those who argue for a right to health care for citizens in general, and in particular for the victims of catastrophic diseases like Alzheimer's, are aware that as a society we tend to limit such rights. It is more realistic to seek an adequate level of health care for persons with Alzheimer's rather than advocate services based on the idea of strict equality in health care. Many find claims based on strict equality to be unacceptable, but they might accept the right to an adequate level, which would guarantee the dignity and self-respect of persons with the disease. In addition, humane and worthy surroundings for care would be provided under such a standard. The details of specific levels of care and a description of humane surroundings would need to be developed to form responsible societal attitudes.

Some More Facts

Many reports indicate the existence of major gaps in the care of persons with Alzheimer's disease and in support systems for their families. The gaps occur in: treatment, efforts to assist families of persons with Alzheimer's disease, alternative systems of care, training of research and clinical personnel, educational materials and information dissemination for the public and professionals, and financing systems of care. The essential ethical issue facing our society is the provision of adequate care for those with the disease; the absence of such care can no longer be excused on the basis of a lack of information about the existence and prevalence of Alzheimer's disease. Callahan (1995) argues that the selfhood of persons with Alzheimer's demands that vigorous efforts to promote the most supportive environment be in place until the late stages of the disease. He points to the progress being made in maintaining the cognitive well-being of persons throughout many stages of the disease.

Ambiguity and uncertainty are to be expected in dealing with the issues of care for persons with Alzheimer's disease. Despite such difficulties, a humane society can meet the challenge by providing a true community of care in which human dignity is assured throughout the tragic course of the disease. The demise of competency and self-awareness must not be seen as a loss of personhood; the loss of the ability to be self-determining does not rob a person of basic human dignity. A person with Alzheimer's disease remains a human person throughout the course of the disease. To be considered less than human exposes such non persons to the danger of being discarded as unworthy of rights and privileges. Our society has a profound ethical responsibility to respect the Alzheimer patient and to align itself with heroic family members and dedicated health care professionals in providing optimal care for the victims of this disease. Ethical relation, at the individual, institutional, and societal levels, must be an ongoing reality if the well-being of persons with Alzheimer's disease and their families is to be assured.