Comments on research in the social sciences pertaining to Alzheimer's disease: a more humble approach.

This paper suggests that social scientists should make greater efforts to study those questions that truly address the daily needs of the AD community; that they should be more creative in their approach to future care, especially with regard to the social implications of new anti-dementia drugs and other treatments that may alter the course of the disease; and that more research is needed with respect to end of life care, and the controversies surrounding the use of tube-feeding and antibiotics.

Preventing schizophrenia and Alzheimer disease: comparative ethics.

Schizophrenia and Alzheimer disease are both diseases of the brain that involve genetic susceptibility factors and for which the prevention or delay of symptom onset are important research goals. This paper provides some comparisons between current preventive efforts in schizophrenia and Alzheimer disease, focusing on certain ethical features of these endeavors such as potential discrimination, misdiagnosis, and stigma.

A focus group on cognition-enhancing medications in Alzheimer disease: disparities between professionals and consumers.

The emergence of cognition-enhancing drugs in the treatment of Alzheimer disease raises questions about quality of lives for those with dementia and for their caregivers, and about the perceptions of health care professionals. This pilot study analyzes a limited data from a series of three focus groups on the experience of treatment. These groups engaged both Alzheimer disease-affected persons, their caregivers, and a multidisciplinary professional core. We conclude that therapeutic goals need to be better addressed with patients and families, as well as better monitored, with the possibility of withdrawing therapy as appropriate. We also detected, as hypothesized, considerable disparity between the perspectives of professionals and consumers regarding the benefits of therapy.

Comments on research in the social sciences pertaining to Alzheimer's disease: A more humble approach.

This paper suggests that social scientists should make greater efforts to study those questions that truly address the daily needs of the AD community; that they should be more creative in their approach to future care, especially with regard to the social implications of new anti-dementia drugs and other treatments that may alter the course of the disease; and that more research is needed with respect to end of life care, and the controversies surrounding the use of tube-feeding and antibiotics.

Key issues in the ethics of dementia care.

This article discusses nine important medical ethical issues following the progression of irreversible dementia from diagnosis to dying. Issues include prevention, research, truth telling, advance planning, cognitive-enhancing drugs, driving restrictions, respectful caring, distribution, justice, and natural dying.

Physicians and patient spirituality: professional boundaries, competency, and ethics.

Clinical studies are beginning to clarify how spirituality and religion can contribute to the coping strategies of many patients with severe, chronic, and terminal conditions. The ethical aspects of physician attention to the spiritual and religious dimensions of patients' experiences of illness require review and discussion. Should the physician discuss spiritual issues with his or her patients? What are the boundaries between the physician and patient regarding these issues? What are the professional boundaries between the physician and the chaplain? This article examines the physician-patient relationship and medical ethics at a time when researchers are beginning to appreciate the spiritual aspects of coping with illness.

Spirituality, religion, and Alzheimer's disease.

The chaplain's ministry to persons with dementia, often of the Alzheimer's type, is vitally relevant to their clinical well-being. No chaplain should even think that because someone is demented, they can no longer be reached spiritually. While few scientific studies exist, clinical experience and anecdotal accounts suggest that selected pastoral interventions can enhance the quality of life of the mildly, moderately, and even severely demented individual.

Ethical issues in Alzheimer disease: the experience of a national Alzheimer society task force.

There has been increasing recognition of the ethical dilemmas that arise in the delivery of health care services and in planning and executing scientific research. Alzheimer disease (AD) and related dementias pose a particular challenge for families, care providers, and researchers because of the nature of the illness. Naturally, those at potential risk of developing the disease are eager for scientists to develop valid predictive tests for the disease. Alzheimer organizations have developed worldwide in response to the growing awareness and knowledge of the effects of dementia on individuals and their families. These organizations have played a role in advocating for research, increasing general awareness of the nature of the disease, and lobbying for more services for persons with dementia and their families. These organizations have also realized the increasing concern about the many ethical issues that arise in caring for those with AD and researching causes and cures. This paper describes a unique process one national Alzheimer society used to develop an Ethics Task Force to provide guidelines on ethical issues.

Future scenarios for the prevention and delay of Alzheimer disease onset in high-risk groups. An ethical perspective.

CONTEXT: Alzheimer disease (AD) presents a major scientific and social challenge in our aging society. Strategies to prevent or delay onset of symptoms, as well as to prevent the decline into the advanced stage, are urgently needed. While these strategies do not yet exist in a proven and clinically applicable form, the science is progressing rapidly. OBJECTIVES: The pre-eminent goal is to identify asymptomatic persons at high risk for AD and to then apply pharmacologic and lifestyle interventions that delay onset of disease. In this scenario, genetic susceptibility testing may eventually prove accurate enough to be of use in identifying at-risk individuals decades before probable onset, allowing maximal preventive efforts. Second, an important goal is to delay or prevent the onset of moderate and advanced AD through applying compounds that slow the progression of disease, thereby allowing patients to die of unrelated ailments of old age before they lose their capacities to recognize loved ones and to communicate by speech. CONCLUSIONS: This article provides a discussion of these strategies with attention to a variety of ethical issues that should be of concern to physicians and caregivers. An assessment of the scientific evidence for preventing or delaying AD should be coupled with values analysis.

Emerging antidementia drugs: a preliminary ethical view.

What ethical concerns regarding the application of new antidementia compounds are pertinent to the best interests of patients with Alzheimer's disease and their caregivers? Based on collected preliminary anecdotal accounts, these concerns are important and should be considered carefully by clinicians, researchers, and families.

The moral challenge of children at risk: protective policies and pediatrics. A report of the Children's Services, Inc. Task Force of Greater Cleveland.

Social workers and pediatricians are among the professionals who share a society-wide concern with current public policies regarding the placement of children at extreme risk. A healthcare professional may successfully treat a child, only to learn later that this same child was the victim of a tragic incident of domestic violence after returning home. Such events are not uncommon, create considerable frustration for pediatricians, and demand an integrated interprofessional and interdisciplinary response. This report emerged from 6 months of task force dialogue with leaders of children's services programs, healthcare professionals, clergy, ethicists, and other community leaders in one major urban environment. It indicates innovative directions in children's protective services with regard to family preservation, foster care, residential care, and adoption. The latter two options could be used much more creatively than is the case currently. The report also asserts that far too few resources are being directed to this problem area.

Physician-assisted suicide in Alzheimer's disease.

This paper takes up the question of physician-assisted suicide (PAS) in Alzheimer's disease (AD), reviewing arguments for and against in a broad interdisciplinary context. Preemptive PAS-AD involving competent patients raises the further question of AD-euthanasia. The author concludes, after thorough assessment of the literature, that caution in moving toward AD-PAS is necessary. However, where PAS is legalized, it may be difficult to justify precluding people with AD from access.

The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective.

OBJECTIVE: Primary caregivers should be aware of recent progress in the genetics of Alzheimer disease (AD) and of the clinical and ethical considerations raised regarding the introduction of genetic testing for purposes of disease prediction and susceptibility (risk) analysis in asymptomatic individuals and diagnosis in patients who present clinically with dementia. This statement addresses arguments for and against clinical genetic testing. PARTICIPANTS: The 20 participants were selected by the investigators (S.G.P., T.H.M., A.B.Z., and P.J.W.) to achieve balance in the areas of genetics, counseling, ethics, and public policy, and to include leadership from related consensus projects. The consensus group met twice in closed meetings and carried on extensive correspondence over 2 years (1995-1997). The project was supported by the National Human Genome Research Institute of the National Institutes of Health. EVIDENCE: All 4 involved chromosomes were discussed in group meetings against a background of information from several focus group sessions with AD-affected families. The focus groups comprised volunteers identified by the Cleveland Area Chapter of the Alzheimer's Disease and Related Disorders Association and represented a variety of ethnic populations. CONSENSUS PROCESS: The first draft was written in April 1996 by the principal investigator (S.G.P.) after the consensus group had met twice. The draft was mailed to all consensus group members 3 times over 6 months for extensive response and redrafting by the principal investigator until all members were satisfied. CONCLUSIONS: Except for autosomal dominant early-onset families, genetic testing in asymptomatic individuals is unwarranted. Use of APOE genetic testing as a diagnostic adjunct in patients already presenting with dementia may prove useful but it remains under investigation. The premature introduction of genetic testing and possible adverse consequences are to be avoided.

Slowing the progression of Alzheimer disease: ethical issues.

Slowing the progression of Alzheimer disease (AD) can be regarded as an unambiguous benefit only up to a point. Beyond that point, the greater human good will involve letting the downward progression proceed. However, defining this point is not easy. It may be useful to distinguish the then-self, i.e., the intact self that relates past, present, and future, from the now-self, i.e., a state in which the demented individual recognizes only the present. In decisions involving treatment and the prolongation of life, many believe that the (precedently expressed wishes of the) then-self takes precedence. Decisions about slowing disease progression involve not only the then-self but the medical community and the caregivers. They, too, may agree that slowing the progression of AD beyond a critical point is unacceptable.