Stephen G. Post

Fairhill Guidelines on Ethics of the Care of People With Alzheimer's Disease: A Clinical Summary*

These guidelines summarize the content of meetings of family caregivers and individuals with dementia of the Alzheimers type who identified and spoke on ethical issues in dementia care and who engaged in dialogue with an interdisciplinary and interprofessional group of individuals working in the field of Alzheimers disease. This inductive method begins with attentive listening to the voices of the affected population and family members, in contrast with a theoretical and deductive approach to ethics.

Who seeks genetic susceptibility testing for Alzheimer’s disease? Findings from a multisite, randomized clinical trial

Purpose: Alzheimer’s disease, for which one form of the apolipoprotein E (APOE) genotype is a risk factor, provides a paradigm in which to examine response to susceptibility testing for common, complex diseases. This study’s main purposes were to estimate interest in such testing and to examine demographic predictors of study participation.Methods: In this 3-site, randomized clinical trial (RCT), the intervention was a risk assessment program wherein genetic counselors educated adult children of AD patients about lifetime risk of disease based on their gender, family history, and APOE genotype. Two groups of participants were followed from initial contact to RCT enrollment: those who were systematically contacted through research registries, and those who were self-referred.Results: Of 196 systematically contacted participants, 47, or 24%, progressed from initial contact to RCT enrollment. These participants were more likely to be below age 60 (adjusted OR = 3.83, P < 0.01) and college educated (adjusted OR = 3.48, P < 0.01). Of 179 self-referred participants, 115, or 64%, progressed from initial contact to RCT enrollment. Most self-referred participants had a college education and were female (79%).Conclusions: In the first RCT to examine genetic susceptibility testing for AD, uptake rates were sufficiently high to merit concern that future test demand may strain available education and counseling resources. Findings suggest that susceptibility testing for AD may be of particular interest to women, college educated persons, and persons below age 60.

reasons for Seeking Genetic Susceptibility Testing Among First-degree Relatives of People With Alzheimer Disease

&NA; Advances in genetic research have provided a basis for susceptibility testing for Alzheimer disease (AD). Prior surveys have examined attitudes toward genetic testing for AD in hypothetical scenarios, but it is unclear what reasons would motivate people to seek testing in real‐life situations. This study presents data from the first randomized trial to evaluate genetic susceptibility testing for asymptomatic adult children of people with AD. We examined (1) reasons endorsed as motivations for seeking testing, (2) demographic characteristics associated with these reasons, and (3) how these reasons related to the eventual decision to pursue testing. Eligible participants were 206 adult children of people with AD (mean age 53 years; 72% female; 93% white), 77.7% of whom (n = 160) went on to seek testing. Participants endorsed numerous reasons for seeking susceptibility testing (mean 7.2), encompassing a range of motivations. The most commonly endorsed reasons were as follows: (1) to contribute to research (93.9%), (2) to arrange personal affairs (87.4%), and (3) the hope that effective treatment will be developed (86.8%). Women strongly endorsed more reasons for seeking testing than men (p < 0.05). The best predictor of actual pursuit of testing was strong endorsement of the need to prepare family members for AD (odds ratio = 3.3, p < 0.01). Findings suggest that genetic susceptibility testing is of interest to individuals at risk for AD for a variety of reasons, even in the relative absence of available treatments.

Biogerontology, “Anti‐aging Medicine,” and the Challenges of Human Enhancement

Slowing the aging process would be one of the most dramatic and momentous ways of enhancing human beings. It is also one that mainstream science is on the brink of pursuing. The state of the science, together with its possible impact, make it an important example for how to think about research into all enhancement technologies.

Alzheimer Disease and the "Then" Self

The authority of the intact self over the future severely demented self is based on notions of integrity and precedent autonomy. Despite criticism of this authority, the principle of precedent autonomy in the care of people with Alzheimer disease or other progressive and irreversible dementias retains its moral significance.

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 Alzheimers disease and their caregivers? Based on collected preliminary anecdotal accounts, these concerns are important and should be considered carefully by clinicians, researchers, and families.

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.

Alcoholics Anonymous-Related Helping and the Helper Therapy Principle

The helper therapy principle (HTP) observes the helpers health benefits derived from helping another with a shared malady. The HTP is embodied by the program of Alcoholics Anonymous as a method to diminish egocentrism as a root cause of addiction. This article reviews recent evidence of the HTP in alcohol populations, extends to populations with chronic conditions beyond addiction, and concludes with new directions of empirical inquiry.

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.

Medication use to treat memory loss in dementia Perspectives of persons with dementia and their caregivers

Treatment decisions for symptoms associated with dementia are complex, involving persons with dementia, caregivers and physicians. Our exploratory focus group research examined the views of Caucasian and African-American persons with dementia (n= 19) and their caregivers (n= 19) surrounding use of and hopes for existing medications to treat the symptoms of memory loss, willingness to stop medication use at some point in the future, and willingness to try medications that may become available. Participants in our focus groups expressed relatively high hopes for what medications could do to treat memory loss, a general willingness to try hypothetical new treatments, even those with serious side-effects and high costs, and were optimistic that scientists would find new treatments to significantly affect the course of memory loss in their lifetimes. Our results suggest caregivers and persons with dementia need better information about the likely impacts of medications in order to make informed treatment decisions. Efficacy, side-effects, cost, and the need for ‘hope’ embodied in concrete actions (e.g. taking a medication) must be weighed.