This chapter contains sections titled: Semantic Externalism: A Rough Sketch and a Gesture at Motivation Interests, Values, and the Mind's End Beyond Externalism About Mental Contents Acknowledgments References.

The leading accounts of the ethics of proxy decision making implicitly draw on internalist conceptions of the philosophy of mind, or so this essay tries to demonstrate. Using the views of Ronald Dworkin as its jumping‐off point, the essay argues that accepting the sort of externalism associated with writers such as Putnam and Burge would alter Dworkin's conclusions concerning how we should respond to the current or precedent decisions of people suffering from dementia. Building on the views of Agnieszka Jawarska, (...) it argues that accepting “active” externalism à la Clark and Chambers would provide currently competent people with new resources for establishing the authority of their present values over inconsistent values they might come to entertain should they become demented. (shrink)

Impairment of the Self has been described in frontal–temporal dementia but little research has been carried out in patients with Alzheimer’s disease. Objective. The aim of this study was to explore changes in the self in patients with AD. Method. Forty-seven patients with mild to moderate AD were examined using a semi-structured scale designed to assess the self-concept along three dimensions, namely, the Material Self, the Social Self and the Spiritual Self. Results. The majority of patients presented impairment of (...) at least one dimension of the Self. When only one dimension was affected, it was always the Social Self. The severity of impairment of the Self was correlated to the impairment of the semantic autobiographical memory and apathy. The Self is impaired in AD and the Social Self dimension appears to be more vulnerable in AD than other dimensions. (shrink)

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of (...) ’study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

In this article, I consider my relationship with my father who developed Alzheimer's disease and criticize dominant models of social interactions and relationships. I argue that the point of a relationship is not what we exchange or achieve within it. The point is not even that we depend on others for our vital needs. The point is simply that a relationship is valuable in and of itself.

In lieu of an abstract, here is a brief excerpt of the content:Alzheimer's Disease, Aging, Chance, and RaceAtwood D. Gaines (bio)KeywordsAlzheimer’s disease, chance, mild cognitive impairment, racism, social constructionsThomas Kirkwood's comments are a welcome, articulate detailing of how and why we age with special reference to the brain. As well, his paper indicates clearly that processes reified as pathology and disease, such as Alzheimer's disease (AD), are in fact common and inevitable as the human (...) brain ages. Doubtless, this is the reason that aging is by far the greatest risk factor for the development of AD. A key notion, briefly mentioned by Kirkwood, is that of chance. He points out that, "cells (will be) burdened with protein aggregates and similar materials that will increase with aging. Once again, which cells will experience this fate and which will continue to function healthily is strongly influenced by chance" (Kirkwood 2006, 80–81). This mention of chance is most important for our paper, "Building a Mystery," and for an understanding of science as well. In "Building a Mystery," Peter Whitehouse and I sought to show that the history of AD was not inevitable and demonstrates a variety of chance and singular decisive occurrences of encounters, interpretations, social movements, government initiatives, and technological developments. Such decisive moments do not occur by virtue of some (natural) lawful process that is unfolding, but rather, these are chance events that could have happened in other ways. Indeed, science has been viewed as human attempts to "tame chance" (Hacking 1990). However, it often does so by sleight of hand, misinterpretation, and the biomedical discourse of hope. Increasingly, we are learning that chance is a commonality, not a rarity, in social and biological domains. The biomedical approach assumes the opposite. For example, it seeks to tame the chance appearance of AD in the case of Auguste D, and does so in part by reifying differences that exist, as Kirkwood notes, along a continuum rather than as the discrete entities implied by the labels Alzheimer's disease or mild cognitive impairment (MCI).We thus stand with Kirkwood's bold recognition of chance (see also Kirkwood 2003) in the biological domain and have applied the same idea to the social domain in which we consider the practice of biomedical science. We have elsewhere emphasized consensus statements in the making of AD (Gaines and Whitehouse 1998). In the present article, we add a number of other chance, decisive sociocultural moments to the mix of social processes producing AD and MCI. We have not considered in detail here a host of cultural features in the theory and practice of biomedicine with respect to AD. These include implicit, yet highly [End Page 83] implicative, cultural notions of bilateral kinship employed in genetic research on AD considered elsewhere (Gaines 1998).Bavidge's comments are cogent as well. With respect to the notion of my concept of the local biology of "race" (Gaines 2005), it is germane to point out here that such culturally constructed biologies are relevant to a discussion of AD and other dementias. Such constructions represent culture in science. We used the dramatic example of "race" in US biomedicine because it is experiencing a resurgence as an explanatory tool. For example, recently Haiman et al. (2006) presented research that suggests that "Among cigarette smokers, African Americans and native Hawaiians are more susceptible to lung cancer than whites, Japanese Americans and Latinos." The authors assert, as have many US studies, that their findings show differences relate to the alleged biology of the social groups concerned. Their problem and that of others, is that the groups are social, not biological, and most have mixed ancestry and do not stem from distinct groups. This is particularly true of African Americans and Latinos; both groups are substantially composed of individuals with European, West African, and Native American ancestry in widely varying proportions (Gaines 2005). Thus, they are different only in terms of their classification. Such work regularly overlooks influences, such as environmental racism, discrimination, poverty, and a lack of medical care, as well as other practices. These might include, in a study of smoking, pakalolo smoking (local marijuana) among Hawaiians, who themselves are usually part Portuguese, Japanese, Chinese, and or European... (shrink)

Biomarker-based predictive tests for subjectively asymptomatic Alzheimer’s disease (AD) are utilized in research today. Novel applications of artificial intelligence (AI) promise to predict the onset of AD several years in advance without determining biomarker thresholds. Until now, little attention has been paid to the new ethical challenges that AI brings to the early diagnosis in asymptomatic individuals, beyond contributing to research purposes, when we still lack adequate treatment. The aim of this paper is to explore the ethical arguments put (...) forward for AI aided AD prediction in subjectively asymptomatic individuals and their ethical implications. The ethical assessment is based on a systematic literature search. Thematic analysis was conducted inductively of 18 included publications. The ethical framework includes the principles of autonomy, beneficence, non-maleficence, and justice. Reasons for offering predictive tests to asymptomatic individuals are the right to know, a positive balance of the risk-benefit assessment, and the opportunity for future planning. Reasons against are the lack of disease modifying treatment, the accuracy and explicability of AI aided prediction, the right not to know, and threats to social rights. We conclude that there are serious ethical concerns in offering early diagnosis to asymptomatic individuals and the issues raised by the application of AI add to the already known issues. Nevertheless, pre-symptomatic testing should only be offered on request to avoid inflicted harm. We recommend developing training for physicians in communicating AI aided prediction. (shrink)

In this paper, we suggest some of the dimensions of the problematic concept of Alzheimer Disease as a natural disease discerned by increasingly sophisticated medical scientific progress. Taking a page from Max Weber concerning unique events, we show some of the conceptual building blocks and social processes that have coalesced into the perception of certain phenomena as abnormalities that are seen as implicated in the development of a degenerative disease distinct from the process of normal, but variable, (...) brain aging. We note some of the decisions and social forces pushing for particular conceptualizations, interpretations, and reifications of brain alterations. In so doing, we suggest that the mystery of the "there" may not be much different from, and probably is, the mystery of the "everywhere". (shrink)

The stressful nature of caring for an older adult with a chronic disease, such as Alzheimer’s disease, can create barriers between the caregiver-care recipient, as they try to navigate their continuously changing social relationship. Interpersonal synchrony, is an innovative approach that could help to sustain caregiving relationship dynamics by promoting feelings of connection and empathy through shared behavior and experiences. This review investigates the current literature on interpersonal synchrony from an interdisciplinary perspective by examining interpersonal synchrony through psychological, (...) neural, and hormonal measures across the adult lifespan. We then present a case for examining the degree to which interpersonal synchrony can be used to facilitate affiliation and well-being in the caregiver-care recipient relationship. We find that there is significant evidence in healthy adult populations that interpersonal synchrony can support affiliative feelings, prosocial behavior, and well-being. Characterizing the psychological, neural, and hormonal mechanisms of interpersonal synchrony is a first step towards laying the groundwork for the development of tools to support relational closeness and empathy in the caregiving context. Finally, we explore the strengths and limitations of using interpersonal synchrony to support relational well-being, and discuss possible avenues for future research. (shrink)

IntroductionDementia diseases, especially Alzheimer’s disease (AD), are of considerable importance in terms of social policy and health economics. Moreover, against the background of the current Karlsruhe judgement on the legalisation of assisted suicide, there are also questions to be asked about medical humanities in AD.MethodologyRelevant literature on complementary forms of therapy and prognosis was included and discussed.ResultsCreative sociotherapeutic approaches (art, music, dance) and validating psychotherapeutic approaches show promise for suitability and efficiency in the treatment of dementia, but in some (...) cases still need to be scientifically tested. Biomarker-based early diagnosis of dementia diseases is increasingly becoming a subject of debate against the background of the Karlsruhe ruling.DiscussionNeeds-oriented and resource-enhancing approaches can make a significant contribution to improving the quality of life of people with dementia. The discussion on the issue of “assisted suicide” should include questions of the dignity and value of a life with dementia.OutlookThe integrative dementia therapy model can be complemented by a religion- and spirituality-based approach. Appropriate forms of psychotherapy should be scientifically evaluated. (shrink)

The aim of our research is to explore how Alzheimer’s disease and dementia are represented in the Slovak media. Data consisted of text documents from the Newton media database. Search criteria included TV, radio, print and web sources that mentioned the words “Alzheimer” and “dementia” between 2015 and 2018. A thematic discourse analysis was applied in order to identify the themes and their mutual semantic relations. The analysis was focused primarily on the headlines (n = 227). The results show (...) that the biomedical perspective currently dominates at the expense of a socio-psychological one. Persons with Alzheimer’s disease and dementia are represented as tragic cases and victims of a cruel disease. Responsibility for care and prevention is individualized. Our findings suggest that a new perspective is needed. Such an approach should recognize the dignity and humanity of persons with Alzheimer’s disease and dementia despite their cognitive deficits and respect their socio-psychological needs. (shrink)

This article shows how funding research on Alzheimer's disease became a priority for the British Medical Research Council in the late 1970s and 1980s, thanks to work that isolated new pathological and biochemical markers, and showed that the disease affected a significant proportion of the elderly population. In contrast to histories that focus on the emergence of new and competing theories of disease causation in this period, I argue that concerns over the use of different assessment (...) methods ensured the MRC's immediate priority was standardising the ways in which researchers identified and recorded symptoms of Alzheimer's disease in potential research subjects. I detail how the rationale behind the development of standard assessment guidelines was less about arriving at a firm diagnosis and more about facilitating research by generating data that could be easily compared across the disciplines and sites that constitute modern biomedicine. Drawing on criticism of specific tests in the MRC's guidelines, which some psychiatrists argued were "middle class biased", I also show that debates over standardisation did not simply reflect concerns specific to the fields or areas of research that the MRC sought to govern. Questions about the validity of standard assessment guidelines for Alzheimer's disease embodied broader concerns about education and social class, which ensured that distinguishing normal from pathological in old age remained a contested and historically contingent process. (shrink)

“Readiness cohorts” are an innovation in clinical trial design to tackle the scarcity of time and people in drug studies. This has emerged in response to the challenges of recruiting the “right” research participants at the “right time” in the context of precision medicine. In this paper, we consider how the achievement of “readiness” aligns temporalities, biologies, and market processes of pharmaceutical innovation: how the promise of “willing bodies” in research emerges in relation to intertwined economic and biological time imperatives. (...) Drawing on long-term engagement with the field of Alzheimer’s disease prevention and interviews with researchers from academia and the pharmaceutical industry, we describe the discursive construction and practical arrangement of readiness. This paper contributes to understandings of temporal specificity, or “timing,” within prevention research and casts critical light on the way this specificity—the threshold for “trial readiness”—relates to an opaque and highly speculative drug development pipeline. Extending the study of biomedical potential, as that which holds promise but may not yet exist, we consider how absences operate in adaptive trials. By highlighting these absences, we outline an opportunity for socio-ethical research to intervene in the speculative gaps of drug development. (shrink)

Background and Aims Progress towards validating amyloid beta as an early indicator of Alzheimer’s disease (AD) heightens the need for evaluation of stakeholders’ perspectives of the benefits and harms of preclinical testing in asymptomatic individuals. Methods Investigators conducted and analyzed 14 semi-structured interviews with family members of patients diagnosed with AD. Results Participants reported benefits, including the potential to seek treatment, make lifestyle changes, and prepare for cognitive impairment. Participants identified harms, including social harms, adverse life decisions, and psychological (...) harms. Nine participants reported either a “positive global perspective” or a “positive global perspective (qualified).” Conclusion Results from this study characterized stakeholders’ perspectives on the potential benefits and harms of clinical use of preclinical testing for AD. Investigators used data from this study to develop a framework that contributes to ongoing discussions that will evaluate widespread adoption of preclinical testing and will inform future research. (shrink)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a (...) life-threatening illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The 2004 Meeting of the Society for Buddhist-Christian StudiesFrances S. AdeneyThe 2004 meeting of the Society for Buddhist-Christian Studies was held in San Antonio, Texas, 19–20 November 2004. This year's theme was "Dealing with Illness and Promoting Healing: Buddhist and Christian Resources." During the first session panelists Laura Habgood Arsta, Jay McDaniel, and Beth Blizman presented Christian views on dealing with illness, and Rita Gross responded from a Buddhist (...) perspective. The second session focused Buddhist resources for promoting healing by panelists Francis Tsio and Grace Buford, with Laurel Curran presenting a Christian response.Laura Habgood Arsta presented research done by undergraduate students in border communities between the United States and Mexico. The topic was the connection between the Pentecostal movement and environmental health. Pentecostal Christianity (250–400 million members worldwide) emphasizes the signs that accompany the presence of Christ, evidenced by experiences of spirit baptism and faith healing.Their sample indicated that poor and minority people don't identify with the environmental movement until personal health problems emerge. One possible reason for Pentecostal religion thriving, according to this research, might be that exposure to toxins and poverty draws people to healing, a theological pillar of Pentecostalism. Religious services provide an emotional outlet and inspire self-confidence, which can become a mental health component of a healing solution. Women are free to share and lead services, finding leadership opportunities and a social group in churches. As an inexpensive alternative to medical care, healing in the Pentecostal church provides a sense of physical healing as well as help in overcoming addictions.Beth Blizman informed the group of the toxicity of the Lake Erie area of northern Ohio. Cancer is becoming normalized in this region, which has the highest level of multiple cancers in the United States. Beth feels called to heal her own body and become part of the healing process of that region. She argued that an attitude that disrespects the earth leads to disrespect of one another. "How can healing be found?" she asked. She discussed many resources from ancient monastics to modern women religious, from process and feminist thought to new cosmologies. Finally she connected [End Page 149] Audre Lourde's work on the rejection of difference to the bioregional studies that she has been doing on toxicity and illness.Jay McDaniels followed by giving a Christian perspective on Alzheimer's disease as an ecumenical Christian influenced by Buddhism. He addressed three questions that Christians ask in this situation. The first question is "Where is God now? Is God inside my loved one? How?" In response to this question, Jay outlined an evangelical view of God that understands God as a transcendent being, "way up there, watching from a distance." He contrasted this view with a process view of God as an "umbrella of compassion that envelops the world without smothering it." In this view, God is the great companion, sharing the confusion and anxiety of the ill person.So where is the person as they experience personality changes caused by the disease? Jay addressed this second question through process theology, stating that in process theology the person is defined in Buddhist terms, inheriting from the past and contributing to the future. A person is constantly in flux or transformation, so the person with illness may be a different person than they once were but can be embraced as the person that they are now. The multidimensional universe of process theology allows for a person to live "with one foot on earth and one foot in heaven."Help for dealing with Alzheimer's disease, Jay's third question, can be found in the Benedictine vow of obedience, stability, and ongoing conversion. The deepest need for those with Alzheimer's is to be with them, being available to others to listen. Stability is the vow to stay with the relationship through these changes. Ongoing conversion can come through Alzheimer's as those with this disease invite us into a space of creative imagination and a new kind of respect.Rita Gross responded to the three presentations by arguing that how one perceives a situation changes it tremendously. Two Buddhist principles that apply here are... (shrink)

Older minority Americans experience worse health outcomes than their white counterparts, exhibiting the need for social justice in all areas of their health care. Justice, fairness, and equity are crucial to minimizing conditions that adversely affect the health of individuals and communities. In this paper, Alzheimer's disease (AD) is used as an example of a health care disparity among elderly Americans that requires social justice interventions. Cultural factors play a crucial role in AD screening, diagnosis, and access to (...) care, and are often a barrier to support and equality for minority communities. The “conundrum of health disparities” refers to the interplay between disparity, social justice, and cultural interpretation, and encourages researchers to understand both (1) disparity caused by economic and structural barriers to access, treatment, and diagnosis, and (2) disparity due to cultural interpretation of disease, in order to effectively address health care issues and concerns among elderly Americans. (shrink)

This study aimed to understand the preserved elements of self-identity in persons with moderate to severe dementia attributable to Alzheimer’s disease. A semi-structured interview was developed to explore the narrative self among residents with dementia in a residential care facility and residents without dementia in an independent living setting. The interviews were transcribed verbatim from audio recordings and analyzed for common themes, while being sensitive to possible differences between the groups. The participants with dementia showed evidence of self-reference even (...) though losses in explicit memory were evident. The most noticeable difference between the two groups was time frame reference. Nonetheless, all participants showed understanding of their role in relationships and exhibited concrete preferences. Our findings suggest that memory loss and other cognitive deficits associated with moderate to severe dementia do not necessarily lead to a loss of “self.”. (shrink)

By age 85, most adults manifest some degree of motor impairment. However, in most individuals a specific etiology for motor decline and treatment to modify its inexorable progression cannot be identified. Recent clinical-pathologic studies provide evidence that mixed-brain pathologies are commonly associated with late-life motor impairment. Yet, while nearly all older adults show some degree of accumulation of Alzheimer’s disease and related dementias pathologies, the extent to which these pathologies contribute to motor decline varies widely from person to person. (...) Slower or faster than expected motor decline in the presence of brain injury and/or pathology has been conceptualized as more or less “resilience” relative to the average person This suggests that other factors, such as lifestyles or other neurobiologic indices may offset or exacerbate the negative effects of pathologies via other molecular pathways. The mechanisms underlying neural motor resilience are just beginning to be illuminated. Unlike its cousin, cognitive resilience which is restricted to neural mechanisms above the neck, the motor system extends the total length of the CNS and beyond the CNS to reach muscle and musculoskeletal structures, all of which are crucial for motor function. Building on prior work, we propose that by isolating motor decline unrelated to neuropathologies and degeneration, investigators can identify genes and proteins that may provide neural motor resilience. Elucidating these molecular mechanisms will advance our understanding of the heterogeneity of late-life motor impairment. This approach will also provide high value therapeutic targets for drug discovery of therapies that may offset the negative motor consequences of CNS pathologies that are currently untreatable. (shrink)

Only a few studies explore the lifeworld of the spouses of persons affected by early-onset Alzheimer disease. The aim of this study is to explore the lifeworld of spouses when their partners are diagnosed with AD, focusing on spouses’ lived experience. The study employs an interpretative phenomenological framework. Ten in-depth interviews are performed. The results show that spouses’ lifeworld changes with the diagnosis. They experience an imprisoned existence in which added obligations, fear, and worry keep them trapped at home, (...) both physically and mentally. In their longing for freedom, new strategies and attitudes helps the spouses to create an extended “lived space” with their partner. The findings stress the importance of paying attention to the lifeworld of spouses and making clinical recommendations on this basis. Most importantly, the lifeworld perspective has implications for how we understand what care is. We hope to challenge all different healthcare professionals and invite them to discuss the deep meaning of care and the definition of being professional in encounters with vulnerable others from a lifeworld perspective. (shrink)

As in the United States, the Dutch conversation about assisted suicide emerged primarily in the context of cancer. At least in that context, before acceding to a request for assistance in dying, caregivers must be sure that the person has made a voluntary and carefully considered request, and that her suffering is unbearable and without prospect of improvement. The Dutch have recently been trying to use those criteria in the context of Alzheimer's disease. Given the wave of (...) class='Hi'>Alzheimer's cases poised to crash onto wealthy countries, along with emerging technology to detect the disease process before symptoms appear, we should be grateful to the Dutch for that attempt. As a newcomer to this discussion, however, I was struck that those criteria may have a somewhat odd result. A patient with Alzheimer's disease can easily meet the conditions in the early stage of the disease, when one usually has the mental capacity to request assistance in dying and to make the case that one's existential suffering is unbearable. If one is in the late stage, though, it can be much harder to get such assistance because one does not have that capacity. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One (...) could lose years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

There are at least three related issues that need to be resolved in this case: Who should be the patient’s medical decision-maker?, Should the patient be treated and possibly admitted?, and...

With more people in the world living into older age, Alzheimer's and other Dementias: The Facts takes a comprehensive look at the spread of dementia, and provides authoritative information and practical advice for sufferers, their families, and the medical professionals who care for them. -/- Written by a consultant in old age psychiatry, the book provides an overview of all the different types of dementia (including younger-onset dementias), from the most-recognized - Alzheimer's - to the less-frequent types, such (...) as those caused by inherited metabolic disorders or HIV. The book guides the reader step-by-step through how the brain works, and explains in clear and simple language the effect of dementias on the brain, and the impact on an individual's cognitive function. -/- A dedicated chapter explains how a diagnosis is reached, including the different modes of assessment, from blood tests carried out by a GP, to specialist scans, highlighting how the brain actually works. Detailed sections cover the latest treatments available, including the controversial use of antipsychotic medication, and the possibility of disease-modifying treatments in the future. -/- The book also explains how the multi-disciplinary team works together to look after the sufferer's social needs, such as bathing and washing, as well as their spiritual and palliative needs. Alzheimer's and other Dementias: The Facts provides all the relevant information and guidance for sufferers, family and their care-givers to choose the right intervention at the right time, to create - as the book advocates - a unique and personalized management plan. (shrink)

Alzheimer's disease and other forms of dementia are among the fastest growing health problems in America. Dementia incidence tends to increase with age, and the elderly are the fastest growing segment of the population. Medical and social sciences research on dementia involving demented patients is both ongoing and necessary. However, as noted in a report of the Office for Human Subjects Research, “while research with intellectually impaired people generates valuable … data, it also provides significant ethical challenges.

RationaleSurrogates of critically ill patients often have inaccurate expectations about prognosis. Yet there is little research on how intensive care unit clinicians should discuss prognosis, and existing expert opinion-based recommendations give only general guidance that has not been validated with surrogate decision makers.ObjectiveTo determine the perspectives of key stakeholders regarding how prognostic information should be conveyed in critical illness.MethodsThis was a multicenter study at three academic medical centers in California, Pennsylvania, and Washington. One hundred eighteen key stakeholders completed in-depth semistructured (...) interviews. Participants included 47 surrogates of adult patients with acute respiratory distress syndrome; 45 clinicians working in study ICUs, including physicians, nurses, social workers, and spiritual care providers; and 26 experts in health communication, decision science, ethics, family-centered care, geriatrics, healthcare disparities, palliative care, psychology, psychiatry, and critical care.Measurements and main resultsThere was broad support among surrogates for existing expert recommendations, including truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family's needs, and checking for understanding. In addition, stakeholders offered suggestions that add specificity to existing recommendations, including: In addition to conveying prognostic estimates, clinicians should help families "see the prognosis for themselves" by showing families radiographic images and explaining the clinical significance of physical manifestations of severe disease at the bedside. Many physicians did not support using numeric estimates to convey prognosis to families, whereas many surrogates, clinicians from other disciplines, and experts believed numbers could be helpful. Clinicians should conceptualize prognostic communication as an iterative process that begins with a preliminary mention of the possibility of death early in the ICU stay and becomes more detailed as the clinical situation develops. Although prognostic information should be initially disclosed by physicians, other members of the multidisciplinary team-nurses, social workers, and spiritual care providers-should be given explicit role responsibilities to reinforce physicians' prognostications and help families process a poor prognosis emotionally.ConclusionsFamily members, clinicians, and experts identified specific communication behaviors that clinicians should use to discuss prognosis in the critical care setting. These findings extend existing opinion-based recommendations and should guide interventions to improve communication about prognosis in ICUs. (shrink)

In this paper, we examine the case of psychedelic medicine for Alzheimer’s disease and related dementias (AD/ADRD). These “mind-altering” drugs are not currently offered as treatments to persons with AD/ADRD, though there is growing interest in their use to treat underlying causes and associated psychiatric symptoms. We present a research agenda for examining the ethics of psychedelic medicine and research involving persons living with AD/ADRD, and offer preliminary analyses of six ethical issues: the impact of psychedelics on autonomy and (...) consent; the impact of “ego dissolution” on persons experiencing a pathology of self; how psychedelics might impact caregiving; the potential exploitation of patient desperation; institutional review boards’ orientation to psychedelic research; and methods to mitigate inequity. These ethical issues are magnified for AD/ADRD but bear broader relevance to psychedelic medicine and research in other clinical populations. (shrink)

Alzheimer’s disease is an insidious onset neurodegenerative syndrome without effective treatment or cure. It is rapidly becoming a global health crisis that is overwhelming healthcare, society, and individuals. The clinical nature of neurocognitive decline creates significant challenges in bidirectional communication between caregivers and persons with Alzheimer’s disease that can negatively impact quality-of-life. This paper sought to understand how and to what extent would awareness training about the levels of consciousness in AD influence the quality-of-life interactions in the caregiver-patient (...) dyad. A literature review of multiple databases was conducted utilizing a transdisciplinary approach. The sum of findings indicates a positive relationship between enhanced caregiver awareness and training, positive interactions, and improved QOL measures among patients and caregivers. A multidirectional relationship was found among healthcare policies, training and education resources, caregivers, and persons with AD. Specifically, the current lack of policy and inadequate training and educational resources has various detrimental effects on patients and caregivers, while improvements in training and education of caregivers yields positive outcomes in communication and QOL. Furthermore, evidence of preserved consciousness in persons with AD was demonstrated from multiple disciplines, including neurobiological, psychological, and biopsychosocial models. The literature further revealed several methods to access the preserved consciousness in persons with AD and related dementias, including sensory, emotional, and cognitive stimulations. The evidence from the literature suggests a reframed approach to our understanding and treatment of persons with AD is not only warranted, but crucial to address the needs of those affected by AD. (shrink)

We conducted a cross-sectional survey of a random sample of 1943 spouses of home-dwellers with Alzheimer’s disease (AD) to examine the prevalence of court-appointed guardians or financial powers of attorney for persons with AD, related factors and the need for information about these issues among caregiving families. The questionnaire consisted questions on variables of demographic characteristics, disability, symptoms and care needs of the person with dementia, the strain of caregiving, the use of court-appointed legal guardians or powers of attorney, (...) as well as discussions about these issues—and the need for them—with a doctor. The response rate was 77% and the mean ages of those with AD and caregivers were 80.2 and 78.2 years, respectively. The use of legal guardians was rare (4.3%), while the use of financial powers of attorney was more common (37.8%). Only 9.9% of the couples had discussed these issues with their doctor, whereas 47.9% expressed a need for it. The factors associated with the use of these legal arrangements were related to the severity of dementia, including experiencing dementia symptoms for more than 3 years, poor functioning, incontinence and behavioural symptoms. There is a clear need for information on medico-legal issues related to dementia among caregivers of AD patients. If held soon after the diagnosis, such discussions could support the autonomy of these persons in spite of AD and enable them to plan for the future as they wish. (shrink)

An association between age-related hearing loss and Alzheimer's Disease has been widely reported. However, the nature of this relationship remains poorly understood. Quantification of hearing loss as it relates to AD is imperative for the creation of reliable, hearing-related biomarkers for earlier diagnosis and development of ARHL treatments that may slow the progression of AD. Previous studies that have measured the association between peripheral hearing function and AD have yielded mixed results. Most of these studies have been small (...) and underpowered to reveal an association. Therefore, in the current report, we sought to estimate the degree to which AD patients have impaired hearing by performing a meta-analysis to increase statistical power. We reviewed 248 published studies that quantified peripheral hearing function using pure-tone audiometry for subjects with AD. Six studies, with a combined total of 171 subjects with AD compared to 222 age-matched controls, met inclusion criteria. We found a statistically significant increase in hearing threshold as measured by pure tone audiometry for subjects with AD compared to controls. For a three-frequency pure tone average calculated for air conduction thresholds at 500–1,000–2,000 Hz, an increase of 2.3 decibel hearing level was found in subjects with AD compared to controls. Likewise, for a four-frequency pure tone average calculated at 500–1,000–2,000–4,000, an increase of 4.5 dB HL was measured, and this increase was significantly greater than that seen for 0.5–2 kHz PTA. There was no difference in the average age of the control and AD subjects. These data confirm the presence of poorer hearing ability in AD subjects, provided a quantitative estimate of the magnitude of hearing loss, and suggest that the magnitude of the effect is greater at higher sound frequencies.Systematic Review Registration:https://www.crd.york.ac.uk/prospero/, identifier: CRD42021288280. (shrink)

Alzheimer’s disease (AD) in its most common form results in cognitive changes in memory function leading to dementia due to underlying neurodegenerative disease. Recent research advancements in AD...

The rate of individuals diagnosed with Alzheimer’s disease is expected to increase significantly in the coming decades. As more attention is paid to end-of-life care for these patients, questions about the use of assisted nutrition and hydration will become more prevalent. Two recent articles that discuss the use of ANH in patients suffering from advanced Alzheimer’s disease are discussed. The author argues that Pope John Paul II’s designation of medically assisted nutrition and hydration as “ordinary care” does not (...) alleviate the ethical necessity of discerning the benefits and burdens of the procedure for these patients. He argues that tube feeding of patients with advanced Alzheimer’s disease should be considered extraordinary, non-obligatory treatment, but future research is still needed to assess the objective and subjective criteria for making this judgment. National Catholic Bioethics Quarterly 13.3 (Autumn 2013): 469–482. (shrink)

Peterson et al. (2023) identify two potential uses of psychedelic drugs in Alzheimer’s disease and related disorders (AD/ADRD). The first is to treat depression and anxiety that commonly occur afte...

The sporadic nature of Alzheimer's disease argues for an environmental link that may drive AD pathogenesis; however, the triggering factors and the period of their action are unknown. Recent studies in rodents have shown that exposure to lead during brain development predetermined the expression and regulation of the amyloid precursor protein and its amyloidogenic beta-amyloid product in old age. Here, we report that the expression of AD-related genes [APP, BACE1 ] as well as their transcriptional regulator were elevated (...) in aged monkeys exposed to Pb as infants. Furthermore, developmental exposure to Pb altered the levels, characteristics, and intracellular distribution of Abeta staining and amyloid plaques in the frontal association cortex. These latent effects were accompanied by a decrease in DNA methyltransferase activity and higher levels of oxidative damage to DNA, indicating that epigenetic imprinting in early life influenced the expression of AD-related genes and promoted DNA damage and pathogenesis. These data suggest that AD pathogenesis is influenced by early life exposures and argue for both an environmental trigger and a developmental origin of AD. (shrink)

Alzheimer's Disease is a form of dementia that affects the memory, cognition, and motor skills of patients. Extensive research has been done to develop accessible, cost-effective, and non-invasive techniques for the automatic detection of AD. Previous research has shown that speech can be used to distinguish between healthy patients and afflicted patients. In this paper, the ADReSS dataset, a dataset balanced by gender and age, was used to automatically classify AD from spontaneous speech. The performance of five classifiers, (...) as well as a convolutional neural network and long short-term memory network, was compared when trained on audio features and text features. The same audio and text features were used to train five regression models to predict the Mini-Mental State Examination score for each patient, a score that has a maximum value of 30. The top-performing classification models were the support vector machine and random forest classifiers trained on BERT embeddings, which both achieved an accuracy of 85.4% on the test set. The best-performing regression model was the gradient boosting regression model trained on BERT embeddings and CLAN features, which had a root mean squared error of 4.56 on the test set. The performance on both tasks illustrates the feasibility of using speech to classify AD and predict neuropsychological scores. (shrink)

There are two contrasting views on the decision-making for life-sustaining treatment in advanced stages of dementia when the patient is deemed incompetent. One is to respect the patient's precedent autonomy by adhering to advance directives or using the substituted judgement standard. The other is to use the best-interests standard, particularly if the current judgement on what is best for the incapacitated patient contradicts the instructions from the patient's precedent autonomy. In this paper, I argue that the protracted clinical course of (...) dementia over many years requires the extended perspective of a progressive decision-making process—extended in both social space and time. The ongoing debate between these two competing views has missed this perspective by focussing on an exclusive disjunction between the competent former self and the incompetent current self. Drawing on theories of situated cognition in cognitive science, I will show that the cognition of a demented patient can be viewed as extended and embodied by her supportive social environment. As the disease progresses, the content of the mind of a demented person becomes partially constituted by such external resources along with her diminishing intrinsic mind. With this understanding, medical decision-making for a demented patient can be construed as a temporally and socially extended practice. A collective decision-making body consisting of the patient, her family and surrogates, and the clinician, should make progressive decisions as a whole over years of the disease course. Finally, I will provide a practical example of how this proposal can be applied in clinical practice. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Alzheimer's Disease, Mild Cognitive Impairment, and the Biology of Intrinsic AgingThomas B. L. Kirkwood (bio)Keywordsaging, Alzheimer’s disease, genetic mutation, mild cognitive impairment, telomereThe article by Gaines and Whitehouse (2006) raises key questions about the uncertain relationship between (i) the intrinsic, "normal" aging process, and (ii) the clinicopathologic states represented by the labels of Alzheimer's disease (AD) and mild cognitive impairment (MCI). This short commentary (...) offers a perspective on this debate that is drawn from a consideration of underlying biological mechanisms.Because age is unquestionably the greatest single risk factor associated with AD and MCI, I begin by asking what we know about the intrinsic processes of aging. The central feature of current understanding of intrinsic aging is that it consists of the gradual, lifelong accumulation of a wide variety of molecular and cellular faults that begins very early in life and eventually leads to overt functional impairments resulting in age-related frailty, disability, and disease (Kirkwood 2005). This is an essentially bottom-up process. A strong consensus has emerged in recent years that there is no active program for aging and that there are no genetic factors that have evolved specifically to cause aging or age-related diseases. Unquestionably, there are genes that influence susceptibility to disease and even length of life, but these genes are genes for maintenance and repair functions, not for aging. It is the limitation in the past evolutionary pressure to invest in greater longevity than was required, within an environment where life was usually truncated by hazards such as starvation, injury, or infection, that means that our maintenance systems—good as they are—are insufficient to keep us going indefinitely. Added to this is the idea that there are probably also genes that program processes that are good for the young organism, but which may in later life have harmful effects. Processes like inflammation and apoptosis, which are seen to occur extensively in aged tissues, including brain, surely evolved to help cope with infection and cellular damage arising earlier in life. That they are called into play in aged tissues is a direct, but secondary, consequence of accumulated damage.With this general framework to understand the intrinsic biology of aging, let us now ask what we might expect a priori for the aging of an organ such [End Page 79] as the brain. Although we cannot pretend complete ignorance of how the brain actually does age, our enquiry can be based entirely on data from other organ systems, so we can develop our predictions about brain aging without prejudice.Aging begins very early during human development, faults accumulating from the first stages of embryonic development. Each time a cell divides, each of the daughter cells is likely to acquire a few new mutations. We know this from the estimates for the error rate in DNA replication and the size of the human genome. It is confirmed by direct evidence that at individual gene loci where mutations have been measured, mutation frequency increases with age (Morley 1998; Vijg 2000). In addition to replication errors, DNA is damaged on a daily basis to a very considerable degree by agents such as reactive oxygen species (free radicals), which are formed as byproducts of normal cellular metabolism. Although most of this damage is corrected by repair, the repair mechanisms themselves are not error free and additional mutations accumulate through this route. If a mutation is lethal to the cell, the cell dies and thus the mutation is eliminated. However, the majority of mutations are nonlethal, either because the mutation is recessive and the cell carries an intact gene copy on the other chromosome, because the gene is not currently required, or because the mutation produces only a delayed deleterious effect. Examples of genes that produce delayed deleterious effects include the genes responsible for familial AD. It is interesting to reflect that on statistical grounds alone, it is almost certain that each of us carries a randomly determined fraction of cells in our brains that bear amyloid precursor protein or presenilin mutations associated with AD. We also carry a heterogeneous array of random mutations that compromise essential cell maintenance functions. How many such... (shrink)

Music-based interventions (MBI) have become increasingly widely adopted for dementia and related disorders. Previous research shows that music engages reward-related regions through functional connectivity with the auditory system, but evidence for the effectiveness of MBI is mixed in older adults with mild cognitive impairment (MCI) and Alzheimer’s disease (AD). This underscores the need for a unified mechanistic understanding to motivate MBIs. The main objective of the present study is to characterize the intrinsic connectivity of the auditory and reward systems (...) in healthy aging individuals with MCI, and those with AD. Using resting-state fMRI data from the Alzheimer’s Database Neuroimaging Initiative, we tested resting-state functional connectivity within and between auditory and reward systems in older adults with MCI, AD, and age-matched healthy controls (N = 105). Seed-based correlations were assessed from regions of interest (ROIs) in the auditory network (i.e., anterior superior temporal gyrus, posterior superior temporal gyrus, Heschl’s Gyrus), and the reward network (i.e., nucleus accumbens, caudate, putamen, and orbitofrontal cortex). AD individuals were lower in both within-network and between-network functional connectivity in the auditory network and reward networks compared to MCI and controls. Furthermore, graph theory analyses showed that the MCI group had higher clustering and local efficiency than both AD and control groups, whereas AD individuals had lo... (shrink)

Elucidating distinct morphological atrophy patterns of Alzheimer’s disease and its prodromal stage, namely, mild cognitive impairment helps to improve early diagnosis and medical intervention of AD. On that account, we aimed to obtain distinct patterns of voxel-wise morphological atrophy and its further perturbation on structural covariance network in AD and MCI compared with healthy controls. T1-weighted anatomical images of matched AD, MCI, and HCs were included in this study. Gray matter volume was obtained using voxel-based morphometry and compared among (...) three groups. In addition, structural covariance network of identified brain regions exhibiting morphological difference was constructed and compared between pairs of three groups. Thus, patients with AD have a reduced hippocampal volume and an increased rate of atrophy compared with MCI and HCs. MCI exhibited a decreased trend in bilateral hippocampal volume compared with HCs and the accelerated right hippocampal atrophy rate than HCs. In AD, the hippocampus further exhibited increased structural covariance connected to reward related brain regions, including the anterior cingulate cortex, the putamen, the caudate, and the insula compared with HCs. In addition, the patients with AD exhibited increased structural covariance of left hippocampus with the bilateral insula, the inferior frontal gyrus, the superior temporal gyrus, and the cerebellum than MCI. These results reveal distinct patterns of morphological atrophy in AD and MCI, providing new insights into pathology of AD. (shrink)

Although clinical criteria ultimately determine the pathological diagnosis of Alzheimer’s disease, ‘Alzheimer’s’ is also an ordinary sign, falling within a range of other possible signs, values and beliefs that define and are used to interpret dementia and mental diseases. While looking at talk-in-interaction in which two people diagnosed with Alzheimer’s interact with other people, this article tries to show that the way in which both lay and professional people interpret Alzheimer’s signs allows us to shed some light upon the (...) core of the traditional and controversial dichotomy between normal and pathological. The interactions analyzed in this paper show how people oppose biomedical discourse, suggesting that other forms of interpreting aging and forgetfulness are possible. It has opened multiple cartographies or varied spheres of communicability influenced by the signs of Alzheimer’s. (shrink)

Consumer demand for health information and health services has rapidly evolved to capture and even propel the movement to online health information seeking. Seventeen percent of health information internet users will look for information about memory loss, dementia and Alzheimer’s disease. We examined the content of the 25 most frequently retrieved websites marketing AD dietary supplements. We found that the majority of websites and their products claimed AD-related benefits, including improvement and enhancement of function, treatment for AD, prevention of (...) AD, maintenance of function, delayed progression of AD, and decreased symptoms. Supplements were described as effective, natural, powerful or strong, dependable and pure or of high quality. Peer reviewed references to proper scientific studies were infrequent on websites. Statements highlighting the risks of dietary supplements were as common as statements mitigating or minimizing these risks. Different strategies were used to promote supplements such as popular appeals and testimonials. Further enforcement of relevant policy is needed and preparation of clinicians to deal with requests of patients and caregivers is indicated. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Demystifying the Mystery of Alzheimer's as Late, No Longer Mild Cognitive ImpairmentPeter J. Whitehouse (bio)Keywordsaging, Alzheimer’s disease, deconstruction, mild cognitive impairmentProfessor Tom Kirkwood and Michael Bavidge's comments are welcome additions to our discourse as both emphasize the importance of considering mild cognitive impairment (MCI) and Alzheimer's disease (AD) in relationship to the normal biological and cultural processes of aging. Whereas I agree with my colleague (...) and co-author, Atwood Gaines' response, I wish to add my own commentary to update the reader concerning the dynamic political processes at work in the social construction and deconstruction of MCI and AD. I have referred to MCI as autodeconstructing AD because whatever we come to think of the MCI label on the spectrum of cognitive aging should alter our beliefs about the ultimate utility of the concept of AD. Tensions in the field of study of MCI have increased since the project reported in this journal began. The social science and philosophical contributions toward understanding MCI need to inform our debate now; otherwise, we will be less effective at influencing a critical debate for society about its relationships to medicine, science, and modern capitalism.This past year, Ron Petersen, the major proponent of the concept of MCI was awarded the prestigious Potamkin Prize for research in Alzheimer's disease by the American Academy of Neurology. The National Institute on Aging (NIA) placed the discovery of MCI as first on the list of contributions during twenty years of research funded through hundreds of millions of dollars poured into the NIA Alzheimer's Research Centers. Some have even suggested that we relabel MCI of the amnestic type, Petersen syndrome. Yet, John Morris, who was co-awarded the Potamkin Prize, has continued to write that MCI is early AD and most recently has suggested (Morris 2006) that we should revise our diagnostic criteria. He joins me and a growing list of other so-called thought leaders who believe (but do not always state publicly) that the term MCI is not useful clinically. Lon Schneider (2005) has recently joined the camp of critics publicly by suggesting that MCI is [End Page 87] not only confusing clinically but is now possibly retarding research.The proliferation of different kinds of MCI indicates that we are studying heterogeneous processes of brain aging. Whereas, John Morris suggests that we relabel MCI as early AD, I have suggested the converse. For example, in a grand rounds lecture at Johns Hopkins in March 2004, I used the lecture title "LNLMCI (late no longer MCI)" as a synonym for AD.Kirkwood is right to compare the quest for biological therapy for AD to the search to treat aging processes in other organs. He has been an outspoken critic of anti-aging medicine quackery that claims that aging itself is a disease that can be reversed today. But, if AD is brain aging, are we not in fact creating a "disease" category that raises false hopes and expectations?Kirkwood also points out that aging is a lifespan process. To prevent dementia in older individuals, we should prevent damage to neurons in younger individuals. Recently, it has been claimed, for example, that exposure to lead in young animals makes these animals more at risk for amyloid deposition in later life (Basha et al. 2005). Whether or not lead directly affects the pathogenesis of AD, it seems eminently reasonable to try to prevent damage to neurons in young children so that they may have maximum cognitive capacity throughout their lifespan.Almost ten years ago, when I stepped down as the editor of the Alzheimer's Disease and Associated Disorders Journal and as John Morris took over this responsibility, I wrote an editorial calling for the end of AD (Whitehouse 2001). In other words, I argued that thinking through the invention of the term mild cognitive impairment reveals that we are attempting to assign medical categories to what are a heterogeneous set of processes that affect our brains as we age. At the hundredth anniversary of the first case of what we have come to call Alzheimer's disease, perhaps it is time to reflect on the individual and social... (shrink)