Applying recommendations for diagnostic disclosure of mild cognitive impairment and dementia: Practical guidance for clinicians.

A comprehensive evaluation for cognitive impairment should culminate with the communication of the diagnosis to patients and their care partners. This diagnostic disclosure sets the stage for subsequent care. Diagnostic disclosure for individuals with cognitive impairment due to Alzheimer's disease (AD) or AD-related dementias (ADRD) is particularly nuanced and requires a conscientious approach.

Paving the way for Alzheimer's disease blood-based biomarkers in primary care.

Blood-based biomarkers (BBBMs) for Alzheimer's disease (AD) have the potential to revolutionize the detection and management of cognitive impairment. AD BBBMs are not currently recommended for use in primary care but may soon be as research demonstrates their clinical utility for differential diagnosis and patient management. To prepare for the incorporation of AD BBBMs into primary care, several practical challenges must be addressed.

From an idea to the marketplace: Identifying and addressing ethical and regulatory considerations across the digital health product-development lifecycle.

Widespread adoption of digital health tools has the potential to improve health and health care for individuals and their communities, but realizing this potential requires anticipating and addressing numerous ethical and regulatory challenges. Here, we help digital health tool developers identify ethical and regulatory considerations - and opportunities to advance desirable outcomes - by organizing them within a general product-development lifecycle that spans generation of ideas to commercialization of a product.

A survey study of Alzheimer's stigma among Black adults: intersectionality of Black identity and biomarker diagnosis.

Objective: We urgently need to understand Alzheimer's disease (AD) stigma among Black adults. Black communities bear a disproportionate burden of AD, and recent advances in early diagnosis using AD biomarkers may affect stigma associated with AD. The goal of our study is to characterize AD stigma within our cohort of self-identified Black participants and test how AD biomarker test results may affect this stigma.

The ethical value of consulting community members in non-emergency trials conducted with waivers of informed consent for research.

There is growing interest in using embedded research methods, particularly pragmatic clinical trials, to address well-known evidentiary shortcomings afflicting the health care system. Reviews of pragmatic clinical trials published between 2014 and 2019 found that 8.8% were conducted with waivers of informed consent; furthermore, the number of trials where consent is obtained is increasing with time.

Double-Edged Sword: A Positive Brain Scan Result Heightens Confidence in an Alzheimer's Diagnosis But Also Leads to Higher Stigma Among Older Adults in a Vignette-Based Experiment.

Objectives: Early diagnosis of Alzheimer's disease (AD) using brain scans and other biomarker tests will be essential to increasing the benefits of emerging disease-modifying therapies, but AD biomarkers may have unintended negative consequences on stigma. We examined how a brain scan result affects AD diagnosis confidence and AD stigma.

Methods: The study used a vignette-based experiment with a 2 × 2 × 3 factorial design of main effects: a brain scan result as positive or negative, treatment availability and symptom stage.

Is Suffering a Useless Concept?

"Suffering" is a central concept within bioethics and often a crucial consideration in medical decision making. As used in practice, however, the concept risks being uninformative, ambiguous, or even misleading. In this paper, we consider a series of cases in which "suffering" is invoked and analyze them in light of prominent theories of suffering.

Heightism, growth hormone treatment, and social functioning: a holistic approach to a persistent clinical challenge.

Purpose Of Review: Use of recombinant human growth hormone (rhGH) treatment to increase height in children with non-growth hormone deficient short stature is becoming more common. Yet, the evidence to support the notion that augmenting height directly leads to increased well being, specifically psychosocial well being, is inconsistent, with high-quality evidence lacking.

Recent Findings: Review of recent studies demonstrates that the association between height augmentation and psychosocial well being is complex.

Bioethicists Today: Results of the Views in Bioethics Survey.

Bioethicists influence practices and policies in medicine, science, and public health. However, little is known about bioethicists' views. We recently surveyed 824 U.

Choice in the Context of Dementia: Emerging Issues for Health Care Practice in Aging Societies.

This introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources.

What Makes a Better Life for People Facing Dementia? Toward Dementia-Friendly Health and Social Policy, Medical Care, and Community Support in the United States.

Taking steps to build a more dementia-friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden and make it more possible to imagine more people being able to live what they might consider a "good life" with dementia.

When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory.

Algorithmic identification of persons with dementia for research recruitment: ethical considerations.

Underdiagnosis, misdiagnosis, and patterns of social inequality that translate into unequal access to health systems all pose barriers to identifying and recruiting diverse and representative populations into research on Alzheimer's disease and Alzheimer's disease related dementias. In response, some have turned to algorithms to identify patients living with dementia using information that is associated with this condition but that is not as specific as a diagnosis. This paper explains six ethical issues associated with the use of such algorithms including the generation of new, sensitive, identifiable medical information for research purposes without participant consent, issues of justice and equity, risk, and ethical communication.

Caregiver Accounts of Lucid Episodes in Persons With Advanced Dementia.

Background And Objectives: Paradoxical lucidity is defined as an instance of unexpected lucid behavior in a person who is assumed to be noncommunicative due to a progressive and pathophysiologic dementing process. To inform studies of the prevalence, characteristics, and impact of these behaviors, this interview study examined caregivers' experiences of witnessing paradoxical lucidity.

Research Design And Methods: Participants were family caregivers of persons living with advanced dementia caused by a neurodegenerative disease producing significant impairments in communication.

Alzheimer's in the modern age: Ethical challenges in the use of digital monitoring to identify cognitive changes.

Pushes toward earlier detection of Alzheimer's disease (AD)-related cognitive changes are creating interest in leveraging technologies, like cellphones, that are already widespread and well-equipped for data collection to facilitate digital monitoring for AD. Studies are ongoing to identify and validate potential "digital biomarkers" that might indicate someone has or is at risk of developing AD dementia. Digital biomarkers for AD have potential as a tool in aiding more timely diagnosis, though more robust research is needed to support their validity and utility.

"A Raw Blessing" - Caregivers' Experiences Providing Care to Persons Living with Dementia in the COVID-19 Pandemic.

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.