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. The direct contribution of height to well being may be less than the current model of clinical care of short stature assumes. Rather, the new studies provide evidence to support a role for psychosocial factors, including height-related beliefs, social support, and coping skills, in promoting psychosocial well being, specifically quality of life and self-esteem. SUMMARY: Clinical care of short stature would benefit from incorporating a holistic model of care that considers psychosocial interventions in addition to, or instead of, rhGH treatment.

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.S. bioethicists on a wide range of ethical issues, including topics related to abortion, medical aid in dying, and resource allocation, among others. We also asked bioethicists about their demographic, religious, academic, and professional backgrounds. We find that bioethicists' normative commitments predict their views on bioethical issues. We also find that, in important ways, bioethicists' views do not align with those of the U.S. public: for instance, bioethicists are more likely than members of the public to think abortion is ethically permissible but are less likely to believe compensating organ donors is. Our demographic results indicate the field of bioethics is far less diverse than the U.S. population-less diverse even than other academic disciplines-suggesting far more work needs to be done to build an inclusive field.

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. With a focus on the U.S. context, this landscape review considers the status of provisions that would legally permit people facing dementia to hasten death with appropriate support from medical professionals. This review can be used to plan and guide clinical and legal practitioner discussion and policy development concerning evolving questions not fully covered by existing medical decision-making provisions.

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. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia.

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. Specific proposals, such as payment for dementia care managers and new systems to support high-quality, symptom-based palliative care beyond the hospice benefit of only six months, would improve and reframe how many people in the United States experience a dementia illness. Such changes should be incorporated into discussions about improving and respecting preferences in the later stages of dementia.

Diagnosing Preclinical and Prodromal Neurodegenerative Diseases-The Clinical Is Political.

This Viewpoint describes clinical and political considerations for individuals diagnosed with neurodegenerative conditions during the preclinical or prodromal stage.

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. It concludes with a discussion of strategies for addressing these issues and prompting valuable research.

Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

How reactions to a brain scan result differ for adults based on self-identified Black and White race.

INTRODUCTION: How do reactions to a brain scan result differ between Black and White adults? The answer may inform efforts to reduce disparities in Alzheimer's disease (AD) diagnosis and treatment. METHODS: Self-identified Black (n = 1055) and White (n = 1451) adults were randomized to a vignette of a fictional patient at a memory center who was told a brain scan result. Measures of stigma and diagnosis confidence were compared between-groups. RESULTS: Black participants reported more stigma than White participants on four of seven domains in reaction to the patient at a memory center visit. Black participants' confidence in an AD diagnosis informed by a brain scan and other assessments was 72.2 points (95% confidence interval [CI] 70.4 to 73.5), which was lower than the respective rating for White participants [78.1 points (95%CI 77.0 to 79.3)]. DISCUSSION: Equitable access to early AD diagnosis will require public outreach and education that address AD stigma associated with a memory center visit.

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. While there are grounds for optimism, leveraging digital monitoring and informatics for cognitive changes also poses ethical challenges, related to topics such as algorithmic bias, consent, and data privacy and security. As we confront the modern era of Alzheimer's disease, individuals, companies, regulators and policymakers alike must prepare for a future in which our day-to-day interactions with technology in our daily life may identify AD-related cognitive changes.

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. Semistructured interviews elicited the caregivers' experiences of plausible lucid episodes. Data analysis used a thematic analysis approach. RESULTS: Most caregivers reported at least 1 episode of lucidity. Episodes were typically brief. Most involved utterances, but nonverbal behaviors were also common. The mental capacities associated with these behaviors included recognition, awareness of surroundings, recognizing others' emotions, and goal-directed behavior. Most caregivers' reactions were positive. Episodes did not lead to changes in major medical decisions but instead to efforts to either modify or reinforce daily caregiving efforts. DISCUSSION AND IMPLICATIONS: Episodes of lucidity were common, a finding seen in other studies. If prevalence studies confirm this, the qualifier "paradoxical" should be eliminated. The caregivers' familiarity with the person living with dementia allowed them to attribute meaning to subtle behaviors that might not otherwise be detected or considered lucid. Clinicians who care for persons with advanced-stage dementia should routinely ask caregivers about episodes of lucid communication and their emotional reactions.

"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.

Supported decision making: Facilitating the self-determination of persons living with Alzheimer's and related diseases.

Decision-making capacity describes the ability to make a particular decision at a given time. People with Mild Cognitive Impairment (MCI) and mild stage dementia typically experience an associated erosion of their decisional abilities. Many could be said to have marginal capacity. These individuals are in a liminal space between adequate and inadequate capacity. Too often, marginal capacity is overlooked as a category: individuals are classified either as having capacity and being able to make decisions independently or as lacking capacity and needing a surrogate to make decisions for them. These approaches can, respectively, result in under- or overprotection of individuals with marginal capacity. A promising alternative approach is supported decision making. In supported decision making, a person with marginal capacity identifies a trusted person or network of persons to aid them in making their own decisions. Supported decision making is recognized by law in a growing number of states; it is important for geriatricians to be familiar with the concept, as they are increasingly likely to encounter it in their practice. Even in states where supported decision making is not formally recognized, it can be practiced informally, helping patients, care partners, and clinicians strike an appropriate balance between respecting autonomy and recognizing vulnerability. In this article, we describe supported decision making, discuss its ethical and legal foundations, and identify steps by which geriatricians can incorporate it into their practice.

Physician-Investigator, Research Coordinator, and Patient Perspectives on Dual-Role Consent in Oncology: A Qualitative Study.

Importance: Classic statements of research ethics generally advise against dual-role consent in which physician-investigators seek consent for research participation from patients with whom they have preexisting treatment relationships. Yet dual-role consent is common in clinical oncology research, as studies are often conducted in close relationship with clinical care. Objective: To explore key stakeholders' perspectives on dual-role consent in clinical oncology trials. Design, Setting, and Participants: This qualitative study with 43 participants was conducted at a National Cancer Institute-designated comprehensive cancer center from 2018 to 2022. Semistructured qualitative interviews of physician-investigators, research coordinators, and patients were performed. Respondents were recruited from 3 populations: (1) physician-investigators engaged in clinical oncology research; (2) research coordinators engaged in clinical oncology research; and (3) patients, with and without prior clinical trial experience, who had received a new cancer diagnosis at least 2 months prior to enrollment in this study. Main Outcomes and Measures: Interviews were audio recorded and professionally transcribed. A thematic analysis approach was used to develop a codebook that included both theory-driven, a priori codes and emergent, inductive codes. Two authors double-coded all transcripts and met regularly to compare coding, discuss discrepancies, refine the codebook, and draft memos describing relevant themes and their frequency. Results: Among the 43 respondents, 28 (65.1%) were female; 9 (20.9%) were African American, 8 (18.6%) were Asian, 6 (14.0%) were Hispanic, and 21 (48.8%) were White; 15 were physician-investigators (6 [40.0%] with 6-10 years of experience, 4 [26.7%] with at least 20 years of experience), 13 were research coordinators (5 [38.5%] with 0-5 years of experience, 5 [38.5%] with 6-10 years of experience), and 15 were patients (9 [60.0%] aged 46-64 years). Four main themes were found: interviewees (1) perceived greater potential for role synergy than for role conflict; (2) reported dual-role consent as having mixed effects on the consent process, increasing prospective participants' understanding and likelihood of agreement while also challenging voluntariness; (3) preferred a team-based approach to the consent process in which physician-investigators and research coordinators share responsibility for communicating with prospective participants and safeguarding voluntariness; and (4) offered strategies for managing tensions in dual-role consent. Conclusions and Relevance: This qualitative study found that concerns about dual-role consent in clinical oncology, while valid, may be outweighed by corresponding advantages, particularly if appropriate mitigation strategies are in place. These findings support a team-based approach to informed consent, in which physician-investigators and research coordinators promote both the understanding and voluntariness of prospective participants.

Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level.

OBJECTIVES: Studies of Alzheimer's disease typically include "study partners" (SPs) who report on participants' cognition and function. Prior studies show SP reports differ depending on the relationship between the SP and participant, that is, spouse or adult child. Adult children SPs are typically female. Could differing reports be due to gender? Knowing this may help explain variability in measurement. METHODS: The Aging, Demographics, and Memory Study enrolled a subset of participants from the Health and Retirement Study. Each participant had an SP. Bivariate and multivariable regression models compared 718 SP-participant dyads. RESULTS: In analyses of 4 groups defined by SP and participant gender, dyads composed of 2 women were less likely to identify as White (75.8%, 95% confidence interval [CI], 70.4-80.5) than dyads composed of 2 men (93.3%, 95% CI, 81.2-97.8). In analyses adjusted for the severity of cognitive and functional impairment, women SPs rated women participants as more active than they rated men, mean 2.15 (95% CI, 2.07-2.22) versus mean 2.30 (95% CI, 2.24-2.37), respectively, on a 4-point scale. Similarly, men SPs rated women participants as more active than they rated men, mean 2.1 (95% CI, 2.0-2.2) and mean 2.4 (95% CI, 2.3-2.5), respectively. In an analysis of cognitively unimpaired participants, women SPs rated participants' memory worse than men SPs did (p < .05). DISCUSSION: SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity.

Testing for Alzheimer Disease Biomarkers and Disclosing Results Across the Disease Continuum.

Three pathologic processes are characteristic of Alzheimer disease (AD): ß-amyloid, hyperphosphorylated tau, and neurodegeneration. Our understanding of AD is undergoing a transformation due to our ability to measure biomarkers of these processes across different stages of cognitive impairment. There is growing interest in using AD biomarker tests in care and research and, with this, a growing need for guidance on how to return these sensitive results to patients and participants. Here, we propose a 5-step approach informed by clinical and research experience designing and implementing AD biomarker disclosure processes, extant evidence describing how individuals react to AD biomarker information, ethics, law, and the literature on breaking bad news. The clinician should (1) determine the appropriateness of AD biomarker testing and return of results for the particular patient or research participant. If testing is appropriate, the next steps are to (2) provide pretest education and seek consent for testing from the individual and their support person, (3) administer testing, (4) return the results to the individual and their support person, and (5) follow-up to promote the recipient's well-being.

Design Considerations for Embedded Pragmatic Clinical Trials of Advance Care Planning Interventions for Persons Living With Dementia.

Advance care planning (ACP) is an important part of comprehensive care for persons living with dementia (PLWD). While many trials have established the efficacy of ACP in improving end-of-life communication and documentation of care preferences, there remains a gap in clinical usage. Embedded pragmatic clinical trials (ePCTs) may facilitate the uptake of evidence-based care into existing healthcare by deploying efficacious ACP interventions into real-world settings. However rigorous conduct of ePCTs of ACP for PLWD presents several unique methodological considerations. Here we describe a framework for the construction of these research studies, with a focus on distinguishing between the target of study: the PLWD, their care partners, or both. We outline specific considerations at each step of the research study process including 1) participant identification/eligibility, 2) participant recruitment/enrollment, 3) intervention implementation, and 4) outcome selection/ascertainment. These considerations are weighed in further detail by describing the approaches from three published trials. Specifically, we consider how potential challenges were overcome by tradeoffs in study design. Finally, we offer directions for future growth to advance ePCTs for ACP among PLWD and catalyze future research.