Assessment Of Decision-making Capacity Research Articles

Capacity assessment for euthanasia in dementia: A qualitative study of 60 Dutch cases.

The number of patients with dementia who are granted euthanasia or assisted suicide (EAS) increases yearly in the Netherlands. By law, patients need to be decisionally competent or have an advance directive. Assessment of decisional capacity is challenging as dementia progressively affects cognitive performance. We aimed to assess qualitatively which factors, and how, influence the judgment of decisional capacity in EAS cases with dementia. We performed a qualitative study of 60 dementia EAS case summaries published by the Dutch regional euthanasia review committees between 2012 and 2021. Included reports were evaluated using the grounded theory approach. All quotes related to decisional capacity were coded independently by two researchers and compared in an iterative process to formulate an overarching framework on the assessment of decisional capacity. We selected 20 patients who had an advance directive and were judged to be decisionally compromised, as well as a selection of 40 EAS cases judged to be decisionally competent, half of which also had an advance directive (purposive sampling). Decisional capacity was present in every case report. Predefined, external criteria were rarely described explicitly, but physicians indirectly referred to the (cognitive) criteria set by Appelbaum and Grisso. Whether the thresholds for these dimensional criteria were met was influenced by six supporting factors (level of communication, psychiatric comorbidity, personality, presence of an advance directive, consistency of the request, and, finally, the patient-physician relationship) that also directly contributed to the judgment of capacity. The involved physicians and executed investigations were the two contextual factors providing a background. Decisional capacity regarding euthanasia is a multidimensional construct, often implicitly assessed and influenced by supporting and contextual factors. The subjectivity of the final judgment poses ethical and legal issues and argues for continuous quality improvement processes.

Flexibility and Innovation in Decisional Capacity Assessment.

Since the 1980s, the four skills criteria have become the most widely accepted mechanism for the assessment of decisional capacity in the United States. These criteria emerged in response to the paternalistic approach to clinical decision-making that had been widely accepted in an earlier era and offered a means of ensuring that physicians honored the rights of capacitated patients to make their own medical decisions. Unfortunately, the criteria are now applied to situations for which they are not suited and in a manner that is often highly inflexible. In an article in this issue of The Journal, Matthew Dernbach and colleagues describe one potential scenario that requires a flexible approach to using the four skills model: situations in which a patient stands at high risk of losing decisional capacity in the near future. Using Dernbach et al. as a starting point, this article offers specific ways in which the four skills model can be improved upon or augmented without abandoning its key principles. These advances include adjusting to empirical evidence, re-emphasizing the importance of autonomy maximization and restorability, and embracing novel conceptual and technological innovations.

A Roadmap for Assisted Decision-Making Capacity Assessment: Developing a Guide for Occupational Therapists in an Acute Setting

Abstract Background The Assisted Decision-Making (Capacity) Act (ADMA) has been in effect since April 2023. Under the ADMA, Occupational Therapists (OTs) are a prescribed class of healthcare professionals capable of assessing a person's decision-making capacity (DMC). OTs must adapt their practice to comply with the new legislation. OTs in an acute hospital reported poor understanding and low confidence using the ADMA. The aims were to enhance OTs knowledge and understanding of the ADMA, how to adapt their practice and to improve OTs documentation of DMC assessment in healthcare records. Methods OTs were surveyed to ascertain their current understanding of the ADMA, confidence using its guiding principles and to identify specific learning needs to address in education sessions. A multi-modal approach including tailored in-service education and 1:1 coaching sessions enhanced OTs knowledge and confidence in using the ADMA. Template documents were developed to guide OTs documentation of DMC assessment in healthcare records. A post-education survey was administered to determine if education sessions and guidance documents had benefitted OTs. Results Knowledge in using the ADMA improved post-education. 67% reported their understanding as ‘good’ compared to 14% pre-education. 0% reported knowledge as 'poor' or 'very poor' post-education compared to 24%. Confidence improved with 8% reporting they feel ‘very comfortable’ assessing DMC post-education compared with 0%. 0% reported 'not at all comfortable' post-education compared to 18%. 100% of OTs who availed of 1:1 coaching reported benefitting from mentoring. 100% of OTs reported guidance documents benefit their practice. 85% reported the education met their expectations. Conclusion OTs are continuing to learn how to use the ADMA in their practice. OTs require ongoing education and training to improve their skills in DMC assessment and documentation of this process. Changing practice in accordance with the ADMA may take time as this change needs to occur at a national and local level.

Transcultural Psychiatry in Medical Ethics: Assessing Decision-Making Capacity within the Lens of an East African Refugee.

AbstractA 29-year-old female East African refugee with no formal psychiatric history and a medical history significant for HIV was admitted for failure to thrive and concern for bizarre behavior in the context of abandonment by her husband and separation from her child. After psychiatric evaluation, it was determined that she did not have the capacity to care for herself independently; adult protective services then pursued and was awarded guardianship. While admitted, the patient repeatedly refused medical treatment, had a feeding tube placed for forced nutrition and medications (though she did at one point remove this tube herself), and received two electroconvulsive therapy (ECT) treatments. Soon thereafter, the patient's court-appointed guardian met with the primary medical, psychiatric, and ethics teams to discuss goals of care in the setting of complex social and cultural needs. It was collectively determined that the patient's choices to refuse care (including nutrition, lab work, medications, and ECT) and some repeated behaviors (e.g., denial of divorce, denial of HIV, denial of need for care) could be considered culturally appropriate in the context of the acute stressors leading up to hospitalizations. All teams concluded, therefore, that the patient had the capacity to refuse these interventions and that further forced intervention would pose a greater chance of exacerbating her already-significant trauma history than improving her outcomes. Ultimately, the patient was able to be discharged into the care of her guardian, who would assist her in receiving support from members of her community who share her language and culture.

Examining the approaches used to assess decision-making capacity in healthcare practice.

To examine the approaches that are being used in New Zealand when conducting decision-making capacity (DMC) assessments among the healthcare professionals that commonly conduct DMC assessments and those that are involved in, but do not conduct, the assessments. An online quantitative survey was conducted, lasting 10 minutes, including a mix of closed- and open-ended questions. The survey garnered responses from a total of n=78 participants. Bedside cognitive tests were found to be the most commonly reported tool used to assess DMC among those conducting and those contributing to DMC assessments. Nearly a third (31.9%) of participants conducting DMC assessments used a structured clinical interview as one of their most common approaches while 27.5% of this same group reported not being aware of this approach. It was reported by both those conducting and those contributing to DMC assessments that the current standards lack quality and consistency, with partial capacity being poorly understood and identified, and supported decision making often being overlooked for substitute decision making. Current approaches to DMC assessment lack standardisation and consistency, with assessment approaches being widely varied. This article serves as a call for the development of and adherence to nationally recognised standards for DMC assessments.

It’s a spiral staircase, not just two steps: An iterative approach to assessing patient capacity for medical decision-making

The assessment of medical decision-making capacity as part of the process of clinical informed consent has been considered a bioethical housekeeping matter for decades. Yet in practice, the reality bears little resemblance to what is described in the medical literature and professed in medical education. Most literature on informed consent refers to medical decision-making capacity as a precondition to the consent process. That is, a clinician must first determine if a patient has capacity, and only then may the clinician engage with the patient for the rest of informed consent. The problem with this two-step approach is that it makes no sense in actual practice. We see the assessment of medical decision-making capacity within the process of informed consent as a spiral staircase, not just two steps, requiring clinicians to keep circling up and around, making progress, until they get to where they need to be: 1. Clinicians start with a general presumption of capacity for most adults, sometimes having a provisional appraisal of capacity based on prior patient contact. 2. Then, they begin performing informed consent for the current situation and intervention options. 3. Next, they must reassess capacity during this process. 4. After that, they continue with informed consent. 5. If capacity is not yet clear, they repeat 1–4.

Age-bias in assessments of medical decision-making capacity: a cross-sectional experimental vignette study

Accurate assessments about medical decision-making capacity (DMC) are vital but could be susceptible to age-bias. We examined if client age impacts on DMC likelihood assessment. One hundred and forty-seven adults were trained to identify four cognitive abilities (i.e., understanding, appreciation, reasoning, expression). Six experimental vignettes described a person making a diabetes treatment decision with systematic variation of client age (unspecified, 50-, or 95-years-old) and abilities (demonstrated vs uncertain). The dependent variable was DMC likelihood. Standardised tests of explicit (Kogan’s Attitudes Toward Old People scale) and implicit age-bias (IAT) were administered. There was a statistically significant effect of abilities on DMC likelihood. DMC was judged more likely when cognitive abilities were demonstrated. There were no other significant effects. Age-bias, measured implicitly and explicitly, did not influence DMC likelihood. Contrary to the hypothesis, DMC likelihood was unaffected by client age. This suggests that training can mitigate age-bias in simulated clinical DMC evaluation.

Assessment of Decision-Making Capacity in 97 Hospitalized Patients With Cancer: A Call for Standardization

BackgroundHospitalized patients with cancer face pivotal decisions that will affect their cancer care trajectory and quality of life, but frequently lack Decision Making Capacity (DMC). Standardization is conspicuously missing for inpatient oncology teams and for Consultation-Liaison psychiatrists performing DMC assessments for patients with cancer. This study sought to characterize a single institutional experience of psychiatric consultations to assess DMC. MethodsWe conducted a retrospective chart review of ninety-seven consecutive psychiatric consultations for DMC from 2017-2019. Demographic, hospital-based, and psychiatry consult differences were assessed based on the reasons for DMC evaluation (uncertainty, patient refusal, emergency) and whether patients had decisional capacity. ResultsOut of 97 consultations, 56 (59%) hospitalized patients with cancer were unable to demonstrate capacity. Consultations came from medical services almost exclusively. Only 5% of primary teams documented their own DMC evaluation. Only 22% of DMC evaluation by C-L psychiatrists documented four determinates of DMC. Few commented on reversibility or tenuousness of DMC, and the identification of agents/surrogates; however, psychiatry consultants were more likely to follow up on patients without DMC. One-third of patients died in the hospital and two-thirds of patients were deceased three months after the consult. ConclusionsGiven the substantial heterogeneity in the documentation of DMC evaluations in this retrospective chart review, we call for more rigor and standardization in documentation of DMC evaluations.

Capacity Assessment Instrument – Health: Pilot Study of a New Tool for Adults with Dementia

ABSTRACT Objectives This research comprises a pilot study of the CAI-Health, a new tool for the evaluation of decision-making capacity in healthcare. It aims to analyze the instrument’s indicators of reliability and internal validity to conclude its final version. Methods A total of 89 participants were included, of which 22 had Alzheimer’s Disease; 32 had mild cognitive impairment, and 35 were controls. Cronbach’s alpha and the intercorrelation matrix were used as indicators of reliability and internal validity as well as to identify items for elimination. Repeated-measures ANOVA allowed for the analysis of differences between the vignettes that comprise CAI-Health. Results The internal consistency results were acceptable, and no items were proposed for elimination. A repeated-measures ANOVA revealed that the vignettes were unexpectedly equivalent. Despite the procedures used to develop clinical vignettes with increased levels of complexity in assessing decision-making capacity, this study showed no differences in the vignettes’ level of demand. Conclusions The extensive application of CAI-Health compromises its clinical usefulness and viability. To reduce its length while maintaining a thorough assessment of each ability, it was decided to eliminate two vignettes and retain all interview items. The final version of the CAI-Health comprises a clinical vignette and a capacity interview. Clinical implications CAI-Health was designed for the assessment of medical decision-making capacity in older adults.

Decision making capacity for treatment in psychiatric inpatients: a systematic review and meta-analysis.

Decision-making capacity (DMC) among psychiatric inpatients is a pivotal clinical concern. A review by Okai et al. (2007) suggested that most psychiatric inpatients have DMC for treatment, and its assessment is reliable. Nevertheless, the high heterogeneity and mixed results from other studies mean there is considerable uncertainty around this topic. This study aimed to update Okai's research by conducting a systematic review with meta-analysis to address heterogeneity. We performed a systematic search across four databases, yielding 5351 results. We extracted data from 20 eligible studies on adult psychiatric inpatients, covering DMC assessments from 2006 to May 2022. A meta-analysis was conducted on 11 papers, and a quality assessment was performed. The study protocol was registered on PROSPERO (ID: CRD42022330074). The proportion of patients with DMC for treatment varied widely based on treatment setting, the specific decision and assessment methods. Reliable capacity assessment was feasible. The Mini-Mental State Examination (MMSE), Global Assessment of Function (GAF), and Brief Psychiatric Rating Scale (BPRS) predicted clinical judgments of capacity. Schizophrenia and bipolar mania were linked to the highest incapacity rates, while depression and anxiety symptoms were associated with better capacity and insight. Unemployment was the only sociodemographic factor correlated with incapacity. Assessing mental capacity is replicable, with most psychiatric inpatients able to make treatment decisions. However, this capacity varies with admission stage, formal status (involuntary or voluntary), and information provided. The severity of psychopathology is linked to mental capacity, though detailed psychopathological data are limited.

Using Conversation Analysis to explore assessments of decision-making capacity in a hospital setting.

Healthcare professionals (HCPs) have a responsibility to conduct assessments of decision-making capacity that comply with the Mental Capacity Act 2005 (MCA). Current best-practice guidance, such as the Mental Capacity Code of Practice and National Institute for Health and Care Excellence decision-making and mental capacity guidance, does not stipulate how to accomplish this in practice, for example, what questions should be asked, how options and information should be provided. In addition, HCPs struggle to assess the capacity of individuals with communication difficulties. This study was a service evaluation that aimed to objectively analyse, using Conversation Analysis (CA), how real-life capacity assessments were conducted in a hospital setting with patients with acquired brain injury (ABI)-related communication difficulties. A second aim was to establish the feasibility of using CA to advance knowledge of the conduct of capacity assessment. Four naturally occurring capacity assessments were video-recorded. Recordings involved speech and language therapists, occupational therapists, neuropsychologists and patients with communication difficulties as a result of ABI. The methods and findings of CA were used to investigate the interactional behaviours of HCPs and patients during assessments of decision-making capacity. The analysis was informed by our knowledge of the MCA best practice guidance. An overall structure of capacity assessment that enacted some of the best-practice MCA guidance was identified in one recording, consisting of six phases: (i) opening, (ii) preparation, (iii) option-listing, (iv) test, (v) decision, and (vi) close. The preparation phase consisted of two sub-components: information gathering and information giving. Variation from this structure was observed across the dataset, notably in the way in which options were (or were not) presented. CA is a feasible empirical method for exploring the structure and conduct of capacity assessments. CA identifies and provides ways of describing interactional behaviours that align with and diverge from best-practice MCA guidance. Future CA studies including a wider range of health and social care professionals and patients have the potential to inform evidence based training for HCPs who conduct assessments of decision-making capacity. What is already known on this subject The Mental Capacity Act (MCA) is poorly implemented in practice. Healthcare professionals (HCPs) find it challenging to assess the decision-making capacity of individuals with communication difficulties, and people with communication difficulties are often excluded from or insufficiently supported during capacity assessment. Research is limited to self-report methods. Observational studies of capacity assessment are required. What this study adds This is the first study to use Conversation Analysis (CA) to explore how capacity assessments are conducted in a hospital setting by HCPs with people with communication difficulties as a result of acquired brain injury. One video-recorded capacity assessment was structured in six phases that aligned with best practice MCA guidance. However, other capacity assessments deviated from this structure. One phase, option listing, varied in practice and options were not always presented. What are the clinical implications of this work? CA revealed interactional behaviours that align with and diverge from best-practice MCA guidance. Future CA studies are warranted to inform training for health and social care professionals who conduct capacity assessments.

Can We Be Creative with Communication? Assessing Decision-Making Capacity in an Adult with Selective Mutism.

Selective mutism is an anxiety disorder in which an individual is unable to speak in certain social situations though may speak normally in other settings (Hua & Major, 2016). Selective mutism in adults is rare, though people with this condition might have other methods of communicating their needs outside of verbal communication. Healthcare professionals rely on a patient's ability to communicate to establish if they have decision-making capacity. This commentary responds to a case of a young adult patient with selective mutism and social anxieties that significantly limited his ability to communicate with anyone in the healthcare team. This required a creative, patient-centered approach to engage in meaningful communication.

Local Urban Policy Councils: Assessing Decision-Making Capacity in National Metropolises

Resumo Diferentemente das áreas da saúde, educação e assistência social, os Conselhos Locais de Política Urbana permanecem como objetos pouco explorados pelo campo. Tais instâncias participativas possuem papel central na promoção do direito à cidade, contrapondo-se ao padrão histórico de urbanização desigual brasileiro. Neste contexto, a experiência de institucionalização de tais conselhos no Brasil e sua capacidade decisória permanecem por serem investigadas. O objetivo do presente artigo é avaliar o impacto de variáveis de desenho institucional e de ciclo político em sua capacidade decisória, a partir de uma abordagem longitudinal entre os anos de 2009 e 2019 em metrópoles brasileiras. O método de regressão logística binomial foi utilizado para analisar os registros de discussão, deliberação e representação em 195 reuniões, envolvendo 7.759 participantes. Os resultados desvelam desafios persistentes nos espaços de institucionalização de democracia deliberativa em relação ao cenário local de implementação da política urbana apontando para agendas renovadas de pesquisa.

DECISION-MAKING CAPACITY ASSESSMENTS FOR VULNERABLE ADULTS: LESSONS FOR SOCIAL WORK COMPETENCY

Abstract Social work approaches to the assessment of decision-making capacity (DMC) assessment have largely been informed by literature from 25 years ago. Evidence-based practices include the ACED short version and the IDA-CA 3.0. When considering this specific practice by social workers there is the UK policy supporting competent practice through legislation, the Mental Capacity Act (2017) of England and Wales. Nine practitioners practicing through guidance presented by this policy were interviewed to learn what may support practices in the United States. Findings point to the importance of foundational values and efforts to optimize the vulnerable adult’s performance. Practical methods used in the assessment are gleaned, along with the training that has informed their work. Training advice included didactic, case review, and role-playing of increasingly complex cases. Experience working with diverse populations of vulnerable adults was also highlighted. This research strives to inform steps that enhance capacity within health and social care settings to adequately assess DMC. Understanding decision-making ability aids in preventing both paternalism and the insufficiency of support and/or protection.

The Statutory Codification of Decisional Capacity Standards.

The adoption of the widely used four specific skills model of decisional capacity assessment, first proposed by Appelbaum and Grisso in 1988, has become widely accepted in clinical practice. Many jurisdictions have, through legislative action, incorporated one or more of these skills into state law as part of the legal definition of decisional capacity. These statutes pose a challenge for physicians hoping to revise these criteria, as some commentators have recently proposed. This article categorizes and analyzes existing state statutes that define decisional capacity or designate certain classes of individuals to render such assessments. Many of these statutes incorporate aspects of the four skills model into state law, such that legislative action would be required to affect significant changes in methods of capacity assessment. As a result, physicians in many jurisdictions are unable to modify these criteria on their own. Any effort to alter capacity assessment standards will have to take into account the potential challenges to enacting statutory change at the outset of such efforts.

40 Positive and Negative Emotional Outcomes Following Alzheimer’s Disease Biomarker Disclosure in Cognitively Symptomatic Older Adults

Objective:There are many potential benefits of early identification of those with Alzheimer’s disease (AD), including more opportunity for early intervention to slow AD progression (e.g., treatment, lifestyle changes, etc.) and to plan for the future. Positron emission tomography (PET) scans for abnormal amyloid and tau are commonly conducted in research settings. Despite strong interest in learning AD biomarker results, participants rarely receive their research data, in part due to concern about the possibility of undue distress based on results. We aimed to explore both positive and negative emotional reactions following PET biomarker disclosure as a function of result received.Participants and Methods:Forty-three older adults (age = 72.0±6.21 years, education = 16.5±2.62 years, 49% Female, 88% White Non-Hispanic) completed PET amyloid and tau testing and disclosure. Sixty-three percent were diagnosed with mild cognitive impairment (MCI) while the remainder of participants were diagnosed with Dementia Alzheimer’s type (DAT). Participants completed pre-disclosure biomarker education and a decisional capacity assessment followed by baseline measures. Participants then completed a disclosure session where they received personal PET amyloid and tau results on an elevated vs. not elevated scale for each ligand. Results were discussed in relation to presence/absence of Alzheimer’s disease, how the result relates to their cognitive difficulties, and risk of developing Dementia-Alzheimer’s Type. At baseline (pre-disclosure), immediately post-disclosure, and 1-week post-disclosure, participants completed the Beck Anxiety Inventory (BAI), The Geriatric Depression Scale - 15 Item (GDS-15), Impact of Neuroimaging in AD (INI-AD) Scale, and the Positive and Negative Affective Scale - Short Form (PANAS-SF). All questionnaires were modified to apply to Alzheimer’s disease and related experiences.Results:Of the 43 participants who participated in disclosure, 74% received biomarker positive results (either A+T- or A+T+); all others were biomarker negative. We conducted a series of mixed analysis of variance (ANOVA) tests to determine the effect of disclosure and biomarker status for each of the outcomes of interest. Neither the effect of time nor the time by biomarker status interaction was significant for any of the outcomes (all p>.05). The main effect of biomarker status was significant for BAI (F(1)=5.12, p=.031, n,p2=.146) and INI-AD Distress (F(1)=12.70, p=.001, np2=.241) and Positive (F(1)=34.57, p<.001, np2=.464) subscale scores with A+T-/A+T+ participants reporting higher negative affect than those who were A-/T-; however, even among biomarker positive individuals, scores did not exceed clinical thresholds. GDS-15, PANAS-Negative and Positive Subscale scores did not differ significantly by biomarker status (all p>.05) and no significant adverse events occurred following disclosure. Additionally, no participants cited regret about receiving their results.Conclusions:While disclosure of biomarker positivity may result in mild increases in acute anxiety or distress, or fewer positive emotions, it does not result in clinically significant emotional reactions and was not associated with regret. Overall, findings are consistent with literature indicating safety of biomarker disclosure procedures for symptomatic individuals. Future research should follow participants over longer periods to evaluate the impacts of biomarker disclosure.

8 Perspectives of Self, Stigma, and the Future Following Alzheimer's Disease Biomarker Disclosure in Cognitively Symptomatic Older Adults

AbstractObjective:In the absence of treatments to halt or reverse symptoms of Alzheimer's disease, early detection may extend the window for meaningful treatment, advanced planning, and coping. Positron emission tomography (PET) scans for amyloid and tau are validated biomarkers of AD, yet results are rarely disclosed to participants due to concerns about negative impacts. While prior studies suggest limited anxiety, depression, or suicidality following biomarker disclosure, no study to date has examined broader psychological impacts of PET amyloid/tau disclosure to symptomatic individuals. Therefore, we explored post-disclosure changes in future time perspective (perceptions of limited time or possibilities left in the future), self-efficacy for managing symptoms, and perceived stigma as a function of result received.Participants and Methods:Forty-three older adults (age = 72.0±6.2 years; education = 16.5±2.6; 88.4% White Non-Hispanic; 48.8% female) participated in the study, of whom 62.8% were diagnosed with mild cognitive impairment (MCI) and the remainder with Dementia of the Alzheimer's type. All participants underwent pre-disclosure biomarker education and decisional capacity assessment, followed by baseline measures. Participants demonstration decisional capacity completed an interactive disclosure session during which they received dichotomous results of their research positron emission tomography (PET) scans for amyloid and tau (elevated versus not elevated for each biomarker). Findings were discussed in relation to presence/absence of Alzheimer's disease, the etiology of their cognitive difficulties, and risk for conversion or further decline. At baseline, immediately following disclosure, and at 1-week follow-up, participants completed several questionnaires: the Future Time Perspective (FTP) scale, a measure of how much the participant sees time as limited, the Self Efficacy for Managing Chronic Disease scale (SECD), and the Stigma Scale for Chronic Illness (SSCI-8), all of which were modified to apply to Alzheimer's disease and associated experiences.Results:The main effects of time (F=1.10, p=.334, A?p2=.026), biomarker status (F(1)=3.10, p=.086, Ajp2=.070), and the time by biomarker status interaction (F=0.39, p=.661, Ajp2=.009) on FTP score was not significant. Though neither time (F=0.07, p=.933, A?p2=.002) nor the time by biomarker status interaction (F=2.16, p=.122, Ajp2=.050) effect on SECD was significant, being biomarker positive (A+T-/A+T+) was associated with lower self-efficacy (F(1)=5.641, p=.022, Ajp2=.121). Neither main effect for time (F=0.15, p=.853, Ajp2=.004) or biomarker status (F(1)=0.35, p=.558, A?p2=.009) on SSCI-8 was significant. The time by biomarker status interaction was significant (f=4.27, p=.018, =.096), such that biomarker negative participants experience a transient increase in perceived stigma directly after disclosure that resolves one week later, and biomarker negative participants experience the opposite pattern.Conclusions:Findings suggest that individuals who receive biomarker positive results may feel less competent to manage their symptoms compared to those who are biomarker negative, emphasizing the need for post-disclosure interventions targeting self-efficacy. The effect of disclosure on perceptions of time being limited and on perceived stigma were minimal, even when those results indicate evidence of Alzheimer's disease and risk for clinical progression. These results further support the safety of biomarker disclosure procedures. Future studies should provide longer-term assessment of psychological, behavioral, and clinical outcomes following Alzheimer's disease biomarker disclosure.

Restraint in somatic healthcare: how should it be regulated?

Restraint is regularly used in somatic healthcare settings, and countries have chosen different paths to regulate restraint in somatic healthcare. One overarching problem when regulating restraint is to ensure that...

Perspectives From Black and White Participants and Care Partners on Return of Amyloid and Tau PET Imaging and Other Research Results.

Alzheimer disease (AD) biomarker testing is now common in research and approaching clinical translation. Disclosure protocols must be informed by diverse participants' perspectives on if/how the information would be useful. This study utilized semistructured interviews assessing interest in receiving positron emission tomography (PET) amyloid and tau results, as well as perceived risks and benefits of hypothetical PET disclosure as a function of race and participant diagnosis. Participants [39% Black; 61% White; Mage =74.28 (5.98)] included 57 adults diagnosed as either cognitively healthy (58%) or with mild cognitive impairment (42%) and their respective care partners [33% Black; 67% White; Mage =66.93 (10.92)]. Most dyads endorsed strong interest in PET results (82.5% of both participants and partners) regardless of race or diagnosis. Black care partners were less interested in receiving the participant's results than White care partners ( χ2(4) =8.31, P =0.047). Reasons for disclosure were diverse and highly personalized, including access to treatments or clinical trials (23.2% participants; 29.8% partners), advance planning (14.3% participants; 17.5% partners), and improved health knowledge (12.5% participants; 15.8% partners). In contrast, over 80% of respondents denied any risks of disclosure. Results suggest that predisclosure education, decisional capacity assessment, and a flexible disclosure approach are needed.

Ditching decision-making capacity

Decision-making capacity (DMC) plays an important role in clinical practice—determining, on the basis of a patient’s decisional abilities, whether they are entitled to make their own medical decisions or whether...