Expectations and experiences with physician care among patients receiving post-acute care in US skilled nursing facilities.

BACKGROUND: In the US, post-acute care in skilled nursing facilities (SNFs) is common and outcomes vary greatly across facilities. Little is known about the expectations of patients and their caregivers about physician care during the hospital to SNF transition. Our objectives were to (1) describe the experiences and expectations of patients and their caregivers with SNF physicians in SNFs, and (2) identify patterns that differed between patients with vs. without cognitive impairment. METHODS: This qualitative study used grounded theory approach to analyze data collected from semi-structured interviews at five SNFs in January-August 2018. Patients admitted for short-term SNF care 5-10 days prior were eligible to participate. Thematic analysis was performed to detect recurrent themes with a focus on modifiable aspects of physician care. Analysis was stratified by patient cognitive impairment (measured by the Montreal Cognitive Assessment at the time of the interview). RESULTS: Fifty patients and six caregivers were interviewed. Major themes were: (1) patients had poor awareness of the physician in charge of their care; (2) they were dissatisfied with the frequency of interaction with the physician; and (3) participants valued the perception of receiving individualized care from the physician. Less cognitively impaired patients were more concerned about limited interactions with the physicians and were more likely to report attempts to seek out the physician. CONCLUSION: Patient and caregiver expectations of SNF physicians were not well aligned with their experiences. SNFs aiming to improve satisfaction with care may focus efforts in this area, such as facilitating frequent communication between physicians, patients and caregivers.

A pragmatist's guide to the assessment of decision-making capacity.

Choice, understanding, appreciation and reasoning compose the standard model of decision-making capacity. Difficulties in determining capacity can arise when patients exhibit partial impairment. We suggest that a pragmatic approach, focusing on how capacity status affects the ultimate decision to override the patient's wishes, can help evaluators resolve difficult cases.Declaration of interestNone.

Neuropsychological correlates of capacity determinations in Alzheimer disease: implications for assessment.

OBJECTIVES: To explore the neuropsychological correlates of the capacity to consent to research and to appoint a research proxy among persons with Alzheimer disease. DESIGN, SETTING, AND PARTICIPANTS: Interview study of 77 persons with Alzheimer disease recruited through an Alzheimer disease research center and a memory disorder clinic. MEASUREMENTS: The capacity to consent to two research scenarios (a drug randomized clinical trial and a neurosurgical clinical trial) and the capacity to appoint a research proxy were determined by five experienced consultation psychiatrists who rendered categorical judgments based on videotaped interviews of the MacArthur Competence Assessment Tool-Clinical Research and the Capacity to Appoint a Proxy Assessment. Mattis Dementia Rating Scale-Second Edition was used to assess neuropsychological functioning. RESULTS: The capacity to appoint a proxy and to consent to the drug randomized clinical trial, as determined by a majority or greater opinion of the five-psychiatrist panel, was predicted by Conceptualization and Initiation/Perseveration subscales, whereas the capacity to consent to a neurosurgical randomized clinical trial was predicted by the Memory subscale. Furthermore, the more lenient individual psychiatrists' judgments were predicted by the Conceptualization subscale, whereas the stricter psychiatrists' judgments were predicted by the Memory subscale. CONCLUSIONS: How experienced psychiatrists view the capacity of patients with Alzheimer disease for consenting to research and for appointing a proxy may be related to the patients' conceptualization and memory functioning. More explicit and standardized guidance on the role of short-term memory in capacity determinations may be useful.

Structured assessment of mental capacity to make financial decisions in Chinese older persons with mild cognitive impairment and mild Alzheimer disease.

Previous studies suggested that patients with mild cognitive impairment (MCI) or dementia can have impaired and declining financial skills and abilities. The purpose of this study is to test a clinically applicable method, based on the contemporary legal standard, to examine directly the mental capacity to make financial decisions and its component decision-making abilities among patients with MCI and early dementia. A total of 90 patients with mild Alzheimer disease (AD), 92 participants with MCI, and 93 cognitively normal control participants were recruited for this study. Their mental capacity to make everyday financial decisions was assessed by clinician ratings and the Chinese version of the Assessment of Capacity for Everyday Decision-Making (ACED). Based on the clinician ratings, only 53.5% were found to be mentally competent in the AD group, compared with 94.6% in the MCI group. However, participants with MCI had mild but significant impairment in understanding, appreciating, and reasoning abilities as measured by the ACED. The ACED provided a reliable and clinically applicable structured framework for assessment of mental capacity to make financial decisions.

Appropriate use criteria for amyloid PET: a report of the Amyloid Imaging Task Force, the Society of Nuclear Medicine and Molecular Imaging, and the Alzheimer's Association.

Positron emission tomography (PET) of brain amyloid b is a technology that is becoming more available, but its clinical utility in medical practice requires careful definition. To provide guidance to dementia care practitioners, patients, and caregivers, the Alzheimer's Association and the Society of Nuclear Medicine and Molecular Imaging convened the Amyloid Imaging Taskforce (AIT). The AIT considered a broad range of specific clinical scenarios in which amyloid PET could potentially be used appropriately. Peer-reviewed, published literature was searched to ascertain available evidence relevant to these scenarios, and the AIT developed a consensus of expert opinion. Although empirical evidence of impact on clinical outcomes is not yet available, a set of specific appropriate use criteria (AUC) were agreed on that define the types of patients and clinical circumstances in which amyloid PET could be used. Both appropriate and inappropriate uses were considered and formulated,and are reported and discussed here. Because both dementia care and amyloid PET technology are in active development, these AUC will require periodic reassessment. Future research directions are also outlined, including diagnostic utility and patient-centered outcomes.

Update on appropriate use criteria for amyloid PET imaging: dementia experts, mild cognitive impairment, and education. Amyloid Imaging Task Force of the Alzheimer's Association and Society for Nuclear Medicine and Molecular Imaging.

Amyloid PET imaging is a novel diagnostic test that can detect in living humans one of the two defining pathologic lesions of Alzheimer disease, amyloid-ß deposition in the brain. The Amyloid Imaging Task Force of the Alzheimer's Association and Society for Nuclear Medicine and Molecular Imaging previously published appropriate use criteria for amyloid PET as an important tool for increasing the certainty of a diagnosis of Alzheimer disease in specific patient populations. Here, the task force further clarifies and expands 3 topics discussed in the original paper: first, defining dementia experts and their use of proper documentation to demonstrate the medical necessity of an amyloid PET scan; second, identifying a specific subset of individuals with mild cognitive impairment for whom an amyloid PET scan is appropriate; and finally, developing educational programs to increase awareness of the amyloid PET appropriate use criteria and providing instructions on how this test should be used in the clinical decision-making process.

Capacity to make decisions on medication management in Chinese older persons with mild cognitive impairment and mild Alzheimer's disease.

BACKGROUND: This study aimed to assess if decisional capacity and the four decision-making abilities related to decisions concerning medication management were impaired among community-dwelling Chinese older persons in Hong Kong with amnestic mild cognitive impairment (MCI) and mild Alzheimer's disease (AD), as compared with cognitively normal older adults. METHODS: Two hundred and ninety-one Chinese community-dwelling older adults were recruited. The four decision-making abilities and decisional capacity were assessed by using the Chinese version of the Assessment of Capacity for Everyday Decision-Making (ACED) and independent clinician ratings based on the definition in the UK Mental Capacity Act 2005, respectively. RESULTS: Ninety-nine participants (34%) were diagnosed with MCI and ninety-five (33%) with mild AD. Although almost all (96%) of the participants in the MCI group were found to be mentally competent to make decisions on medication management in clinician ratings, their decision-making abilities as measured by the ACED were significantly lower than those of the cognitively normal controls. CONCLUSIONS: Results from this study suggest that abilities related to decisions on medication management are impaired before the clinical diagnosis of dementia is made. Use of specific and structured assessment of the relevant decisional abilities may enhance clinical judgment.

A model for improving the treatment and care of Alzheimer's disease patients through interdisciplinary research.

The emerging global epidemic of Alzheimer's disease (AD) demands novel paradigms to address the two unmet needs of the field: (a) cost-effective health care delivery programs/services, and (b) clinical and basic research to accelerate therapy discovery/development. This report outlines a model demonstration project, the Marian S. Ware Alzheimer Program at the University of Pennsylvania, which was designed to achieve four specific aims: (1) improve the integration and continuity of AD care; (2) identify biomarkers that detect the earliest presence of AD and related neurodegenerative cognitive disorders; (3) enhance both the design and conduct of clinical trials as well as review their results to more effectively test new AD therapies and translate valuable therapies into clinical practice; and (4) discover and develop novel disease-modifying small molecule treatments for AD. The "Ware-UPenn" program has been presented in this report as a useful prototype for partnerships between private philanthropy and academia in planning and developing programs to address a major national public health problem.

Advancing Alzheimer's disease diagnosis, treatment, and care: recommendations from the Ware Invitational Summit.

To address the pending public health crisis due to Alzheimer's disease (AD) and related neurodegenerative disorders, the Marian S. Ware Alzheimer Program at the University of Pennsylvania held a meeting entitled "State of the Science Conference on the Advancement of Alzheimer's Diagnosis, Treatment and Care," on June 21-22, 2012. The meeting comprised four workgroups focusing on Biomarkers; Clinical Care and Health Services Research; Drug Development; and Health Economics, Policy, and Ethics. The workgroups shared, discussed, and compiled an integrated set of priorities, recommendations, and action plans, which are presented in this article.

Ethnoracial differences in the clinical characteristics of Alzheimer's disease at initial presentation at an urban Alzheimer's disease center.

OBJECTIVE: To compare presentation of Alzheimer disease (AD) at the time of initial evaluation at a university specialty clinic across three ethnoracial groups in order to understand similarities and differences in the demographic, clinical, cognitive, psychiatric, and biologic features. DESIGN: Cross-sectional study. PARTICIPANTS: A total of 1,341 self-identified African American, Latino (primarily of Caribbean origin), and white non-Hispanic ("WNH") subjects were recruited from primary care sites or by referral by primary care physicians. MEASUREMENTS: Demographic variables and age of onset of AD, as well as cognitive, functional, and mood impairments at the time of initial presentation and frequencies of apolipoprotein E genotypes, were compared across groups. RESULTS: Differences among ethnoracial groups were found for nearly all variables of interest. In particular, the largely immigrant Puerto Rican Latino group had an earlier age of onset of AD, more cognitive impairment, and greater severity of cognitive impairment at the time of initial evaluation in the setting of low average education and socioeconomic status. There was more depression in the Latinos compared with African Americans and WNHs. Greater severity of symptoms was not accounted for by a difference in lag time between onset of symptoms and initial evaluation. The apolipoprotein E-4 genotype was not associated with AD in the Latino cohort. CONCLUSIONS: Minority groups in Philadelphia, especially Latinos, exhibit a more severe profile of AD at the time of presentation than WNHs. Important potential confounds need to be considered and future research comparing immigrant and nonimmigrant Latino groups will be necessary to elucidate the highly significant differences reported.

Variability of judgments of capacity: experience of capacity evaluators in a study of research consent capacity.

BACKGROUND: Assessment of decision-making capacity is a common and important function of psychiatric consultants. However, the sources of variability in evaluators' judgments have not been well characterized. OBJECTIVE: To examine the degree and potential sources of variability in the categorical capacity judgments of experienced psychiatrists. METHOD: The setting was a study comparing the decision-making capacities of 188 persons with Alzheimer's disease to appoint a research proxy and to consent to two hypothetical randomized controlled trials for dementia (a new drug RCT and a neurosurgical RCT). We compared five experienced consultation psychiatrists' capacity judgments for 555 videotaped capacity interviews. Both quantitative and qualitative data were used. RESULTS: Pair wise kappa statistics ranged from slight agreement (0.17) to substantial agreement (0.64) with group kappa statistics ranging from fair to moderate agreement (0.40 to 0.45) for the psychiatrists' judgments regarding the three capacities. The sources of variability included varying "strictness" among judges, moderate test-retest reliability within judges, the relative novelty of assessing decision-making capacity for research participation decisions, as well as the limitations of the methods used to obtain capacity judgments in the study. DISCUSSION: There is considerable variability in capacity judgments of experienced consultation psychiatrists regarding the capacities to appoint a research proxy and to consent to research. The potential sources of variability identified in this study may provide starting points for more effective training in capacity assessment.

Countrywide strategic plans on Alzheimer's disease: developing the framework for the international battle against Alzheimer's disease.

As the world's population ages, countries must prepare for the significant impact Alzheimer's disease will have on their health systems, their economies, and their citizens. In anticipation of major global demographic changes, many countries in the G-20 since 2000 have begun to develop and enact plans to address Alzheimer's disease as a national priority. However, even with nearly half of these participating countries having plans in place, there has been little research done to quantify the value of enacting a countrywide plan on this disease. In this review, we summarize recent national plans (from the year 2000 and beyond) and any results stemming from their respective recommendations and activities.

Seeking assent and respecting dissent in dementia research.

OBJECTIVES: Obtaining assent and respecting dissent are widely adopted safeguards when conducting dementia research involving individuals who lack consent capacity, but there is no consensus on how assent and dissent should be defined or what procedures should be used regarding them. Our objective was to provide recommendations on these issues based on the opinions of knowledgeable key informants. DESIGN: Cross-sectional qualitative research. SETTING: University research institutions. PARTICIPANTS: Forty informants, including 1) nationally known experts on dementia and research ethics, 2) dementia researchers, and 3) dementia caregivers and advocates. MEASUREMENTS: Semistructured individual and focus group interviews, audio recorded, and transcribed for content analysis. RESULTS: Assent and dissent should be defined broadly and based on an assessment of how adults who lack consent capacity can express or indicate their preferences verbally, behaviorally, or emotionally. Assent requires the ability to indicate a meaningful choice and at least a minimal level of understanding. Assent should be required whenever an individual has the ability to assent, and dissent should be binding if it is unequivocal or sustained after an effort to relieve concerns and/or distress. Standards for seeking assent and respecting dissent should not be linked to the risks or potential benefits of a study. Lacking the ability to assent and/or dissent should not automatically preclude research participation. CONCLUSIONS: Obtaining assent and respecting dissent from individuals who lack consent capacity for dementia research allows them to participate, to the extent possible, in the consent process. Assent and dissent are important independent ethical constructs.

Design of comprehensive Alzheimer's disease centers to address unmet national needs.

The problem of Alzheimer's disease (AD) exemplifies the challenges of dealing with a broad range of aging-related chronic disorders that require long-term, labor-intensive, and expensive care. As the baby boom generation ages and brain diseases become more prevalent, the need to confront the pending health care crisis is more urgent than ever before. Indeed, there is now a critical need to expand significantly the national effort to solve the problem of AD, with special focus on prevention. The Campaign to Prevent Alzheimer's Disease by 2020 (PAD2020) aims to create a new paradigm for planning and supporting the organization of worldwide cooperative research networks to develop new technologies for early detection and treatments of aging-related memory and motor impairments. PAD 2020 is developing an implementation plan to justify (1) increasing the federal budget for research, (2) developing novel national resources to discover new interventions for memory and motor disorders, and (3) creating innovative and streamlined decision-making processes for selecting and supporting new ideas. Since 1978 the National Institute on Aging or National Institute of Health (NIH) established an extensive national network of AD research facilities at academic institutions including AD Centers (ADCs), Consortium to Establish a Registry for AD, AD Cooperative Study (ADCS), AD Drug Discovery Program, National Alzheimer's Coordinating Center, National Cell Repository for AD, and AD Neuroimaging Initiative. However, despite the success of these programs and their critical contributions, they are no longer adequate to meet the challenges presented by AD. PAD 2020 is designed to address these changes by improving the efficiency and effectiveness of these programs. For example, the ADCs (P30s and P50s) can be enhanced by converting some into Comprehensive Alzheimer's Disease Centers (CADCs) to support not only research, but also by being demonstration projects on care/treatment, clinical trials, and education as well as by seamlessly integrating multisite collaborative studies (ADCS, AD Neuroimaging Initiative, Patient Registries, Clinical Data Banks, etc) into a cohesive structure that further enhances the original mission of the National Institute on Aging ADCs. Regional CADCs offer greater efficiency and cost savings while serving as coordinating hubs of existing ADCs, thereby offering greater economies of scale and programmatic integration. The CADCs also broaden the scope of ADC activities to include research on interventions, diagnosis, imaging, prevention trials, and other longitudinal studies that require long-term support. Thus, CADCs can address the urgent need to identify subjects at high risk of AD for prevention trials and very early in the course of AD for clinical trials of disease modification. The enhanced CADCs will allow more flexibility among ADCs by supporting collaborative linkages with other institutions and drawing on a wider expertise from different locations. This perspective article describes the University of Pennsylvania (Penn) CADC Model as an illustrative example of how an existing ADC can be converted into a CADC by better utilization of Penn academic resources to address the wide range of problems concerning AD. The intent of this position paper is to stimulate thinking and foster the development of other or alternative models for a systematic approach to the study of dementia and movement disorders.

Rate of decline in Alzheimer disease measured by a Dementia Severity Rating Scale.

OBJECTIVE: To measure clinically relevant change in Alzheimer disease (AD) using a family member-completed Dementia Severity Rating Scale (DSRS) questionnaire. BACKGROUND: Measuring rate of change provides important clinical information. Most neuropsychologic scores change nonlinearly, complicating their use as a predictor of change throughout the illness. METHODS: DSRS and Mini Mental State scores were prospectively collected on 702 patients with AD from first evaluation until they became too impaired to return to clinic. RESULTS: DSRS score increased an average of 4.48 points/y [95% confidence interval (CI): 4.14-4.82] throughout the entire range of severity. In contrast, the Mini Mental State declined an average of 2.15 points/y (95% CI: 1.85-2.46) during the first 2 years, accelerated to 3.83 points/y (95% CI: 3.28-4.38) during the subsequent 3 years, and then slowed to an annual decline of 1.63 points during the last 2 years (95% CI: 0.21-3.05). A younger age of symptom onset was associated with an increased rate of DSRS change (P=0.03). CONCLUSIONS: The DSRS provides a clinical measure of functional impairment in AD that increases about 4.48 points/y from the earliest symptomatic stage until patients become too severely impaired to return to clinic.

Self-reported distress after cognitive testing in patients with Alzheimer's disease.

BACKGROUND: The prevalence and degree of self-reported distress that patients with Alzheimer's disease (AD) experience after cognitive testing remain unknown. It is also unknown whether this level of distress is at all related to specific patient factors, test performance, or awareness of test performance. METHODS: In 154 mild-to-moderate AD patients and 62 cognitively intact patients, we measured self-reported distress, on a five-point Likert scale, after 45 minutes of cognitive testing. Using multivariate logistic regression, we then examined whether demographic factors, level of education, depressive symptoms, cognitive performance, perceived test difficulty, and perceived test performance compared to 10 years ago were predictive of self-reported distress. RESULTS: The prevalence of any self-reported distress in patients with AD was 70% compared to 47% in patients without AD (p <.001). Of persons with AD, bivariate analyses revealed that those who reported more difficulty with testing (relative risk [RR] 1.32; 95% confidence interval [CI], 1.25-1.37) and felt that they performed worse than 10 years ago (RR 1.21; 95% CI, 1.07-1.30) were at increased risk for reporting more distress. Paradoxically, cognitive performance was a weak predictor of distress, with only language performance demonstrating an association (RR 0.95; 95% CI, 0.89-0.99). Adjustments for demographic factors, education, dementia severity, or depressive symptoms in the multivariable analyses did not alter these relationships. CONCLUSION: Cognitive tasks provoke more distress in patients with mild-to-moderate AD compared with persons who do not have dementia. Predictors of distress are more closely related to patient awareness about test difficulty and performance, rather than actual test performance.

Characterization of activities of daily living in individuals with mild cognitive impairment.

OBJECTIVE: To determine whether participants with mild cognitive impairment (MCI) differ from cognitively normal (NC) older adults on traditional and novel informant-based measures of activities of daily living (ADL) and to identify cognitive correlates of ADLs among participants with MCI. DESIGN: Cross-sectional. SETTING: University medical setting. PARTICIPANTS: Seventy-seven participants (NC: N = 39; MCI: N = 38), 60 to 90 years old (73.5 +/- 6.6 years; 53% female). MEASUREMENTS: Neuropsychological and ADL measures. METHODS: Neuropsychological tests were administered to NC and MCI participants. Informants completed the Lawton and Brody Instrumental Activities of Daily Living and Physical Self-Maintenance Scale, including instrumental (IADL) and basic ADL (BADL) scales, as well as the Functional Capacities for Activities of Daily Living (FC-ADL), an error-based ADL measure. RESULTS: No statistically or clinically significant between-group differences emerged for the BADL or IADL subscales. However, a robust difference was noted for the FC-ADL scale (MCI errors > NC errors; F((1,75))= 13.6, p <0.001; d = 0.84). Among MCI participants, correlations revealed that a measure of verbal learning was the only neuropsychological correlate of FC-ADL total score (r = -0.39, df = 36, p = 0.007). No neuropsychological measures were significantly associated with the IADL or BADL subscale score. CONCLUSION: Traditional measures assessing global ADLs may not be sensitive to early functional changes related to MCI; however, error-based measures may capture the subtle evolving functional decline associated with MCI. Among MCI participants, early functional difficulties are associated with verbal learning performance, possibly secondary to the hallmark cognitive impairment associated with this cohort.

Everyday decision-making ability in older persons with cognitive impairment.

OBJECTIVE: To demonstrate the reliability and validity of the Assessment of Capacity for Everyday Decision-Making (ACED), an instrument to evaluate everyday decision-making. METHODS: The authors administered the ACED to 39 persons with very mild to moderate cognitive impairment and 13 cognitively intact caregivers. RESULTS: Intraclass correlation coefficients showed good reliability for the measures of understanding, appreciation and reasoning, and Cronbach's alpha coefficients were > or =0.84 for all three decision-making abilities. The ACED also had a moderate to strong correlation with the MacArthur Competency Assessment Tool for Treatment, a validated measure of decision-making capacity for medical treatment decisions, and measures of overall cognition. Associations with measures of executive function were mixed, with moderate correlations observed only with ACED understanding and reasoning performance. CONCLUSION: The ACED is a reliable and valid measure to assess decision-making capacity. It may serve as an important addition to current methods used to assess everyday decision-making.