Daniel C. Marson

The National Alzheimer's Coordinating Center (NACC) database: The uniform data set

The National Alzheimers Coordinating Center (NACC) is responsible for developing and maintaining a database of participant information collected from the 29 Alzheimers Disease Centers (ADCs) funded by the National Institute on Aging (NIA). The NIA appointed the ADC Clinical Task Force to determine and define an expanded, standardized clinical data set, called the Uniform Data Set (UDS). The goal of the UDS is to provide ADC researchers a standard set of assessment procedures, collected longitudinally, to better characterize ADC participants with mild Alzheimer disease and mild cognitive impairment in comparison with nondemented controls. NACC implemented the UDS (September 2005) by developing data collection forms for initial and follow-up visits based on Clinical Task Force definitions, a relational database, and a data submission system accessible by all ADCs. The NIA requires ADCs to submit UDS data to NACC for all their Clinical Core participants. Thus, the NACC web site (https://www.alz.washington.edu) was enhanced to provide efficient and secure access data submission and retrieval systems.

Impaired financial abilities in mild cognitive impairment A direct assessment approach

1. Engelhart MJ, Geerlings MI, Ruitenberg A, et al. Diet and risk of dementia: does fat matter? The Rotterdam Study. Neurology 2002;59: 1915–1921. 2. Grant WB. Dietary links to Alzheimer’s disease. Alzheimer Dis Rev 1997;2:42–55. 3. Chandra V, Pandav R, Dodge HH, et al. Incidence of Alzheimer’s disease in a rural community in India: The Indo-US Study. Neurology 2001;57:985–989. 4. Barberger-Gateau P, Letenneur L, Deschamps V, et al. Fish, meat, and risk of dementia: cohort study. BMJ 2002;325:932–933. 5. Luchsinger JA, Tang MX, Shea S, Mayeux R. Caloric intake and the risk of Alzheimer disease. Arch Neurol 2002;59:1258–1263.

Consistency of Physician Judgments of Capacity to Consent in Mild Alzheimer's Disease

OBJECTIVE: To investigate the agreement of physician judgments of capacity to consent to treatment for normal and demented older adults.

Competency to consent to medical treatment in cognitively impaired patients with Parkinson’s disease

Objectives: To investigate capacity to consent to medical treatment (competency) in cognitively impaired patients with PD. Background: Although competency has been studied empirically in patients with cortical dementia (AD), no empirical studies have examined competency in patients with PD or other subcortical neurodegenerative disorders. Methods: Patients with PD with cognitive impairment (n = 20) and older controls (n = 20) were compared using a standardized competency measure (Capacity to Consent to Treatment Instrument [CCTI]) and neuropsychological test measures. The CCTI tests competency performance and assigns outcomes (capable, marginally capable, incapable) under four different legal standards (LS). Results: Patients with PD performed below controls on the four LS: capacity to evidence a treatment choice (LS1) (p < 0.03), capacity to appreciate consequences of a treatment choice (LS3) (p < 0.03), capacity to provide rational reasons for a treatment choice (LS4) (p < 0.0001), and capacity to understand the treatment situation and choices (LS5) (p < 0.0001). With respect to competency outcomes, patients with PD demonstrated increasing compromise (marginally capable or incapable outcomes) across the four standards: LS1 (25%), LS3 (45%), LS4 (55%), and LS5 (80%). In the PD group, simple measures of executive function (the Executive Interview) and to a lesser extent memory/orientation (Dementia Rating Scale, Memory subscale) were key predictors of competency performance and outcome on the LS. Conclusions: Cognitively impaired patients with PD are likely to have impaired consent capacity, and are at risk of losing competency over the course of their neurodegenerative illness. Patients with PD have parti-cular difficulty meeting more stringent, clinically relevant competency standards that tap reasoning skills and comprehension of treatment information. Executive dysfunction appears to be a primary neurocognitive mechanism for competency loss in PD.

Medical decision-making capacity in patients with mild cognitive impairment

Objectives: To empirically assess the capacity of patients with amnestic mild cognitive impairment (MCI) to consent to medical treatment under different consent standards (Ss). Methods: Participants were 56 healthy controls, 60 patients with MCI, and 31 patients with mild Alzheimer disease (AD). Each participant was administered the Capacity to Consent to Treatment Instrument (CCTI) and a comprehensive neuropsychological battery. Group differences in performance on the CCTI and neuropsychological variables were examined. In addition, the capacity status (capable, marginally capable, or incapable) of each MCI participant on each CCTI standard was examined using cut scores derived from control performance. Results: Patients with MCI performed comparably to controls on minimal consent standards requiring merely expressing a treatment choice (S1) or making the reasonable treatment choice [S2], but significantly below controls on the three clinically relevant standards of appreciation (S3), reasoning (S4), and understanding (S5). In turn, the MCI group performed significantly better than the mild AD group on [S2], S4, and S5. Regarding capacity status, patients with MCI showed a progressive pattern of capacity compromise (marginally capable and incapable outcomes) related to stringency of consent standard. Conclusions: Patients with amnestic mild cognitive impairment (MCI) demonstrate significant impairments on clinically relevant abilities associated with capacity to consent to treatment. In obtaining informed consent, clinicians and researchers working with patients with MCI must consider the likelihood that many of these patients may have impairments in consent capacity related to their amnestic disorder and related cognitive impairments. GLOSSARY: AD = Alzheimer disease; ADRC = Alzheimers Disease Research Center; CCTI = Capacity to Consent to Treatment Instrument; CVLT-II = California Verbal Learning Test, second edition; DRS-2 = Dementia Rating Scale, 2nd edition; GDS = Geriatric Depression Scale; MCI = mild cognitive impairment; MDC = medical decision-making capacity; MMSE = Mini-Mental State Examination; Ss = consent standards; WAIS-III = Wechsler Adult Intelligence Scale, third edition; WMS-III = Wechsler Memory Scale, third edition; WMS-R = Wechsler Memory Scale, revised edition; WRAT-3 = Wide Range Achievement Test, third edition.

Consistency of physicians' legal standard and personal judgments of competency in patients with Alzheimer's disease

OBJECTIVES: To investigate the consistency of physician judgments of treatment consent capacity (competency) for patients with Alzheimers disease (AD) when specific legal standards (LS) for competency are used, and to identify the LS most clinically relevant to experienced physicians.

Cognitive Correlates of Financial Abilities in Mild Cognitive Impairment

OBJECTIVES: To investigate the cognitive correlates of financial abilities in mild cognitive impairment (MCI).

Declining financial capacity in mild cognitive impairment A 1-year longitudinal study

Objective: To investigate 1-year change in financial capacity in relation to conversion from amnestic mild cognitive impairment (MCI) to dementia. Methods: Seventy-six cognitively healthy older controls, 25 patients with amnestic MCI who converted to Alzheimer-type dementia during the study period (MCI converters), and 62 patients with MCI who did not convert to dementia (MCI nonconverters) were administered the Financial Capacity Instrument (FCI) at baseline and 1-year follow-up. Performance on the FCI domain and global scores was compared within and between groups using multivariate repeated-measures analyses. Results: At baseline, controls performed better than MCI converters and nonconverters on almost all FCI domains and on both FCI total scores. MCI converters performed below nonconverters on domains of financial concepts, cash transactions, bank statement management, and bill payment and on both FCI total scores. At 1-year follow-up, MCI converters showed significantly greater decline than controls and MCI nonconverters for the domain of checkbook management and for both FCI total scores. The domain of bank statement management showed a strong trend. For both the checkbook and bank statement domains, MCI converters showed declines in procedural skills, such as calculating the correct balance in a checkbook register, but not in conceptual understanding of a checkbook or a bank statement. Conclusions: Declining financial skills are detectable in patients with mild cognitive impairment (MCI) in the year before their conversion to Alzheimer disease. Clinicians should proactively monitor patients with MCI for declining financial skills and advise patients and families about appropriate interventions.

Amnestic mild cognitive impairment: diagnostic outcomes and clinical prediction over a two-year time period.

Amnestic mild cognitive impairment (MCI) has been defined as a precursor to Alzheimers disease (AD), although it is sometimes difficult to identify which persons with MCI will eventually convert to AD. We sought to predict MCI conversion to AD over a two-year follow-up period using baseline demographic and neuropsychological test data from 49 MCI patients. Using a stepwise discriminant function analysis with Dementia Rating Scale (DRS) Initiation/Perseveration and Wechsler Memory Scale, third edition (WMS-III) Visual Reproduction Percent Retention scores, we correctly classified 85.7% of the sample as either AD converters or MCI nonconverters, with 76.9% sensitivity and 88.9% specificity. Adding race, the presence of vascular risk factors, or cholinesterase inhibitor use to the analysis did not greatly change the classification rates obtained with neuropsychological test data. Examining neuropsychological test cutoff scores revealed that DRS Initiation/Perseveration scores below 37 and Visual Reproduction Percent Retention scores below 26% correctly identified AD converters with 76.9% sensitivity and 91.7% specificity. These results demonstrate that commonly administered neuropsychological tests identify persons with MCI at baseline who are at risk for conversion to AD within 1-2 years. Such methods could aid in identifying MCI patients who might benefit from early treatment, in providing prognostic information to patients, and identifying potential clinical trial participants.

Determining the competency of Alzheimer patients to consent to treatment and research

Loss of competency is an inevitable consequence of Alzheimer disease (AD) and other progressive dementias. Of particular importance to clinicians and researchers studying dementia is determining whether a patient has the capacity to provide informed consent to treatment and medical research. No widely accepted standardized instruments exist for competency assessment, nor has competency assessment training been available to physicians. As a result, physician competency assessment has been a subjective and even idiosyncratic process. Recent studies have suggested that physicians have difficulty assessing capacity to consent in older adults and frequently disagree in their competency judgments. Accordingly, one important goal for advancing ethical and legal research in AD will involve the development of standardized approaches to determining patient capacity to give consent. This article reports the findings of recent empirical studies of competency determination in AD, focusing on work in the areas of physician competency assessment, development of standardized assessment instruments, and neuropsychological modeling of competency loss. Future directions for research in these three areas are identified.