Psychometric Properties of a Decisional Capacity Screening Tool for Individuals Contemplating Participation in Alzheimer's Disease Research.

BACKGROUND: With the growing population of individuals affected by Alzheimer's disease (AD) and related disorders, there is a pressing demand for research on late-life cognitive disorders. However, this population's high risk for decisional incapacity necessitates evaluation of capacity to consent to research participation, adding cost and complexity to the research process. The University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) was initially validated in a sample of persons with schizophrenia and healthy controls. OBJECTIVE: To assess the psychometric properties of the UBACC when used in a sample of individuals contemplating participation in AD research. METHODS: The UBACC was administered to a convenience sample (n = 132) consisting of individuals with mild to moderate cognitive impairment (n = 52), their study partners (n = 52), and healthy older adults control subjects (n = 30), as part of a broader study to evaluate perceived burden of research participation. Reliability tests, correlational analyses, and exploratory factor analytic methods were used to examine the psychometric properties of the instrument. RESULTS: UBACC scores were significantly associated with both global cognition (rs= 0.564, p <  0.001) and verbal fluency (rs = 0.511, p <  0.001), indicating concurrent validity with related constructs. The resulting factor structure differed from that reported by the developers in their initial testing. Items clustered almost entirely on one factor; items reflecting the construct of understanding accounted for 32.12% of total variance, with no evidence for distinct reasoning or appreciation scales. CONCLUSION: The UBACC shows promise when used to screen for decisional capacity among those considering participation in AD research.

Attribution of mild cognitive impairment etiology in patients and their care partners.

OBJECTIVE: This study examined the attribution of mild cognitive impairment (MCI) etiology assigned by individuals with MCI and their care partners, and the extent to which the dyads agreed on the attribution of MCI etiology. METHODS: We conducted secondary analyses of cross-sectional data from a cohort of individuals with MCI (n = 60) and their care partners (n = 60). The mean age of the individuals with MCI was 71.0 ± 9.4 years and of care partners 64.2 ± 11.0 years. The primary outcome was attribution assigned to memory deficits on the Illness Perception Questionnaire. We categorized the attribution of MCI etiology as either potentially controllable or uncontrollable factors. We described the distribution of MCI etiology with descriptive and contingency tables. We determined the odds of a patient or care partner choosing one type of MCI etiology over another. RESULTS: Although individuals with MCI and their care partners most frequently attributed MCI to uncontrollable factors (81.7% and 61.0%, respectively), care partners were 28.41 (95% CI, 1.26 to 645.48) times more likely to attribute MCI etiology to potentially controllable factors than individuals with MCI. No significant associations between demographic factors and attribution of MCI etiology were found for the individuals with MCI or the care partners. CONCLUSION: Findings demonstrated that members of the dyad attributed MCI etiology to different causes. Attributions of MCI etiology should be explored by professionals to clarify misconceptions and potentially improve subsequent voluntary actions intended to assist oneself or others.

Temporal stability of receptiveness to clinical research on Alzheimer disease.

Research advance directives are a proposed mechanism for ensuring that decisions with regard to research participation adhere to preferences voiced by persons with Alzheimer disease (AD) before losing decisional capacity. Although this approach rests on the assumption that preferences with regard to research participation are consistent over time, little is known about the stability of such preferences. The purpose of this study was to evaluate the temporal stability of older adults' receptiveness to participation in clinical trials, neuroimaging studies, and psychosocial investigations on AD. One hundred and four participants in the University of Pittsburgh Alzheimer Disease Research Center were annually surveyed with regard to their willingness to be contacted with regard to clinical drug trials, neuroimaging studies, and psychosocial research for which they might be eligible. Receptiveness to contact with regard to AD research was compared at 2 time points, 1 year apart. At baseline, most respondents were willing to be contacted with regard to their eligibility for drug trials, imaging studies, and psychosocial research. Thirty-seven percent of respondents voiced a different set of preferences at year 2 as compared with year 1. Differences included both increased and decreased willingness to be contacted. Neither stability of preferences nor direction of change (more vs. less willing) varied by diagnostic group. Bivariate analyses revealed that participation in at least 1 ancillary research study was associated with an overall increase in willingness to be contacted. We conclude that a significant proportion of research-friendly individuals voice different sets of preferences with regard to the possibility of research participation when queried at different points in time. Amenability to participating in clinical research on AD is a relatively dynamic personal attribute that may be influenced by personal experience with research participation. This finding has relevance for the policy debate around research advance directives, an approach which assumes that preferences with regard to research participation are consistent over time.

Spouses' cardiovascular reactivity to their partners' suffering.

A laboratory study of older adults with osteoarthritis and their spouses was conducted to examine the unique influence of exposure to suffering on caregivers' risk for impaired psychological and physical health. Spouses' blood pressure (BP) and heart rate (HR) were monitored during 2 tasks designed to capture their partners' suffering. First, spouses watched their partners (and a stranger) carry heavy logs across an 8-ft space for 3 min, a task that elicited pain expression. Second, spouses spoke about their partners' suffering (and also about a typical meal with their partners). Results showed that spouses' BP and HR increased when watching and talking about their partners' suffering, and exposure to a partner's suffering was more physiologically stressful than to a stranger's suffering. These findings suggest that heightened physiological stress caused by exposure to a loved one's suffering may be one pathway to caregivers' increased risk for cardiovascular disease.

Informed consent to research in long-term care settings.

Informed consent to nursing home research is a two-tiered process that begins with obtaining the consent of a long-term care community at the institutional level and progresses to the engagement of individuals in the consent process. Drawing on a review of the literature and the authors' research experiences and institutional review board service, this article describes the practical implications of nurse investigators' obligation to ensure informed consent among participants in long-term care research. Recommendations focus on applying a community consent model to long-term care research, promoting an evidence-based approach to the protection of residents with decisional impairment, and increasing investigators' attention to ethical issues involving long-term care staff.

Conceptual challenges in the study of caregiver-care recipient relationships.

BACKGROUND: In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. OBJECTIVES: To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. APPROACH: Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one another's deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. CONCLUSIONS: These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Frequency and correlates of advance planning among cognitively impaired older adults.

OBJECTIVE: To examine the prevalence and sociodemographic correlates of written advance planning among patients with or at risk for dementia-imposed decisional incapacity. DESIGN: Retrospective, cross-sectional. SETTING: University-based memory disorders clinic. PARTICIPANTS: Persons with a consensus-based diagnosis of mild cognitive impairment (N = 112), probable or possible Alzheimer disease (AD; N = 549), and nondemented comparison subjects (N = 84). INTERVENTION: N/A. MEASUREMENTS: Semistructured interviews to assess durable power of attorney (DPOA) and living will (LW) status upon initial presentation for a dementia evaluation. RESULTS: Sixty-five percent of participants had a DPOA and 56% had a LW. Planning rates did not vary by diagnosis. European Americans (adjusted odds ratio = 4.75; 95% CI, 2.40-9.38), older adults (adjusted odds ratio = 1.05; 95% CI, 1.03-1.07) and college graduates (adjusted odds ratio = 2.06; 95% CI, 1.33-3.20) were most likely to have a DPOA. Findings were similar for LW rates. CONCLUSIONS: Although a majority of persons with and at risk for the sustained and progressive decisional incapacity of AD are formally planning for the future, a substantial minority are not.

Marital quality in the context of mild cognitive impairment.

Profound behavioral changes in persons with dementia often negatively affect the quality of marital relationships. Yet, little is known about the extent to which the marital relationship may be affected when the care recipient has milder degrees of cognitive impairment. This study characterizes marital quality among 27 adults who live with a spouse with mild cognitive impairment (MCI). This study demonstrates that at mild levels of cognitive impairment, specific behaviors in the affected person are distressing and may degrade the quality of the marital relationship. These results have implications for clinical practice and the delivery of health care and social services to these families. It is important to develop interventions to address the needs of these individuals and their caregivers. Results of this study suggest the need for mental health interventions designed to preserve the quality of these marital relationships.

Making sense of mild cognitive impairment: a qualitative exploration of the patient's experience.

PURPOSE: The proposed dementia precursor state of mild cognitive impairment is emerging as a primary target of aging research. Yet, little is known about the subjective experience of living with a diagnosis of mild cognitive impairment. This study examines, from the patient's perspective, the experience of living with and making sense of the diagnosis. DESIGN AND METHODS: We recruited 12 older adults with amnestic or nonamnestic mild cognitive impairment from a university-based memory disorders clinic. We conducted in-home, semistructured interviews in order to elicit rich descriptions of the personal experience of having mild cognitive impairment. We used the qualitative method of grounded theory to analyze narrative data. RESULTS: Understanding and coming to terms with the syndrome, or assigning meaning, constituted a fundamental aspect of living with a diagnosis of mild cognitive impairment. This process comprised interrelated emotional and cognitive dimensions. Participants employed a range of positive, neutral, and negative phrasing in order to depict their emotional reactions to receiving a diagnosis. Cognitive representations of mild cognitive impairment included both prognosis-focused and face-value appraisals. Expectations of normal aging, personal experience with dementia, and concurrent health problems were key contextual factors that provided the backdrop against which participants assigned meaning to a diagnosis of mild cognitive impairment. IMPLICATIONS: Clinicians who disclose diagnoses of mild cognitive impairment need to be mindful of the potential for varying interpretations of the information that is conveyed. Future research needs to include systematic, longitudinal investigations of illness representation and its impact on health behaviors among individuals with mild cognitive impairment.

Caregiver-specific outcomes in antidementia clinical drug trials: a systematic review and meta-analysis.

OBJECTIVES: To describe the range of caregiver-specific outcomes and approaches to their study within antidementia drug trials and to quantify the effect of cholinesterase inhibitors on burden and active time use of caregivers of persons with Alzheimer's disease (AD). DESIGN: Systematic review of English-language publications and unpublished reports of antidementia clinical drug trials that included caregiver-specific outcomes. Study characteristics and methodological quality were summarized. Random effects meta-analyses were conducted for the outcomes of caregiver burden and active time use. SETTING: Community. PARTICIPANTS: Informal caregivers of participants in clinical trials of antidementia drugs. MEASUREMENTS: Burden, time use, psychological well-being, healthcare costs, and ease of use of or satisfaction with intervention. RESULTS: Seventeen studies involving 4,744 subjects were identified. Four trials (n=1,594) met criteria for inclusion in the burden analysis, and six trials (n=2,286) met criteria for inclusion in the time-use analysis. Most investigations involved drugs now approved by the Food and Drug Administration for the treatment of AD; donepezil was the most frequently studied intervention in the set of studies. Methodological quality varied across trials. The weighted average effect sizes were Cohen's d=0.18 (95% confidence interval (CI)=0.04-0.32) and d=0.15 (95% CI=0.07-0.24) for the outcomes of caregiver burden and time use, respectively. CONCLUSION: Cholinesterase inhibitors have a small beneficial effect on burden and active time use among caregivers of persons with AD. Recommendations to enhance the quality and interpretability of AD clinical trials that involve caregiver-specific outcomes are presented.

Cognitive and motor symptoms in dementia: focus on dementia with Lewy bodies.

PURPOSE: To describe the clinical syndrome called dementia with Lewy bodies (DLB) and highlight its common and unique characteristics with respect to diagnosis and management. DATA SOURCES: Review of the scientific literature including psychiatric literature, reports of clinical trials, and clinical practice guidelines. CONCLUSIONS: DLB is a clinical and histopathologic disease, which is second only to Alzheimer's disease (AD) as a cause of dementia in older adults. The clinical syndrome of DLB includes cognitive and motor deterioration reminiscent of symptoms associated with AD and Parkinson's disease (PD) respectively. IMPLICATIONS FOR PRACTICE: The late life intersection of cognitive and motor symptoms can present significant challenges in the primary care setting. Recognizing key features of common neurodegenerative disorders is essential to accurately diagnosing and appropriately treating the growing population of older adults who suffer from AD, PD, and DLB.