Development of a Standardized Approach to Disclosing Amyloid Imaging Research Results in Mild Cognitive Impairment.

The increased use of PET amyloid imaging in clinical research has sparked numerous concerns about whether and how to return such research test results to study participants. Chief among these is the question of how best to disclose amyloid imaging research results to individuals who have cognitive symptoms that could impede comprehension of the information conveyed. We systematically developed and evaluated informational materials for use in pre-test counseling and post-test disclosures of amyloid imaging research results in mild cognitive impairment (MCI). Using simulated sessions, persons with MCI and their family care partners (N = 10 dyads) received fictitious but realistic information regarding brain amyloid status, followed by an explanation of how results impact Alzheimer's disease risk. Satisfaction surveys, comprehension assessments, and focus group data were analyzed to evaluate the materials developed. The majority of persons with MCI and their care partners comprehended and were highly satisfied with the information presented. Focus group data reinforced findings of high satisfaction and included 6 recommendations for practice: 1) offer pre-test counseling, 2) use clear graphics, 3) review participants' own brain images during disclosures, 4) offer take-home materials, 5) call participants post-disclosure to address emerging questions, and 6) communicate seamlessly with primary care providers. Further analysis of focus group data revealed that participants understood the limitations of amyloid imaging, but nevertheless viewed the prospect of learning one's amyloid status as valuable and empowering.

Measuring hope among families impacted by cognitive impairment.

The current exploratory investigation aims to establish the reliability and validity of a hope measure, the Herth Hope Index, among families impacted by early cognitive impairment (N = 96). Exploratory factor analysis was used to examine the dimensionality of the measure. Bivariate analyses were used to examine construct validity. The sample had moderately high hope scores. A two-factor structure emerged from the factor analysis, explaining 51.44% of the variance. Both factors exhibited strong internal consistency (Cronbach's alphas ranged from .83 to .86). Satisfaction with social support was positively associated with hope, supporting convergent validity. Neurocognitive status, illness insight, and depression were not associated with hope, indicating discriminant validity. Families impacted by cognitive impairment may maintain hope in the face of a potentially progressive illness, regardless of cognitive status. The Herth Hope Index can be utilized as a reliable and valid measure of hope by practitioners providing support to families impacted by cognitive impairment.

Wearable Technology to Garner the Perspective of Dementia Family Caregivers.

Family caregivers of individuals with dementia typically have limited opportunity during brief clinical encounters to describe the dementia-related behaviors and interactions they find difficult to handle. Lack of objective data depicting the nature, intensity, and impact of these manifestations of the underlying disease further constrains the extent to which strategies recommended by nurses or other health care providers can be tailored to the situation. The current article describes a prototype wearable camera system used to gather image and voice data from the caregiver's perspective in a pilot feasibility intervention study conducted with 18 caregiving dyads. Several scenarios are presented that include salient events (i.e., behaviors or interactions deemed difficult by the caregiver or identified as concerning by the research team during screening) captured in the resulting video. The current authors anticipate future wearable camera systems and software will automate screening for salient events, providing new tools for assessment and intervention by nurses.

Usability of a Wearable Camera System for Dementia Family Caregivers.

Health care providers typically rely on family caregivers (CG) of persons with dementia (PWD) to describe difficult behaviors manifested by their underlying disease. Although invaluable, such reports may be selective or biased during brief medical encounters. Our team explored the usability of a wearable camera system with 9 caregiving dyads (CGs: 3 males, 6 females, 67.00 ± 14.95 years; PWDs: 2 males, 7 females, 80.00 ± 3.81 years, MMSE 17.33 ± 8.86) who recorded 79 salient events over a combined total of 140 hours of data capture, from 3 to 7 days of wear per CG. Prior to using the system, CGs assessed its benefits to be worth the invasion of privacy; post-wear privacy concerns did not differ significantly. CGs rated the system easy to learn to use, although cumbersome and obtrusive. Few negative reactions by PWDs were reported or evident in resulting video. Our findings suggest that CGs can and will wear a camera system to reveal their daily caregiving challenges to health care providers.

Just say know: an examination of substance use disorders among older adults in gerontological and substance abuse journals.

This article examines the extent to which studies of alcohol abuse, illicit drug use, and prescription drug abuse among older adults appear in the leading gerontological and substance abuse journals. The authors reviewed articles published in the 10 social science gerontological journals and the 10 social science substance abuse journals with the highest 5-year impact factors in PubMed from 2000 to 2010. Articles were selected that presented original research on alcohol, substance, or prescription abuse with older adults aged 50 and older; and were identified through aging and substance abuse-related Medical Subject Headings and word searches of titles and abstracts (N = 634). Full text of each article was reviewed by the authors, and consensus determined inclusion in the final sample. Of the 19,953 articles published respectively in the top 10 gerontological and substance abuse journals, 181 articles met the inclusion criteria of reporting findings related to substance use disorders among older adults. Specifically, 0.9% (102 of 11,700) of articles from the top 10 gerontology journals and 1.0% (79 of 8,253) of articles from the top 10 substance abuse journals met the criteria. Most published articles addressed alcohol misuse/abuse or polysubstance abuse with few articles addressing illicit drug use or the misuse of prescription medications. Less than 1% of articles published in the 10 gerontology journals and the 10 substance abuse journals with the highest 5-year impact scores addressed substance abuse in older adults. Practitioners treating health and/or mental health problems are at a disadvantage in accurately identifying and treating these conditions in older adult populations without a proper understanding of the role of comorbid substance use disorders.

Discussing dementia-related behaviors during medical visits for people with Alzheimer's disease.

Research suggests that caregivers appreciate support from primary care physicians (PCPs) regarding dementia care; however, there remains a need for studies examining the role that PCPs play in behavior management. The purpose of this study was to quantitatively characterize the discussion on dementia-related behaviors (DRBs) during PCP visits and compare findings to an independently administered assessment of DRBs exhibited within a period of 4 weeks prior to the PCP visit. Twenty-five PCP visits of persons with dementia, in which caregivers coattended the visit, were audio-recorded and analyzed for occurrence of DRB discussion. Disruptive behaviors were reported by 80% of caregivers via independent assessment, yet discussed in 23% of medical visits. Dementia-related behavior discussion occurred in visits where caregivers independently reported significantly higher behavior frequency and behavior-related burden. Implications of findings for ways PCPs can assist the caregiver in behavior management are discussed.

Falls among community-residing stroke survivors following inpatient rehabilitation: a descriptive analysis of longitudinal data.

BACKGROUND: Stroke victims are at relatively high risk for injurious falls. The purpose of this study was to document longitudinal fall patterns following inpatient rehabilitation for first-time stroke survivors. METHODS: Participants (n = 231) were recruited at the end of their rehab stay and interviewed monthly via telephone for 1 to 32 months regarding fall incidents. Analyses were conducted on: total reports of falls by month over time for first-time and repeat fallers, the incidence of falling in any given month; and factors differing between fallers and non fallers. RESULTS: The largest percentage of participants (14%) reported falling in the first month post-discharge. After month five, less than 10% of the sample reported falling, bar months 15 (10.4%) and 23 (13.2%). From months one to nine, the percentage of those reporting one fall with and without a prior fall were similar. After month nine, the number of individuals who reported a single fall with a fall history was twice as high compared to those without a prior fall who reported falling. In both cases the percentages were small. A very small subset of the population emerged who fell multiple times each month, most of whom had a prior fall history. At least a third of the sample reported a loss of balance each month. Few factors differed significantly between fallers and non-fallers in months one to six. CONCLUSION: Longitudinal data suggest that falls most likely linked to first time strokes occur in the first six months post discharge, particularly month one. Data routinely available at discharge does not distinguish fallers from non-fallers. Once a fall incident has occurred however, preventive intervention is warranted.

Feasibility of a patient-driven approach to recruiting older adults, caregivers, and clinicians for provider-patient communication research.

PURPOSE: This report describes the implementation of a novel, patient-driven approach to recruitment for a study of interpersonal communication in a primary care setting involving persons with Alzheimer's disease (AD), their family caregivers, and their primary care providers (PCPs). DATA SOURCES: Patients and caregivers were centrally recruited from a university-based memory clinic, followed by the recruitment of patient's individual PCPs. Recruitment tracking, naturalistic observation, and survey methods were used to evaluate recruitment success. CONCLUSIONS: About half of the patients and caregivers (n = 54; 51%) and most of the PCPs (n = 31; 76%) who we approached agreed to an audiorecording of the patient's next PCP visit. Characteristics of patient, caregiver, and PCP participants were compared to those of nonparticipants. Patient characteristics did not differ by participation status. Caregivers who volunteered for the study were more likely to be female and married than were those who declined to participate. Compared to nonparticipants, PCPs who agreed to the study were appraised slightly more favorably by patients' caregivers on a measure of satisfaction with care on the day of the visit. The vast majority of participating PCPs (95%) reported that the study had little or no impact on the flow of routine clinical operations. IMPLICATIONS FOR RESEARCH: Findings support the feasibility of a patient-driven approach to recruitment for studies involving multiple linked participants. Our discussion highlights possible advantages of such an approach, including the potential to empower patient participants while achieving maximum variability within the pool of clinician participants.