Cognitive Assessment with Cognivue Clarity®: Psychometric Properties and Normative Ranges in a Diverse Population.

Background: Detecting cognitive impairment in clinical practice is challenging as most instruments do not perform well in diverse samples of older adults. These same instruments are often used for eligibility into clinical trials making it difficult to recruit minoritized adults into Alzheimer's disease (AD) studies. Cognivue Clarity® is an FDA-cleared computerized 10-minute cognitive screening platform using adaptive psychophysics to detect cognitive impairment. Objective: Test the ability of Cognivue Clarity to measure cognitive performance in a diverse community sample compared with the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS). Methods: This study enrolled 452 participants across 6 US study sites and completed both Cognivue Clarity device and RBANS. Psychometric properties and exploratory factor analysis of Cognivue Clarity were explored and comparisons against RBANS across different age, sex, education, and ethnoracial groups were conducted. Results: Participants had a mean age of 47.9±16.1 years (range: 18-85), 63.6% were female, 45.9% had ≤12 years of education, 31.2% were African American and 9.2% were Hispanic. Cognivue Clarity had strong internal consistency, test-retest reliability and minimal practice effects. A 4-factor structure (Memory, Attention, Visuomotor, and Discrimination) had excellent goodness-of-fit. Normalizing age effects improved performance. Race and education effects were similar to those seen with RBANS. Cognivue Clarity had strong correlations with RBANS. Conclusions: Our study supports the use of Cognivue Clarity as an easy-to-use, brief, and valid cognitive assessment that measures cognitive performance. In the correct clinical setting, Cognivue Clarity may identify individuals with likely cognitive impairment who could be candidates for AD research studies.

The Assessment of Situational Judgement Questionnaire: A Novel Instrument to Detect Susceptibility to Financial Scamming.

BACKGROUND: Existing measures of scam susceptibility lack ecological validity and situational variability. Evidence suggests that all adults may be susceptible to scams, though a comprehensive fraud victimization theory remains to be explored. OBJECTIVE: To identify cognitive and sociodemographic variables that differentiate individuals with high scam susceptibility from those less susceptible. This article describes the development and feasibility of the Assessment of Situational Judgment questionnaire (ASJ), a brief tool designed to detect scam susceptibility. METHODS: The 17-item ASJ was developed using a combination of existing scams reported by the Florida Division of Consumer Services and legitimate scenarios. Participants were presented with scam and legitimate scenarios and queried regarding their willingness to engage. Response options were offered with instructions on a 7-point Likert scale (extremely unlikely to extremely likely). Pilot data from a development sample provided the foundation for the final version of the ASJ. RESULTS: The final version of the ASJ was administered to 183 online participants. The Scam factor (8 items) explained 50.6% of the variance. The Legit factor (9 items) reported on a 7-point Likert scale explaining 10.6% of the variance. A Scam to Legit ratio provides a proxy for overall scam susceptibility. Cut-off scores of 24 on the Scam factor, 47 on the Legit factor, and 0.62 on the ratio optimize measures of scam susceptibility. CONCLUSIONS: The ASJ is a brief, ecologically valid measure of scam susceptibility. There is a need for a sensitive and specific tool to detect scam susceptibility in clinical, community, and financial settings.

Neuropsychiatric symptoms in people living with dementia receiving home health services.

BACKGROUND: We sought to describe neuropsychiatric symptoms (NPS) among people living with dementia (PLWD) from diverse racial and ethnic groups receiving home health services while accounting for dementia severity, individual symptom prevalence, and neighborhood disadvantage. METHODS: A prospective study using cross-sectional data from n = 192 PLWD receiving skilled home healthcare in New Jersey enrolled in the Dementia Symptom Management at Home Program trial. We prospectively measured symptom prevalence with the Neuropsychiatric Inventory Questionnaire and dementia severity using the Quick Dementia Rating System. A one-way ANOVA determined NPS prevalence by dementia severity (mild, moderate, severe). Fisher's exact tests were used to assess the association of individual symptom prevalence with race and ethnicity and cross tabs to descriptively stratify individual symptom prevalence by dementia severity among groups. A Pearson correlation was performed to determine if a correlation existed among neighborhood disadvantages measured by the Area Deprivation Index (ADI) state decile scores and NPS prevalence and severity. RESULTS: Participants identified as non-Hispanic White (50%), non-Hispanic Black (30%), or Hispanic (13%). NPS were prevalent in 97% of participants who experienced 5.4 ± 2.6 symptoms with increased severity (10.8 ± 6.6) and care partner distress (13.8 ± 10.8). NPS increased with dementia severity (p = 0.004) with the greatest difference seen between individuals with mild dementia (4.3 ± 2.3) versus severe dementia (5.9 ± 2.3; p = 0.002). Few differences were found in symptom prevalence by racial and ethnic sub-groups. Nighttime behaviors were higher in non-Hispanic Black (78%), compared with non-Hispanic Whites (46%) with moderate dementia, p = 0.042. State ADI scores were not correlated with the number of NPS reported, or severity. CONCLUSIONS: NPS were prevalent and increased with dementia severity with commonalities among racial and ethnic groups with varying levels of neighborhood disadvantage. There is a need for effective methods for improving NPS identification, assessment, and management broadly for homebound PLWD.

Diversity of Studies on Neighborhood Greenspace and Brain Health by Racialized/Ethnic Group and Geographic Region: A Rapid Review.

Studies examining associations between greenspace and Alzheimer's disease and related dementia (ADRD) outcomes are rapidly on the rise, yet no known literature reviews have summarized the racialized/ethnic group and geographic variation of those published studies. This is a significant gap given the known disparities in both greenspace access and ADRD risk between racialized/ethnic groups and between developed versus developing countries. In this rapid literature review, we (1) describe the diversity of published greenspace-brain health studies with respect to racialized/ethnic groups and geographic regions; (2) determine the extent to which published studies have investigated racialized/ethnic group differences in associations; and (3) review methodological issues surrounding studies of racialized/ethnic group disparities in greenspace and brain health associations. Of the 57 papers meeting our inclusion criteria as of 4 March 2022, 21% (n = 12) explicitly identified and included individuals who were Black, Hispanic/Latinx, and/or Asian. Twenty-one percent of studies (n = 12) were conducted in developing countries (e.g., China, Dominican Republic, Mexico), and 7% (n = 4) examined racialized/ethnic group differences in greenspace-brain health associations. None of the studies were framed by health disparities, social/structural determinants of health, or related frameworks, despite the known differences in both greenspace availability/quality and dementia risk by racialized/ethnic group and geography. Studies are needed in developing countries and that directly investigate racialized/ethnic group disparities in greenspace-brain health associations to target and promote health equity.

Perceptions of greenspace and social determinants of health across the life course: The Life Course Sociodemographics and Neighborhood Questionnaire (LSNEQ).

We developed the Life Course Sociodemographics and Neighborhood Questionnaire (LSNEQ) to query older adults about perceived neighborhood greenspaces across the life course (i.e., distance to park, number of neighborhood parks/playgrounds, and neighborhood greenness) and about characteristics hypothesized to confound or moderate/mediate greenspace-health associations. Six perceived life course indices are derived from the LSNEQ: neighborhood socioeconomic status, neighborhood walking/biking, urbanicity, neighborhood amenities, neighborhood park access, and neighborhood greenness. Older adults from St. Louis, Missouri, and Sacramento, California, completed the LSNEQ in 2020-2021. The indices demonstrated borderline acceptable to good internal consistency (alpha = 0.60-0.79) and good to excellent test-retest reliability (ICC = 0.71-0.96) and detected different patterns of park access and neighborhood greenness by racialized group and location. Individuals with index scores indicating more neighborhood walking/biking and greater presence of neighborhood amenities over their life course were more likely to report neighborhood-based walking in older age. Overall, the LSNEQ is a reliable instrument to assess perceptions of life course social determinants of health including neighborhood greenspaces.

Hierarchical Two-Stage Cost-Sensitive Clinical Decision Support System for Screening Prodromal Alzheimer's Disease and Related Dementias.

BACKGROUND: The detection of subtle cognitive impairment in a clinical setting is difficult. Because time is a key factor in small clinics and research sites, the brief cognitive assessments that are relied upon often misclassify patients with very mild impairment as normal. OBJECTIVE: In this study, we seek to identify a parsimonious screening tool in one stage, followed by additional assessments in an optional second stage if additional specificity is desired, tested using a machine learning algorithm capable of being integrated into a clinical decision support system. METHODS: The best primary stage incorporated measures of short-term memory, executive and visuospatial functioning, and self-reported memory and daily living questions, with a total time of 5 minutes. The best secondary stage incorporated a measure of neurobiology as well as additional cognitive assessment and brief informant report questionnaires, totaling 30 minutes including delayed recall. Combined performance was evaluated using 25 sets of models, trained on 1,181 ADNI participants and tested on 127 patients from a memory clinic. RESULTS: The 5-minute primary stage was highly sensitive (96.5%) but lacked specificity (34.1%), with an AUC of 87.5% and diagnostic odds ratio of 14.3. The optional secondary stage increased specificity to 58.6%, resulting in an overall AUC of 89.7% using the best model combination of logistic regression and gradient-boosted machine. CONCLUSION: The primary stage is brief and effective at screening, with the optional two-stage technique further increasing specificity. The hierarchical two-stage technique exhibited similar accuracy but with reduced costs compared to the more common single-stage paradigm.

Overcoming the COVID-19 Pandemic for Dementia Research: Engaging Rural, Older, Racially and Ethnically Diverse Church Attendees in Remote Recruitment, Intervention and Assessment.

BACKGROUND: Access to cognitive screening in rural underserved communities is limited and was further diminished during the COVID-19 pandemic. We examined whether a telephone-based cognitive screening intervention would be effective in increasing ADRD knowledge, detecting the need for further cognitive evaluation, and making and tracking the results of referrals. METHOD: Using a dependent t-test design, older, largely African American and Afro-Caribbean participants completed a brief educational intervention, pre/post AD knowledge measure, and cognitive screening. RESULTS: Sixty of 85 eligible individuals consented. Seventy-percent of the sample self-reported as African American, Haitian Creole, or Hispanic, and 75% were female, with an average age of 70. AD knowledge pre-post scores improved significantly (t (49) = -3.4, p < .001). Of the 11 referred after positive cognitive screening, 72% completed follow-up with their provider. Five were newly diagnosed with dementia. Three reported no change in diagnosis or treatment. Ninety-percent consented to enrolling in a registry for future research. CONCLUSION: Remote engagement is feasible for recruiting, educating, and conducting cognitive screening with rural older adults during a pandemic.

Medical and Social Determinants of Brain Health and Dementia in a Multicultural Community Cohort of Older Adults.

BACKGROUND: Socioeconomic status (SES), race, ethnicity, and medical comorbidities may contribute to Alzheimer's disease and related disorders (ADRD) health disparities. OBJECTIVE: Analyze effects of social and medical determinants on cognition in 374 multicultural older adults participating in a community-based dementia screening program. METHODS: We used the Montreal Cognitive Assessment (MoCA) and AD8 as measures of cognition, and a 3-way race/ethnicity variable (White, African American, Hispanic) and SES (Hollingshead index) as predictors. Potential contributors to health disparities included: age, sex, education, total medical comorbidities, health self-ratings, and depression. We applied K-means cluster analyses to study medical and social dimension effects on cognitive outcomes. RESULTS: African Americans and Hispanics had lower SES status and cognitive performance compared with similarly aged Whites. We defined three clusters based on age and SES. Cluster #1 and #3 differed by SES but not age, while cluster #2 was younger with midlevel SES. Cluster #1 experienced the worse health outcomes while cluster #3 had the best health outcomes. Within each cluster, White participants had higher SES and better health outcomes, African Americans had the worst physical performance, and Hispanics had the most depressive symptoms. In cross-cluster comparisons, higher SES led to better health outcomes for all participants. CONCLUSION: SES may contribute to disparities in access to healthcare services, while race and ethnicity may contribute to disparities in the quality and extent of services received. Our study highlights the need to critically address potential interactions between race, ethnicity, and SES which may better explain disparities in ADRD health outcomes.

Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer's Disease, and Parkinson's Disease Dementia.

BACKGROUND: Caregivers of persons living with Alzheimer's disease (AD), dementia with Lewy bodies (DLB), and Parkinson's disease dementia (PDD) are faced with numerous challenges. However, little is known about the caregiving experience across different dementias. OBJECTIVE: The aims of this cross-sectional study were to examine the differences in the caregiver experience between DLB, PDD, and AD. METHODS: Respondents were caregivers (N = 515; 384 DLB, 69 AD, 62 PDD) who completed a 230-question survey including sociodemographics, disease severity, neuropsychiatric symptoms, and measures of grief, burden, depression, quality of life, social support, well-being, care confidence, and mastery/self-efficacy. RESULTS: There were no differences in caregiver age, sex, race, or education, or in the distribution of disease severity between diagnostic groups. Constructs were highly intercorrelated with positive attributes (caregiver QoL, care recipient QoL, social support, well-being, mastery and care confidence) being inversely correlated with negative attributes (burden, grief, and depression). Across dementia etiologies, no differences were reported for quality of life, social support, depression, well-being, psychological well-being, mastery, care confidence, burden or grief. Instead, we found that the caregiver's experience was dependent on caregiver characteristics, person living with dementia characteristics and their most disturbing symptom, with behavior, personality changes, and sleep having the greatest effect on constructs. CONCLUSION: Caregiver ratings of psychosocial constructs may be more dependent on care recipient-caregiver dyad characteristics and the current symptoms than the underlying cause of those symptoms. Interventions to improve the caregiving experience should be developed to address specific psychosocial constructs rather than focusing on disease etiology or stage.

The Effect of Sociodemographics, Physical Function, and Mood on Dementia Screening in a Multicultural Cohort.

PURPOSE: To assess age, sex, race and ethnicity disparities in cognitive function in community-dwelling older adults and identify factors that contribute to these disparities. PATIENTS AND METHODS: Cognitive performance (global and domain-specific) and self-reported cognitive function were compared among Black (N=57), Hispanic (N=139), and White (N=108) older adults. The impact of socioeconomic status (SES), physical functionality, and mood indicators was assessed with a combination of hierarchical general linear models and mediation analysis. RESULTS: Poorer cognitive performance and higher levels of impairment were found in older adults from racial and ethnic backgrounds. The contribution of lower SES to the observed racial and ethnic disparities in objective cognitive performance was 33% in Hispanics and about 20% in Blacks, while poorer physical functionality explained over half of the differences between Black and White participants. Higher self-reported cognitive impairment in minorities was explained by lower SES and higher depressive symptoms in Hispanics but not in Blacks. CONCLUSION: Performance on objective memory testing and self-reported cognition are greatly influenced by relevant biological, sociodemographic and medical variables. Dementia screening programs should be tailored to individual sociodemographic groups based on contributors that are specific to each group.

The Quick Physical Activity Rating (QPAR) scale: A brief assessment of physical activity in older adults with and without cognitive impairment.

INTRODUCTION: Alzheimer's disease and related dementias (ADRD) currently affect over 5.7 million Americans and over 35 million people worldwide. At the same time, over 31 million older adults are physically inactive with impaired physical performance interfering with activities of daily living. Low physical activity is a risk factor for ADRD. We examined the utility of a new measure, the Quick Physical Activities Rating (QPAR) as an informant-rated instrument to quantify the dosage of physical activities in healthy controls, MCI and ADRD compared with Gold Standard assessments of objective measures of physical performance, fitness, and functionality. METHODS: This study analyzed 390 consecutive patient-caregiver dyads who underwent a comprehensive evaluation including the Clinical Dementia Rating (CDR), mood, neuropsychological testing, caregiver ratings of patient behavior and function, and a comprehensive physical performance and gait assessment. The QPAR was completed prior to the office visit and was not considered in the clinical evaluation, physical performance assessment, staging or diagnosis of the patient. Psychometric properties including item variability and distribution, floor and ceiling effects, strength of association, known-groups performance, and internal consistency were determined. RESULTS: The patients had a mean age of 75.3±9.2 years, 15.7±2.8 years of education and were 46.9% female. The patients had a mean CDR-SB of 4.8±4.7 and a mean MoCA score of 18.6±7.1 and covered a range of healthy controls (CDR 0 = 54), MCI or very mild dementia (CDR 0.5 = 161), mild dementia (CDR 1 = 92), moderate dementia (CDR 2 = 64), and severe dementia (CDR 3 = 29). The mean QPAR score was 20.2±18.9 (range 0-132) covering a wide range of physical activity. The QPAR internal consistency (Cronbach alpha) was very good at 0.747. The QPAR was correlated with measures of physical performance (dexterity, grip strength, gait, mobility), physical functionality rating scales, measures of activities of daily living and comorbidities, the UPDRS, and frailty ratings (all p < .001). The QPAR report of physical activities was able to discriminate between individuals with impaired physical functionality (32.2±23.9 vs 15.2±13.8, p < .001), falls risk (28.4±21.6 vs. 14.5±13.2, p < .001), and the presence of frailty (28.1±22.7 vs. 11.8±9.4, p < .001). The QPAR showed strong psychometric properties and excellent data quality, and worked equally well across different patient ages, sexes, informant relationships, and in individuals with and without cognitive impairment. DISCUSSION: The QPAR is a brief detection tool that captures informant reports of physical activities and differentiates individuals with normal physical functionality from those individuals with impaired physical functionality. The QPAR correlated with Gold Standard assessments of strength and sarcopenia, activities of daily living, gait and mobility, fitness, health related quality of life, frailty, global physical performance, and provided good discrimination between states of physical functionality, falls risk, and frailty. The QPAR performed well in comparison to standardized scales of objective physical performance, but in a brief fashion that could facilitate its use in clinical care and research.

Dual-Task Gait Assessment and Machine Learning for Early-detection of Cognitive Decline.

Alzheimer's disease (AD) affects approximately 30 million people worldwide, and this number is predicted to triple by 2050 unless further discoveries facilitate the early detection and prevention of the disease. Computerized walkways for simultaneous assessment of motor-cognitive performance, known as a dual-task assessment, has been used to associate changes in gait characteristics to mild cognitive impairment (MCI) with early-stage disease. However, to our best knowledge, there is no validated method to detect MCI using the collective analysis of these gait characteristics. In this paper, we develop a machine learning approach to analyze the gait data from the dual-task assessment in order to detect subjects with cognitive impairment from healthy individuals. We collected dual-task gait data from a computerized walkway of a total of 92 subjects with 31 healthy control (HC) and 61 MCI. Using support vector machine (SVM) and gradient tree boosting, we developed a classifier to differentiate MCI from HC subjects and compared the results with a paper-based questionnaire assessment that has been commonly used in clinical practice. SVM provided the highest accuracy of 77.17% with 81.97% sensitivity and 67.74% specificity. Our results indicate the potential of machine learning + dual-task assessment to enable early diagnosis of cognitive decline before it advances to dementia and AD, so that early intervention or prevention strategies can be initiated.

Protocol for an embedded pragmatic clinical trial to test the effectiveness of Aliviado Dementia Care in improving quality of life for persons living with dementia and their informal caregivers.

INTRODUCTION: Persons living with Alzheimer's disease and related dementias (ADRD) frequently experience pain and behavioral and psychological symptoms of dementia (BPSD) which decrease quality of life (QOL) and influence caregiver burden. Home healthcare professionals however may underrecognize or lack the ability to manage BPSD. INTERVENTION: This protocol describes an ADRD palliative quality assurance performance improvement program for home healthcare, Aliviado Dementia Care-Home Health Edition. It includes training, mentoring, and a toolbox containing intervention strategies. METHODS: This embedded pragmatic clinical trial will utilize a multi-site, cluster randomized control design. Recruitment will occur from three home healthcare agencies located in New Jersey, Utah, and Florida. At each agency, care teams will be randomized as clusters and assigned to either the Aliviado Dementia Care program or usual care. We plan to enroll 345 persons living with ADRD and their informal caregiver dyads. The primary outcome will be to measure QOL in both the person living with ADRD and their informal caregiver, and emergency department visits and hospital admissions. Secondary outcomes in the person living with ADRD will include the examination of pain, BPSD, antipsychotic and analgesic use. Secondary outcomes in caregivers include burden, depressive symptoms, functional health and wellbeing, and healthcare utilization. CONCLUSION: This study will be the first large-scale embedded pragmatic clinical trial in home healthcare focused on care quality and outcomes in addressing QOL in ADRD. If proven successful, the intervention can then be disseminated to agencies throughout the country to improve the quality of care for this vulnerable, underserved population. TRIAL REGISTRATION: Clinical Trials.gov: NCT03255967.

Perceived burden among caregivers of patients with frontotemporal degeneration in the United States.

BACKGROUND: Frontotemporal degeneration (FTD) dementia often begins before age 60 and predominantly presents as four subtypes with prominent features of language, behavior, cognition, and motor symptoms. The early onset and unique symptoms place a distinct burden on caregivers of individuals with FTD versus other dementia types, such as Alzheimer's disease. This is the first known study to examine the domains of the FTD caregiver burden and the caregiver and patient characteristics associated with these domains. METHODS: In 2017, 674 FTD caregivers in the United States (US) completed a web-based survey of caregiver and patient demographics, disease severity/symptoms, caregiver burden, and financial costs of caregiving. The major factors of caregiver burden (Zarit Burden Inventory) were determined using a principal axis factor analysis with varimax rotation. Multiple linear regression analyses examined caregiver and patient characteristics associated with overall burden and three major factors of burden: role strain, personal strain, and performance strain. RESULTS: Increased neuropsychiatric symptoms was associated with overall caregiver burden and greater role, personal, and performance strain. Younger caregivers experienced greater overall burden and performance strain, female caregivers experienced increased role strain, and male caregivers experienced greater performance strain. Financial costs of caregiving and experiencing a caregiving crisis in the past year were associated with higher overall burden and role strain. CONCLUSIONS: This study suggests that the severity and sources of burden differ for caregivers of FTD patients versus patients with other dementia types. Differing predictors for each burden domain suggest targeted interventions to address the unique FTD caregiving challenges.

Rural stakeholder perceptions about cognitive screening.

Objectives: The study aims were to explore stakeholder perceptions about cognitive screening in a rural, ethnically diverse, underserved setting, and to examine whether perceptions varied by years lived in a rural area, career, health literacy, willingness to be screened, ethnicity, education, or age. Methods: Twenty-one rural, ethnically diverse stakeholders completed an open-ended interview of five questions and a measure regarding perceptions about cognitive screening (PRISM-PC, Boustani, et al., 2008 ). Open coding using the in vivo process (Saldaña, 2015 ) to "derive codes from the actual participant language" (p. 77) was used to analyze the qualitative data. We used Pearson correlation to examine relationships between the PRISM-PC and sociodemographics including age, years of education, health literacy, years lived in rural areas, and willingness to participate in cognitive screening. Results: Eight codes and two themes were identified from the in vivo analysis. The eight codes were "a sentence being pronounced over the lives", "keep everybody at home", "Education is big", the trust issues is everything here", "identify support systems", "access to care", and "there is a cost to do that". The two themes were "Trust is the essential component of connecting with Community", and (2) "The Community recognizes the importance of knowledge in improving care. PRISM-PC results added new information in that persons were concerned about the emotional and financial burden on their families. Overall, regardless of age, careers, care involvement, health literacy, or education, 81% of stakeholders indicated they would seek annual cognitive screening. Discussion: It is important for rural health professionals to consider that contrary to previous stigma concerns, stakeholders may support earlier dementia detection.

Reducing disability via a family centered intervention for acutely ill persons with Alzheimer's disease and related dementias: protocol of a cluster-randomized controlled trial (Fam-FFC study).

BACKGROUND: Hospitalized older persons with Alzheimer's disease and related dementias are at greater risk for functional decline and increased care dependency after discharge due to a combination of intrinsic factors, environmental, policy, and care practices that restrict physical and cognitive activity, lack of family involvement and limited staff knowledge of dementia care. We have developed a theory-based intervention, Family centered Function-focused Care, that incorporates an educational empowerment model for family caregivers (FCGs) provided within a social-ecological framework to promote specialized care to patients with dementia during hospitalization and the 60-day post-acute period. Primary aims are to test the efficacy of the intervention in improving physical and cognitive recovery in hospitalized persons living with Alzheimer's disease and related dementias (ADRD) and improving FCG preparedness and experiences. METHOD: We will implement Family centered Function-focused Care in a cluster-randomized trial of 438 patient/FCG dyads in six hospital units randomized within three hospitals. We hypothesize that patients who receive the intervention will demonstrate better physical function, less delirium occurrence and severity, neuropsychiatric symptoms, and depression compared to those in the control condition (Education-only). We also hypothesize that FCGs enrolled in Family centered Function-focused Care will experience increased preparedness for caregiving, and less strain, burden, and desire to institutionalize, as compared to FCGs the control group. We will also examine the costs and relative cost savings associated with the intervention and will evaluate the cultural appropriateness of Family centered Function-focused Care for families from diverse backgrounds. DISCUSSION: Our theory-based intervention makes use of real-world applicable approaches in a novel and innovative way to change the paradigm of how we currently look at acute care and post-acute transitions in persons with ADRD. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03046121 . Registered on 8 February 2017.

Cognitive impairment in Parkinson's disease: a report from a multidisciplinary symposium on unmet needs and future directions to maintain cognitive health.

People with Parkinson's disease (PD) and their care partners frequently report cognitive decline as one of their greatest concerns. Mild cognitive impairment affects approximately 20-50% of people with PD, and longitudinal studies reveal dementia in up to 80% of PD. Through the Parkinson's Disease Foundation Community Choice Research Award Program, the PD community identified maintaining cognitive function as one of their major unmet needs. In response, a working group of experts across multiple disciplines was organized to evaluate the unmet needs, current challenges, and future opportunities related to cognitive impairment in PD. Specific conference goals included defining the current state in the field and gaps regarding cognitive issues in PD from patient, care partner, and healthcare professional viewpoints; discussing non-pharmacological interventions to help maintain cognitive function; forming recommendations for what people with PD can do at all disease stages to maintain cognitive health; and proposing ideas for how healthcare professionals can approach cognitive changes in PD. This paper summarizes the discussions of the conference, first by addressing what is currently known about cognitive dysfunction in PD and discussing several non-pharmacological interventions that are often suggested to people with PD. Second, based on the conference discussions, we provide considerations for people with PD for maintaining cognitive health and for healthcare professionals and care partners when working with people with PD experiencing cognitive impairment. Furthermore, we highlight key issues and knowledge gaps that need to be addressed in order to advance research in cognition in PD and improve clinical care.

The social and economic burden of frontotemporal degeneration.

OBJECTIVE: To quantify the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD). METHODS: A 250-item internet survey was administered to primary caregivers of patients with behavioral-variant FTD (bvFTD), primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. The survey included validated scales for disease staging, behavior, activities of daily living, caregiver burden, and health economics, as well as investigator-designed questions to capture patient and caregiver experience with FTD. RESULTS: The entire survey was completed by 674 of 956 respondents (70.5%). Direct costs (2016 US dollars) equaled $47,916 and indirect costs $71,737, for a total annual per-patient cost of $119,654, nearly 2 times higher than reported costs for AD. Patients ≥65 years of age, with later stages of disease, and with bvFTD correlated with higher direct costs, while patients <65 years of age and men were associated with higher indirect costs. An FTD diagnosis produced a mean decrease in household income from $75,000 to $99,000 12 months before diagnosis to $50,000 to $59,999 12 months after diagnosis, resulting from lost days of work and early departure from the workforce. CONCLUSIONS: The economic burden of FTD is substantial. Counting productivity-related costs, per-patient costs for FTD appear to be greater than per-patient costs reported for AD. There is a need for biomarkers for accurate and timely diagnosis, effective treatments, and services to reduce this socioeconomic burden.

Anosognosia increases caregiver burden in mild cognitive impairment.

OBJECTIVE: Our aim is to determine the clinical correlates of impaired insight in patients with mild cognitive impairment (MCI) by examining its impact on cognition, functional status, neuropsychiatric symptoms, and caregiver burden. METHODS: The study involved 75 patients with MCI and their caregivers. Patients and caregivers underwent a comprehensive evaluation including the Clinical Dementia Rating, memory tests, and the Functional Assessment Questionnaire. Behavioral symptoms were assessed by the Neuropsychiatric Inventory, caregiver burden by the Zarit Burden Inventory, and insight by comparing self-report on the AD8 dementia screening tool to informant collateral. Patients were asked about their perceptions of their memory, and answers were compared with informants' responses. Patient mood was assessed with the Hospital Anxiety Depression Scale. RESULTS: There was a significant difference in AD8 scores among patients who retained versus lacked insight. Zarit Burden Inventory scores showed a significant rise as patient insight declined; the burden appeared greater on spouse versus non-spouse caregivers. Patients with poor insight had significantly worse ratings in Clinical Dementia Rating domains of personal care and judgment, while patients who retained insight had significantly higher depression and anxiety. Insight impairment was associated with worse caregiver mood. CONCLUSIONS: Decreased patient awareness for cognitive problems was significantly associated with higher caregiver burden, independent of neuropsychiatric symptoms, functional abilities, and cognition. Personal care, judgment, and problem-solving skills could contribute to caregiver burden. Increased awareness seemed a source of patient depression and anxiety. The research highlights the need to focus on the needs of MCI caregivers and to incorporate psychosocial assessments of caregiver-patient dyads into office visits.

Public-private partnerships improve health outcomes in individuals with early stage Alzheimer's disease.

PURPOSE: In a collaborative effort between the Missouri Department of Health, Area Agencies on Aging (AAA), Alzheimer Association, and academic researchers, we tested whether early dementia detection and comprehensive care consultations would improve health outcomes in care receivers (CRs) and their family caregivers (FCGs), therefore addressing an important public health concern. PARTICIPANTS AND METHODS: A total of 244 community-dwelling older adults screened for early-stage dementia by the AAA field staff were referred to the Alzheimer Association and participated in Project Learn MORE (Missouri Outreach and Referral Expanded) (PLM) - a 2-year, nonrandomized multisite intervention consisting of comprehensive care consultations to improve coping skills. PLM participants were compared against 96 controls receiving the Alzheimer Association's "usual services" between January 2011 and December 2012. We examined CR and FCG outcomes, including burden, care confidence, and mood, as effects of PLM, on delaying transitions in level of care. RESULTS: CRs showed improved knowledge (P=0.002) and reduced depression (P=0.007), while FCGs demonstrated improved knowledge (P=0.003) and ability to identify sources of support for the CR (P=0.032) and for themselves (P=0.043). However, FCGs were more burdened after PLM (P=0.02), due to increased awareness of Alzheimer's disease. PLM delayed transitions in care (odds ratio [OR] 3.32, 95% confidence level [CI]: 1.25-8.83) with the number needed to treat =6.82. CONCLUSION: PLM was successful in improving detection of incident cases of dementia in the community and in connecting patients and their families with needed services. Our findings support the use of state agencies and community service partners to detect dementia. Early implementation of psychosocial interventions could have significant impact in improving patient- and family-centered outcomes, potentially providing a cost-efficient alternative to pharmacotherapy.