Care4AD: A Technology-Driven Platform for Care Coordination and Management: Acceptability Study in Dementia.

INTRODUCTION: The technology-driven solution can reduce the caregiving burden; however, the needs of dementia caregiving are unique, and attitudes towards adopting technology from the perspectives of all the stakeholders involved in dementia caregiving are unclear. This study aims to assess the acceptability and feasibility of a technology-driven platform to facilitate care coordination platform, Care4AD, from the end-user perspective. METHODS: Care4AD includes three components: (1) Care4AD app: the app is used by caregivers to coordinate care, monitor physical activity, and schedule reminders; (2) Care4AD tablet: a smart tablet is used by the care recipient to display scheduled reminders; and (3) Care4AD tags: a series of wireless sensor tags attached to various objects of daily care to facilitate monitoring instrumental activities of daily living (IADL) and adherence to scheduled tasks. Stakeholders in caregiving, including 11 experts in dementia care (age: 53.3 ± 8, 73% female), 10 individuals with dementia (IWD) (age: 76.1 ± 7.3, 50% female), and 14 caregivers (age: 66.9 ± 10.6, 75% female) were interviewed to determine perceived ease of use, attitude towards use, and perceived usefulness, based on the technology acceptance model (TAM) questionnaire. Additionally, we assessed technology anxiety and concerns with data sharing by caregivers and IWD. The interviews were conducted through videoconferencing or in-person meetings. The interview was composed of open-ended questions, a demonstration of the proposed Care4AD platform, and a survey based on TAM. RESULTS: Compared to the neutral response, stakeholders showed significantly higher acceptance (70-100% satisfied to highly satisfied, p < 0.05) for all components of the TAM. Among IWD, age (r = -0.68, p = 0.03) and for caregivers the perceived ease of use (r = 0.73, p < 0.01) were significant predictors of attitude towards using the technology. Interestingly, neither concerns about data sharing nor educational level were limiting factors in the acceptability of the system in our sample. CONCLUSION: Overall, the results support a high perception of usefulness, ease of use, and attitude towards using Care4AD. The key barriers to adopting such technology are the age of IWD and the caregiver's perception of ease of use. Future studies are warranted to explore the effectiveness of such a platform to reduce caregiver stress and improve the quality of life and independence of IWD.

Digital Biomarkers of Cognitive Frailty: The Value of Detailed Gait Assessment Beyond Gait Speed.

BACKGROUND: Cognitive frailty (CF), defined as the simultaneous presence of cognitive impairment and physical frailty, is a clinical symptom in early-stage dementia with promise in assessing the risk of dementia. The purpose of this study was to use wearables to determine the most sensitive digital gait biomarkers to identify CF. METHODS: Of 121 older adults (age = 78.9 ± 8.2 years, body mass index = 26.6 ± 5.5 kg/m2) who were evaluated with a comprehensive neurological exam and the Fried frailty criteria, 41 participants (34%) were identified with CF and 80 participants (66%) were identified without CF. Gait performance of participants was assessed under single task (walking without cognitive distraction) and dual task (walking while counting backward from a random number) using a validated wearable platform. Participants walked at habitual speed over a distance of 10 m. A validated algorithm was used to determine steady-state walking. Gait parameters of interest include steady-state gait speed, stride length, gait cycle time, double support, and gait unsteadiness. In addition, speed and stride length were normalized by height. RESULTS: Our results suggest that compared to the group without CF, the CF group had deteriorated gait performances in both single-task and dual-task walking (Cohen's effect size d = 0.42-0.97, p < 0.050). The largest effect size was observed in normalized dual-task gait speed (d = 0.97, p < 0.001). The use of dual-task gait speed improved the area under the curve (AUC) to distinguish CF cases to 0.76 from 0.73 observed for the single-task gait speed. Adding both single-task and dual-task gait speeds did not noticeably change AUC. However, when additional gait parameters such as gait unsteadiness, stride length, and double support were included in the model, AUC was improved to 0.87. CONCLUSIONS: This study suggests that gait performances measured by wearable sensors are potential digital biomarkers of CF among older adults. Dual-task gait and other detailed gait metrics provide value for identifying CF above gait speed alone. Future studies need to examine the potential benefits of gait performances for early diagnosis of CF and/or tracking its severity over time.

Smart-Home Concept for Remote Monitoring of Instrumental Activities of Daily Living (IADL) in Older Adults with Cognitive Impairment: A Proof of Concept and Feasibility Study.

Assessment of instrumental activities of daily living (IADL) is essential for the diagnosis and staging of dementia. However, current IADL assessments are subjective and cannot be administered remotely. We proposed a smart-home design, called IADLSys, for remote monitoring of IADL. IADLSys consists of three major components: (1) wireless physical tags (pTAG) attached to objects of interest, (2) a pendant-sensor to monitor physical activities and detect interaction with pTAGs, and (3) an interactive tablet as a gateway to transfer data to a secured cloud. Four studies, including an exploratory clinical study with five older adults with clinically confirmed cognitive impairment, who used IADLSys for 24 h/7 days, were performed to confirm IADLSys feasibility, acceptability, adherence, and validity of detecting IADLs of interest and physical activity. Exploratory tests in two cases with severe and mild cognitive impairment, respectively, revealed that a case with severe cognitive impairment either overestimated or underestimated the frequency of performed IADLs, whereas self-reporting and objective IADL were comparable for the case with mild cognitive impairment. This feasibility and acceptability study may pave the way to implement the smart-home concept to remotely monitor IADL, which in turn may assist in providing personalized support to people with cognitive impairment, while tracking the decline in both physical and cognitive function.

Decrease in Mobility during the COVID-19 Pandemic and Its Association with Increase in Depression among Older Adults: A Longitudinal Remote Mobility Monitoring Using a Wearable Sensor.

BACKGROUND: Social isolation during COVID-19 may negatively impact older adults' wellbeing. To assess its impact, we measured changes in physical activity and sleep among community-dwelling older adults, from pre-to post-pandemic declaration. METHOD: Physical activity and sleep in older adults (n = 10, age = 77.3 ± 1.9 years, female = 40%) were remotely assessed within 3-month pre-to 6-month post-pandemic declaration using a pendant-wearable system. Depression was assessed pre-and post-pandemic declaration using the Center for Epidemiologic Studies Depression scale and was compared with 48 h continuous physical activity monitoring data before and during pandemic. RESULTS: Compared to pre-pandemic, post-pandemic time spent in standing declined by 32.7% (Cohen's d = 0.78, p < 0.01), walking by 52.2% (d = 1.1, p < 0.01), step-counts by 55.1% (d = 1.0, p = 0.016), and postural transitions by 44.6% (d = 0.82, p = 0.017) with increase in sitting duration by 20.5% (d = 0.5, p = 0.049). Depression symptoms increased by 150% (d = 0.8, p = 0.046). Interestingly, increase in depression was significantly correlated with unbroken-prolong sitting bout (ρ = 0.677, p = 0.032), cadence (ρ = -0.70, p = 0.024), and sleep duration (ρ = -0.72, p = 0.019). CONCLUSION: This is one of the early longitudinal studies highlighting adverse effect of the pandemic on objectively assessed physical activity and sleep in older adults. Our observations showed need for timely intervention to mitigate hard to reverse consequences of decreased physical activity such as depression.

Leg stereotypy syndrome: phenomenology and prevalence.

OBJECTIVES: To describe the phenomenology and prevalence of leg stereotypy syndrome (LSS), characterised chiefly by repetitive, rhythmical, stereotypic leg movement, especially when sitting. METHODS: We sought to characterise LSS in two groups of subjects: (1) general population (GP) group, defined as individuals accompanying patients during their visits to Baylor College of Medicine Parkinson's Disease Center and Movement Disorders Clinic who are not genetically related to the patients; and (2) movement disorders (MD) group, composed of consecutive patients with diagnoses of restless legs syndrome, Parkinson's disease, Tourette syndrome and tardive dyskinesia. RESULTS: There were 92 participants enrolled in this study; 7% of 57 individuals in the GP group and 17% of those in the MD group met the diagnostic criteria for LSS. The mean age of individuals with LSS was 44.5 (±11.9) years and mean age at onset of LSS was 17.5 (±5.7) years. In half of the individuals, the 'shaking' involved predominantly one leg. All had a positive family history of similar disorder and none had diurnal variation. The seven-item Leg Stereotypy Syndrome Questionnaire was developed as a screening tool to aid in differentiating LSS from other movement disorders. CONCLUSIONS: LSS is a common condition, occurring in up to 7% of otherwise healthy individuals, and it is even more common in patients with hyperkinetic movement disorders. Although it phenomenologically may overlap with other stereotypic disorders, we argue that it is a distinct, familial, neurological syndrome.

Pseudobulbar Affect Correlates With Mood Symptoms in Parkinsonian Disorders but Not Amyotrophic Lateral Sclerosis.

Pseudobulbar affect (PBA) is a syndrome of affective disturbance associated with inappropriate laughter and crying, independent of mood. PBA is common in amyotrophic lateral sclerosis (ALS) and increasingly recognized in Parkinson's disease (PD) and atypical parkinsonism (aP). Correlates of PBA have not been systematically studied. The purpose of this study was to determine whether cognitive and psychiatric comorbidities correlated with patient-reported symptoms of PBA by using the Center for Neurological Study-Lability Scale among patients with ALS, PD, and aP. A total of 108 patients (PD, N=53; aP, N=29; ALS, N=26) completed a cognitive screener and self-reported measures of lability, depression, anxiety, apathy, and quality of life. Statistical analyses included one- and two-way analyses of covariance to evaluate group differences, Pearson's correlations to determine relationships between PBA symptoms and comorbidities, multiple regression for predicting PBA symptom severity in clinical correlates, and chi-square t tests for predicting demographic variables. PBA symptom severity did not vary between the three groups. Younger age and worse anxiety correlated with PBA symptom severity in all three groups, whereas depression and poor mental health/quality of life only correlated with PBA symptom severity in the PD and aP groups. PD and aP patients may be more likely to benefit from treatment with antidepressants. Increased PBA symptoms were associated with declines in cognitive functioning in the aP group, but sufficient numbers of PD and ALS patients with cognitive dysfunction may not have been recruited. The results suggest the possibility of an alternate pathophysiologic mechanism for PBA, which may vary between neurological disorders and disease progression. Mood and cognition are of particular relevance and should be evaluated when symptoms of PBA are suspected.

Comparative Patient Satisfaction and Feasibility of a Pilot Parkinson's Disease Enrichment Program.

BACKGROUND: Available treatment options for Parkinson's disease (PD) are primarily aimed at pharmacological and/or neurosurgical management of motor symptoms. However, many patients also experience chronic non-motor symptoms (NMS), including significant cognitive and mood changes. Currently, there is a gap in the neuropsychological literature regarding the efficacy of nonpharmacological treatment options for cognitive and mood changes in PD. OBJECTIVE: We sought to evaluate the efficacy and patient satisfaction of a pilot nonpharmacological intervention for alleviating NMS in patients with PD. METHODS: Twenty-three independently functioning nondemented patients with PD participated in a 5-week Parkinson's Disease Enrichment Program. Each 4-hour weekly session included content which addressed the following components: education, exercise, recreation, and socialization/support. Participants received a pre-assessment, including cognitive tests and questionnaires for depression and quality of life. After the completion of the program, participants completed post-assessment batteries to measure changes in neurocognitive and psychiatric status, as well as patient satisfaction regarding the program. RESULTS: Neuropsychological data from pre- and post-assessments revealed significant improvements in measures of executive functioning, memory, and depressive symptoms. No significant changes were observed on the remaining mood or cognitive measures. One hundred percent of participants reported enjoyment from socialization with other participants with PD and satisfaction with the program overall. CONCLUSIONS: Positive preliminary results suggest that further expansion of this nonpharmacological pilot program for treatment of NMS may be beneficial for patients with PD. Future studies will investigate a larger cohort of participants with PD and cross-validate findings in demographically diverse samples.

TM4SF20 ancestral deletion and susceptibility to a pediatric disorder of early language delay and cerebral white matter hyperintensities.

White matter hyperintensities (WMHs) of the brain are important markers of aging and small-vessel disease. WMHs are rare in healthy children and, when observed, often occur with comorbid neuroinflammatory or vasculitic processes. Here, we describe a complex 4 kb deletion in 2q36.3 that segregates with early childhood communication disorders and WMH in 15 unrelated families predominantly from Southeast Asia. The premature brain aging phenotype with punctate and multifocal WMHs was observed in ~70% of young carrier parents who underwent brain MRI. The complex deletion removes the penultimate exon 3 of TM4SF20, a gene encoding a transmembrane protein of unknown function. Minigene analysis showed that the resultant net loss of an exon introduces a premature stop codon, which, in turn, leads to the generation of a stable protein that fails to target to the plasma membrane and accumulates in the cytoplasm. Finally, we report this deletion to be enriched in individuals of Vietnamese Kinh descent, with an allele frequency of about 1%, embedded in an ancestral haplotype. Our data point to a constellation of early language delay and WMH phenotypes, driven by a likely toxic mechanism of TM4SF20 truncation, and highlight the importance of understanding and managing population-specific low-frequency pathogenic alleles.

Neuropsychological changes following deep brain stimulation surgery for Parkinson's disease: comparisons of treatment at pallidal and subthalamic targets versus best medical therapy.

BACKGROUND: Deep brain stimulation (DBS) improves motor symptoms in Parkinson's disease (PD), but questions remain regarding neuropsychological decrements sometimes associated with this treatment, including rates of statistically and clinically meaningful change, and whether there are differences in outcome related to surgical target. METHODS: Neuropsychological functioning was assessed in patients with Parkinson's disease (PD) at baseline and after 6 months in a prospective, randomised, controlled study comparing best medical therapy (BMT, n=116) and bilateral deep brain stimulation (DBS, n=164) at either the subthalamic nucleus (STN, n=84) or globus pallidus interna (GPi, n=80), using standardised neuropsychological tests. Measures of functional outcomes were also administered. RESULTS: Comparison of the two DBS targets revealed few significant group differences. STN DBS was associated with greater mean reductions on some measures of processing speed, only one of which was statistically significant in comparison with stimulation of GPi. GPi DBS was associated with lower mean performance on one measure of learning and memory that requires mental control and cognitive flexibility. Compared to the group receiving BMT, the combined DBS group had significantly greater mean reductions at 6-month follow-up in performance on multiple measures of processing speed and working memory. After calculating thresholds for statistically reliable change from data obtained from the BMT group, the combined DBS group also displayed higher rates of decline in neuropsychological test performance. Among study completers, 18 (11%) study participants receiving DBS displayed reliable decline by multiple indicators in two or more cognitive domains, a significantly higher rate than in the BMT group (3%). This multi-domain cognitive decline was associated with less beneficial change in subjective ratings of everyday functioning and quality of life (QOL). The multi-domain cognitive decline group continued to function at a lower level at 24-month follow-up. CONCLUSIONS: In those with PD, the likelihood of significant decline in neuropsychological functioning increases with DBS, affecting a small minority of patients who also appear to respond less optimally to DBS by other indicators of QOL. TRIAL REGISTRATION NUMBER: NCT00056563 and NCT01076452.

A Pilot Study of a Cognitive-Behavioral Treatment for Anxiety and Depression in Patients With Parkinson Disease.

Anxiety and depression often remain unrecognized or inadequately treated in patients with Parkinson disease (PD). Cognitive-behavioral therapy (CBT) is effective, but limited evidence supports its use for anxiety and depression in patients with PD. Sixteen patients with PD having significant anxiety and/or depressive symptoms were assigned to CBT or enhanced usual care. Assessments occurred at baseline, posttreatment, and 1-month follow-up. The CBT intervention included tools for anxiety, depression, and healthy living with PD symptoms. Individual sessions were delivered by telephone or in person, based on patient preference. Treatment was feasible with participants choosing 67% of sessions by telephone and 80% completed treatment. The between-group effect sizes for change scores from baseline to posttreatment and baseline to 1-month follow-up were large (posttreatment: d = 1.49 for depression and 1.44 for anxiety; 1-month follow-up: d = .73 for depression and 1.24 for anxiety), although only the posttreatment effect size for depression was significant. This pilot CBT program is feasible for treatment of anxiety and depression in patients with PD.

Delivering Multidisciplinary Rehabilitation Care in Parkinson's Disease: An International Consensus Statement.

BACKGROUND: Parkinson's disease (PD) is a complex neurodegenerative disorder impacting everyday function and quality of life. Rehabilitation plays a crucial role in improving symptoms, function, and quality of life and reducing disability, particularly given the lack of disease-modifying agents and limitations of medications and surgical therapies. However, rehabilitative care is under-recognized and under-utilized in PD and often only utilized in later disease stages, despite research and guidelines demonstrating its positive effects. Currently, there is a lack of consensus regarding fundamental topics related to rehabilitative services in PD. OBJECTIVE: The goal of the international Parkinson's Foundation Rehabilitation Medicine Task Force was to develop a consensus statement regarding the incorporation of rehabilitation in PD care. METHODS: The Task Force, comprised of international multidisciplinary experts in PD and rehabilitation and people directly affected by PD, met virtually to discuss topics such as rehabilitative services, existing therapy guidelines and rehabilitation literature in PD, and gaps and needs. A systematic, interactive, and iterative process was used to develop consensus-based statements on core components of PD rehabilitation and discipline-specific interventions. RESULTS: The expert-based consensus statement outlines key tenets of rehabilitative care including its multidisciplinary approach and discipline-specific guidance for occupational therapy, physical therapy, speech language pathology/therapy, and psychology/neuropsychology across all PD stages. CONCLUSIONS: Rehabilitative interventions should be an essential component in the comprehensive treatment of PD, from diagnosis to advanced disease. Greater education and awareness of the benefits of rehabilitative services for people with PD and their care partners, and further evidence-based and scientific study are encouraged.

Enough vs. More: Neuropsychological testing is more useful than genetic testing in the baseline evaluation of Parkinson disease.

In conclusion, baseline neuropsychological testing provides a vast amount of unique cognitive, psychiatric, behavioral, and psychosocial information that is useful to individuals with PD, care partners, and treatment team providers. As a baseline examination, it provides opportunities for comparison purposes in the future, a prediction of risk assessment and future treatment needs, and at the time of evaluation for clinical treatment to improve quality of life. Such information is not captured by genetic testing, although the ideal path moving forward would be to perform both neuropsychological testing and genetic testing at baseline.

Geopolitical Considerations for Working with Medically Complex Patients: A Case Illustration.

OBJECTIVE: Becoming culturally competent healthcare providers depends on the ability of practitioners to acquire knowledge, awareness, and skills related to other cultures. In building these areas of competence, it is essential to consider geopolitical factors that may influence health and health-seeking behaviors, particularly when working with immigrant populations. When care is sought, they are likely to experience significant barriers to effective care, including lack of providers who speak their language and failure of practitioners to integrate cultural beliefs into treatment plans. This is further complicated by the presence of geopolitical issues, including immigration status, war/conflict in the patient's country of origin, and/or human rights violations. METHOD: The current study uses a sample case of a Burmese-speaking, Myanmar national to illustrate a culturally informed approach to the assessment of neurobehavioral changes within complex geopolitical circumstances. The sample represents an amalgam of several patients, designed to represent common presentations, sociodemographic situations, and concerns that arise during the neuropsychological assessment process. RESULTS: Description of relevant case information including background, clinical observations, and performance on testing is provided. DISCUSSION: Awareness of the impact of these life experiences not only has the potential to deepen our understanding of our patients but also results in a more holistic, accurate, and culturally competent conceptualization of their physical and mental health needs.

Developing a Culturally Competent Neuropsychological Battery for Diagnosis of Dementia in Arabic-Speaking Patients in the United States.

OBJECTIVE: In adherence to the American Educational Research Association (AERA) guidelines on culturally informed testing practices, this paper aims to review a suggested battery of tests that is linguistically and culturally appropriate for Arabic-speaking patients and to inform the reader of the varied characteristics of the Arab world to aid in providing a culturally informed neuropsychological evaluation. METHOD: Test instruments in Arabic were identified through systematic searches of PubMed and Google Scholar, U.S.-based website searches in Arabic and French, and in consultation with Arabic-speaking cultural brokers. RESULTS: A battery assessing cognitive domains and mood was assembled using core measures that were developed using appropriate translations, cultural adaptations, and include normative data of Arabic-speaking individuals. Supplemental measures that can be administered using translated instructions and English normative data are also identified. The rationale for test selection and clinical utility, including strengths and limitations of the proposed measures is presented. CONCLUSIONS: Given the large number of Arab Americans residing in the United States combined with the dearth of Arabic speaking neuropsychologists, it is essential that non-Arabic speaking neuropsychologists educate themselves regarding culturally informed practices to better service this growing community.

A Neuropsychological Battery for the Evaluation of Dementia Among Mandarin-Speaking Older Adults in the United States.

OBJECTIVE: Asians of Chinese origin are the largest single Asian origin group in the United States and are also the third largest group in Harris County, TX (i.e., the Houston metropolitan area). Mandarin speakers constitute the majority of the group. The linguistic gaps between Chinese (Mandarin) and English make it essential to use appropriate tests and normative data when working with the Mandarin-speaking population. Although it is ideal to develop original tests and/or normative data for Mandarin-speaking patients residing in the United States, the process can be lengthy. Although these indigenous tests are being developed, a neuropsychological battery with tests validated in Mandarin-speaking regions (e.g., Mainland China, Taiwan, and Singapore) can provide valuable information for Mandarin-speaking patients who identify with their home culture/country/region. METHODS: A systematic review of two electronic databases (PubMed and PsycInfo) was conducted. RESULTS: A neuropsychological battery to assess cognitive domains, including global intellectual function, attention/processing speed, executive function, visuospatial/visuoconstruction, language, learning and memory, and emotion, was developed. Cognitive screeners and performance validity measures were also included. The battery consists of core and supplementary measures validated in the Mandarin-speaking population. A case illustration is provided. CONCLUSION: Strengths and limitations of the battery and the role of interpretation in service delivery are discussed. The battery is recommended to clinicians for the evaluation of Mandarin-speaking older adults residing in the United States and other non-Mandarin-speaking regions where local norms are not available.

Culturally Competent Approaches for Neuropsychological Assessment for Differential Diagnosis of Dementia of Korean-Speaking Patients in the United States.

OBJECTIVE: To serve the over 1.82 million people of Korean descent who reside in the United States, we assembled a core and supplemental battery of culturally and linguistically appropriate neuropsychological measures for differential diagnosis of dementia for Korean-speaking patients. METHOD: Test instruments in Korean were identified through systematic searches of PubMed and Google Scholar, US-based website searches in Korean, and in consultation with Korean-speaking cultural brokers, residing in the United States and Korea. RESULTS: A battery assessing cognitive domains and mood was assembled using core measures developed specifically for Korean-speaking individuals within the United States and supplemental English measures that can be administered using translated instructions and English normative data. The rationale for test selection and clinical utility, including strengths and limitations of the proposed measures, is presented. Additionally, a case illustration using the proposed battery is included. CONCLUSIONS: Given the large and aging population of Korean-speaking residents in the United States, it is imperative to utilize appropriately designed and normed instruments to provide culturally competent assessments to better serve the Korean community.

Developing a Culturally Competent Neuropsychological Assessment Battery for Farsi-speaking Patients with Suspected Dementia.

OBJECTIVE: To assemble a comprehensive neuropsychological battery appropriate for differential diagnosis of dementia in Farsi-speaking Iranian adults in the United States. METHOD: Systematic searches of PubMed, PsychInfo, and Google Scholar databases were conducted to obtain test instruments relevant to Farsi speakers in consultation with a Farsi-speaking cultural broker. RESULTS: A proposed battery assessing the domains of attention, executive function, verbal and visual episodic memory, language, visuospatial/visuoconstruction abilities, and mood/anxiety was assembled that includes core measures developed, either specifically for a Farsi-speaking Iranian population or validated/normed with a Farsi-speaking Iranian sample. Though not ideal, additional measures were selected that can be administered using translated instructions with English normative data to supplement the limited tests available for use in this population. The rationale for test selection and caveats for their clinical use are presented along with a case study. CONCLUSIONS: The number of neuropsychological measures available in Farsi and/or with normative data for Farsi speakers is extremely limited. Cognitive tests either developed for or validated with a bilingual Farsi-English sample also represent a significant gap in the literature. Appropriate measures for these populations are urgently needed to provide a culturally competent assessment of a growing older adult segment of an underserved community.