ABSTRACT
BACKGROUND: Delivering a diagnosis of Alzheimer's disease and related dementias (ADRD) can be challenging not just for patients and families, but also for clinicians. Our objective was to understand dementia specialty care clinicians' perspectives on their role in diagnosis and diagnostic disclosure in dementia. METHODS: Qualitative interviews with clinicians from a specialty tertiary dementia care center focused on practices, challenges, and opportunities addressing patient and caregiver needs in dementia. Data was analyzed by an interdisciplinary team using thematic analysis. RESULTS: The 16 participants included behavioral neurologists, social workers, neuropsychologists, and nurses. Themes included the value of providing an accurate diagnosis, the timing and challenges of delivering a diagnosis, the central focus on diagnosis alongside the need for more education on care management, and the role of the interdisciplinary team. DISCUSSION: We identified areas for improvement and strengths that can be built upon or adapted to other settings, including providing clinicians in specialty and primary care settings more guidance and support when diagnostic challenges arise, strengthening interdisciplinary teamwork, and making dementia diagnosis and care more accessible.
ABSTRACT
BACKGROUND: Frontotemporal lobar degeneration (FTLD) is a leading cause of dementia in individuals aged <65 years. Several challenges to conducting in-person evaluations in FTLD illustrate an urgent need to develop remote, accessible, and low-burden assessment techniques. Studies of unobtrusive monitoring of at-home computer use in older adults with mild cognitive impairment show that declining function is reflected in reduced computer use; however, associations with smartphone use are unknown. OBJECTIVE: This study aims to characterize daily trajectories in smartphone battery use, a proxy for smartphone use, and examine relationships with clinical indicators of severity in FTLD. METHODS: Participants were 231 adults (mean age 52.5, SD 14.9 years; n=94, 40.7% men; n=223, 96.5% non-Hispanic White) enrolled in the Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL study) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS study) Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Mobile App study, including 49 (21.2%) with mild neurobehavioral changes and no functional impairment (ie, prodromal FTLD), 43 (18.6%) with neurobehavioral changes and functional impairment (ie, symptomatic FTLD), and 139 (60.2%) clinically normal adults, of whom 55 (39.6%) harbored heterozygous pathogenic or likely pathogenic variants in an autosomal dominant FTLD gene. Participants completed the Clinical Dementia Rating plus National Alzheimer's Coordinating Center Frontotemporal Lobar Degeneration Behavior and Language Domains (CDR+NACC FTLD) scale, a neuropsychological battery; the Neuropsychiatric Inventory; and brain magnetic resonance imaging. The ALLFTD Mobile App was installed on participants' smartphones for remote, passive, and continuous monitoring of smartphone use. Battery percentage was collected every 15 minutes over an average of 28 (SD 4.2; range 14-30) days. To determine whether temporal patterns of battery percentage varied as a function of disease severity, linear mixed effects models examined linear, quadratic, and cubic effects of the time of day and their interactions with each measure of disease severity on battery percentage. Models covaried for age, sex, smartphone type, and estimated smartphone age. RESULTS: The CDR+NACC FTLD global score interacted with time on battery percentage such that participants with prodromal or symptomatic FTLD demonstrated less change in battery percentage throughout the day (a proxy for less smartphone use) than clinically normal participants (P<.001 in both cases). Additional models showed that worse performance in all cognitive domains assessed (ie, executive functioning, memory, language, and visuospatial skills), more neuropsychiatric symptoms, and smaller brain volumes also associated with less battery use throughout the day (P<.001 in all cases). CONCLUSIONS: These findings support a proof of concept that passively collected data about smartphone use behaviors associate with clinical impairment in FTLD. This work underscores the need for future studies to develop and validate passive digital markers sensitive to longitudinal clinical decline across neurodegenerative diseases, with potential to enhance real-world monitoring of neurobehavioral change.
Subject(s)
Frontotemporal Dementia , Smartphone , Humans , Female , Male , Middle Aged , Frontotemporal Dementia/diagnosis , Frontotemporal Dementia/physiopathology , Aged , Severity of Illness Index , Proof of Concept Study , Adult , Longitudinal Studies , Neuropsychological Tests , Mobile ApplicationsABSTRACT
OBJECTIVE: To describe the frequency of neuropsychiatric complications among hospitalized patients with coronavirus disease 2019 (COVID-19) and their association with pre-existing comorbidities and clinical outcomes. METHODS: We retrospectively identified all patients hospitalized with COVID-19 within a large multicenter New York City health system between March 15, 2020 and May 17, 2021 and randomly selected a representative cohort for detailed chart review. Clinical data, including the occurrence of neuropsychiatric complications (categorized as either altered mental status [AMS] or other neuropsychiatric complications) and in-hospital mortality, were extracted using an electronic medical record database and individual chart review. Associations between neuropsychiatric complications, comorbidities, laboratory findings, and in-hospital mortality were assessed using multivariate logistic regression. RESULTS: Our study cohort consisted of 974 patients, the majority were admitted during the first wave of the pandemic. Patients were treated with anticoagulation (88.4%), glucocorticoids (24.8%), and remdesivir (10.5%); 18.6% experienced severe COVID-19 pneumonia (evidenced by ventilator requirement). Neuropsychiatric complications occurred in 58.8% of patients; 39.8% experienced AMS; and 19.0% experienced at least one other complication (seizures in 1.4%, ischemic stroke in 1.6%, hemorrhagic stroke in 1.0%) or symptom (headache in 11.4%, anxiety in 6.8%, ataxia in 6.3%). Higher odds of mortality, which occurred in 22.0%, were associated with AMS, ventilator support, increasing age, and higher serum inflammatory marker levels. Anticoagulant therapy was associated with lower odds of mortality and AMS. CONCLUSION: Neuropsychiatric complications of COVID-19, especially AMS, were common, varied, and associated with in-hospital mortality in a diverse multicenter cohort at an epicenter of the COVID-19 pandemic.
Subject(s)
COVID-19 , Hospital Mortality , Humans , COVID-19/complications , COVID-19/mortality , Male , Female , Middle Aged , Aged , Retrospective Studies , New York City/epidemiology , Cohort Studies , Adult , Comorbidity , Mental Disorders/epidemiology , Mental Disorders/etiology , Aged, 80 and over , SARS-CoV-2ABSTRACT
BACKGROUND: Coronavirus disease 2019 (COVID-19) is associated with high rates of mortality and morbidity in older adults, especially those with pre-existing conditions. There is little work investigating how neurological conditions affect older adults with COVID-19. We aimed to compare in-hospital outcomes, including mortality, in older adults with and without epilepsy. METHODS: This retrospective study in a large multicenter New York health system included consecutive older patients (age ≥65 years) either with or without epilepsy who were admitted with COVID-19 between 3/2020-5/2021. Epilepsy was identified using a validated International Classification of Disease (ICD) and antiseizure medicationbased case definition. Univariate comparisons were calculated using Chi-square, Fisher's exact, Mann-Whitney U, or Student's t-tests. Multivariable logistic regression models were generated to examine factors associated with mortality, discharge disposition and length of stay (LOS). RESULTS: We identified 5384 older adults admitted with COVID-19 of whom 173 (3.21 %) had epilepsy. Mean age was significantly lower in those with (75.44, standard deviation (SD): 7.23) compared to those without epilepsy (77.98, SD: 8.68, p = 0.007). Older adults with epilepsy were more likely to be ventilated (35.84 % vs. 16.18 %, p < 0.001), less likely to be discharged home (21.39 % vs. 43.12 %, p < 0.001), had longer median LOS (13 days vs. 8 days, p < 0.001), and had higher in-hospital death (35.84 % vs. 28.29 %, p = 0.030) compared to those without epilepsy. Epilepsy in older adults was associated with increased odds of in-hospital death (adjusted odds ratio (aOR), 1.55; 95 % CI 1.12-2.14, p = 0.032), non-routine discharge disposition (aOR, 3.34; 95 % CI 2.21-5.03, p < 0.001), and longer LOS (46.46 % 95 % CI 34 %-59 %, p < 0.001). CONCLUSIONS: In models that adjusted for multiple confounders including comorbidity and age, our study found that epilepsy was still associated with higher in-hospital mortality, longer LOS and worse discharge dispositions in older adults with COVID-19 higher in-hospital mortality, longer LOS and worse discharge dispositions in older adults with COVID-19. This work reinforces that epilepsy is a risk factor for worse outcomes in older adults admitted with COVID-19. Timely identification and treatment of COVID-19 in epilepsy may improve outcomes in older people with epilepsy.
Subject(s)
COVID-19 , Epilepsy , Humans , Aged , Retrospective Studies , SARS-CoV-2 , Hospital Mortality , Hospitalization , Length of Stay , Epilepsy/epidemiology , HospitalsABSTRACT
INTRODUCTION: Interprofessional consultations ("eConsults") can reduce healthcare utilization. However, the impact of eConsults on healthcare utilization remains poorly characterized among patients with headache. METHODS: We performed a retrospective, 1:1 matched cohort study comparing patients evaluated for headache via eConsult request or in-person referral at the Mount Sinai Health System in New York. Groups were matched on clinical and demographic characteristics. Our primary outcome was one or more outpatient headache-related encounters in 6 months following referral date. Secondary outcomes included one or more all-cause outpatient neurology and headache-related emergency department (ED) encounters during the same period. We used univariable and multivariable logistic regression to model associations between independent variables and outcomes. RESULTS: We identified 74 patients with headache eConsults who were matched to 74 patients with in-person referrals. Patients in the eConsult group were less likely to achieve the primary outcome (29.7% vs 62.2%, P < 0.0001) or have an all-cause outpatient neurology encounter (33.8% vs 79.7%, P < 0.0001) than patients in the comparison group. Both groups did not significantly differ by headache-related ED encounters. In multivariable analyses, patients in the eConsult group had significantly lower odds of having one or more headache-related or all-cause neurology encounters than patients in the comparison group (odds ratio (OR) 0.3, 95% confidence interval (CI) 0.1-0.6; OR 0.1, 95% CI 0.1-0.3, respectively). DISCUSSION: In comparison to in-person referrals, eConsult requests for headache were associated with reduced likelihood of outpatient neurology encounters in the short-term but not with differential use of headache-related ED encounters. Larger-scale, prospective studies should validate our findings and assess patient outcomes.
ABSTRACT
BACKGROUND: A number of patients post-coronavirus disease-19 (COVID-19) report cognitive impairment (CI), even months after acute infection. We aimed to assess if COVID-19 is associated with increased incidence of CI in comparison to controls. METHODS: We analyzed data from the Mount Sinai Health System Post-COVID-19 Registry in New York City, a prospective cohort of patients post-COVID-19 ≥18 years of age and non-infected controls. CI was defined by scores ≥ 1.0 standard deviation below population norms, and was assessed using well-validated measures of attention, working memory, processing speed, executive functioning/cognitive flexibility, language, learning, and memory. Logistic regression models assessed odds for CI in each domain in patients post-COVID-19 vs. controls after adjusting for potential confounders. In exploratory analyses, we assessed odds for CI by site of acute COVID-19 care as a proxy for disease severity. FINDINGS: 417 patients post-COVID-19 and 151 controls (mean age 49 years, 63% female, 21% Black, 17% Latinx) were included. In adjusted analyses, patients were significantly more likely than controls to have CI in executive functioning (odds ratio [OR]: 2.19; 95% confidence interval [CI]: 1.03 to 4.67), particularly those treated in outpatient (OR: 2.22; 95% CI: 1.02 to 4.82) and inpatient hospital (OR: 3.59; 95% CI: 1.27 to 10.16) settings. There were no significant associations between CI in other domains and history of COVID-19 or site of acute care. INTERPRETATION: Patients post-COVID-19 have greater odds of executive dysfunction, suggesting that focused cognitive screening may be prudent, even in those with mild to moderate disease. Studies should explore the pathophysiology and potential treatments for CI in this population. FUNDING: This work was funded by the Icahn School of Medicine at Mount Sinai.
Subject(s)
COVID-19 , Cognitive Dysfunction , Humans , Female , Middle Aged , Male , Prospective Studies , COVID-19/complications , Cognitive Dysfunction/etiology , Executive Function/physiology , LearningABSTRACT
OBJECTIVES: Coronavirus disease 2019 (COVID-19) is associated with mortality in persons with comorbidities. The aim of this study was to evaluate in-hospital outcomes in patients with COVID-19 with and without epilepsy. METHODS: We conducted a retrospective study of patients with COVID-19 admitted to a multicenter health system between March 15, 2020, and May 17, 2021. Patients with epilepsy were identified using a validated International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM)/ICD-10-CM case definition. Logistic regression models and Kaplan-Meier analyses were conducted for mortality and non-routine discharges (i.e., not discharged home). An ordinary least-squares regression model was fitted for length of stay (LOS). RESULTS: We identified 9833 people with COVID-19 including 334 with epilepsy. On univariate analysis, people with epilepsy had significantly higher ventilator use (37.70% vs 14.30%, p < .001), intensive care unit (ICU) admissions (39.20% vs 17.70%, p < .001) mortality rate (29.60% vs 19.90%, p < .001), and longer LOS (12 days vs 7 days, p < .001). and fewer were discharged home (29.64% vs 57.37%, p < .001). On multivariate analysis, only non-routine discharge (adjusted odds ratio [aOR] 2.70, 95% confidence interval [CI] 2.00-3.70; p < .001) and LOS (32.50% longer, 95% CI 22.20%-43.60%; p < .001) were significantly different. Factors associated with higher odds of mortality in epilepsy were older age (aOR 1.05, 95% CI 1.03-1.08; p < .001), ventilator support (aOR 7.18, 95% CI 3.12-16.48; p < .001), and higher Charlson comorbidity index (CCI) (aOR 1.18, 95% CI 1.04-1.34; p = .010). In epilepsy, admissions between August and December 2020 or January and May 2021 were associated with a lower odds of non-routine discharge and decreased LOS compared to admissions between March and July 2020, but this difference was not statistically significant. SIGNIFICANCE: People with COVID-19 who had epilepsy had a higher odds of non-routine discharge and longer LOS but not higher mortality. Older age (≥65), ventilator use, and higher CCI were associated with COVID-19 mortality in epilepsy. This suggests that older adults with epilepsy and multimorbidity are more vulnerable than those without and should be monitored closely in the setting of COVID-19.
Subject(s)
COVID-19 , Epilepsy , Humans , Aged , Cohort Studies , Retrospective Studies , Length of Stay , Epilepsy/epidemiology , Hospitals , Hospital MortalityABSTRACT
BACKGROUND: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. OBJECTIVE: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. METHODS: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. RESULTS: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. CONCLUSION: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.
Subject(s)
Alzheimer Disease , Dementia , Geriatrics , Humans , Aged , Caregivers , Dementia/therapy , Alzheimer Disease/therapy , Palliative CareABSTRACT
Background and Objectives: To determine the frequency of and challenges to documentation of advance care planning (ACP) in people with dementia, we conducted a chart review of 746 deceased patients seen at a tertiary memory care center between 2012 and 2017. Methods: The rates of documented advance directives (ADs), Physician Order for Life-Sustaining Treatment (POLST), and Do Not Resuscitate (DNR) status were calculated from review of institutional electronic health records. Regression analysis was used to determine associations between ACP documentation and patient characteristics. Results: At the time of death, approximately half of the patients had a documented AD and/or DNR status and 37% had a documented POLST; 30% of patients did not have any ACP documentation. Whereas most of the ADs were documented more than 5 years before time of death, POLST and DNR status were documented more frequently within 2 years of time of death. People who presented to clinic at a younger age and who primarily spoke English were more likely to have documented ADs. People living in zip codes with lower household incomes were 2-4.5 times less likely to have a POLST or DNR documentation. Discussion: ACP is underutilized in people with dementia, even among those seen in a specialty memory care center. ACP should be introduced early on for people with dementia to ensure patients have a voice in their care.
Subject(s)
Dementia , Neoplasms , Aged , Dementia/epidemiology , Dementia/therapy , Fee-for-Service Plans , Hospitalization , Hospitals , Humans , Medicare , Neoplasms/epidemiology , Neoplasms/therapy , United StatesABSTRACT
BACKGROUND: Patient groups traditionally affected by health disparities were less likely to use video teleneurology (TN) care during the initial COVID-19 pandemic surge in the United States. Whether this asymmetry persisted later in the pandemic or was accompanied with a loss of access to care remains unknown. METHODS: We conducted a retrospective cohort study using patient data from a multicenter healthcare system in New York City. We identified all established pediatric or adult neurology patients with at least two prior outpatient visits between June 16th, 2019 and March 15th, 2020 using our electronic medical record. For this established pre-COVID cohort, we identified telephone, in-person, video TN or emergency department visits and hospital admissions for any cause between March 16th and December 15th, 2020 ("COVID period"). We determined clinical, sociodemographic, income, and visit characteristics. Our primary outcome was video TN utilization, and our main secondary outcome was loss to follow-up during the COVID period. We used multivariable logistic regression to model the relationship between patient-level characteristics and both outcomes. RESULTS: We identified 23,714 unique visits during the COVID period, which corresponded to 14,170 established patients from our institutional Neurology clinics during the pre-COVID period. In our cohort, 4,944 (34.9%) utilized TN and 4,997 (35.3%) were entirely lost to follow-up during the COVID period. In the adjusted regression analysis, Black or African-American race [adjusted odds ratio (aOR) 0.60, 97.5%CI 0.52-0.70], non-English preferred language (aOR 0.49, 97.5%CI 0.39-0.61), Medicaid insurance (aOR 0.50, 97.5%CI 0.44-0.57), and Medicare insurance (aOR 0.73, 97.5%CI 0.65-0.83) had decreased odds of TN utilization. Older age (aOR 0.98, 97.5%CI 0.98-0.99), female sex (aOR 0.90 97.5%CI 0.83-0.99), and Medicaid insurance (aOR 0.78, 0.68-0.90) were associated with decreased odds of loss to follow-up. CONCLUSION: In the first 9 months of the COVID-19 pandemic, we found sociodemographic patterns in TN utilization that were similar to those found very early in the pandemic. However, these sociodemographic characteristics were not associated with loss to follow-up, suggesting that lack of TN utilization may not have coincided with loss of access to care.
ABSTRACT
BACKGROUND: The association between lifetime alcohol abuse and a higher risk to develop dementia is well known. However, it is unknown whether older adults who begin abusing alcohol late in life have an underlying neurodegenerative disease. OBJECTIVE: Identify the frequency of lifelong alcohol abuse (L-AA), late-onset alcohol abuse (LO-AA), and alcohol abuse as a first symptom of dementia (AA-FS) in patients with neurodegenerative diseases. METHODS: Cross-sectional retrospective study of patients evaluated at an academic referral center with a clinical diagnosis of behavioral variant frontotemporal dementia (bvFTD), Alzheimer-type dementia (AD), and semantic variant primary progressive aphasia (svPPA) (nâ=â1,518). The presence of alcohol abuse was screened with the National Alzheimer's Coordinating Center questionnaire. L-AA was defined as onset <â40 years, LO-AA as onset ≥40 years, and AA-FS was defined when the abuse started within the first three years from symptom onset. RESULTS: The frequency of LO-AA was 2.2% (nâ=â33/1,518). LO-AA was significantly more frequent in patients with bvFTD than AD (7.5%, nâ=â13/173 versus 1.3%, nâ=â16/1,254, CI:1.0;11.4%), but not svPPA (4.4%, nâ=â4/91, CI: -4.4;10.7%). Similarly, AA-FS was more frequent in bvFTD patients than AD (5.7%, nâ=â10/173 versus 0.7%, nâ=â9/1,254, CI:0.5%;9.5%), but not svPPA (2.2%, nâ=â2/91, CI:-2.4;9.1%). CONCLUSION: LO-AA can be a presenting symptom of dementia, especially bvFTD. Alcohol abuse onset later in life should prompt a clinical investigation into the possibility of an underlying neurodegenerative process because delay in diagnosis and treatment may increase patient and caregiver burden. The results need to be interpreted with caution due to the limitations of the study.
Subject(s)
Alcoholism , Alzheimer Disease , Frontotemporal Dementia , Neurodegenerative Diseases , Aged , Alcoholism/diagnosis , Alcoholism/epidemiology , Alzheimer Disease/diagnosis , Alzheimer Disease/epidemiology , Cross-Sectional Studies , Frontotemporal Dementia/diagnosis , Frontotemporal Dementia/epidemiology , Humans , Neurodegenerative Diseases/diagnosis , Neurodegenerative Diseases/epidemiology , Neuropsychological Tests , Retrospective StudiesABSTRACT
BACKGROUND: After a diagnosis of Alzheimer's disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. OBJECTIVE: To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. METHODS: We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. RESULTS: Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (nâ=â6/9); caregivers had a mean age of 67 and were primarily female (nâ=â21/31). Participants felt they received incomplete or "hesitant" guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. CONCLUSION: PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.
Subject(s)
Alzheimer Disease , Dementia , Aged , Caregivers/psychology , Dementia/psychology , Dementia/therapy , Female , Humans , Male , Qualitative Research , UncertaintyABSTRACT
OBJECTIVE: To identify the prevalence and characteristics of people living with dementia (PLWD) lost to follow-up (LTFU) from a specialized dementia care clinic and to understand factors influencing patient follow-up status. METHODS: We conducted a retrospective chart review of PLWD seen at a dementia care clinic 2012-2017 who were deceased as of 2018 (n = 746). Participants were evaluated for follow-up status at the time of death. Generalized linear regression was used to analyze demographic and diagnostic characteristics by follow-up status. Text extracted from participant medical records was analyzed using qualitative content analysis to identify reasons patients became LTFU. RESULTS: Among PLWD seen at a dementia care clinic, 42% became LTFU before death, 39% of whom had chart documentation describing reasons for loss to follow-up. Increased rates of LTFU were associated with female sex (risk ratio 1.27, [95% confidence interval 1.09-1.49]; p = 0.003), educational attainment of high school or less (1.34, [1.13-1.61]; p = 0.001), and death in a long-term care facility (1.46, [1.19-1.80]; p = 0.003). Commonly documented reasons for not returning for care at the clinic included switching care to another provider (42%), logistical difficulty accessing care (26%), patient-family decision to discontinue care (24%), and functional challenges in accessing care (23%). CONCLUSIONS: PLWD are LTFU from specialized memory care at high rates. Attention to care coordination, patient-provider communication, and integrated use of alternative care models such as telehealth are potential strategies to improve care.
Subject(s)
Dementia , HIV Infections , Ambulatory Care Facilities , Dementia/epidemiology , Female , Humans , Lost to Follow-Up , Retrospective StudiesABSTRACT
BACKGROUND: Mild cognitive difficulties and progressive brain atrophy are observed in older people living with HIV (PLWH) despite persistent viral suppression. Whether cerebrovascular disease (CVD) risk factors and white matter hyperintensity (WMH) volume correspond to the observed progressive brain atrophy is not well understood. METHODS: Longitudinal structural brain atrophy rates and WMH volume were examined among 57 HIV-infected participants and 40 demographically similar HIV-uninfected controls over an average (SD) of 3.4 (1.7) years. We investigated associations between CVD burden (presence of diabetes, hypertension, hyperlipidemia, obesity, smoking history, and atrial fibrillation) and WMH with atrophy over time. RESULTS: The mean (SD) age was 64.8 (4.3) years for PLWH and 66.4 (3.2) years for controls. Participants and controls were similar in age and sex (P > 0.05). PLWH were persistently suppressed (VL <375 copies/mL with 93% <75 copies/mL). The total number of CVD risk factors did not associate with atrophy rates in any regions of interests examined; however, body mass index independently associated with progressive atrophy in the right precentral gyrus (ß = -0.30; P = 0.023), parietal lobe (ß = -0.28; P = 0.030), and frontal lobe atrophy (ß = -0.27; P = 0.026) of the HIV-infected group. No associations were found in the HIV-uninfected group. In both groups, baseline WMH was associated with progressive atrophy rates bilaterally in the parietal gray in the HIV-infected group (ß = -0.30; P = 0.034) and the HIV-uninfected participants (ß = -0.37; P = 0.033). CONCLUSIONS: Body mass index and WMH are associated with atrophy in selective brain regions. However, CVD burden seems to partially contribute to progressive brain atrophy in older individuals regardless of HIV status, with similar effect sizes. Thus, CVD alone is unlikely to explain accelerated atrophy rates observed in virally suppressed PLWH. In older individuals, addressing modifiable CVD risk factors remains important to optimize brain health.
Subject(s)
Anti-HIV Agents/therapeutic use , Brain/pathology , Cerebrovascular Disorders/etiology , HIV Infections/complications , HIV-1 , Aged , Atrophy/etiology , Atrophy/pathology , Cerebrovascular Disorders/pathology , Female , Humans , Longitudinal Studies , Male , Middle AgedABSTRACT
INTRODUCTION: Palliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, this study characterizes memory care providers' perspectives on addressing palliative care needs of people living with dementia (PLWD). METHODS: Qualitative interviews with specialty memory care providers were followed by thematic analysis by a multidisciplinary research team. RESULTS: Provider approaches overlap with key domains of palliative care. Approaches unique to dementia include having a detailed understanding of dementia syndromes, behavioral symptoms, and caregiver burden. Challenges were identified related to disease progression, provider-level factors, and systems and cultural issues. Respondents identified training needed to strengthen a palliative care approach. DISCUSSION: There are many strengths of using memory care teams to address palliative care needs of PLWD. However, they may require additional knowledge and training to strengthen their work.
ABSTRACT
OBJECTIVE: To assess the implementation of teleneurology (TN), including patient and clinician experiences, during the coronavirus respiratory disease 2019 (COVID-19) pandemic. METHODS: We studied synchronous (video visit) and asynchronous (store-and-forward, patient-portal evaluation, remote monitoring) TN utilization in the Mount Sinai Health System Neurology Department in New York, 2 months before and after the start of our department's response to the pandemic in mid-March 2020. Weekly division meetings enabled ongoing assessments and analysis of barriers and facilitators according to the Consolidated Framework for Implementation Research and the Expert Recommendations for Implementing Change models. We used postvisit surveys of clinicians (from April 13 to May 15, 2020) and patients (from May 11 to 15, 2020) to determine technology platforms used, and TN experience and acceptability, using Likert scales (1 = very poor/unlikely to 5 = very good/likely). RESULTS: Over the 4-month period, 117 TN clinicians (n = 14 subspecialties) conducted 4,225 TN visits with 3,717 patients (52 pre- vs 4,173 post-COVID-19). No asynchronous TN services were delivered. Post-COVID-19, the number of TN clinicians, subspecialties performing TN, and visits increased by 963%, 133%, and 7,925%, respectively. Mean acceptability among patients and clinicians was 4.7 (SD 0.6) and 3.4 (SD 1.6), respectively. Most video visits were completed using Epic MyChart (78.5%) and Zoom (8.1%). TN implementation facilitators included Medicare geographic restriction waivers, development of clinician educational materials, and MyChart outreach programs for patients experiencing technical difficulties. CONCLUSIONS: A significant expansion of TN utilization accompanied the COVID-19 response. Patients found TN more acceptable than did clinicians. Proactive application of an implementation framework facilitated rapid and effective TN expansion.
ABSTRACT
Although psychosis is a defining feature of Lewy body disease, psychotic symptoms occur in a subset of patients with every major neurodegenerative disease. Few studies, however, have compared disease-related rates of psychosis prevalence in a large autopsy-based cohort, and it remains unclear how diseases differ with respect to the nature or content of the psychosis. We conducted a retrospective chart review of 372 patients with autopsy-confirmed neurodegenerative pathology: 111 with Alzheimer's disease, 59 with Lewy body disease and concomitant Alzheimer's disease, 133 with frontotemporal lobar degeneration (FTLD) with tau inclusions (including progressive supranuclear palsy, corticobasal degeneration or Pick's disease), and 69 with FTLD and TDP inclusions (FTLD-TDP, including types A-C). Psychosis content was classified by subtype, and the frequency of each subtype was compared among pathological diagnoses using logistic regression. A total of 111 of 372 patients had psychosis. Compared to other groups, patients with Lewy body disease/Alzheimer's disease pathology were significantly more likely to have hallucinations and were more likely to have more than one subtype of hallucination. Patients with Braak Parkinson stage 5-6 Lewy body disease were significantly more likely than those with no Lewy body disease to have visual hallucinations of misperception, peripheral hallucinations, hallucinations that moved, hallucinations of people/animals/objects, as well as delusions regarding a place and delusions of misidentification. The feeling of a presence occurred significantly more frequently in patients with Lewy body disease/Alzheimer's disease than all other pathologies. Patients with FTLD-TDP were significantly more likely to have delusions, and for the delusions to occur in the first 3 years of the disease, when compared to patients with Alzheimer's disease and FTLD-tau, though rates were not significantly greater than patients with Lewy body disease/Alzheimer's disease. Paranoia occurred more frequently in the FTLD-TDP and Lewy body disease/Alzheimer's disease categories compared to patients with Alzheimer's disease or FTLD-tau. Patients with FTLD-TDP pathology had delusions of misidentification as frequently as patients with Lewy body disease/Alzheimer's disease, and were significantly more likely to have self-elevating delusions such as grandiosity and erotomania compared to patients with other pathologies including FTLD-tau. These data show that the nature and content of psychosis can provide meaningful information about the underlying neurodegenerative pathology, emphasizing the importance of characterizing patients' psychoses for prediction of the neuropathological diagnosis, regardless of a patient's clinical syndrome.
Subject(s)
Delusions/etiology , Hallucinations/etiology , Neurodegenerative Diseases/complications , Psychotic Disorders/etiology , Aged , Delusions/epidemiology , Female , Hallucinations/epidemiology , Humans , Male , Middle Aged , Prevalence , Psychotic Disorders/epidemiologyABSTRACT
Globular glial tauopathy (GGT) is a rare 4-repeat tauopathy characterized by the accumulation of tau globular inclusions in astrocytes and oligodendrocytes. Several clinical phenotypes have been associated with GGT, making the prediction of this rare pathological entity difficult. We report the case of a patient with eye-movement abnormalities and gait instability, reminiscent of progressive supranuclear palsy-Richardson's syndrome (PSP-RS), who later developed upper motor neuron symptoms suggestive of primary lateral sclerosis (PLS). Neuropathological assessment revealed GGT type III pathology. A theoretical framework is proposed to help clinicians predict GGT in subjects with coexistent features of PSP-RS and PLS.
Subject(s)
Frontotemporal Dementia/diagnosis , Motor Neuron Disease/diagnosis , Neuroglia/pathology , Tauopathies/diagnosis , Aged, 80 and over , Fatal Outcome , Frontotemporal Dementia/complications , Frontotemporal Dementia/pathology , Frontotemporal Dementia/physiopathology , Gait Disorders, Neurologic/diagnosis , Gait Disorders, Neurologic/etiology , Gait Disorders, Neurologic/physiopathology , Humans , Male , Motor Neuron Disease/complications , Motor Neuron Disease/pathology , Motor Neuron Disease/physiopathology , Ocular Motility Disorders/diagnosis , Ocular Motility Disorders/etiology , Ocular Motility Disorders/physiopathology , Supranuclear Palsy, Progressive/complications , Supranuclear Palsy, Progressive/diagnosis , Supranuclear Palsy, Progressive/pathology , Supranuclear Palsy, Progressive/physiopathology , Tauopathies/complications , Tauopathies/pathology , Tauopathies/physiopathologyABSTRACT
Importance: Few health systems have adopted effective dementia care management programs. The Care Ecosystem is a model for delivering care from centralized hubs across broad geographic areas to caregivers and persons with dementia (PWDs) independently of their health system affiliations. Objective: To determine whether the Care Ecosystem is effective in improving outcomes important to PWDs, their caregivers, and payers beyond those achieved with usual care. Design, Setting, and Participants: A single-blind, randomized clinical trial with a pragmatic design was conducted among PWDs and their caregivers. Each PWD-caregiver dyad was enrolled for 12 months between March 20, 2015, and February 28, 2017. Data were collected until March 5, 2018. Study interventions and assessments were administered over the telephone and internet by clinical and research teams in San Francisco, California, and Omaha, Nebraska. Of 2585 referred or volunteer PWD-caregiver dyads in California, Iowa, or Nebraska, 780 met eligibility criteria and were enrolled. A total of 512 PWD-caregiver dyads were randomized to receive care through the Care Ecosystem and 268 dyads to receive usual care. All eligible PWDs had a dementia diagnosis; were enrolled or eligible for enrollment in Medicare or Medicaid; and spoke English, Spanish, or Cantonese. Analyses were intention-to-treat. Intervention: Telephone-based collaborative dementia care was delivered by a trained care team navigator, who provided education, support and care coordination with a team of dementia specialists (advanced practice nurse, social worker, and pharmacist). Main Outcomes and Measures: Primary outcome measure: Quality of Life in Alzheimer's Disease based on caregiver's rating of 13 aspects of PWD's well-being (including physical health, energy level, mood, living situation, memory, relationships, and finances) on a 4-point scale (poor to excellent). Secondary outcomes: frequencies of PWDs' use of emergency department, hospitalization, and ambulance services; caregiver depression (score on 9-Item Patient Health Questionnaire; higher scores indicate more severe depression); and caregiver burden (score on 12-Item Zarit Burden Interview; higher scores indicate more severe caregiver burden). Results: The 780 PWDs (56.3% female; mean [SD] age, 78.1 [9.9] years) and 780 caregivers (70.9% female; mean [SD] age, 64.7 [12.0] years) lived in California (n = 452), Nebraska (n = 284), or Iowa (n = 44). Of 780 dyads, 655 were still active at 12 months, and 571 completed the 12-month survey. Compared with usual care, the Care Ecosystem improved PWD quality of life (B, 0.53; 95% CI, 0.25-1.30; P = .04), reduced emergency department visits (B, -0.14; 95% CI, -0.29 to -0.01; P = .04), and decreased caregiver depression (B, -1.14; 95% CI, -2.15 to -0.13; P = .03) and caregiver burden (B, -1.90; 95% CI, -3.89 to -0.08; P = .046). Conclusions and Relevance: Effective care management for dementia can be delivered from centralized hubs to supplement usual care and mitigate the growing societal and economic burdens of dementia. Trial Registration: ClinicalTrials.gov identifier: NCT02213458.