Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.

Background and Objectives: Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support. Methods: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of the caregiver experience relating to caregiver support, burden, grief, self-efficacy, depression, quality of life, and coping. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of caregiver measures with patient and caregiver variables with adjustments for multiple testing. Results: Caregivers (n = 143) were mostly women (83.5%) and spouses (84.7%) (mean age 68 years; range 37-85). Almost 40% reported high burden and/or depression. Caregiver measures correlated with fluctuation and behavioral symptom severity, sleepiness, and autonomic symptoms of the person with DLB. Higher burden correlated with worse caregiver quality of life, higher depression, and grief. Greater self-efficacy, social support, and resilience correlated with lower caregiver burden. The most frequently reported caregiver concerns were being unable to plan for the future, having to put the needs of the person with DLB ahead of the caregiver's own needs, and worry that the person with DLB would become too dependent on the caregiver, but many additional concerns were endorsed. Caregivers were generally satisfied with medical team support. The lowest reported satisfaction related to information regarding disease progression and how well medical teams shared information with each other. Discussion: Various patient-related and caregiver-related factors influence caregiver experiences in moderate-advanced DLB. Clinicians can target caregiver needs by providing support resources and DLB education and treating bothersome patient symptoms. Future research should investigate what interventions can modify and improve caregiver experiences in advanced DLB and identify therapeutics for patient symptoms currently without adequate treatments (e.g., fluctuations, daytime sleepiness). Trial Registration Information: NCT04829656.

Patient- and proxy-reported quality of life in advanced dementia with Lewy bodies.

INTRODUCTION: Little is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly in advanced stages. METHODS: Dyads of individuals with moderate-advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of patient/caregiver experiences. RESULTS: The Quality of Life in Alzheimer's Disease (QoL-AD) was completed by the person with DLB and the caregiver (proxy) in 61 dyads; 85 dyads had only a proxy-completed QoL-AD. Patient- and proxy-reported scores were moderately correlated (r = 0.57, P < 0.0001). Worse patient-reported QoL correlated with daytime sleepiness, autonomic symptom burden, and behavioral symptoms. Proxy ratings correlated with dementia severity, daytime sleepiness, behavioral symptoms, dependence in activities of daily living, and caregiver experience measures. DISCUSSION: Patient- and proxy-reported quality of life (QoL) should be assessed separately in advanced DLB. Some symptoms associated with QoL have available therapeutic options. Research is needed regarding strategies to optimally improve QoL in DLB. HIGHLIGHTS: Patient and proxy quality of life (QoL) ratings had moderate correlation in advanced dementia with Lewy bodies. Daytime sleepiness affected patient- and proxy-reported QoL. Behavioral symptoms affected patient- and proxy-reported QoL. Autonomic symptom burden affected patient-reported QoL. Dementia severity, dependence, and caregiver experiences affected proxy ratings.

Marijuana Use and Health Outcomes in Persons Living With HIV: Protocol for the Marijuana Associated Planning and Long-term Effects (MAPLE) Longitudinal Cohort Study.

BACKGROUND: Marijuana use is common in persons with HIV, but there is limited evidence of its relationship with potential health benefits or harms. OBJECTIVE: The Marijuana Associated Planning and Long-term Effects (MAPLE) study was designed to evaluate the impact of marijuana use on HIV-related health outcomes, cognitive function, and systemic inflammation. METHODS: The MAPLE study is a longitudinal cohort study of participants living with HIV who were recruited from 3 locations in Florida and were either current marijuana users or never regular marijuana users. At enrollment, participants completed questionnaires that included detailed marijuana use assessments, underwent interviewer-administered neurocognitive assessments, and provided blood and urine samples. Ongoing follow-ups included brief telephone assessments (every 3 months), detailed questionnaires (annually), repeated blood and urine samples (2 years), and linkage to medical records and statewide HIV surveillance data. Supplemental measures related to intracellular RNA, COVID-19, Alzheimer disease, and the gut microbiome were added after study initiation. RESULTS: The MAPLE study completed enrollment of 333 persons between 2018 and 2021. The majority of participants in the sample were ≥50 years of age (200/333, 60.1%), male (181/333, 54.4%), cisgender men (173/329, 52.6%), non-Hispanic Black (221/333, 66.4%), and self-reported marijuana users (260/333, 78.1%). Participant follow-up was completed in 2022, with annual updates to HIV surveillance data through at least 2027. CONCLUSIONS: The MAPLE study is the largest cohort specifically designed to understand the use of marijuana and its effects on HIV-related outcomes. The study population has significant diversity across age, sex, gender, and race. The data will help clinicians and public health officials to better understand patterns of marijuana use associated with both positive and negative health outcomes, and may inform recommendations for future clinical trials related to medical marijuana and HIV. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37153.