A5072636987- Dementia and Cognitive Impairment Research
- Parkinson's Disease Mechanisms and Treatments
- Palliative Care and End-of-Life Issues
- Health Systems, Economic Evaluations, Quality of Life
- Alzheimer's disease research and treatments
- Autism Spectrum Disorder Research
- Diet and metabolism studies
- Schizophrenia research and treatment
- Ginkgo biloba and Cashew Applications
- Fibromyalgia and Chronic Fatigue Syndrome Research
- Amyotrophic Lateral Sclerosis Research
- Family and Disability Support Research
- Grief, Bereavement, and Mental Health
- Complementary and Alternative Medicine Studies
- Body Image and Dysmorphia Studies
- Mental Health and Psychiatry
- Epilepsy research and treatment
- Opioid Use Disorder Treatment
- Neurological disorders and treatments
- Ethics in Clinical Research
- Geriatric Care and Nursing Homes
- Family Support in Illness
- Cholinesterase and Neurodegenerative Diseases
- Family Caregiving in Mental Illness
- Aging, Elder Care, and Social Issues
Thomas Jefferson University
2024
University of Miami
2021-2024
University of California, San Diego
2024
University of Pennsylvania
2024
University of Virginia
2022-2024
University of Florida
2024
The Neurological Institute
2024
University of Michigan
2024
Florida College
2024
Mayo Clinic
2024
AbstractAlthough increasing numbers of students with disabilities are accessing higher education, there is relatively little information about the needs Asperger syndrome (AS). Crucially, themselves have rarely been included in research examining their or supports they might find helpful. Three focus groups, one AS and two staff were conducted to explore challenges, barriers students' successful progress through university UK. Thematic analysis revealed some key differences between student...
Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared other types dementia. Prominent difficulties include motor impairment, activities daily living (ADLs) disability, recurrent behavioral emotional problems (BEPs), diagnostic difficulties. These are likely affect caregivers' subjective burden.The study used data from an Internet survey conducted by the Body Dementia Association. Respondents were 611 people who indicated that...
Lewy body dementia (LBD) is a common cause of but to date, little known about caregiver burden. The Body Dementia Association (www.LBDA.org) conducted web-based survey 962 caregivers (mean age 56 y; 88% women). most initial symptoms were cognitive (48%), motor (39%), or both (13%). Caregivers expressed concerns fear future (77%), feeling stressed (54%), loss social life (52%), and uncertainty what do next (50%). reported moderate-to-severe burden; 80% felt the people around them did not...
Abstract INTRODUCTION Little is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly advanced stages. METHODS Dyads individuals moderate–advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, research registries. The study collected demographics, disease‐related measures, measures patient/caregiver experiences. RESULTS Quality Life Alzheimer's Disease (QoL‐AD) was completed by the person caregiver (proxy) 61...
The clinical diagnosis of dementia with Lewy bodies (DLB) depends on identifying significant cognitive decline accompanied by core features parkinsonism, visual hallucinations, fluctuations, and REM sleep behavior disorder (RBD). Hyposmia is one the several supportive features. α-Synuclein seeding amplification assays (αSyn-SAAs) may enhance diagnostic accuracy detecting pathologic αSyn seeds in CSF. In this study, we examine how different associate CSF αSyn-SAA positivity a large group...
Objectives To investigate the natural history, cause of death, and end‐of‐life experiences individuals diagnosed with dementia Lewy bodies (DLB). Design Twenty‐question online survey administered through Body Dementia Association. Setting United States. Participants Caregivers, family, friends who died in past 5 years a diagnosis DLB (survey respondents: n = 658, 89% female, median age 50–69). Measurements The included 3 questions about respondent's background 17 person DLB. Topics time from...
Background Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. with Lewy bodies (DLB) is common neurodegenerative unique features which may affect the end of life (EOL). Given paucity data on EOL experiences in aspects DLB affecting EOL, we investigated reported by individuals DLB. Method We conducted telephone interviews family members who died last 5 years using semi-structured questionnaire identify...
Background: Caregivers of persons living with Alzheimer’s disease (AD), dementia Lewy bodies (DLB), and Parkinson’s (PDD) are faced numerous challenges. However, little is known about the caregiving experience across different dementias. Objective: The aims this cross-sectional study were to examine differences in caregiver between DLB, PDD, AD. Methods: Respondents caregivers (N = 515; 384 69 AD, 62 PDD) who completed a 230-question survey including sociodemographics, severity,...
Objectives: Many individuals with dementia Lewy bodies (DLB) die of disease-related complications, but predicting the end life can be challenging. We identified a phenotype associated approaching life. Methods: present 4 exemplar cases where DLB experienced refractory psychosis before death. reviewed codebooks and quotes from 3 studies regarding end-of-life experiences in to identify that aligned this phenotype. Results: In addition cases, family caregivers prior described prominent...
Abstract The regulatory path for drug approval is increasingly well defined. Drugs the treatment of Alzheimer disease (AD) need to show statistically significant benefit over placebo with respect cognitive and functional measures, Clinical Dementia Rating scale Alzheimer's Disease Assessment Scale–Cognitive Subscale being among most often used instruments in AD clinical trials. In contrast, there are no validated use trials drugs dementia Lewy bodies. This poses challenges development...
Parkinson's disease (PD) and dementia with Lewy bodies (DLB) share underlying neuropathology. Despite overlapping biology, therapeutic development has been approached separately for these clinical syndromes there remains no treatment to slow, stop or prevent progression of symptoms disability people living PD DLB. Recent advances in biomarker tools, however, have paved new paths biologic definition staging DLB under a shared research framework. Patient-centered funding organizations see the...
Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one most common degenerative dementias United States. Methods: The consisted telephone interviews caregivers and family members individuals who died DLB last 5 years. Interviews used a semi-structured questionnaire. Investigators employed qualitative descriptive approach analyze interview transcripts identify EOL care. Results: Thirty participants completed...
Abstract INTRODUCTION The National Institute on Aging – Alzheimer's Association (NIA‐AA) ATN research framework proposes to use biomarkers for amyloid (A), tau (T), and neurodegeneration (N) stage individuals with AD pathological features track changes longitudinally. overall aim was utilize this characterize pre‐mortem status longitudinally in a clinically diagnosed cohort of dementia Lewy bodies (DLB) correlate it the post mortem diagnosis. METHODS subtyped by cerebrospinal fluid (CSF)...
Background: Patient-centered care requires understanding patient preferences and needs, but research on the clinical of individuals living with dementia caregivers is sparse, particularly in Lewy bodies (DLB). Methods: Investigators conducted telephone interviews DLB from a body specialty center. Interviews employed semistructured questionnaire querying helpful aspects unmet needs. used qualitative descriptive approach to analyze transcripts identify themes. Results: Twenty 25 participated....