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Closed for Enrollment
Identifying Factors Predicting Accurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study (PACE-DLB)
The objectives of this study are to determine the predictors of death within 6 months in individuals with Dementia with Lewy Bodies (DLB), to identify whether a change in caregiver measures can predict approaching end of life of individuals with DLB, and to identify factors that affect quality end of life experiences for persons with DLB and their caregivers.
Dementia with Lewy bodies (DLB) is part of Lewy body dementia, the 2nd-most-common degenerative dementia in the U.S. It is also one of the Alzheimer’s disease-related dementias (ADRDs). Evidence-based models of end-of-life care for ADRDs are insufficient; families face difficult medical decisions with little information for guidance. This is particularly relevant for DLB, where >70% of individuals die of the dementia itself or failure to thrive. Caregivers describe lack of knowledge of what to expect at the end of life as an important driver of negative end-of-life experiences. The proposed study addresses this unmet need. It also addresses the National Institute on Aging’s priority to improve quality of care and quality of life for persons with ADRDs at the end of life and their caregivers.
Closed for Enrollment
Comparative Effectiveness of Behavioral Interventions to Prevent or Delay Dementia (CEBIPODD)
This study will compare the effectiveness of different combinations of 5 types of behavioral interventions across patient-centered outcomes. It will also evaluate which outcomes (e.g. quality of life, cognition, function, mood) matter most to people at risk for dementia and their care partners. The results of this study have the potential to direct patients, families, and health care providers as to which combinations of behavioral interventions provide the greatest potential impact on which dementia prevention outcomes. Greater use of behavioral strategies that are targeted to the outcomes of most important to the patient will likely improve patient compliance and treatment adherence. This, in turn, can lessen the need for medication, health care, and long term care utilization.
Fostering Caregiver Connections via Intentional Technology Pairing for Caregivers of Patients with Alzheimer’s Disease and Other Types of Dementia
The purpose of this study is to facilitate focus groups to assess/identify important qualities and characteristics that dementia caregivers are looking for in a supportive person, and to design a prototype website for matching current and former caregivers.
Personalized Tool for AD/ADRD Caregivers Addressing Financial Management and Legal Planning (FinLe)
The purpose of this research is to iteratively develop an natural language (NL) web-based app tool using information learned from stakeholders on design and content, especially as it relates to the needs and usability for persons with dementia and/or their caregivers.