scholarly journals 403 - Episodes of lucidity (paradoxical lucidity): A survey of family caregivers of persons with dementia

2021 ◽  
Vol 33 (S1) ◽  
pp. 30-30
Author(s):  
Joan M. Griffin ◽  
Kyungmin Kim ◽  
Theresa Frangiosa ◽  
Virginia S. Biggar ◽  
Dawn M. Finnie ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Scientific Explanation ◽  
Well Being ◽  
Operational Definition ◽  
Care Recipient ◽  
Cognitive Capacity ◽  
Future Research ◽  
Transient Nature ◽  
Definition Of ◽  
Late Stages

Abstract:People with late-stage Alzheimer’s disease and related dementias (ADRD) who are assumed to have lost coherent cognitive capacity may exhibit unexpected episodes of spontaneous, meaningful, and relevant communication or behavior. Most reports of paradoxical lucidity or “episodes of lucidity” (EL) are anecdotal or case studies. Given the transient nature and lack of scientific explanation of the phenomenon, EL is under-investigated and poorly understood.To develop an operational definition of and typologies for EL, we conducted a pilot study of former and current family caregivers from UsAgainstAlzheimer’s A-LIST® (N = 480). Over sixty percent of caregivers (n = 294, 61%) reported witnessing at least one EL with their care recipient over the course of dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted <30 minutes. About half the episodes were characterized by uncharacteristic speech and communication. Caregivers perceived these experiences positively (M = 4.1; range = 1–5), but also expressed desire to know why/when EL occurs and how to respond to it.We plan to use these data to refine definitions and typologies to incorporate into a prospective, demographically diverse survey to family caregivers to assess predictors of EL and linking EL to caregiver well-being and bereavement response. Precise and robust operationalizations of EL will allow future research to assess if EL has different effects on ADRD prognosis or alters how family members understand, manage and adapt to a PLWD’s dementia progression.

scholarly journals Early Descriptions of Family Caregivers' Experiences With Unexpected Lucidity

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 47-47
Author(s):  
Kyungmin Kim ◽  
Joan Griffin ◽  
Lauren Bangerter ◽  
Virginia Biggar ◽  
Dawn Finnie ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Operational Definition ◽  
Cross Sectional Study ◽  
Care Recipient ◽  
Sectional Study ◽  
Cross Sectional ◽  
Definition Of ◽  
Late Stages

Abstract To develop an operational definition of and typologies for episodes of lucidity (EL), we conducted a cross-sectional study of former/current family caregivers from UsAgainstAlzheimer’s A_LIST (N = 538). More than 60% of caregivers (n = 294, 62%) reported witnessing EL with their care recipient over the course of their dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted &lt;30 minutes. About half the episodes were characterized by uncharacteristic speech and communication. Caregivers perceived these experiences positively (M = 4.10; range = 1–5), but also expressed desire to know why/when EL occurs and how to best respond to it. Data will be used to refine definitions and typologies, and then a prospective, demographically diverse survey will be administered to family caregivers to assess predictors of EL, linking EL to caregiver well-being and bereavement response.

scholarly journals Advancing the Science on Unexpected Episodes of Clarity and Lucidity in People With Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 47-47
Author(s):  
Joan Griffin ◽  
Basil Eldadah
Keyword(s):  
Scientific Understanding ◽  
Care Recipient ◽  
Cognitive Capacity ◽  
Future Research ◽  
Evidence Based ◽  
Transient Nature ◽  
People With Dementia ◽  
Methodological Approaches ◽  
Underlying Mechanisms ◽  
Scientific Attention

Abstract People with late-stage Alzheimer’s disease and related dementias (ADRD) have been reported, largely by way of anecdote, to exhibit unexpected episodes of spontaneous, meaningful, and relevant communication or behavior. These episodes of lucidity (EL) are characterized by spontaneous mental clarity in people living with dementia (PLWD) who are assumed to have lost coherent cognitive capacity. Given the transient nature and limited understanding of underlying mechanisms responsible for this phenomenon, these episodes are frequently overlooked and have received little scientific attention. Few studies have documented EL among PLWD with precision; scientific understanding is limited to anecdotes and case studies, which have not operationalized EL. Thus, there is a critical need for an evidence-based understanding and systematic operationalization of EL. Precise and robust operationalizations of EL will allow future research to assess if EL has different effects on ADRD prognosis or alters how family members manage and adapt to ADRD progression in their care recipient. The National Institute on Aging (NIA) has funded six studies to advance the scientific understanding of EL in dementia. These studies use a variety of methodological approaches to capture EL experiences, and together, they will provide evidence-based operational definitions of EL, novel approaches for measurement of this phenomenon, and estimates of its prevalence. This symposium will provide an overview of the funded studies and three different methodological approaches that are being used to better operationalize and understand EL.

scholarly journals Assessment of Course-Based Undergraduate Research Experiences: A Meeting Report

2014 ◽  
Vol 13 (1) ◽  
pp. 29-40 ◽  
Author(s):  
Lisa Corwin Auchincloss ◽  
Sandra L. Laursen ◽  
Janet L. Branchaw ◽  
Kevin Eagan ◽  
Mark Graham ◽  
...  
Keyword(s):  
Undergraduate Research ◽  
Biology Education ◽  
Operational Definition ◽  
Future Research ◽  
Meeting Report ◽  
Research Experience ◽  
Research Experiences ◽  
Undergraduate Research Experiences ◽  
Foundation Program ◽  
Definition Of

The Course-Based Undergraduate Research Experiences Network (CUREnet) was initiated in 2012 with funding from the National Science Foundation program for Research Coordination Networks in Undergraduate Biology Education. CUREnet aims to address topics, problems, and opportunities inherent to integrating research experiences into undergraduate courses. During CUREnet meetings and discussions, it became apparent that there is need for a clear definition of what constitutes a CURE and systematic exploration of what makes CUREs meaningful in terms of student learning. Thus, we assembled a small working group of people with expertise in CURE instruction and assessment to: 1) draft an operational definition of a CURE, with the aim of defining what makes a laboratory course or project a “research experience”; 2) summarize research on CUREs, as well as findings from studies of undergraduate research internships that would be useful for thinking about how students are influenced by participating in CUREs; and 3) identify areas of greatest need with respect to CURE assessment, and directions for future research on and evaluation of CUREs. This report summarizes the outcomes and recommendations of this meeting.

scholarly journals An Integrative Literature Review on the Nomenclature and Definition of Dementia at a Young Age

2021 ◽  
pp. 1-26
Author(s):  
Dennis van de Veen ◽  
Christian Bakker ◽  
Kirsten Peetoom ◽  
Yolande Pijnenburg ◽  
Janne M. Papma ◽  
...  
Keyword(s):  
Symptom Onset ◽  
Operational Definition ◽  
Young Age ◽  
Future Research ◽  
International Consensus ◽  
Young Onset ◽  
Age Related ◽  
Young Onset Dementia ◽  
Age Limits ◽  
Definition Of

Background: There has been growing interest in young people living with dementia. Future research requires consensus on the terminology and operational definition of this group. Objective: The purpose of this integrative review was to explore and include all operational definitions used to define dementia at a young age. Methods: On August 14, 2020, the PubMed, Embase, Cinahl, and PsycInfo databases were searched for empirical and theoretical literature using Google. Various terms to describe and define ‘dementia’ and ‘at a young age’ were used to collect literature concerning terminology; age-related aspects, including cut-off ages and criteria; and etiologies of dementia at a young age. Results: The search yielded 6,891 empirical and 4,660 theoretical publications, resulting in the inclusion of 89 publications, including 36 publications containing an explicit discussion and 53 publications as confirmation. ‘Young-onset dementia’ was the most commonly used term of seven identified terms, in the last two decades. The age of 65 years at symptom onset was used most frequently when considering a total of six upper age limits and four criteria to define a cut-off age. Eight lower age limits and an option for subdivision based on age were included. We identified 251 different etiologies and 27 categories of etiologies. Conclusion: Despite relative consensus on the term young-onset dementia and an age at symptom onset being used as a cut-off criterion, much is still unclear concerning possible etiologies of dementia at a young age. In the current study, controversies were detected for discussion in an international consensus study.

Psychosocial Care for Family Caregivers of Patients With Cancer

2012 ◽  
Vol 30 (11) ◽  
pp. 1227-1234 ◽  
Author(s):  
Laurel Northouse ◽  
Anna-leila Williams ◽  
Barbara Given ◽  
Ruth McCorkle
Keyword(s):  
Family Caregivers ◽  
Sleep Disturbances ◽  
Well Being ◽  
Future Research ◽  
Care Practice ◽  
Physical And Mental Health ◽  
Policy And Practice ◽  
Patients With Cancer ◽  
Cancer Support ◽  
Recommendations For Practice

Purpose To understand family caregivers' needs for better preparation and care, this state-of-the-science review examines the effect of caregiving on the health and well-being of caregivers, the efficacy of research-tested interventions on patient and caregiver outcomes, implications of the research on policy and practice, and recommendations for practice and future research. Methods We reviewed research that described the multiple effects of cancer on caregivers' well-being. Five meta-analyses were analyzed to determine the effect of interventions with caregivers on patient and caregiver outcomes. In addition, we reviewed legislation such as the Affordable Care Act and the Family Leave Act along with current primary care practice to determine whether family caregivers' needs have been addressed. Results Research findings indicate that caregiver stress can lead to psychological and sleep disturbances and changes in caregivers' physical health, immune function, and financial well-being. Research-tested interventions delivered to caregivers of patients with cancer or other chronic illnesses can reduce many of these negative effects and improve caregivers' coping skills, knowledge, and quality of life. Although these interventions also decrease patients' symptoms, reduce mortality (non-dementia patients), and improve patients' physical and mental health, they are seldom implemented in practice. Conclusion Recommendations for practice include development of standardized guidelines that address caregiver assessment, education, and resources; identification of “caregiver champions” in practice settings; provision of referrals to established support organizations for caregivers (eg, Cancer Support Community, Cancer Care); and collaboration among caregiving, professional, and cancer-related organizations to advocate policy and practice changes for family caregivers.

scholarly journals Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review

2017 ◽  
Vol 29 (8) ◽  
pp. 1281-1296 ◽  
Author(s):  
Jacki Stansfeld ◽  
Charlotte R. Stoner ◽  
Jennifer Wenborn ◽  
Myrra Vernooij-Dassen ◽  
Esme Moniz-Cook ◽  
...  
Keyword(s):  
Systematic Review ◽  
Positive Psychology ◽  
Quality Assessment ◽  
Psychometric Properties ◽  
Family Caregivers ◽  
Outcome Measures ◽  
Well Being ◽  
Positive Outcome ◽  
Future Research ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice.Method:A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties.Results:Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory.Conclusions:There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.

scholarly journals For a Definition of Gratitude, in Order to Study its Correlation with Well-being and Self Transcendence

2020 ◽  
Vol 14 (14) ◽  
pp. 89-98
Author(s):  
Sheena Necole McMahon
Keyword(s):  
Coping Skills ◽  
Well Being ◽  
Personality Characteristics ◽  
Future Research ◽  
Measurement Tools ◽  
Research Questions ◽  
Self Transcendence ◽  
Definition Of ◽  
Trait Gratitude ◽  
Insight Into

This paper provides a definition for gratitude and for trait gratitude. It also describes several useful measurement tools to study gratitude and states how gratitude relates to personality characteristics. In addition, current gratitude research is reviewed and future research questions are proposed. Not only is gratitude associated with well-being but also with sleep quality, dematerialization, social skills, coping skills, and spirituality. An advanced understanding of this emotion and/or affective trait could provide insight into how to live a happy, productive, and fulfilling life. KEYWORDS Gratitude, wellbeing, behavior, mindfulness, optimism.

scholarly journals Sources of Positivity in the Daily Life of Family Caregivers of Persons with Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 655-655
Author(s):  
Kyungmi Lee ◽  
Breannlyn Archer ◽  
Kaitlyn Cox ◽  
Carolyn Pickering
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Daily Life ◽  
Secondary Analysis ◽  
Well Being ◽  
Care Recipient ◽  
Daily Diaries ◽  
Positive Aspects Of Caregiving ◽  
Health Complications

Abstract Family caregivers often experience fatigue, burnout, and health complications yet also enjoy many aspects of caregiving that may benefit their well-being. This study identifies positive aspects of caregiving in the daily life experiences of dementia family caregivers in order to inform interventions to support caregivers’ well-being. This case study entails a secondary analysis of open-ended question data obtained from 165 family caregivers who answered daily diaries over 21 days (n = 2841 responses). We used content analysis to organize and elicit thematic categories from the data collected in response to the question “what was the best part of your day.” A final 762 responses were selected as meeting the “care” criteria for the study, with an inter-rater reliability of 91.6%. Data analysis revealed three major sources of daily positive aspects including: caregiver-focused, patient-oriented, and support-system based. The analysis also revealed seven different kinds of daily positive aspects, such as getting to enjoy time with the care recipient or getting to accomplish other non-caregiving tasks. Many of the positive aspects of caregiving reported were enabled by social support, but they were ultimately from how they utilized that support (e.g., getting alone time) that provided the positivity. The findings of this study demonstrate the important role social support plays in caregiving, as well as highlights other possible intervention targets to create easier, more positive days for family caregivers.

Evaluation Use Theory, Practice, and Future Research: Reflections on the Alkin and King AJE Series

2020 ◽  
Vol 41 (4) ◽  
pp. 581-602
Author(s):  
Michael Quinn Patton
Keyword(s):  
Theory Development ◽  
Operational Definition ◽  
Future Research ◽  
Complex Dynamic ◽  
Evaluation Use ◽  
Research On Evaluation ◽  
Complex Dynamic Systems ◽  
Definition Of ◽  
Context Specific ◽  
Future Theory

Marvin Alkin and Jean King published three AJE articles on evaluation use over four years, a coherent and comprehensive series covering the historical development of evaluation use, definitions and factors associated with use and misuse, and theories of evaluation use and influence, concluding with assessment of the first 50 years of use research. They conclude with recommendations for future theory development and research on evaluation. I draw a different set of conclusions and pathway forward. Where they seek a common universal operational definition of evaluation use, I propose treating use as a thick sensitizing concept that invites diversity of context-specific meanings. Where they find evaluation use theory inadequate, I argue that it is sufficient for its purpose. Where they seek more development of evaluation-specific utilization theory, I propose drawing on more established and validated theories from social sciences to explain and illuminate evaluation use as occurring in complex dynamic systems.

Revisiting MMORPGs in Support of Learning

2019 ◽  
pp. 187-214
Author(s):  
Bodi Anderson
Keyword(s):  
Empirical Studies ◽  
Role Playing ◽  
Operational Definition ◽  
Future Research ◽  
Educational Benefits ◽  
Role Playing Games ◽  
Player Game ◽  
Recent Trends ◽  
Definition Of ◽  
Education Psychology

This enhanced chapter revisits a previous literature analysis of research on the potential educational benefits of the use of massive multiplayer online role playing games (MMORPG) by considering both changes in the medium itself and recent trends in research. Initially, a working operational definition of MMORPGs in education is considered in light of research to date with a focus on how MMORPGs differ from most video games in terms of types of player-game interaction, levels of player-player interaction, and environments in which interaction occurs. Next considering previous and current theoretical and empirical studies on MMORPGs from a variety of disciplines, including education, psychology, and linguistics, a conceptual framework for the use of MMORPGs in support of learning is created. Finally, an overview of current research trends in MMORPGs is provided, concluding with suggestions concerning future research of the use of MMORPGs in support of learning.

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