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 <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 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 A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 301-318 ◽  
Author(s):  
Wilson Abreu ◽  
Debbie Tolson ◽  
Graham A Jackson ◽  
Nilza Costa
Keyword(s):  
Psychological Distress ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Well Being ◽  
Cross Sectional Study ◽  
Functional Dependency ◽  
Advanced Dementia ◽  
Sectional Study ◽  
Cross Sectional ◽  
People With Dementia

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p < .01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

Conflict Avoidance in Old Age

GeroPsych ◽  
2017 ◽  
Vol 30 (2) ◽  
pp. 61-70 ◽  
Author(s):  
Lia Oberhauser ◽  
Andreas B. Neubauer ◽  
Eva-Marie Kessler
Keyword(s):  
Social Support ◽  
Perceived Social Support ◽  
Well Being ◽  
Cross Sectional Study ◽  
Conflict Avoidance ◽  
Subjective Well Being ◽  
Sectional Study ◽  
Cross Sectional ◽  
Adult Lifespan ◽  
Set Up

Abstract. Conflict avoidance increases across the adult lifespan. This cross-sectional study looks at conflict avoidance as part of a mechanism to regulate belongingness needs ( Sheldon, 2011 ). We assumed that older adults perceive more threats to their belongingness when they contemplate their future, and that they preventively react with avoidance coping. We set up a model predicting conflict avoidance that included perceptions of future nonbelonging, termed anticipated loneliness, and other predictors including sociodemographics, indicators of subjective well-being and perceived social support (N = 331, aged 40–87). Anticipated loneliness predicted conflict avoidance above all other predictors and partially mediated the age-association of conflict avoidance. Results suggest that belongingness regulation accounts may deepen our understanding of conflict avoidance in the second half of life.

scholarly journals Knowledge and Practice of Health Professionals in the Management of Dysphagia

2021 ◽  
Vol 18 (4) ◽  
pp. 2139
Author(s):  
Eduardo Sánchez-Sánchez ◽  
Ylenia Avellaneda-López ◽  
Esperanza García-Marín ◽  
Guillermo Ramírez-Vargas ◽  
Jara Díaz-Jimenez ◽  
...  
Keyword(s):  
Healthcare Providers ◽  
Cross Sectional Study ◽  
Clinical Settings ◽  
Sectional Study ◽  
Swallowing Disorder ◽  
Cross Sectional ◽  
Anonymous Questionnaire ◽  
Knowledge And Practice ◽  
Definition Of ◽  
Management Of Dysphagia

The aim of this study was to determine healthcare providers’ knowledge and practices about dysphagia. A descriptive cross-sectional study was carried out based on a self-administered and anonymous questionnaire addressed to healthcare providers in Spain. A total of 396 healthcare providers participated in the study. Of these, 62.3% knew the definition of dysphagia as a swallowing disorder. In addition, up to 39.2% of the participants reported that they did not know whether the EatingAssessmentTool (EAT-10) dysphagia screening test was usedin their own clinical settings. Similarly, up to 49.1% of them did not know the ClinicalExaminationVolume-Viscosity (MECV-V) method. Nearly all participants (98.8%) reported that thickeners must be used forall liquids administered to patients. A higher percentage of respondents based the choice of texture on patient’s tolerance (78.2%) rather than on the MECV-V result (17.3%). In addition,76.4% of the professionals had witnessed a bronchoaspiration; after it, 44.4% (n = 175) of them reported the appearance of pneumonia, and 14.5% (n = 57) the death of the patient (p = 0.005). The participants revealeda moderate/low knowledge ofthe definition, diagnosis, and clinical management of liquid dysphagia, which indicates some room for improvements.

scholarly journals Gut Microbiome Composition Remains Stable in Individuals with Diabetes-Related Early to Late Stage Chronic Kidney Disease

Biomedicines ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 19
Author(s):  
Ashani Lecamwasam ◽  
Tiffanie M. Nelson ◽  
Leni Rivera ◽  
Elif I. Ekinci ◽  
Richard Saffery ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Relative Abundance ◽  
Cross Sectional Study ◽  
Early Event ◽  
Sectional Study ◽  
Cross Sectional ◽  
Microbiome Composition ◽  
Stool Samples ◽  
Late Stages

(1) Background: Individuals with diabetes and chronic kidney disease display gut dysbiosis when compared to healthy controls. However, it is unknown whether there is a change in dysbiosis across the stages of diabetic chronic kidney disease. We investigated a cross-sectional study of patients with early and late diabetes associated chronic kidney disease to identify possible microbial differences between these two groups and across each of the stages of diabetic chronic kidney disease. (2) Methods: This cross-sectional study recruited 95 adults. DNA extracted from collected stool samples were used for 16S rRNA sequencing to identify the bacterial community in the gut. (3) Results: The phylum Firmicutes was the most abundant and its mean relative abundance was similar in the early and late chronic kidney disease group, 45.99 ± 0.58% and 49.39 ± 0.55%, respectively. The mean relative abundance for family Bacteroidaceae, was also similar in the early and late group, 29.15 ± 2.02% and 29.16 ± 1.70%, respectively. The lower abundance of Prevotellaceae remained similar across both the early 3.87 ± 1.66% and late 3.36 ± 0.98% diabetic chronic kidney disease groups. (4) Conclusions: The data arising from our cohort of individuals with diabetes associated chronic kidney disease show a predominance of phyla Firmicutes and Bacteroidetes. The families Ruminococcaceae and Bacteroidaceae represent the highest abundance, while the beneficial Prevotellaceae family were reduced in abundance. The most interesting observation is that the relative abundance of these gut microbes does not change across the early and late stages of diabetic chronic kidney disease, suggesting that this is an early event in the development of diabetes associated chronic kidney disease. We hypothesise that the dysbiotic microbiome acquired during the early stages of diabetic chronic kidney disease remains relatively stable and is only one of many risk factors that influence progressive kidney dysfunction.

scholarly journals Zellweger spectrum disorder: A cross-sectional study of symptom prevalence using input from family caregivers

2020 ◽  
Vol 25 ◽  
pp. 100694
Author(s):  
Mousumi Bose ◽  
David D. Cuthbertson ◽  
Marsha A. Fraser ◽  
Jean-Baptiste Roullet ◽  
K. Michael Gibson ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Cross Sectional Study ◽  
Spectrum Disorder ◽  
Sectional Study ◽  
Cross Sectional ◽  
Symptom Prevalence ◽  
Zellweger Spectrum Disorder

scholarly journals Development and validation of a Japanese version of the Patient Centred Assessment Method and its user guide: a cross-sectional study

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e037282
Author(s):  
Rieko Mutai ◽  
Yoshifumi Sugiyama ◽  
Shuhei Yoshida ◽  
Ryoko Horiguchi ◽  
Takamasa Watanabe ◽  
...  
Keyword(s):  
Primary Care ◽  
Factor Analysis ◽  
Japanese Version ◽  
Well Being ◽  
Cross Sectional Study ◽  
Assessment Method ◽  
Sectional Study ◽  
Cross Sectional ◽  
Vas Scores ◽  
Patient Complexity

ObjectivesThe primary objective of this study was to develop the Japanese version of the Patient Centred Assessment Method (PCAM) and its user guide. The secondary objective was to examine the validity and reliability in the primary care setting.DesignCross-sectional study.SettingThree family physician teaching clinics located in urban residential areas in Tokyo, Japan.ParticipantsPatients who were aged 20 years or older, and who had an appointment with physicians at the three participating clinics.Main outcome measuresPatient complexity measured by PCAM and complexity/burden level measured by a Visual Analogue Scale (VAS).ResultsAlthough confirmatory factor analysis using a model described in a previous study revealed that the indices did not meet the criteria for good fit, exploratory factor analysis revealed a new three-factor structure of ‘Personal well-being,’ ‘Social interaction’ and ‘Needs for care/service.’ Cronbach’s alpha of PCAM was 0.86. Spearman’s rank correlation coefficients between PCAM scores and VAS scores were 0.51 for complexity (p<0.001) and 0.41 for burden (p<0.001). There were 42 patients (14.3% of total patients) with PCAM scores greater than its mean of 16.5 but with complexity VAS scores less than its mean of 20.8.ConclusionsThe Japanese version of PCAM and its user guide were developed through Japanese translation and cultural adaptation by cognitive debriefing. PCAM is a valid and reliable tool to assess patient complexity in the primary care settings in Japan. Additionally, although the correlation between total PCAM scores and complexity/burden as assessed by VAS was moderate, PCAM can more precisely identify patient complexity than skilled physician’s intuition.

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