Experiences of living and dying with Lewy body dementia:A longitudinal narrative study

Background Lewy body dementia is a life-limiting condition with multiple, complex symptoms. As the condition progresses much of the caring and nursing duties fall to families. However, little is known about how people with Lewy body dementia and their families are affected by the condition. The overall aim of this thesis was to explore the experiences of people living with Lewy body dementia, and their family carers over time. An integrative systematic review of the literature was conducted. A convergent integrated design was applied to facilitate the synthesis of published research exploring the experiences of people living with Lewy body dementia and family carers. There was scarce qualitative evidence identified on the lived experience, with a predominant biomedical focus and cross-sectional designs. Methodology In order to gain unique insights into people’s experiences of living with Lewy body dementia a narrative methodology was chosen. A social constructionist approach influenced the research conducted, drawing from the psycho-social discipline and experience-centred narrative theory. The underpinning perspective was that knowledge and reality are socially produced, and humans’ understanding, and interpretations of their world occurs through stories. Method A longitudinal narrative study using three sequential interviews and life story work was completed to gain unique insights into five couples’ experiences of living with Lewy body dementia. Participants were recruited from memory clinics and the ‘Join Dementia Research’ database within the east of England. Narrative data were collected using dyadic narrative interviews with each couple over a six-month period (August 2019 – Februrary 2020). The analysis of the stories was conducted using Murray’s levels of narrative analysis in health psychology. Murray’s anaytical framework enabled stories to be analysed at the personal, interpersonal, positional, and societal level. Findings The main finding from this study was that the overarching narrative of ‘social connectedness’ was found to be important, and this continued over time. In this study, social connectedness represents a stepwise description of how a person is actively involved with others and their surroundings, leading to a sense of comfort and wellbeing. Seven stages of social connectedness were identified: maintaining social connections, developing new connections together, social disconnection, support from adult children, marital disconnection, connecting to health and social care, and emotionally separated but living together. Lack of social connectedness leads to social disconnection. Repeated losses over time resulted in difficulty in maintaining social connections giving rise to a reduced sense of agency. Loss of continence, energy, and independence, together with difficulty managing medications, significantly impacted on couples’ quality of life and ability to remain connected through all stages. Conclusion Maintaining a social life and support network was important for both people living with Lewy body dementia and family carers. The findings contribute to the methodological literature that gives voice to those living with dementia over time. They highlight how physical and personality changes, communication challenges, and behavioural difficulties, undermine established social connections. The stepwise diagrammatic representation of social connectedness provides guidance for more targeted healthcare interventions and management of Lewy body dementia

The E-mail is Down! Using a 1940s method to analyze a 21st century problem

Presented to the Communications Technology and Policy Division AEJMC 2002 Annual Convention Miami Beach, Florida Aug. 7-10, 2000.Includes bibliographical references.When the electronic mail system at a university crashed, researchers turned to a methodology developed more than 50 years earlier to examine its impact. Using a modified version of Bernard Berelson “missing the newspaper” survey questionnaire, student researchers collected qualitative comments from 85 faculty and staff members. Like the original, the study found extensive anxiety over the loss of the information source, plus a high degree of habituation and dependence on the new medium

Exploring the experiences of living with Lewy body dementia: An integrative review.

AIM: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. DESIGN: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. DATA SOURCES: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. REVIEW METHODS: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. RESULTS: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now - worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. CONCLUSION: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. IMPACT: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families

Advance care plans and hospitalized frail older adults: a systematic review.

INTRODUCTION: Frail older people are known to have low rates of advance care planning (ACP). Many frail patients prefer less aggressive treatment, but these preferences are often not known or respected. Frail patients often have multiple hospital admissions, potentially providing opportunities for ACP. OBJECTIVE: To systematically review the literature concerning ACP with frail older people in the acute hospital, with particular reference to: (1) Does ACP improve outcomes? (2) What are the views of patients, relatives and healthcare professionals regarding ACP? (3) Does ACP currently occur? (4) What are the facilitators and barriers to ACP? DESIGN: Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO and Embase databases from January 1990 to May 2019 inclusive. Studies in the acute setting of populations with a mean age >75 years, not focused on a disease-specific terminal condition were included. RESULTS: 16 133 articles were retrieved, 14 met inclusion criteria. No studies used an objective measure of frailty. One randomised controlled trial (RCT) found that ACP improves outcomes for older patients. Although 74%-84% of capacitous older inpatients are receptive to ACP, rates of ACP are 0%-5%; the reasons for this discrepancy have been little studied. The nature of ACP in clinical practice is unknown thus the extent to which it reflects the RCT intervention cannot be assessed. The outcomes that are important to patients are poorly understood and family and physician experiences have not been explored. CONCLUSIONS: A better understanding of this area could help to improve end-of-life care for frail older people. PROSPERO REGISTRATION NUMBER: CRD42017080246

Area-level unemployment and perceived job insecurity: evidence from a longitudinal survey conducted in the Australian working-age population

Research significance: Job insecurity, the subjective individual anticipation of involuntary job loss, negatively affects employees’ health and their engagement. Although the relationship between job insecurity and health has been extensively studied, job insecurity as an ‘exposure’ has received far less attention, with little known about the upstream determinants of job insecurity in particular. This research sought to identify the relationship between self-rated job insecurity and area-level unemployment using a longitudinal, nationally representative study of Australian households. Methods: Mixed-effect multi-level regression models were used to assess the relationship between area-based unemployment rates and self-reported job insecurity using data from a longitudinal, nationally representative survey running since 2001. Interaction terms were included to test the hypotheses that the relationship between area-level unemployment and job insecurity differed between occupational skill-level groups and by employment arrangement. Marginal effects were computed to visually depict differences in job insecurity across areas with different levels of unemployment. Results: Results indicated that areas with the lowest unemployment rates had significantly lower job insecurity (predicted value 2.74; 95% confidence interval (CI) 2.71–2.78, P < 0.001) than areas with higher unemployment (predicted value 2.81; 95% CI 2.79–2.84, P < 0.001). There was a stronger relationship between area-level unemployment and job insecurity among precariously and fixed-term employed workers than permanent workers. Conclusion: These findings demonstrate the independent influences of prevailing economic conditions, individual- and job-level factors on job insecurity. Persons working on a casual basis or on a fixed-term contract in areas with higher levels of unemployment are more susceptible to feelings of job insecurity than those working permanently

Sickness absence and psychosocial job quality: an analysis from a longitudinal survey of working Australians, 2005-2012

Sickness absence is associated with adverse health, organizational, and societal outcomes. Using data from a longitudinal cohort study of working Australians (the Household, Income and Labour Dynamics in Australia (HILDA) Survey), we examined the relationship between changes in individuals' overall psychosocial job quality and variation in sickness absence. The outcome variables were paid sickness absence (yes/no) and number of days of paid sickness absence in the past year (2005-2012). The main exposure variable was psychosocial job quality, measured using a psychosocial job quality index (levels of job control, demands and complexity, insecurity, and perceptions of unfair pay). Analysis was conducted using longitudinal fixed-effects logistic regression models and negative binomial regression models. There was a dose-response relationship between the number of psychosocial job stressors reported by an individual and the odds of paid sickness absence (1 adversity: odds ratio (OR) = 1.26, 95% confidence interval (CI): 1.09, 1.45 (P = 0.002); 2 adversities: OR = 1.28, 95% CI: 1.09, 1.51 (P = 0.002); â‰13 adversities: OR = 1.58, 95% CI: 1.29, 1.94 (P < 0.001)). The negative binomial regression models also indicated that respondents reported a greater number of days of sickness absence in response to worsening psychosocial job quality. These results suggest that workplace interventions aiming to improve the quality of work could help reduce sickness absence

Exploring the experiences of living with Lewy body dementia:An integrative review

Aim Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. Design Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. Data sources Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. Review Methods Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's ‘Weight of Evidence’ framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. Results Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now – worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. Conclusion Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. Impact This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families

Applying an Analytical Process to Longitudinal Narrative Interviews With Couples Living and Dying With Lewy Body Dementia

Narrative research methods invite people to share their experiences via storytelling. There is increasing interest as to how qualitative narrative inquiry can provide greater understanding into the lived experience around health and illness, particularly within the field of dementia. Narrative research is concerned with how humans make sense of and engage with the changes and disruptions of everyday life. However, narrative research is an emerging and evolving field with no single clearly defined approach to data analysis. In this article, we provide a methodological exemplar by applying Murray’s four levels of narrative analysis to longitudinal narrative interviews completed with couples living with Lewy body dementia. We describe how to analyse connections between the four levels and how to articulate this across different interview time points. This analysis process contributes to methodological knowledge by providing a strategy to connect the personal, interpersonal, positional and societal levels of analysis. The time taken for in-depth analysis of a co-created, dyadic longitudinal narrative approach requires careful consideration, but ultimately, it can provide a richer understanding of the lived experience, allowing for deeper social, clinical and academic insight

Particle-in-cell experiments examine electron diffusion by whistler-mode waves: 1. Benchmarking with a cold plasma

Using a particle-in-cell code, we study the diffusive response of electrons due to wave particle interactions with whistler-mode waves. The relatively simple configuration of field-aligned waves in a cold plasma is used in order to benchmark our novel method, and to compare with previous works that used a different modelling technique. In this boundary-value problem, incoherent whistler-mode waves are excited at the domain boundary, and then propagate through the ambient plasma. Electron diffusion characteristics are directly extracted from particle data across all available energy and pitch-angle space. The ‘nature’ of the diffusive response is itself a function of energy and pitch-angle, such that the rate of diffusion is not always constant in time. However, after an initial transient phase, the rate of diffusion tends to a constant, in a manner that is consistent with the assumptions of quasilinear diffusion theory. This work establishes a framework for future investigations on the nature of diffusion due to whistler-mode wave-particle interactions, using particle-in-cell numerical codes with driven waves as boundary value problems

Variability of Quasilinear Diffusion Coefficients for Plasmaspheric Hiss

In the outer radiation belt, the acceleration and loss of high‐energy electrons is largely controlled by wave‐particle interactions. Quasilinear diffusion coefficients are an efficient way to capture the small‐scale physics of wave‐particle interactions due to magnetospheric wave modes such as plasmaspheric hiss. The strength of quasilinear diffusion coefficients as a function of energy and pitch angle depends on both wave parameters and plasma parameters such as ambient magnetic field strength, plasma number density, and composition. For plasmaspheric hiss in the magnetosphere, observations indicate large variations in the wave intensity and wave normal angle, but less is known about the simultaneous variability of the magnetic field and number density. We use in situ measurements from the Van Allen Probe mission to demonstrate the variability of selected factors that control the size and shape of pitch angle diffusion coefficients: wave intensity, magnetic field strength, and electron number density. We then compare with the variability of diffusion coefficients calculated individually from colocated and simultaneous groups of measurements. We show that the distribution of the plasmaspheric hiss diffusion coefficients is highly non‐Gaussian with large variance and that the distributions themselves vary strongly across the three phase space bins studied. In most bins studied, the plasmaspheric hiss diffusion coefficients tend to increase with geomagnetic activity, but our results indicate that new approaches that include natural variability may yield improved parameterizations. We suggest methods like stochastic parameterization of wave‐particle interactions could use variability information to improve modeling of the outer radiation belt