The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers.

This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention "Online Life Story Book"; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8-10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.

Diversity of cancer-related identities in long-term prostate cancer survivors after radical prostatectomy.

BACKGROUND: Individuals affected by cancer need to integrate this experience into their personal biography as their life continues after primary therapy, leading to substantial changes in self-perception. This study identified factors uniquely associated with 5 different cancer-related identities in order to improve the understanding of how self-perception in men affected by prostate cancer is associated with certain clinical and psychosocial characteristics. METHODS: In this cross-sectional study, long-term prostate cancer survivors after radical prostatectomy were asked to choose one of 5 cancer-related identities that described them best. Associations with sociodemographic, clinical, and psychological variables were investigated using multivariable logistic regression. RESULTS: Three thousand three hundred forty-seven men (mean age 78.1 years) surveyed on average 15.6 years after prostatectomy were included. Most men favored the terms "someone who has had cancer" (43.9%) which was associated with a mild disease course, and "patient" (26.3%) which was associated with ongoing therapy and biochemical disease recurrence. The self-descriptions "cancer survivor" (16.8%), "cancer conqueror" (10.9%) and "victim" (2.1%) were less common. "Cancer survivor" was associated with high perceived disease severity (OR: 1.86 [1.44-2.40]). "Cancer survivor" and "cancer conqueror" were related to high benefit finding (OR: 1.89 [1.48-2.40], OR: 1.46 [1.12-1.89] respectively), and only "cancer conqueror" was associated with high well-being (OR: 1.84 [1.35-2.50]). Identification as "victim" was associated with a positive depression screening and low well-being (OR: 2.22 [1.15-4.31], OR: 0.38 [0.20-0.72] respectively) (all p < 0.05). CONCLUSIONS: Although long-term survival is common among men affected by PCa, they display a large diversity in cancer-related identities, which are associated with unique clinical and psychological characteristics. These cancer-related identities and their distinctive properties are associated with psychological well-being even after a long follow-up.

Writing cancer.

PURPOSE: Novels and autopathographies that employ cancer as a central theme offer a wealth of opportunities for researching the way patients with cancer make sense of their illness and its treatment. Such literatures can also inform clinical care, because they can support patients in living with their illness. The use of novels and autopathographies for research and care in persons with cancer fits within the framework of 'Health Humanities', the interdisciplinary field where medicine and social science meet. This paper presents a concise overview of novels and autopathographies that explore cancer as their theme. METHODS: Literature searches were conducted using PubMed, major scientific journals of medicine and clinical oncology, and databases in the Health Humanities. Searches focused on novels and autopathographies where cancer is the central theme, which are available in English, and which can be considered to represent 'high literature'. RESULTS: Twenty-nine books were identified. The majority of the books were written originally in English, and breast cancer and lung cancer were the most frequently discussed types of cancer. The core themes identified were giving meaning to illness; coping with medical treatment; and the psychological and social consequences of illness. CONCLUSION: Novels and autopathographies about cancer represent an innovative base for research on living with cancer and offer rich data on how people make sense of cancer and its medical treatment. Clinical implications of this review pertain to interventions based on bibliotherapy and expressive writing. Novels and autopathographies are just part of the Health Humanities context: a wide range of art genres may prove helpful in improving the quality of life of persons with cancer.

The Experience of the First World War in Wilfred Bion's Autobiographical Writings.

All his life, Wilfred Bion attempted to devise a narrative form for an account of the traumatic experiences he went through as a tank commander in the First World War. The body of his autobiographical works, which consists of texts written in different stages of his life and remain fragmentary, documents his desperate efforts to wrest a biography of his own from the most appalling tendencies of world history. As a whole, it testifies for and is the result of a lifelong attempt to understand something incomprehensible, to express something unspeakable, to restore something destroyed. It represents something akin to the primal history of the psychic catastrophe that Bion failed to escape from as long as he lived. The article first provides an overview of these autobiographical and literary writings against the background of a brief account of the external facts of Bion's life. It then undertakes a narrative analysis of the sequences in which Bion tries to find a narrative form for the arguably most terrible event of the entire war which not only was a deeply traumatic experience remaining with him throughout his life, but also resulted in what he felt to be his psychic death. Taken together, these sequences impressively show the painful work of gradually dissolving or at least coming to terms with the psychological catastrophe of a paralyzing trauma, the causes of which reach far beyond the individual and the private. The article sets out to contribute to the still unwritten inquiry into the genetic context in which Bion's autobiographical, literary, and theoretical writings figure, together with the concepts and writing strategies embodied in them.

Loneliness as a Biographical Disruption-Theoretical Implications for Understanding Changes in Loneliness.

OBJECTIVES: While a great deal is known about the risk factors that increase vulnerability to loneliness in later life, little research has explored stability and change in levels of loneliness. METHODS: Narrative interviews were conducted with 11 participants who were identified as being lonely during Wave 1 of the Maintaining Function and Well-being in Later Life Study Wales (CFAS Wales). The interviews were used to explore stability and change in levels of loneliness from the perspective of older people themselves. The interviews focused on participant's perspectives of the events that triggered loneliness, stability, and change in levels of loneliness over time as well as participant's responses to loneliness. RESULTS: The findings show that participants experienced losses and loneliness as biographical disruption. How participants and their wider social network responded to these losses had implications for the individual's trajectory through loneliness. DISCUSSION: Drawing on a biographical lens, the study reframed the events that triggered loneliness as disruptive events. This article discusses the utility of biographical disruption in understanding stability and change in loneliness. The findings suggest how drawing on valued identities may help lonely adults transition out of loneliness.

Life and Times in Engineering and Chemical Engineering.

John Davidson was widely recognized as the founding father of fluidization in chemical engineering. He was a great thinker and had a tremendous ability to distill complicated problems into much simpler concepts. Much of his thinking was set out, along with that of his coauthor David Harrison, in their book Fluidised Particles, first published in 1963, a book that is still used today. John was still coming into his office in Cambridge until the very last weeks of his life, where he continued to work with final-year undergraduates and graduate students. Fluidization, and two-phase flows, continued to fascinate him, and that enthusiasm was transmitted to those around him. The following article was the last work that he wrote and was very much a reflection on his life and career. John passed away on Christmas Day 2019, with the article in its final stages of preparation.

Recurrent involuntary autobiographical memories: characteristics and links to mental health status.

Memories of events from one's personal past that come to mind unintentionally and effortlessly are termed involuntary autobiographical memories (IAMs). Recurrent IAMs are known as relevant to many disorders within clinical literature. However, less is known about their links with mental health status in the general population. In the current study, 2184 undergraduate students completed surveys assessing occurrence of any recurrent IAMs. Participants also wrote a description of their most frequently recurring IAM and rated it on phenomenological characteristics, such as frequency, valence, vividness, and centrality. Results showed that the majority of our sample experienced recurrent IAMs, replicating previous findings, but most of these memories were emotionally negative, unlike past work. Importantly, negative recurrent IAMs were associated with significantly more mental health concerns, including symptoms of depression, anxiety, and posttraumatic stress. We also found that frequency of IAM recurrence was predicted by the memory's age, level of completeness/detail, emotional intensity, and centrality to one's life story. Further, descriptions of positive recurrent IAMs contained significantly more episodic detail compared to negative or neutral ones, suggesting that emotional regulation may play a role in how recurrent IAMs are recounted. Recurrent IAMs, and their characteristics, serve as a window into mental health status.

Adopting a fictitious autobiography: fabrication inflation or deflation?

In the present experiment, we examined whether adopting a fictitious biography would make participants believe in this autobiography. Participants were split up into two conditions: forced confabulation condition and control condition. The forced confabulation condition received a snippet with the fake biography and had to adopt it through several methods (i.e., method acting, journaling, and convincing experimenters in an interview) over an extended period of time. The control condition was told that they partook in an experiment about personal childhood memories. Before, during and after lying participants completed four Life Event Inventories (LEI). Results revealed that after coming forward with the truth participants did not increase nor decrease their belief for the lied about events. Additionally, even after a one-year delay, we found no evidence for either effect. Our findings suggest that more extreme forms of fabrication do not make people believe in their lies.

Classification of general and personal semantic details in the Autobiographical Interview.

The Autobiographical Interview (AI) separates internal (episodic) and external (non-episodic) details from transcribed protocols using an exhaustive and reliable scoring system. While the details comprising the internal composite are centered on elements of episodic memory, external details are more heterogeneous as they are meant to capture a variety of non-episodic utterances: general semantics, different types of personal semantics details, metacognitive statements, repetitions, and details about off topic events. Elevated external details are consistently observed in aging and in neurodegenerative diseases. In the present study, we augmented the AI scoring system to differentiate subtypes of external details to test whether the elevation of these details in aging and in frontotemporal lobar degeneration (including mixed frontotemporal/semantic dementia [FTD/SD] and progressive non-fluent aphasia [PNFA]) would be specific to general and personal semantics or would concern all subtypes. Specifically, we separated general semantic details from personal semantic details (including autobiographical facts, self-knowledge, and repeated events). With aging, external detail elevation was observed for general and personal semantic details but not for other types of external details. In frontotemporal lobar degeneration, patients with FTD/SD (but not PNFA) generated an excess of personal semantic details but not general semantic details. The increase in personal but not general semantic details in FTD/SD is consistent with prevalent impairment of general semantic memory in SD, and with the personalization of concepts in this condition. Under standard AI instructions, external details were intended to capture off-topic utterances and were not intended as a direct measure of semantic abilities. Future investigations concerned with semantic processing in aging and in dementia could modify standard instructions of the AI to directly probe semantic content.

A ChemE Grows in Brooklyn.

I profile my personal and professional journey from being a girl of the 1950s, with expectations typical for the times, to a chemical engineering professor and still-enthusiastic researcher. I describe my family, my early education, my college and graduate school training in physics, my postdoc years in chemistry, and my subsequent transformation into a chemical engineering faculty member-one of the first women to be appointed to a chemical engineering faculty in the United States. I focus on the events that shaped me, the people who noticed and supported me, and the environment for women scientists and engineers in what some would call the "early days." My initial research activities centered on applications of statistical mechanics to predict phase equilibria in simple systems. Over time, my interests evolved to focus on applying molecule-level computer simulations to systems of interest to chemical engineers, e.g., hydrocarbons and polymers. Eventually, spurred on by my personal interest in amyloid diseases and my wish to make a contribution to human health, I turned to more biologically oriented problems having to do with protein aggregation and protein design. I give a candid assessment of my strengths and weaknesses, successes and failures. Finally, I share the most valuable lessons that I have learned over a lifetime of professional and personal experience.

Sphingosine-1-phosphate: From insipid lipid to a key regulator.

It is a great honor to be asked to write a "Reflections" article by one of the true icons of biochemistry, Herb Tabor. I felt humbled, especially since it follows many written by biochemists I admire and whose contributions have shaped major advances in biochemistry and molecular biology in the last century. Here I present my personal reflections on my adventure with the bioactive sphingolipid metabolite sphingosine-1-phosphate intertwined with those of my family life as a wife, mother, and grandmother. These reflections brought back many memories of events in my early career that played significant roles in determining the path I have taken for more than 40 years and that brought much fun and satisfaction into my life. It has been an exciting journey so far, with many surprises along the way, that still continues.

An Autoethnographic Account of a Bicultural Clinician-Researcher Applying New Evidence of Chinese Diabetes Education Into Practice.

Introduction: A clinician-researcher in translational research fulfils obligations in care provision and knowledge generation. Similarly, a bicultural clinician could struggle to switch between cultural paradigms. The purpose of this study was to explore the in-depth experience of multiple roles as a bicultural clinician-researcher in a translational research study. Methods: This study employed an autoethnographical method, where the first author, an Australian-trained Chinese researcher, was the research instrument who critically sought understanding of her experience in relation to culture in the context of translating an evidence-based culturally tailored Chinese diabetes education program into practice. Data were thematically analyzed and triangulated. Results: Specific research-to-practice dilemmas and personal and professional growth experiences were encountered. Learning to be flexible in addressing patients' needs while concurrently collecting program evaluation data was complicated by self-doubt and inflexible colleagues. Implication: Despite challenges, conducting translational research with clinician-researcher can enhance understanding of the different stakeholder cultures, promoting rapid practice change.

"Los libros y la noche", perspectiva neurológica de la ceguera de Jorge Luis Borges.

The works of Argentinian scholar Jorge Luis Borges (1899-1986) have captivated physicians. An assiduous reader, he was given, with magnificent irony, "books and the night". Borges suffered from chronic and irreversible blindness, which influenced much of his work and has been the subject of different literary and diagnostic analyses from the ophthalmological point of view. However, the characteristics of his visual impairment have escaped the neurological approach, which is why we reviewed his work looking for data suggesting a concomitant brain injury. On his autobiography, he recounts how, during an episode of septicemia, he suffered hallucinations and loss of speech; in addition, in some poems and essays he describes data that suggest "phantom chromatopsia", a lesion of cortical origin. After that accident, Borges survived with a radical change in literary style. Although a precise diagnosis is impossible, his literary work allows recognizing some elements in favor of concomitant brain involvement.

La obra del erudito argentino Jorge Luis Borges (1899-1986) ha cautivado a los médicos. Asiduo lector con magnífica ironía, le fueron dados "los libros y la noche". Borges padeció una ceguera crónica e irreversible que impulsó gran parte de su obra y ha sido objeto de distintos análisis literarios y diagnósticos desde el punto de vista oftalmológico. Sin embargo, las características de su ceguera han escapado al abordaje neurológico, por lo cual revisamos su obra en busca de datos que sugieran una lesión cerebral concomitante. En su autobiografía relata cómo durante un episodio de septicemia padeció alucinaciones y pérdida del habla; además, en algunos poemas y ensayos describe datos que sugieren "cromatopsia fantasma", lesión de origen cortical. Tras dicho accidente, Borges sobrevivió con un cambio radical en su estilo literario. Aunque un diagnóstico preciso es imposible, su obra literaria nos permite reconocer algunos elementos que sugieren involucramiento cerebral concomitante.