Supporting Resilience of Older Adults with Cognitive Decline Requires a Multi-Level System Approach.

The concept of resilience, i.e., the capacity of a system to bounce back after a stressor, is gaining interest across many fields of science, policy, and practice. To date, resilience research in people with cognitive decline has predominantly addressed the early stages of decline. We propose that: (1) resilience is a relevant concept in all stages of cognitive decline; and (2) a socio-ecological, multisystem perspective on resilience is required to advance understanding of, and care and support for people with cognitive decline and their support networks. We substantiate our position with literature and examples. Resilience helps understand differences in response to risk factors of (further) cognitive decline and informs personalised prevention. In a curative context, interventions to strengthen resilience aim to boost recovery from cognitive decline. In care for people with dementia, resilience-focused interventions can strengthen coping mechanisms to maintain functioning and well-being of the individual and their support network. A good example of improving resilience in the social and policy context is the introduction of age-friendly cities and dementia-friendly communities. Good care for people with cognitive decline requires a health and social care system that can adapt to changes in demand. Given the interdependency of resilience at micro-, meso- and macro-levels, an integrative socio-ecological perspective is required. Applying the concept of resilience in the field of cognitive decline opens new horizons for research to improve understanding, predicting, intervening on health and social care needs for the increasing population with cognitive decline.

Frontstage nursing and backstage growth: The emotional labour of student nurses in Dutch nursing homes.

The complex emotional work of nurses calls for more recognition of emotional labour and the incorporation of emotional labour in nursing education. Based on participant observation and semistructured interviews, we describe the experiences of student nurses in two nursing homes for elderly people with dementia in the Netherlands. We analyse their interactions using Goffman's dramaturgical view on the front and backstage behaviour and the distinction between surface acting and deep acting. The study reveals the complexity of emotional labour, as nurses swiftly adapt their communication styles and behavioural strategies between settings, patients, and even between moments within one interaction sequence, which shows that the theoretical binaries fail to fully capture their skills. Although student nurses take pride in their emotionally taxing work, the societal undervaluation of the nursing profession negatively impacts their self-image and ambitions. More explicit recognition of these complexities would enhance their self-appreciation. This calls for a professional 'backstage area' that allows nurses to articulate and strengthen their emotional labour skills. Educational institutions should provide this backstage for nurses-in-training to strengthen these skills as part of the professional skill set.

A Captive, a Wreck, a Piece of Dirt: Aging Anxieties Embodied in Older People With a Death Wish.

The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological-hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.

[The diagnostic disclosure of dementia: an ethnographic exploration]. / Het uitslaggesprek bij de diagnose dementie: een etnografische verkenning.

Giving adequate diagnostic information is considered to be fundamental in dementia care. An important question is how the diagnostic disclosure in dementia actually takes place. The aim of this explorative ethnographic study was therefore to provide insight into the disclosure practice of medical specialists. For this study, 22 interviews performed by seven medical specialists were analyzed.The results of this study show that the observed doctors are direct and explicit in disclosing the diagnosis. Actual (medical) information about the diagnosis and the performed investigations is provided. The main areas for improvement are involving the patient in the conversation, align your language to the lifeworld of the patient and his/her significant other(s), avoiding the use of medical jargon, discussing the consequences of the diagnosis for daily life, and explicitly recognizing the emotional and existential challenges associated with the disclosure. In providing further information, doctors could discuss emotional and existential support more specifically.

'The eyes of others' are what really matters: The experience of living with dementia from an insider perspective.

INTRODUCTION: This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. METHODS: We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen's existential phenomenological approach. RESULTS: The findings show that living with dementia-from a first-person perspective-can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. DISCUSSION: Our study demonstrates how the people with dementia are affected by 'the eyes of others'. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people's self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that-from a first-person perspective-dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is, the focus is on what Alzheimer's disease means and does and how it affects daily life.

Entangled in uncertainty: The experience of living with dementia from the perspective of family caregivers.

INTRODUCTION: Too often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite. METHODS: This Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach. RESULTS: The findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others. DISCUSSION AND CONCLUSION: Our findings show that dealing with what Boss (2011) called 'ambiguous loss-experiences' is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.

Radiographic images and the emergence of optimism about recovery in patients with small cell lung cancer: an ethnographic study.

BACKGROUND: In a previous study, patients with small cell lung cancer showed "false optimism" about their recovery. Because patients' ideas about prognosis affect the choices they make regarding their treatment and end of life care, we explored the reasons why patients showed this optimism. METHODS: An ethnographic study was conducted involving 35 patients with small cell lung cancer in a lung diseases ward and outpatient clinic in a university hospital in the Netherlands. Patients were observed during their entire illness trajectory from diagnosis until death. FINDINGS: At the point of diagnosis, the patient felt ill but not to such a degree that a diagnosis of an incurable cancer was expected. The patient was convinced of really having a cancer when he could see "with his own eyes" a tumour on the radiographic images. During and just after chemotherapy treatment, the patient felt very ill, much more than at the time of diagnosis. It felt as if treatment had made things worse. The patient was convinced that he had been successful in his fight against the tumour when he could see "with his own eyes" a much smaller tumour on the radiographic images. INTERPRETATION: When there was a discrepancy between what patients felt and what the doctor said, radiographic images were used to convince the patient that the doctor was right. An effect of this practice is that patients "learn" to not trust their own bodily sensations and to consider clinical evidence as a more reliable source of information about their condition.

[The law and the local fairness of care practice. Reflections on the ethnographic field investigation concerning the failure of the Bopz Act in psychogeriatric nursing home care]. / De wet en de lokale redelijkheid van de zorgpraktijk: reflecties vanuit etnografisch veldonderzoek over het falen van de Wet Bopz in de psychogeriatrie.

Ten years after its introduction the Special Admissions to Psychiatric Hospitals Act (Bopz) still awaits full implementation in the field of psychogeriatric nursing home care. Ethnographic research into moral problems related to care giving in dementia patients in Dutch nursing homes yielded several reasons for this discrepancy between law and care practice. Firstly, practical effectuation of this law rests predominantly on the shoulders of nurses and nurse assistants who are mainly inspired by moral motives such as carefulness and providing safety and who are ill informed about the law and its prerequisites. Secondly, there is the problem of the loss of a common shared world of meaning, which in relational terms is typical for the process of dementia. As a result of this, crucial concepts of the Bopz loose their applicability as the disease progresses. Finally, there is an immanent tension between the anthropology of care and care giving and the anthropological presuppositions of the law, health law included, which on a fundamental level contributes to the resistance of the care practice to the legal procedures of the Bopz. These factors must be accounted for in new legislation or revision of the current law. In the mean time we urge the necessity to develop a moral code concerning how to deal with resistive behaviour and opposition to care of demented nursing home patients.

Listen to their answers! Response behaviour in the measurement of physical and role functioning.

BACKGROUND: Quality of life (QoL) is considered to be an indispensable outcome measure of curative and palliative treatment. However, QoL research often yields findings that raise questions about what QoL measurement instruments actually assess and how the scores should be interpreted. OBJECTIVE: To investigate how patients interpret and respond to questions on the EORTC-QLQ-C30 over time and to find explanations to account for counterintuitive findings in QoL measurement. METHODS: Qualitative investigation was made of the response behaviour of small-cell lung cancer patients (n = 23) in the measurement of QoL with the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30). Focus was on physical functioning (PF, items 1 to 5), role functioning (RF, items 6 and 7), global health and QoL rating (GH/QOL, items 29 and 30). Interviews were held at four points: at the start of the chemotherapy, 4 weeks later, at the end, and 6 weeks after the end of chemotherapy. Patients were asked to 'think aloud' when filling in the questionnaire. RESULTS: Patients used various response strategies when answering questions about problems and limitations in functioning, which impacted the accuracy of the scale. Patients had scores suggesting they were less limited than they actually were by taking the wording of questions literally, by guessing their functioning in activities that they did not perform, and by ignoring or excluding certain activities that they could not perform. CONCLUSION: Terminally ill patients evaluate their functioning in terms of what they perceive to be normal under the circumstances. Their answers can be interpreted in terms of change in the appraisal process (Rapkin and Schwartz 2004; Health and Quality of Life Outcomes, 2, 14). More care should be taken in assessing the quality of a set of questions about physical and role functioning.

Impact of euthanasia on primary care physicians in the Netherlands.

BACKGROUND: There is only limited knowledge about the emotional impact that performing euthanasia has on primary care physicians (PCPs) in the Netherlands. OBJECTIVE: To obtain more insight into the emotional impact on PCPs of performing euthanasia or assisted suicide, and to tailor the educational needs of vocational PCP trainees accordingly. METHODS: Qualitative research, consisting of four focus group studies. The setting was primary care in the Netherlands; 22 PCPs participated, in four groups (older males, older females, younger males and a group with interest with regard to euthanasia). RESULTS: Various phases with different emotions were distinguished: before (tension), during (loss) and after (relief) the event. Although it is a very rare occurrence, euthanasia has a major impact on PCPs. Their relationship with the patient, their loneliness, the role of the family, and pressure from society are the main issues that emerged. Making sufficient emotional space and time available to take leave adequately from a patient is important for PCPs. CONCLUSIONS: Many PCPs stressed that young physicians should form their own opinions about euthanasia and other end-of-life decisions early on in their career. We recommend that these issues are officially included in the vocational training programme for general practice.

A web site on lung cancer: who are the users and what are they looking for?

PURPOSE: The Dutch Lung Cancer Information Centre launched the Web site www.longkanker.info in November 2003. The purpose of this article is to describe the launching of the Web site, its development, the type of visitors to the Web site, what they were looking for, and whether they found what they requested. METHODS: Supervised by a panel (pulmonologists, patients, communication specialists), a large amount of material about lung cancer has been collected and edited into accessible language by health care providers, and the Web site has been divided into special categories following the different stages that lung cancer patients, relatives, and health care providers go through during the illness. The Web site is updated regularly. Search engines have been used to check the position of the Web site as a "hit." Pulmonologists have been informed about the founding of the Web site, and all lung cancer outpatient clinics in The Netherlands have received posters, folders, and cards to inform their patients. Visitor numbers, page views, and visitor numbers per page view have been registered continuously. Visitor satisfaction polls were placed in the second half of 2004 and the second half of 2005. RESULTS: The Web site appeared as first hit when using search engines immediately after launching it. Half of the visitors came to the Web site via search engines or links found at other sites. The number of visitors started at 4600 in the first month, doubled in the next months, and reached 18,000 per month 2 years after its launch. The number of visited pages increased to 87,000 per month, with an average number of five pages per visitor. Thirty percent of the visitors return within the same month. The most popular pages are interactive pages with the overview of all questions to "ask the doctor" at the top with forum messages, survival figures of all form of lung cancer, and information about the disease. The first satisfaction poll obtained 650 respondents and the second 382. The visitors to the Web site are caregivers (57%), patients (8%), and others (students, people fearing lung cancer). Of the visitors, 895 found what they were looking for, and the satisfaction is the highest among nurses and caregivers (91% and 95%, respectively) and the lowest among physicians and patients (85% and 83%). CONCLUSIONS: Given the number of visitors to the lung cancer Web site, it can be concluded that there is a great need for additional information among patients and caregivers. The launched Web site www.longkanker.info has reached its goal of providing a dependable source of information about lung cancer and satisfying its visitors.

Small-cell lung cancer patients are just 'a little bit' tired: response shift and self-presentation in the measurement of fatigue.

BACKGROUND: Response shift has gained increasing attention in the measurement of health-related quality of life (QoL) as it may explain counter-intuitive findings as a result of adaptation to deteriorating health. OBJECTIVE: To search for response shift type explanations to account for counter-intuitive findings in QoL measurement. METHODS: Qualitative investigation of the response behaviour of small-cell lung cancer (SCLC) patients (n = 23) in the measurement of fatigue with The European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) question 'were you tired'. Interviews were conducted at four points during 1st line chemotherapy: at the start of chemotherapy, 4 weeks later, at the end of chemotherapy, and 6 weeks later. Patients were asked to 'think aloud' when filling in the questionnaire. RESULTS: Fifteen patients showed discrepancies between their answer to the EORTC question 'were you tired' and their level of fatigue spontaneously reported during the interview. These patients chose the response options 'not at all' or 'a little' and explained their answers in various ways. In patients with and without discrepancies, we found indications of recalibration response shift (e.g. using a different comparison standard over time) and of change in perspective (e.g. change towards a more optimistic perspective). Patients in the discrepancy group reported spontaneously how they dealt with diagnosis and treatment, i.e. by adopting protective and assertive behaviour and by fighting the stigma. They distanced themselves from the image of the stereotypical cancer patient and presented themselves as not suffering and accepting fatigue as consequence of treatment. CONCLUSION: In addition to response shift, this study suggests that 'self-presentation' might be an important mechanism affecting QoL measurement, particularly during phases when a new equilibrium needs to be found.

Change in what matters to palliative patients: eliciting information about adaptation with SEIQoL-DW.

This study was carried out to investigate the usefulness of the SEIQoL-DW to elicit information about response shifts in palliative patients. The instrument measures individual quality of life and allows respondents to choose, rate and weight important areas of life (cues). We explored patients' reconceptualizations (ie, change in cues) and their value change (ie, change of cues weights). Results of 21 patients showed what mattered to these patients and how they had adjusted to deteriorating health. There is a risk that repeated measurements do not provide all the information that is potentially present and relevant to explore response shifts. But clear instructions to interviewers, such as careful listening, probing self-evident cues such as health and family, and accurate recording of cues on the forms may overcome this risk. Future research is recommended to explore the possibilities of regular assessments to facilitate better adjustment of patients.

Problems eliciting cues in SEIQoL-DW: quality of life areas in small-cell lung cancer patients.

The Schedule of Individual Quality of Life - Direct Weighting (SEIQoL-DW) is an individualized approach in the measurement of quality of life in which patients can choose, value and weight five areas that they consider important for their quality of life. Although a number of studies have reported on the feasibility of the administration of the instrument, little is known about how patients choose and define these five areas, the so-called 'cues'. This article describes problems in the elicitation of cues experienced in a qualitative, exploratory study among small-cell lung cancer patients (n = 31) in the Netherlands. Cues originate from patient-interviewer interaction which is best described as an area of tension between the patient's answers and the instrument instructions. As a result, the interviewer may inadvertently introduce bias while attempting to elicit cues, ultimately affecting patients' SEIQoL-DW measures. In order to prevent possible unnoticed interviewer bias special attention should be paid to the interviewer behaviour. Methods to record the meaning of cues should be considered. More research is needed in order to investigate differences in nominating cues with and without the use of the prompt list.

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study.

OBJECTIVE: To clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes. DESIGN: Qualitative, ethnographic study in two phases. SETTING: 10 wards in two nursing homes in the Netherlands. PARTICIPANTS: 35 patients with dementia, eight doctors, 43 nurses, and 32 families. RESULTS: The clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients' quality of life by their care providers were considered more important than living wills and policy agreements. CONCLUSIONS: Doctors' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient's medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.