Anticipatory Grief in Dementia: An Ethnographic Study of Loss and Connection.

In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life. I argue that anticipatory grief is temporal and relational, encompassing both present and future losses, and involving a continuous negotiation between the loss and the continuing relationship. I underscore the entanglement of loss and connection, showing how both exist parallel to, and may emerge from one another, and demonstrating how an anthropological approach to anticipatory grief can reveal the nuanced and equivocal character of experiences of illness and at the end of life.

Moral frames for lives worth living: Managing the end of life with dementia.

Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames. Specifically, I elaborate on the production of lives (not) worth living and explore how family members welcomed the death of a loved one with dementia. I argue that the welcoming of death is not an act of indifference but can be seen as a form of care.

Professional caregivers' experiences with the Liverpool Care Pathway in dementia: An ethnographic study in a Dutch nursing home.

ABSTRACTObjective:There are few studies on how professional caregivers apply the Liverpool Care Pathway (LCP) in nursing home care for people with dementia. Further, despite critiques in the United Kingdom, the LCP continues to be used in the Netherlands, while, to the best of our knowledge, no studies have been conducted since its implementation. The purpose of the present study was to analyze professional caregivers' experiences with the LCP in this context. METHOD: This article draws on an ethnographic study. Data collection was based on 4 months of ethnographic fieldwork in 2015 in 11 psychogeriatric units of a nursing home in a rural area of the Netherlands. Data collection included participant observation and 25 semistructured audiotaped interviews with specialist elderly care physicians, nursing staff, and a nurse practitioner. RESULTS: We found that professional caregivers appreciate the LCP as a communication tool and as a reminder of care goals. However, the document was deemed too complicated and to cause duplication of work. It was also reported that the LCP did not cover the complexity of care needs that emerge in practice. Actual care needs were prioritized over the LCP, which calls its contribution into question. SIGNIFICANCE OF RESULTS: Overall, the LCP does not match the context of dementia care in the nursing home. While it could be argued that the LCP does not intend to replace good care, its benefits as a reminder and a communication tool need continued consideration in relation to the amount of work it requires as a bureaucratic obligation.

Palliative care for people with dementia in the terminal phase: a mixed-methods qualitative study to inform service development.

BACKGROUND: When entering the dying phase, the nature of physical, psychosocial and spiritual care needs of people with dementia and their families may change. Our objective was to understand what needs to be in place to develop optimal palliative care services for the terminal phase in the face of a small evidence base. METHODS: In 2015-2016, we performed a mixed-methods qualitative study in which we (1) analysed the domains and recommendations from the European Association for Palliative Care (EAPC) dementia white paper and identified those with particular relevance for the terminal phase; (2) performed a series of focus group discussions with Dutch family caregivers of people with dementia in variable stages; (3) conducted interviews with experts involved in 15 special forms of terminal care for people with dementia in five countries. The terminal phase was defined as dying but because of the difficulty predicting it, we included advanced dementia. We initially analysed the three parts separately, followed by an integrated analysis of (1)-(3) to inform service development. RESULTS: (1) The EAPC domain of "avoiding overly aggressive, burdensome, or futile treatment" was regarded of particular relevance in the terminal phase, along with a number of recommendations that refer to providing of comfort. (2) Families preferred continuity in care and living arrangements. Despite a recognition that this was a time when they had complex support needs, they found it difficult to accept involvement of a large team of unfamiliar (professional) caregivers. Mostly, terminal care was preferred at the place of residence. (3) The expert interviews identified preferred, successful models in which a representative of a well-trained team has the time, authority and necessary expertise to provide care and education of staff and family to where people are and which ensure continuity of relationships with and around the patient. CONCLUSION: A mobile team that specializes in palliative care in dementia and supports professional and family caregivers is a promising model. Compared to transfer to a hospice in the last weeks or days, it has the potential to address the priorities of families and patients for continuity of care, relationships and specialist expertise.

Palliative care practices and policies in diverse socio-cultural contexts: aims and framework of the ERC globalizing palliative care comparative ethnographic study.

Background: Palliative care as a specialist professional practice of care for people with advanced illness is becoming increasingly influential worldwide. This process is affected by global health inequalities as well as cultural dimensions of approaching death and practicing care in life-limiting illness. Objectives: The European Research Council-funded Globalizing Palliative Care (ENDofLIFE) project aims to understand how palliative care policies, discourses and practices are translated, adapted and reconstituted in diverse socio-cultural settings and how cultural dimensions of approaching death and local practices of care shape palliative care implementation. Methods and Analysis: Using a multi-scalar and multi-sited ethnographic approach, the project uses person-centered ethnography, participant observation, semi-structured interviewing, focus group discussions and policy and discourse analysis at transnational, national and local levels. Ethnographic case-studies are conducted in Brazil, India and Indonesia. Discussion: The globalizing palliative care project develops a novel ethnographic methodology of studying end-of-life care trajectories through long-term participant observation with individual patients and families as they manage and practice formal and informal health care in advanced illness. By analyzing how patients and families experience and navigate care over time, complemented by stakeholder interviews, the study advances critical theoretical insight into the relation between (large-scale and dynamically traveling) palliative care models, policies and discourses on the one hand and the experience and practice of palliative care in the lives of patients and informal care givers in local health care practices on the other hand. Insights are expected to benefit culturally situated palliative care policies and practices.

Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers.

BACKGROUND: Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. METHODS: We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. RESULTS: End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. DISCUSSION: Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice.

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits: (1) improving the delivery of person-centred care, (2) hearing the voice of people with dementia, (3) residents spending time with researchers, (4) improving researcher understanding, and (5) having an evidence base from multiple sources. We also identified five main challenges: (1) effective communication, (2) fluctuating capacity, (3) causing distress to residents, (4) time pressures, and (5) staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection.

Competing goods and fallacies of care: Moral deliberations at the end of life in the nursing home.

While care is often either implicitly or explicitly conceived in terms of "doing good," the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care. Based on ethnographic fieldwork among people with dementia, family members and professional caregivers in nursing homes in the Netherlands, I present a case of a resident's sudden death, which revealed a fallacy of care. A fallacy of care refers to an uncritical approach to the "good" in care that overlooks its potentially harmful outcomes. I show that recognizing such fallacies is not only a matter of recognizing the "bad" that may result from "good" care, but of the friction between multiple "goods." In this case, protocols and care practices advocate different notions of the good that coexist, compete, and exclude one another, producing moral distress and forming hierarchical, if contested relations.