Continence is a key moment of care that can tell us about the wider care of people living with dementia within acute hospital wards. The spotlight is currently on the quality of hospital care of older people across the UK, yet concerns persist about their poor treatment, neglect, abuse, and discrimination within this setting. Thus, within hospitals, the care of people living with dementia is both a welfare issue and a human rights issue. The challenge of continence care for people (...) living with dementia can be seen as the ‘canary in the coal mine’ for the unravelling of dignity within the acute setting. This paper draws on an ethnographic study within five hospitals in England and Wales, selected to represent a range of hospital types, geographies and socio‐economic catchments. Observational fieldwork was carried out over 154 days in acute hospitals known to admit large numbers of people living with dementia. This paper starts to fill the gap between theory and data by providing an in‐depth ethnographic analysis examining the ways in which treatment as a person is negotiated, achieved or threatened. We examine how the twin assaults on agency of a diagnosis of dementia and of incontinence threaten personhood. The acute threats to this patient group may then act to magnify perils to treatment as a person. Our findings suggest that personal dignity and the social construction of moral personhood are both threatened and maintained in such a setting. We show how empirical ethnographic data can lend weight to, and add detail to, theoretical accounts of moral personhood and dignity. (shrink)

Background: Dignity experience in the daily lives of people living with dementia is influenced by their relational interactions with others. However, literature reviews show that knowledge concerning crucial interactional qualities, preserving their sense of dignity, is limited. Aim: The aim of this study was to explore and describe crucial qualities of relational interactions preserving dignity experience among people with dementia, while interacting with family, social network, and healthcare professionals. Methodology: The study was founded upon Gadamer’s philosophical hermeneutics, and an exploratory (...) design employing qualitative research interviews was conducted. Participants and research context: A total of 11 individuals diagnosed with mild to moderate dementia, living in their own homes, were recruited from two Hospital Memory Clinics in Norway. Ethical considerations: In recruiting persons with dementia as study participants, sensitivity toward their life history, autonomy, integrity, relationships, and dignity is essential. These standards, and the ethical principles of moral sensitivity to their vulnerability, doing no harm, showing justice, and respecting their personal utility, guided our research. Results: Three main interactional qualities preserving the participants’ dignity experience were found: Experiencing love and confirmation; experiencing social inclusion and fellowship; experiencing humane warmth and understanding within a caring culture, while being met as an equal human being. A total of 10 sub-qualities were identified within these 3 main qualities. Discussion and final considerations: Dignity experience among the participants was preserved when certain interactional qualities were present in their interactions with family, social network, and healthcare professionals. While supporting some of the findings of previous studies, this study adds new knowledge on the subject. Knowledge of relational interactions toward preserving dignity experience should be a fundamental part of future dementia care practice. Based on the results of this study, an empirical–theoretical model was developed for this purpose. (shrink)

Background: Dignity, an abstract and complex concept, is an essential part of humanity and an underlying guiding principle in healthcare. Previous literature indicates dignity is compromised in people with dementia (PwD), but those PwD maintain the capacity to live with dignity with appropriate external support. Alzheimer’s disease and related dementias (ADRDs) lead to progressive functional decline and increased vulnerability and dependence, leading to heightened risks of PwD receiving inappropriate or insufficient care that diminishes dignity. Considering the increased disease prevalence and (...) the continuously escalating costs of dementia care, establishing a productive value-based guideline may prevent suffering, maximize dignity, and thus promote quality of life (QoL). Aim: The goal of this project is to identify actionable targets for integrating dignity harmoniously and practically into care planning and management for PwD. Research Design: We conducted a concept analysis using Walker and Avant’s eight-step process. A comprehensive literature search was conducted (PubMed and CINAHL) with the keywords “dignity,” “dementia,” “Alzheimer’s disease,” and “dementia care.” Results: A total of 42 out of 4910 publications were included. The concept of dignity in PwD is operationalized as the promotion of worthiness and the accordance of respect that allows the presence and expression of a person’s sense of self, regardless of physical, mental, or cognitive health. The concept has two subdimensions: absolute dignity which encompasses the inherent self and relative dignity characterized by its dynamic reflective nature. Worthiness and respect are the two main attributes, while autonomy is an underlying component of dignity. Specific antecedents of dignity in PwD are empowerment, non-maleficence, and adaptive environmental scaffolding. As a consequence of facilitating dignity in PwD, QoL may be enhanced. Conclusion: As a foundational and necessary humanistic value, incorporating dignity into dementia care can lead to efficient and effective care that optimizes QoL in PwD throughout their disease progression. (shrink)

Background: The nursing community in the Nordic countries has become multicultural because of migration from European, Asian and African countries. In Norway, minority health care providers are recruited in to nursing homes which have become multicultural workplaces. They overcome challenges such as language and strangeness but as a group they are vulnerable and exposed to many challenges. Purpose: The aim is to explore minority healthcare providers, trained nurses and nurses’ assistants, and their experiences of challenges when working in a multicultural (...) team in a Norwegian context. Research method: The study has a qualitative design, using narrative interviews, and a phenomenological–hermeneutic analysis method to explore the experiences of challenges in dementia care. Ethical considerations: The study was approved by The Norwegian Regional Ethics Committee, and the Norwegian Social Science Data Services. Participation and research context: Five informants from different African, Asian and European countries participated in the study. The study was conducted in a Norwegian nursing home, in a dementia care unit. Findings: The results show that minority health care providers experience and find meaning in being a member of a team, they overcome challenges, characterized by the interdependency in the team, appreciating new cultural experiences and striving to belong. They must overcome challenges such as language problems and the feeling of strangeness. Discussion: The findings are discussed considering Løgstrup’s ethic of proximity, the ethical demand of trust, and interdependency. The ethical demand is an answer to a common, transparent, unspoken agreement to be met, seen, and understood. Conclusion: The study shows that cooperation in a multi-professional and multi-ethnic team is important, and secures the quality of care to persons with dementia. Further research is necessary to examine the relation between a multi-ethnic staff and the patients experiencing dementia. Further research is necessary to examine ethnicity, the relation between a multi-ethnic staff, the patients experiencing dementia and next of kin. (shrink)

Background: Generally, a person with dementia may be unable to make decisions by themselves and professionals may decide what is best for them. Unfortunately, in most cases, professionals assist a person with dementia to make decisions without clear explanation or consent. Whether a person with dementia possesses dignity in routine care is an important issue. Research objectives: The purpose of this study was to explore the lived experience of the healthcare professionals in providing dignified dementia care in Taiwan. Research design: (...) A qualitative, hermeneutic-phenomenological approach was conducted. Participants: Participants were enrolled by purpose sampling. Researchers performed in-depth interviews to reveal the essential ingredient of dignity within dementia care in Taiwan. A total of 20 cases were enrolled to achieve data saturation. Ethical considerations: This study was approved by the institutional review board. Before conducting the interview, interviewees provided informed consent. Findings: There were three themes and six categories that were addressed and constructed; within the themes, 23 Guidelines for Taiwan Dignified Dementia Care and 12 Principles for Dignified Dementia Care in Taiwan were developed. Discussion: From the data relating to dignity in dementia care, we can develop a more independent and dignified care environment to improve the quality of life of person with dementia in Taiwan. Conclusion: The results indicated that dignity within dementia care was constructed by the lived experience of the healthcare professionals, as well as affected by the culture of the organizations and society at the same time. (shrink)

Background: Nursing workforce in Western European health institutions has become more diverse because of immigration and recruitment from Asian, African, and East-European countries. Minority healthcare providers may experience communication problems in interaction with patients and coworkers, and they are likely to experience conflict or uncertainty when confronted with different cultural traditions and values. Persons with dementia are a vulnerable group, and the consequences of their illness challenge the ability to understand and express oneself verbally. The large number of minority healthcare (...) providers in nursing homes underlines the importance to obtain better knowledge about this group’s experiences with the care challenges in dementia care units. Research question: Can you tell about any challenges in the experiences in the encounter with persons suffering from dementia? Participants and research context: Five minority healthcare providers in a nursing home, in a dementia unit. All guidelines for research ethic were followed. Ethical consideration: The participants were informed that participation was voluntary, and they were guarantied anonymity. Method: We used a qualitative method, conducting individual interviews, using a narrative approach. In the analysis, we applied a phenomenological–hermeneutical method, developed for researching life experiences. Findings: One theme and four subthemes: striving to understand the quality of care for persons with dementia. The subthemes: sensitivity to understand the patients’ verbal and nonverbal expressions. To understand gratefulness, understand the patient as an adult and autonomous person, and understand the patient as a patient in a nursing home. Challenges comprise both ethical and cultural striving to understand persons with dementia. Conclusion: To care for persons with dementia in an unfamiliar context may be understood as a striving for acting ethically, when at the same time striving to adapt and acculturate to new cultural norms, in order to practice good dementia care. (shrink)

Dignified care is a central issue in the nursing care of older adults. Nurses are expected to treat older adults with dignity, and older adults wish to be treated in a dignified manner. Researchers have recommended investigating the concept of dignity based on specific contexts and population groups. This meta-synthesis study aims to explore the understandings of dignity from the perspective of older adults in the Nordic countries. Synthesising findings from qualitative studies on older adults’ experiences of dignity has provided (...) important insight into what can be essential for dignified care in a Nordic context. The importance of visibility and recognition for the experience of dignity is an overarching theme in all the studies. The participants’ descriptions mostly implicated an existence dominated by a lack of recognition. The older adults do not feel valued as people or for their contribution to society and strive to tone down their illnesses in an attempt to become more visible and acknowledged as people. Toning down their illnesses and masking their needs can protect their independence. At the same time, becoming less visible can leave them without a voice. The metaphorical phrase protected and exposed by a cloak of invisibility is used to express the authors’ overall interpretation of the findings. Lack of recognition and being socially invisible is a genuine threat to older adults’ dignity. (shrink)