Background Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. Research objective This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. Research design A hermeneutical approach was chosen for this study, (...) using a semi-structured interview guide to allow for interviews in the form of open conversations. Participants and research context Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. Ethical considerations Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants’ integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. Findings The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants’ assessments of daycare centers relied on specific aspects, with high individual variety. Discussion and conclusion The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons’ everyday life. This indicates that patient participation in decision-making processes for this group is—in addition to be a judicial and ethical requirement—crucial to ensure adequate care and support. (shrink)

It has now become a realistic prospect for smart care to be provided at home for those living with long-term conditions such as dementia. In the contemporary smart care scenario, homes are fitted with an array of sensors for remote monitoring providing data that feed into intelligent systems developed to highlight concerning patterns of behaviour or physiological measurements and to alert healthcare professionals to the need for action. This paper explores some ethical issues that may arise within such smart care (...) systems, focusing on the extent to which ethical issues can be addressed at the system design stage. Artificial intelligence has been widely portrayed as an ethically risky technology, posing challenges for privacy and human autonomy and with the potential to introduce and exacerbate bias and inequality. While broad principles for ethical artificial intelligence have become established, the mechanisms for governing ethical artificial intelligence are still evolving. In healthcare settings the implementation of smart technologies falls within the existing frameworks for ethical review and governance. Feeding into this ethical review there are many practical steps that designers can take to build ethical considerations into the technology. After exploring the pre-emptive steps that can be taken in design and governance to provide for an ethical smart care system, the paper reviews the potential for further ethical challenges to arise within the everyday implementation of smart care systems in the context of dementia, despite the best efforts of all concerned to pre-empt them. The paper concludes with an exploration of the dilemmas that may thus face healthcare professionals involved in implementing this kind of smart care and with a call for further research to explore ethical dimensions of smart care both in terms of general principles and lived experience. (shrink)

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: The concept of dignity is recognised as a fundamental right in many countries. It is embedded into law, human rights legislation and is often visible in organisations’ philosophy of care, particularly in aged care. Yet, many authors describe difficulties in defining dignity and how it can be preserved for people living in long term care. Objectives: In this article, Nordenfelt’s ‘four notions of dignity’ are considered, drawing on research literature addressing the different perspectives of those who receive, observe or (...) deliver care in the context of the long-term care environment. Methods: A review of the literature was undertaken using the terms ‘nursing homes’, ‘residential care’ or ‘long-term care’. The terms were combined and the term ‘human dignity’ was added. A total of 29 articles met the inclusion criteria from the United Kingdom (14), United States (2), Australia (1), Sweden (3), Hong Kong (2), Norway (3), Nordic (1), Taiwan (1), Netherlands (1). Ethical Considerations: Every effort has been made to ensure an unbiased search of the literature with the intention of an accurate interpretation of findings. Discussion: The four notions of dignity outlined by Nordenfelt provide a comprehensive description of the concept of dignity which can be linked to the experiences of people living in long-term care today and provide a useful means of contextualising the experiences of older people, their families and significant others and also of staff in long-term care facilities. Of particular interest are the similarities of perspectives of dignity between these groups. The preservation of dignity implies that dignity is a quality inherent in us all. This links directly to the exploration and conclusions drawn from the literature review. Conversely, promoting dignity implies that dignity is something that can be influenced by others and external factors. Hence, there are a number of implications for practice. Conclusion: We suggest that two of Nordenfelt’s notions, ‘dignity of identity’ and ‘dignity of Menschenwüde’, are a common thread for residents, family members and staff when conceptualising dignity within long-term care environments. (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: Research concerning relatives’ participation in the everyday care related to persons living in special care units for persons with dementia is limited. Research questions: To examine relatives’ participation in their near one’s everyday care, the level of burden experienced and important factors for participation, in this special context. Design: The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire. Participants and context: A total of 233 relatives from 23 different special care (...) units participated. Ethical consideration: The study was approved by the Norwegian Social Science Data Services. Results: A great majority of relatives reported that they visited weekly and were the resident’s spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden. Discussion: This study indicated that relatives were able to make a difference to their near one’s everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident’s preferences, information concerning these issues is of utmost importance. Conclusion: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident’s well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents’ life history and preferences is available and used should be implemented in practice. (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: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals (...) in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for. (shrink)

Background: A key message in the World Health Organization’s report on dementia emphasizes the need to improve public and professional attitudes to dementia and its understanding, while acknowledging the fact that the workforce in dementia care is becoming increasingly diverse culturally. Objectives: To explore possible differences among formal caretakers from varied cultural background in their attitudes toward the autonomy and human dignity of patients with dementia. Research design: Semi-structured interviews and content analysis, utilizing two fictional vignettes for eliciting caretakers’ attitudes (...) toward dignity and autonomy of their patients. Participants and context: A total of 20 formal caretakers of patients with dementia from three different cultural groups in Israel (“Sabras,” “Arabs,” and “Russians”), working in nursing homes and a hospital. Ethical consideration: Approvals of relevant research ethics committees were obtained and followed. Findings: In comparison with the other groups, most Arab caretakers offer markedly richer perceptions of human dignity and autonomy. Their human dignity’s conceptualization emphasizes “person-centered approach,” and their perception of patients’ autonomy includes provision of explanations and preservation and encouragement of independence. Discussion: The differences found in the attitudes toward the meaning of autonomy and human dignity between the Arab caretakers and the other caretakers stand in contrast to previous studies regarding human dignity, emphasizing the common nature of these attitudes. Offering a linkage (theoretical and empirical) between the Arab perceptions of dignity and autonomy, the study strengthen and further the importance attributed in existing literature to person-centered care in enhancing the quality of care for patients with dementia. Conclusion: The conceptualization of human dignity may vary among different cultural groups. It may also influence the extent to which the caretaker holds a full-fledged perception of the patients’ autonomy. (shrink)

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related to dignity and (...) dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients. (shrink)

A large proportion of hospital inpatients are affected by cognitive impairment, posing challenges in the provision of their care in busy, fast-paced acute wards. Signs and symbols, known as visual identifiers, are employed in many U.K. hospitals with the intention of helping healthcare professionals identify and respond to the needs of these patients. Although widely considered useful, these tools are used inconsistently, have not been subject to full evaluation, and attract criticism for acting as a shorthand for a routinized response. (...) In order for visual identifiers to be used effectively in acute care settings, thorough consideration must be given to the ethical and legal issues that are engaged in this context, and their potential benefits and harms must be weighed and balanced. This paper proposes a set of legal and ethical principles that can be used to guide the implementation of visual identifiers. Together, these principles provide a framework applicable in the design and implementation phases to systematically identify relevant considerations arising from the use of these tools. We outline some tensions that arise between principles and conclude that selecting a preferred moral framework could help to guide decision-making, as does clarity around the purpose and objectives of the identifier. (shrink)

It is a common experience among care professionals that persons with dementia often say ‘no’ to conventional caring measures such as taking medication, eating or having a shower. This tendency to say ‘no’ may also concern the use of assistive technologies such as fall detectors, mobile safety alarms, Internet for social contact and robots. This paper provides practical recommendations for care professionals in home health care and social care about how to respond to such resistiveness towards assistive technologies. Apart from (...) the option of accepting the ‘no’, it discusses a number of methods for influencing persons with dementia in order to overcome the ‘no’. These methods range from various non-coercive measures—including nudging—to coercion. It is argued that while conventional caring measures like those mentioned are essential for survival, health or hygiene, assistive technologies are commonly merely potentially beneficial supplements. With this in mind, it is concluded that care professionals should be more restrictive in using methods of influence involving some degree of pressure regarding assistive technologies than regarding conventional caring measures. (shrink)