Eating experiences in people living with dementia: A concept analysis using Rodgers's methodology.

AIMS: To analyse the concept of eating experiences in people living with dementia. DESIGN: Rodgers' evolutionary method of concept analysis was used as a framework for the paper. DATA SOURCES: The literature was searched using electronic databases PubMed, Google Scholar, CINHAL, PsycInfo, Web of Science, Embase and Elsevier databases. These databases cover a variety of disciplines, including but not limited to nursing, medicine and occupational therapy. The relevant literature published from 1989 to April 2023 was thoroughly examined. Any quantitative or qualitative studies published in English focused on eating or dining experiences in people with dementia were included. REVIEW METHODS: Rodgers' evolutionary method for concept analysis was used. The attributes, antecedents, consequences and case examples of the concept were identified. RESULTS: Twenty-two articles met the inclusion criteria, identifying key attributes of self-connection, the special journey of life and self-interpretation. Antecedents, as framed by the socio-ecological model, were categorized to represent intrapersonal (personal preferences, individual culture, mealtime routines), interpersonal (social interaction) and environmental (dining room environment, policies) factors. Consequences were divided into external (nutritional health, physical health and quality of life) and internal (personhood, autonomy and independence, dignity and feeling valued and mental well-being) domains. CONCLUSION: A theoretical definition and conceptual model of eating experiences in people living with dementia was developed. The identified attributes, antecedents and consequences can be utilized in nursing education, research and intervention approaches. IMPACT: This article allows nurses and other healthcare professionals to better understand people living with dementia through the relationship between eating and interpersonal, intrapersonal and environmental aspects to develop personalized interventions and care strategies to achieve an optimal quality of life. PATIENT OR PUBLIC CONTRIBUTION: Not applicable.

Ambiguous personhood: Paradoxes of social belonging in Danish nursing home care.

In oldest old age (generally considered to be from 85 years onwards), personhood is often called into question, impacting well-being as a result. Based on ethnographic fieldwork, this article examines the well-being of oldest old nursing home residents at the intersections of ageism, fraying personhood and fragile social belonging in Danish nursing home care. In Denmark personhood hinges on both independence and social belonging; or "fællesskab." We examine how these concepts are practiced in nursing home care. Taking its starting point in the distinction between the "inside world" of the nursing home and the "real world" outside, the article examines how processes of othering occur in nursing home care, imperilling resident personhood and opportunities for social belonging. We consider how oldest old residents navigate social belonging, finding it in turn life-sustaining and vexatious. We argue that tacit ageism permeates the nursing home, to the detriment of resident well-being, despite the best intentions of an aged care system that is structured to specifically maintain personhood.

'Robbed out of mind': Reflections on Alzheimer's and gendered subjectivity in select Indian literary narratives.

Neurological degeneration is a potent signifier molding older lives, divesting them of 'personhood' and making them a 'target of care'. This article delineates the depictions of Alzheimer's and its associated losses in select Indian literary narratives- Jalsobi: In the Shadow of Light (2018) and Girl in White Cotton (2019) and seeks to understand how 'ageing into disability' for older women has severe implications that marginalize their embodied existence, foisting a symbolic death. Through the fictional accounts, the article explores two primary threads of consideration - how the 'selfhood' gets eroded/reclaimed while experiencing cognitive impairment and how the shift from the patient-centric to the person-centric approach alters the relational care dynamics in the Indian context. It also attempts to situate the conception and representation of age-induced cognitive loss within the framework of critical disability studies, which understates the reductionist biomedical perspective and fosters an alternative, inclusive, and empathetic understanding of dysfunctionality.

Autonomy and its relevance for the construction of personhood in dementia- a thematic synthesis.

BACKGROUND: This article examines the concept of autonomy in the context of person-centred dementia research and care, which is frequently being used but not clearly defined. Also, there is no clear conceptual relation between autonomy and personhood in this context. METHODS: Therefore, literature on person-centred dementia research and care was examined to answer the following question: How is the concept of autonomy discussed in person-centred dementia research and care literature? RESULTS: This analysis revealed heterogeneous perspectives on autonomy within the context of dementia. These were assigned to two different perspectives on personhood: one that links personhood to the existing cognitive abilities and the other one, that understands personhood relationally as the result of a socially constructed process. These results are discussed with regard to a nursing and care practice that could be considered as being deficit-oriented, but also with regard to the concept of social health in dementia. CONCLUSIONS: Derived from this analysis, there is a clear need for general conceptual sensitivity in this field. Also, an in-depth examination of the social constructionist approach to personhood in the context of dementia is warranted.

Fostering relational autonomy in end-of-life care: a procedural approach and three-dimensional decision-making model.

Respect for patient autonomy is paramount in resolving ethical tensions in end-of-life care. The concept of relational autonomy has contributed to this debate; however, scholars often use this concept in a fragmented manner. This leads to partial answers on ascertaining patients' true wishes, meaningfully engaging patients' significant others, balancing interests among patients and significant others, and determining clinicians' obligations to change patients' unconventional convictions to enhance patient autonomy. A satisfactory solution based on relational autonomy must incorporate patients' competence (apart from decisional capacity), authenticity (their true desires or beliefs) and the involvement level of their significant others. To that end, we argue that John Christman's procedural approach to relational autonomy provides critical insights, such as the diachronic or socio-historical personhood, sustained critical reflection and his recent explication of the nature of asymmetrical relationships and helpful interlocutors. This study reviews Christman's account, proposes minor modifications and advocates for an integrated three-dimensional model for medical decision-making. Clarifying the relationship among the three elements promotes an ethical framework with a coherent understanding of relational autonomy. This model not only provides a descriptive and normative framework for end-of-life care practice but also reconsiders the nature of the clinician-patient relationship and its normative implications. We further present a case study to illustrate the merits of our proposed model. Altogether, our proposal will help navigate complex medical decision-making, foster trust and negotiate shared values between patients and their significant others, particularly in end-of-life care.

Fetuses are not adult humans: a response to Miller on abortion.

Miller has recently argued that fetuses have the same inherent value as non-disabled adults. However, we do not need to postulate some property possessed equally by all humans, including fetuses, in order to explain the equality of non-disabled adults. It would suffice if there were some property possessed by all non-disabled adults, but not by fetuses.

Defining dignity at the intersection of disability: a scoping review.

PURPOSE: This scoping literature review aimed to determine the definition of dignity in relation to disability. It also examined the extent to which inclusive research methods have been used to develop working definitions. MATERIALS AND METHODS: A comprehensive search was conducted in five electronic databases, using a modified framework by Arksey and O'Malley. Narrative synthesis and qualitative content analysis were employed to examine definitions of dignity and the use of inclusive research methods. RESULTS: 22 peer-reviewed studies were included. The majority of the studies were qualitative (72.72%) and examined various disability populations in diverse settings. Although 19 studies offered a definition of dignity, there was no clear consensus. Dignity was frequently defined from a utilitarian perspective, emphasising affordances and barriers. However, engagement with theoretical constructs was superficial and limited. Further, no studies mentioned the use of inclusive research methods. CONCLUSIONS: The absence of inclusive research methods hinders the development of a comprehensive definition of dignity that is accepted by and relevant to people with disability. Engaging with both theoretical and empirical perspectives of dignity is crucial to develop a meaningful and inclusive definition, which can inform interventions and policies that enhance dignity for people with disability across diverse settings and contexts.

The adoption of inclusive research methods in disability research should be a priority for rehabilitation researchers and clinicians to better shape research agendas, study design, and outcomes.The absence of inclusive research methods hinders the development of a comprehensive definition of dignity that is accepted by and relevant to people with disabilityThe findings emphasise the need to address dignity concerns within healthcare settings for people with disability.Rehabilitation practitioners can advocate for person-centered approaches, improved communication and increased accessibility to create dignified healthcare environments.Rehabilitation researchers and practitioners can play a pivotal role in advocating for social justice and equity by supporting policies and interventions that foster inclusive practices, dignity, and equitable opportunities for people with disability.

Nurturing attentiveness: a naturalistic observation study of personal care interactions between people with advanced dementia and their caregivers.

BACKGROUND AND OBJECTIVES: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. RESEARCH DESIGN AND METHODS: This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between fourteen people with advanced dementia and twelve caregivers (n=7 care-home staff, n=5 family carers) in the UK (total observation time 03:01:52). Observations were analysed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. RESULTS: Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterised by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person and skilled in seamlessly supporting them through care activities. DISCUSSION AND IMPLICATIONS: Findings draw on real-world empirical evidence to reinvigorate the notion of person-centredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

The Relational Care Framework: Promoting Continuity or Maintenance of Selfhood in Person-Centered Care.

We argue that contemporary conceptualizations of "persons" have failed to achieve the moral goals of "person-centred care" (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood's original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment.

Personhood as projection: the value of multiple conceptions of personhood for understanding the dehumanisation of people living with dementia.

We examine the concept of personhood in relation to people living with dementia and implications for the humanity of care, drawing on a body of ethnographic work. Much debate has searched for an adequate account of the person for these purposes. Broad contrasts can be made between accounts focusing on cognition and mental faculties, and accounts focusing on embodied and relational aspects of the person. Some have suggested the concept of the person is critical for good care; others suggest the vexed debates mean that the concept should be abandoned. We argue instead that the competing accounts illuminate the very tensions in personhood which are manifest for all of us, but especially for people living with dementia, and argue that our account has explanatory power in shedding light on how precisely dehumanisation and constraints on agency may arise for people living with dementia, and for staff, within an institutional context.

Dignity and the Importance of Acknowledgement of Personhood for People With Disability.

Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants' wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights.

A Systematic Scoping Review on Dignity Assessment Tools.

CONTEXT: The provision of person-centered dignity-conserving care is central to palliative care. It is important to reevaluate current methods of assessing dignity as the concept of dignity is multifaceted. OBJECTIVES: The aim of this study is to understand the tools which are used to assess a patient's dignity and the elements of dignity evaluated in these tools. METHODS: Two independent and concurrent Systematic Evidence-Based Approach guided systematic scoping reviews (SSR in SEBA) on existing dignity assessment tools and on accounts of assessments of dignity were carried out. The SSR in SEBA on dignity assessment tools involving PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, Scopus, and CINAHL databases saw 22 full-text articles included from the 645 articles reviewed. The SSR in SEBA on accounts of assessments of dignity featured in the PubMed database identified 102 full-text articles which saw 46 articles included. RESULTS: The domains identified were factors affecting patients' definition of dignity; elements of dignity-conserving care; and components of effective tools. CONCLUSION: Current accounts to assess dignity and assessment tools fail to capture shifting self-concepts of dignity holistically. A portfolio-like appraisal of dignity is proposed to achieve assessments that are timely, longitudinal, and patient-specific. Portfolio-based assessments by members of the multidisciplinary team will better direct timely evaluations of relevant aspects of changing concepts of dignity, without losing the patient's holistic perception of dignity.

The relationship between perceived stigma and perceived stress in cognitive decline: a survey of persons with mild cognitive impairment and their caregivers.

Introduction: While Alzheimer's disease and other causes of dementia have rapidly become a global health crisis with growing incidence that is unabated, the incidence of Mild Cognitive Impairment (MCI) far exceeds that of Alzheimer's disease. Persons with MCI demonstrate some level of cognitive impairment, but daily functions remain intact and there is no certainty that they will develop dementia. Yet, the possibility conjures a considerable amount of fear and anxiety, further fueled by a vast array of misconceptions and stigma. The pervasive nature of this stigma permeates society and culture at many levels. Persons with MCI who are at higher risk for development of dementia may be especially vulnerable to fear and stigma associated with the diagnosis. Based on this premise, the primary aim of this study was to examine the relationship between perceived stigma and perceived stress in persons with MCI and their care partners, including the relationship between income and the study variables. The secondary aim was to examine the effect of a combined cognitive rehabilitation and wellness program on these perceptions. Methods: Thirty participants were recruited from Mayo Clinic's Health Action to Benefit Independence and Thinking (HABIT) program. MCI (n = 15) and care partner (n = 15) participants completed the Stigma Impact Scale (SIS) and the Perceived Stress Scale (PSS) before and after the HABIT program. Results: Average SIS and PSS scores decreased in the MCI, care partner, and combined groups, both pre- and post-HABIT. Linear regression was used to assess the relationship between perceived stigma and stress, controlling for income. A significant relationship was found between perceived stigma and perceived stress both pre and post-HABIT. Discussion: The results suggest a relationship exists between perceived stigma and perceived stress in persons with MCI and their care partners, and an educational program such as HABIT may strengthen this relationship by informing participants of potential challenges that occur in cognitive decline. Understanding these relationships may provide an opportunity to provide tools for this vulnerable population.

What does it mean to be an agent?

Artificial intelligence (AI) has posed numerous legal-ethical challenges. These challenges are particularly acute when dealing with AI demonstrating substantial computational prowess, which is then correlated with agency or autonomy. A common response to considering this issue is to inquire whether an AI system is "conscious" or not. If it is, then it could constitute an agent, actor, or person. This framing is, however, unhelpful since there are many unresolved questions about consciousness. Instead, a practical approach is proposed, which could be used to better regulate new AI technologies. The value of the practical approach in this study is that it (1) provides an empirically observable, testable framework that contains predictive value; (2) is derived from a data-science framework that uses semantic information as a marker; (3) relies on a self-referential logic which is fundamental to agency; (4) enables the "grading" or "ranking" of AI systems, which provides an alternative method (as opposed to current risk-tiering approaches) and measure to determine the suitability of an AI system within a specific domain (e.g., such as social domains or emotional domains); (5) presents consistent, coherent, and higher informational content as opposed to other approaches; (6) fits within the conception of what informational content "laws" are to contain and maintain; and (7) presents a viable methodology to obtain "agency", "agent", and "personhood", which is robust to current and future developments in AI technologies and society.

Dementia Arts Mapping: observational methods for documenting impacts of poetry and recreation in care settings.

BACKGROUND: Long-term care homes for older and disabled adults, including those who are living with dementia, facilitate a diversity of recreational activities and program as social interventions. The relationships between interventional elements and participant impacts are not well understood. METHODS: This paper explores a poetry methodology and reports the findings from a pilot test of Dementia Arts Mapping, a novel ethnographic observational technique, to better understand impacts of poetry and recreation on people living with dementia in long-term care settings. Between 2017 and 2020, at 17 skilled nursing facilities throughout Wisconsin, researchers situated within care homes observed participants during diverse activities. RESULTS: We found poetry workshops surpassed other activities in eliciting self-expression. CONCLUSIONS: Dementia Arts Mapping is an effective instrument for generating insights about dementia care and may be further enhanced for future use in research to inform care provision to foster meaningful engagement with people with dementia.

Assessing the effects of a mentoring program on professional identity formation.

BACKGROUND: Medical education has enjoyed mixed fortunes nurturing professional identity formation (PIF), or how medical students think, feel and act as physicians. New data suggests that structured mentoring programs like the Palliative Medicine Initiative (PMI) may offer a means of developing PIF in a consistent manner. To better understand how a well-established structured research mentoring program shapes PIF, a study of the experiences of PMI mentees is proposed. METHODOLOGY: Acknowledging PIF as a sociocultural construct, a Constructivist approach and Relativist lens were adopted for this study. In the absence of an effective tool, the Ring Theory of Personhood (RToP) and Krishna-Pisupati Model (KPM) model were used to direct this dual Systematic Evidence-Based Approach (Dual-SEBA) study in designing, employing and analysing semi-structured interviews with PMI mentees and mentoring diaries. These served to capture changes in PIF over the course of the PMI's mentoring stages. Transcripts of the interviews and mentoring diaries were concurrently analysed using content and thematic analysis. Complementary themes and categories identified from the Split Approach were combined using the Jigsaw Approach and subsequently compared with mentoring diaries in the Funnelling Process. The domains created framed the discussion. RESULTS: A total of 12 mentee interviews and 17 mentoring diaries were analysed, revealing two domains-PMI as a Community of Practice (CoP) and Identity Formation. The domains confirmed the centrality of a structured CoP capable of facilitating longitudinal mentoring support and supporting the Socialisation Process along the mentoring trajectory whilst cultivating personalised and enduring mentoring relationships. CONCLUSION: The provision of a consistent mentoring approach and personalised, longitudinal mentoring support guided along the mentoring trajectory by structured mentoring assessments lay the foundations for more effective mentoring programs. The onus must now be on developing assessment tools, such as a KPM-based tool, to guide support and oversight of mentoring relationships.