The Relationships Between Nursing Staff Knowledge of Personhood and Resident Cognitive Status

The purpose of this pilot study was to explore the relationships between nursing staff knowledge of extended care resident personhood and resident cognitive status. Eighty nursing staff from two similar extended care facilities in Arkansas completed a self-administered questionnaire to assess their knowledge of 21 residents, including information related to residents’ past jobs/careers; likes/dislikes/ interests; family members; other non-specific knowledge; and total knowledge. The Brief Interview for Mental Status (BIMS) was used to evaluate resident cognitive impairment. Results of a Pearson correlation demonstrate a positive correlation between (1) staff knowledge of residents’ families, and (2) total knowledge of residents with resident cognitive status. Findings suggest that nursing staff utilize creative interventions and exert intentional efforts to obtain resident information to preserve personhood and provide PCDC

Supporting Personhood in Dementia: Examining the Impact of Volition on Function in Everyday Occupations

Understanding volition and preferences for occupation is a critical underpinning of effective occupational therapy services that promote and preserve identity for persons with moderate dementia. Although it has been posited that this population has significant difficulty expressing volition for daily occupations, little research has examined the role of volition in guiding engagement in occupations. This phenomenological study provides an in-depth description and analysis of volition in eight persons with moderate dementia. Guiding questions related to understanding patterns of past life interests, outward demonstration of volition, volitional continuity. and the relationship of the social environment to volition and engagement in daily occupations, were used. Maximum variation sampling was used to recruit from one memory-support assisted living in a Midwestern continuing care retirement community. Participants were enrolled sequentially over an 11-month period. Participant observation and interviews of family and staff were the main data collection methods. The Volitional Questionnaire (VQ) was used to gain additional data about participants’ volition, and the Mini-Mental Status Exam (MMSE) provided a general indicator of cognitive impairment. Data analysis used van Manen’s phenomenological approach to uncover the phenomenon of volition. Three major themes emerged, and had a dynamic interaction: a) variation in volitional expression in the areas of interests, values, and personal causation, b) redefining meaningful occupation, reflected in four categories, and c) potency of the social environment, highlighting the pervasive influence of other people on participants’ volition. Participants’ lived experience of volition reflected the importance of the dynamic between the social environment and the person.The findings of this study support the importance of assessing volition for individuals in the context of their social world in order to maximize function and minimize excess disability. Further research is needed to address caregivers’ perceptions about volition, as well as examining the use of the VQ and specific intervention strategies that target volition

An Exploration of Dementia Friendly Communities from the Perspective of Persons Living with Dementia

The growing global prevalence of dementia coupled with a shift in public perception from a hopeless disease to the possibility of living well with dementia has led to the formation of dementia friendly communities (DFC). DFCs are a new phenomenon in the United States, with a gap in knowledge on input from people living with dementia (PLWD). This study investigated DFCs from the perspective of PLWD in Western North Carolina, with the following research questions: How are interactions and relationships experienced by persons living with dementia in the community? How is community engagement experienced by PLWD? To what extent and in what way is the impact of stigma associated with dementia? What are the attributes of a DFC from the perspective of PLWD? Eighteen older adults with reported dementia or memory loss were recruited from support groups or community organizations. Semi-structured interviews were conducted in participants’ homes and analyzed using conventional qualitative content analysis. Three major themes emerged from the transcribed interviews (a) transitions in cognition: vulnerable identities, (b) social connections, and (c) engagement in life activities. The dynamic experience of living with dementia revealed by participants suggested the following attributes of a DFC: (a) social inclusion, (b) support for role continuity, (c) availability of meaningful and contributory activities, (d) flexible support as cognition transitions, (e) community dementia awareness (to combat stigma), and (f) a supportive diagnostic process. The presence of care partners in the interviews was supportive, and the evaluation to sign consent tool assisted in determination of participant capacity to self-consent. The findings were interpreted through the theoretical frameworks of personhood, the social model of disability, human rights and citizenship, the environmental press model, and transitions theory. DFC development requires a contextual lens focused on well-being with input from multiple stakeholders including PLWD. Collaboration among community organizations supported by local, regional, and national policy supporting flexible service provision through cognitive transitions has the potential to provide a strong social network on which to build a DFC

Becoming intersubjective 'in medias res' of behaviours that challenge in dementia:A layered autoethnography

Behaviours that challenge in dementia, often described and diagnosed as behavioural psychological symptoms in dementia (BPSD) are experienced by over 90% of people living with dementia, and 75% of those admitted to hospital, with 43% of nurses reporting these behaviours as severely distressing to them. During behaviours that challenge moments in dementia there is an intersubjective relationship between the person living with dementia and the nurse. This can lead to both the nurse and the person living with dementia experiencing a variety of emotions. I suggest that much of the emotion that exists is created by interactions between our lived stories, which also have the potential of influencing the intersubjective experiential outcome. The study aims to make sense of my (first-person) experiences of intersubjectivity in medias res (Latin for in the midst) of behaviours that challenge in dementia, and also consider how I as a nurse can manage that intersubjective moment to achieve a positive outcome. I used layered autoethnography as my study’s methodology to gather retrospective personal and professional experiential data in moments where ‘I’ as a nurse have faced personal and professional challenges, and in doing so made relational connections between the two. To explore these connections my study was framed within a Deleuzian theory of time, where the pure past, meets the living present, creating a transient becoming future synthesis. Data was managed and analysed through rhizoanalytical methods, including Deleuzian-Guattarian rhizomatic mapping. The study established that although the ability to remain intersubjective remains for people living with dementia, interactions are often on an emotional level and not always based in the living present. It is therefore my role as a nurse to consider the story of other, whilst also evaluating self during moments of challenge by engaging in metacognitive and empathically curious nursing practice

As Long As I\u27m Me : From Personhood to Personal Identity in Dementia and Decision-making

As people, especially older people, begin to develop dementia, we confront ethical questions about when and how to intervene in their increasingly compromised decision-making. The prevailing approach in philosophically-inclined bioethics to tackling this challenge has been to develop theories of “decision-making capacity” based on the same characteristics that entitle the decisions of moral persons to respect in general. This Article argues that this way of thinking about the problem has missed the point. Because the disposition of property is an identity-dependent right, what matters in dementia and decision-making is an individual’s personal identity with their prior self, not their moral personhood. Therefore, in considering when and how we ought to intervene in the decision-making of those with dementia, we must look to the philosophy of personal identity rather than personhood

Using appreciative inquiry to implement person-centred dementia care in hospital wards

The quality of care of persons with dementia in hospitals is not optimal and can be challenging. Moreover, staff may find difficulty in translating what they have learned during training into practice. This paper report the development and evaluation of a set of workshops using an Appreciative Inquiry (AI) approach to implement person-centred dementia care in two hospital wards. Staff worked collaboratively to develop a ward vision and to implement a number of action plans. Using AI approach, staff attitudes towards persons with dementia improved, inter-professional collaboration was enhanced and small changes in staff practices were noted. Dementia care in hospitals can be enhanced by empowering staff to take small but concrete actions after they engage in AI workshops, during which they are listened to and appreciated for what they can contribute

“The Music is Still There”: Hearing from Individuals with Dementia Who Sing Together

Music therapy is increasingly recognized as a valuable component of dementia care, yet research on group singing with this population is relatively limited, as is qualitative research that uses this population’s firsthand accounts to understand their experiences. The current study provided a means for individuals with dementia to express how they experienced music therapist-led group singing in a residential care home. The guiding research question was: What is the experience of music therapist-led singing group for individuals with dementia living in a residential care home? Six male residents, diagnosed with moderate to advanced dementia and ranging in age from 78 to 92 years, participated in six 30-minute group singing sessions facilitated by a music therapist who also played the piano. Data was collected in a community-based setting through observation, field notes, video recording, and individual interviews (fully recorded and transcribed), which were analyzed using an observational checklist (Davidson & Fedele, 2011) and Interpretive Phenomenological Analysis (Smith & Osborn, 2003). Six themes were produced: (1) Self as a Performer; (2) Self as Part of a Group; (3) Live Music is Special; (4) Music is a Gift; (5) Gaps in Time, Memory and Ability; and (6) The Music Is Still There. Conclusions included support about the value and appropriateness of engaging individuals with dementia in research, as well as in group singing led by a music therapist; and evidence supporting group singing as an aspect of dementia care that contributes to well-being

Chasing Vapors within a Disappearing Mist: Conceptualizing Dementia Narratives

The built environment within healthcare institutions is of critical importance to persons with dementia, as the characteristics of the interior environment, the lived experience within, and the reciprocal nature of that exchange can be directly related to their well being. Yet the role of the environmentand more importantly, the role of the patient as a primary author towards conceptions of what that physical environment should look and feel likerarely feature in routine dementia patient satisfaction assessments. This research sought to understand whether patients with dementia have the capacity to perceive the institutional space and place around them, and if so, how. Participants with mild to moderate dementia living in an institutional setting who could provide consent were asked a number of lived experience questions. The responses were videotaped and scored qualitatively. The results suggest that patients with dementia are aware of the institutional space around them, and can be active agents when contributing to thoughtfully designed environments that promote the health and well being of its residents. If persons with dementia are thought of as active participants within the design of the built environment, then this can lead to new reconceptualization of spatial domains and ultimately impact care

Mortality as Framed by Ongoingness in Digital Design

This article presents a number of perspectives on mortality in light of both Victorian mourning and memento mori jewelry and bereavement therapy and grieving. Both help to reveal valuable qualities for digital design. The article then illustrates how these qualities influenced the design of four digital lockets, examining how both Victorian and modern practices relate to mortality, mourning, grief, and death, and exploring possibilities for digital design. Finally, ongoingness—by reference to the work of artist Moira Ricci—is explained as both a theoretical construct and a resource for design practice. Central in the proposal is the notion that, rather than being distanced or detached from the deceased (as has been the predominant grieving therapy approach of modernity), the bereaved can continue to have an active and growing relationship with them