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This research explores the use of haiku poetry to connect with persons with dementia. The happenings during two one-hour sessions provide the main focus for this study. These sessions were part of an ongoing spiritual care program on the secure dementia unit of a long-term care facility. The sessions were co-facilitated by the chaplain who leads the ongoing program, and by myself as both guest poet and researcher. Haiku were used as prompts to reminiscence. Words and phrases from the stories that were spoken during the session became the building blocks for creating collaborative haiku within the group setting. “Inferences all over” was spoken by a person with severe dementia and became a part of one of the collaborative haiku. This comment is remarkable for its association to poetry where the words on the page often only hint indirectly at a deeper meaning, and for its association to spirituality where the stories we tell often only hint at our deeper truth. The ambiguity around what is evident and what is implied paradoxically invites connection. The first chapter of this thesis, Beginning, describes the format of a haiku session where building connection is the primary intention. It also explores issues around the creative arts. “Inferences all over” also speaks to the hermeneutic phenomenological approach of this thesis, where the stories speak for themselves. These stories appear in the second chapter entitled During, along with insights gleaned from interviews. “Inferences all over” well describes the third chapter, After, where I reflect on my experiences as a participant in this research, and where I detail some of the ripples of this study into the dementia care, haiku, and educational communities. “Their capacity to delight” in the thesis title was spoken by the chaplain who developed the spiritual care program. Her belief in the possibility of connection with persons with dementia forms the bedrock of the program—where hospitality invites connection and validation affirms their responses. This capacity has implications for all teaching—formal as well as informal—as it invites learning as an experience to enjoy rather than endure. / Thesis (Master, Education) -- Queen's University, 2008-04-24 09:27:30.949

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This study concerned assessments of attitudes towards demented patients among students and nursing staff as well as attitudes towards active euthanasia, wish to transfer to other jobs, ability of empathy and experience of burnout among nursing staff. The study aimed also to relate experience of burnout to attitudes towards demented patients, ability of empathy and experience of work with demented patients. The study was performed by use of questionnaires, scales measuring attitudes towards demented patients, experience of burnout and ability of empathy. Tape-recorded interviews were also included aiming to explore the staffs experience at work. The results showed that a majority of the students and staff held positive attitudes towards demented patients. A small proportion intended to work solely with demented patients. Staff working in psychogeriatric care and somatic long-term care held more positive attitudes than staff working in acute medical care. Proportions of staff with positive attitudes varied depending on age, duration of employment, education and place of work. A larger proportion of staff in geriatric care than in acute care reported a wish to transfer to another job. LPN’s in nursing homes to the largest proportion stated this wish to transfer. A majority of both students and staff expressed negative attitudes towards active euthanasia to severely demented patients in the finale stage of life. However, most favourable attitudes towards active euthanasia were found among students with shorter health care education and among nurse's aides and LPN’s. The staffs empathy was judged as moderately high and there were no differences found in relation to sex, staff category or place of work. Experience of burnout /tedium varied with the place of work and category of staff. Largest proportions at risk to develop burnout were found among those working in somatic long-term care and psychogeriatric care. RN’s showed lower burnout scores than nurse's aides and LPN’s. Experience of burnout was correlated to attitudes towards demented patients, indicating that the lower burnout score the staff have the more positive are the attitudes. Burnout was also related to the staffs ability of empathy i.e. the lower degree of burnout the higher is the empathie ability. Regression analysis showed that "Experience of feed-back at work” and "Time spent at present place of work" were the most important factors for the staffs experience of burnout. / <p>Diss. (sammanfattning) Umeå : Umeå universitet, 1990, härtill 7 uppsatser.</p> / digitalisering@umu

People with advanced dementia often struggle to maintain relationships and can ultimately experience social death before their physical death. Social death occurs when a person is no longer treated as an active agent in their relationships. Relationship-centred care acknowledges the relational nature of care-giving and care-receiving, validating the support needs of both care-givers, and the person receiving care. In the context of care-giving and care-receiving, a person with advanced dementia can become viewed as a passive recipient of care. In the context of caring for people with advanced dementia, more needs to be understood about how caring relationships can be sustained until the end of life in a way which challenges the social death of people with advanced dementia, and supports carers. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life. Dementia is often associated with the loss of the person. Kitwood (1997) has been highly influential within dementia care in challenging the loss of personhood, and reconsidering the grounds of personhood, emphasising relationships over cognition. Kitwood’s often cited definition of personhood is: ‘a standing or status bestowed on one human being, by another, in the context of relationship’ (Kitwood 1997 p8). Kontos (2004) however, critiques this social interactionist view of personhood, suggesting it potentially relegates the ‘body’ to a symbolic position rather than guaranteeing personhood. Her work examines the way that personhood is embodied, and how this persists when a person has advanced dementia. She suggests that attention to the embodied aspects of personhood could act as an important counter to the social death of people with advanced dementia, increasing the scope and opportunities for interpersonal relationships, and improved quality of care and quality of life. Zeiler (2013) and Jenkins (2013) develop this theory further, describing intercorporeal personhood springing forth through, and in, interaction, enabling individuals who cannot express themselves without support to do so in interactions. The principle aim of this doctoral research is to examine the care-giving/care-receiving relationship, in palliative dementia care, through the theoretical lenses described above. The research took place in a care home called ‘Primrose Hill’ (a pseudonym): a specialist dementia care home (without nursing), with an increasingly frail population with multiple co-morbidities. Fifteen residents died during the 10 months of the study. The research employed an ethnographic approach, using participant observation alongside interviews and group discussions with staff. Attention was given to how people with dementia responded to care and how they were positioned within the caring relationship; were they seen as passive recipients of care or as active agents, objects or subjects? The approach was appreciative in intent, based on the assumption that care home staff, and people with dementia who live in care homes, through their experience of the human encounter, have important things to teach families, and others working in dementia care, including policy makers and care regulators. When articulated and shared, their experiences can challenge the stereotype of dementia as a ‘death that leaves the body behind’. The empirical analysis revealed three keys facets which shape the caring relationship: body work (direct hands-on bodily care); recognising and supporting selfhood; witnessing and responding to suffering. These three facets of palliative dementia care are examined and reveal the way that people with dementia, even in the advanced stages, continue to experience and respond to the world, and those around them, until they die. This is used to develop the conceptual underpinning of relationship-centred palliative dementia care. The Senses Framework (Nolan et al 2006), which sets out the conditions required for relationship-centred care to occur, is expanded to incorporate embodied selfhood and intercorporeal personhood. The research concludes by arguing, using Ethic of Care theory as an interpretive framework, that an expanded understanding of personhood that includes the ‘body’ is vital, not only at the frontline, but also at a political and societal level, if care is to have integrity.

Care work is emotionally and physically demanding and is coupled with organisational challenges. As such, care work has been associated with emotional exhaustion which not only negatively impacts staff but also the care that they provide. Greater understanding of the psychological health of dementia care staff and their perceptions of their work will provide insights into how this group may be better supported. The first paper provides a review of the literature relating to psychological outcomes in dementia care staff. The literature identified was viewed in terms of an existing model of psychological health, the BASIC Ph, with the aim of evaluating the evidence and enhancing understanding of psychological health in this group. The utility of this model was also evaluated. The model highlighted areas for potential intervention as well as those for future research. Clinical implications for Clinical Psychologists were also discussed. The second paper aimed to increase understanding of the experiences of dementia care assistants who perceived themselves to be competent in their role. Eight care assistants who had high levels of self-efficacy were interviewed. Interpretative Phenomenological Analysis (IPA) revealed four superordinate themes. Accounts of experiencing dilemmas provided important contextual information and constituted the first superordinate theme. The second theme 'togetherness and connection' described participants' experience of the need for support, closeness and the value of engaging with older people with dementia. The third theme encompassed the attunement between care assistants and the older people for whom they cared and described empathy, personal perspective-taking and circularity of emotion as guides to care. The final theme 'caring as part of life' described the link between caring and identity as well as a genuine interest in people, an accepting attitude and motivation to care. These themes provide fruitful areas for further research and have implications for care staff training.