On being outdoors: How people with dementia experience and deal with vulnerabilities.

Vulnerability is a problematic label routinely applied to people with dementia, yet their situated experiences of vulnerability have not been prioritised or documented. Drawing on empirical data collected using a novel methodology - walking interviews with 15 people with dementia living in Southern England, followed by a sit-down interview that included a nominated family member - this paper advances understanding of how vulnerability is experienced and dealt with by people with dementia when outdoors, and at times shared with family carers. Data were analysed using abductive techniques; a thematic coding framework was created from the dataset, in addition to the application of critical theories of vulnerability and disability. We found that vulnerability is characterised by a sense of 'ontological vulnerability' for the person diagnosed with the condition - that is, an awareness of failing knowledge about oneself or the 'rules' of outdoor life, which individuals experienced emotionally and dealt with civically. People with dementia attempted to manage risks and anxieties, often doing this independently so as not to burden family members. These findings highlight how people with dementia experience and deal with vulnerability when outdoors, which others need to acknowledge and support to enable people with dementia and their families to work though these challenges, in a family-orientated way when risk planning.

An ordinary life: People with dementia living in a residential setting.

The aim of this research was to explore the experiences of care support workers and family members of the impact of a new care approach in a specialised unit as it shifted from a clinical to an inclusive model, focused on creating an ordinary life for people with dementia and their families. The research was a partnership between the unit staff and university researchers. Using a qualitative approach, data were collected in focus groups with 11 family members and nine staff members. Thematic analysis identified the themes personalised care for people with dementia, family involvement - continuing to care, and staff competence and confidence to care. A personalised approach to supporting people with dementia was considered paramount, communicative family-staff relationships enhanced the social environment, and competence enhanced confidence and quality care. Participants identified positive ways of working that benefited staff and families and they reported increased well-being for the people with dementia on the unit. Developing well-articulated and systematically implemented local models of care provides opportunities for family and staff creativity and engagement, enhancing care for people with dementia. Strong and effective leadership is required to enable these approaches to become a reality.

New risks: the intended and unintended effects of mental health reform.

In crisis situations, the authority of the nurse is legitimised by legal powers and professional knowledge. Crisis stakeholders include those who directly use services and their families, and a wide range of health, social service and justice agencies. Alternative strategies such as therapeutic risk taking from the perspective of socially inclusive recovery policy coexist in a sometimes uneasy relationship with mental health legislation. A critical discourse analysis was undertaken to examine mental health policies and guidelines, and we interviewed service users, families, nurses and the police about experiences of accessing services. For those who attempt to access services early in crisis, as is suggested to lead to a better outcome, provision of services and rights appear to be reversed by an attempt to exclude them through practices that screen them out, rather than prioritising a choice in access.

Getting to the Heart of the Story: Using Talanoa to Explore Pacific Mental Health.

Talanoa is an established format for generating discussion about complex topics used throughout the Pacific. Pacific researchers use talanoa to gather data with migrant Pacific Island populations, in countries such as the United States of America, Australia, and Aotearoa/New Zealand (A/NZ). Using talanoa in this way, changes the way that the approach is used as, on the one hand it is out of its original context, and on the other hand, extends its use to gather data with Pacific Islanders. In this article, we discuss the implementation of talanoa in an explorative qualitative research project, and discuss its effectiveness and usefulness for getting to the heart of the story about Tongan interpretations of mental illness and distress.

Citizenship and people living with dementia: A case for the ethics of care.

The ethics of care is an emerging field of interest in many disciplines, including care for people with dementia. The ethics of care as proposed by Joan Tronto is a political argument for care together with a set of principles, the integrity of care, to guide and critique practice. This two-pronged approach enables on one hand, a political, complex and situated examination of inequality, and on the other hand the integrity of care provides a set of principles to guide inclusive citizenship practices. This approach has the significant advantage of recognition of the fight that people with dementia face to achieve rights and citizenship as an issue of social justice. In this paper, three challenges to citizenship are discussed in relation to people with dementia using an ethics of care lens: (a) citizenship as a relationship between the individual and the state; (b) citizenship as a practice and (c) citizenship as identity and belonging. I propose that citizenship can be achieved by promoting inclusion in defining and creating policy, research and practice.

Qualitative exploration of family perspectives of smoke-free mental health and addiction services.

The significant health disparities experienced by people with mental illness indicate the need for mental health service improvement. This qualitative study explored family and whanau (Maori family group) perspectives of smoke-free mental health services. Thematic analysis found that family and whanau identified a number of barriers to the implementation of successful smoke-free policy, including lack of coordination and consistency, and limited, if any, family and whanau inclusion. Family and whanau discussed smoking as a strategy for coping with anxiety and boredom; therefore, the need for other activities and strategies to replace smoking was identified as necessary in effective service delivery. The attitude that mental health service policy should be different from general health policy, due to the experience of mental distress, was also identified. In this paper, we argue that the development and implementation of quality mental health services would be strengthened by involving family and whanau in smoke-free initiatives. Furthermore, the provision of relevant information to family, whanau, and service users would help dispel myths and stigma associated with tobacco and mental health.

Sustaining citizenship: people with dementia and the phenomenon of social death.

Social death is apparent when people are considered unworthy of social participation and deemed to be dead when they are alive. Some marginalized groups are more susceptible to this treatment than others, and one such group is people with dementia. Studies into discrimination towards older people are well documented and serve as a source of motivation of older people's social movements worldwide. Concurrently, theories of ageing and care have been forthcoming in a bid to improve the quality of responses to older people in times of need. Included in this theorizing has been the analysis of values and approaches that paid carers convey to citizens who require their help. In this article, the values and approaches of social workers and mental health nurses bring to people with dementia are considered within the context of social life and social death. It is based on a small study that undertook to critically examine how participation of people with dementia was facilitated. A thanatological lens was used to interpret inclusive and exclusive practices which potentially create opportunity for participation or reinforce the loss of citizenship for older people with dementia.

Representations of people with dementia - subaltern, person, citizen.

This study traces shifts in health professional representations of people with dementia. The concepts of subaltern, personhood and citizenship are used to draw attention to issues around visibility, voice and inclusion. Professional discourses and practices draw upon, and are shaped by historical and contemporary representations. Until recently, people with dementia were subaltern in nursing and medical discourses; marginalised and silenced. The incorporation of contemporary representations foregrounding personhood and citizenship into health professional accounts provide space for transformative styles of care. Privileging personhood centralises the person with dementia in social networks, focusing on their experiences and relationships. Respecting citizenship involves challenging discrimination and stigma: nursing from a rights-based approach necessitates listening and being responsive to the needs of the person with dementia. Incorporating contemporary representations in health professional practice requires the discarding of the historically dominant elite and authoritarian accounts of dementia still apparent in some nursing texts along with, perhaps, the historically burdened term of dementia itself.

Achieving care and social justice for people with dementia.

This article draws on two studies that have used an ethic of care analysis to explore lay, nursing and social work care for people with dementia. It discusses the political as well as the practice application of ethic of care principles and highlights the necessity to understand both what people do and the meanings with which such practices are imbued in order to identify ;good care' and the relationship between this and social justice. Examples of care for people with dementia are discussed by reference to core principles of an ethic of care: attentiveness, responsibility, competence, responsiveness and trust. These illustrate the potential for the development of a shared language within which different disciplines, lay carers and people with dementia can communicate about how needs could best be met in complex and difficult circumstances.