Lorna de Witt

Living alone with dementia: An interpretive phenomenological study with older women

AIM This paper is a report of a study of the meaning of living alone from the perspective of older people with dementia. BACKGROUND Risks and problems experienced by older women living alone have been investigated mostly through quantitative research. Balancing their safety and autonomy is a serious international community care dilemma. Older peoples perspectives have been muted in qualitative research on living alone with dementia. METHOD Using an interpretive phenomenological approach and van Manens method, 14 interviews were conducted in Ontario, Canada from January 2004 to April 2005 with eight older women diagnosed with Alzheimer disease or a related dementia. FINDINGS The theme holding back time expressed the temporal meaning of living alone. Pharmacological treatments represented stored time, offering the opportunity to hold back future dreaded time. Past experience with others with dementia was a context for holding on to now and facing some risks of living alone with memory loss. The women acknowledged the limited time remaining for, and identified endpoints to, living alone. CONCLUSION Insight into the impact of past experience with others with dementia could inform nursing assessment and advocacy for health/social services that are sensitive to the potential emotional impact of mixing people with varied levels of dementia in the same programme.

Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance

Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care.

Caring for older people living alone with dementia: Healthcare professionals’ experiences

Older adults living alone with dementia are at greater risk of placement in long-term care homes compared with those living with others. Healthcare professionals have vital roles in supporting them to continue living in the community. Yet, little is known about how healthcare professionals fulfill these roles and what their experiences are like. The study purpose was to describe health care professionals’ experiences of caring for older people with dementia living alone. Using a qualitative descriptive approach and qualitative content analysis method, 15 healthcare professionals were interviewed in Ontario, Canada. The overall theme of the findings, doing the best we can for them, involved discussing sensitive care issues with what professionals viewed as gentle realism. Walking the tightrope expressed tensions in meeting professional responsibilities. Constraints (my hands are tied) and boundaries (it’s not my job, it’s not my decision) described perceived limitations on professional roles. Effects of the emotional struggle involved in working with these older people were lessened by believing I did the right thing. The findings have implications for what we could do better for older people with dementia living alone, through integration of person-centered/relationship-centered principles in education programs, community agency policies, a national dementia care strategy, and culture change in community care.

It was like reading a detective novel: Using PAR to work together for culture change.

Participatory action research (PAR), with its focus on engagement and collaboration, is uniquely suited to enhancing culture change initiatives in dementia care. Yet, there is limited literature of its application to culture change approaches in care settings, and even less in dementia specific care contexts. To address these gaps in the literature, the purpose of this paper is to examine the complexities of a PAR project aimed at changing the culture of dementia care in two diverse dementia care settings, including a long term care (LTC) and community care setting. Drawing from data gathered throughout the PAR process, we unpack the challenges experienced by participants working together to guide culture change within their respective care settings. These challenges include: overextending selves through culture change participation; fluctuating group membership; feeling uncertainty, confusion and apprehension about the process; frustratingly slow process; and seeking diverse group representation in decision making. We also highlight the potential for appreciative inquiry (AI) to be integrated with PAR to guide a process whereby participants involved in culture change initiatives can develop strategies to mitigate challenges they experience. We view the challenges and strategies shared here as being constructive to would-be culture change agents and hope this paper will move others to consider the use of PAR when engaging in culture change initiatives.

You're saying something by giving things to them: communication and family inheritance

The study purpose was to contribute to a more complete understanding of the experience and meaning of family inheritance. The aim of this article is to describe and discuss the meaning of communication in inheritance experiences among Canadian families. A constructivist/interpretive methodological approach guided this research. Participants were recruited through purposive, convenience sampling from two cities and one town in southern and southwestern Ontario, Canada. Fifty face-to-face, semi-structured, audio-taped, in-depth interviews were conducted between June 2006 and April 2007. NVivo software was used to organize and analyze the data. A content analysis method guided data analysis. Participants interpreted the meaning of family structure, relationships, feelings, and past inheritance experiences to construct their family inheritance communication. Analysis of the findings revealed four themes regarding the role of communication in family inheritance including: (a) avoiding conflict and preserving biological ties, (b) resisting conversations about possessions, (c) achieving confidence withpossession communication, and (d) lasting effects. Participants from non-blended and blended families experienced similar inheritance communication challenges related to past experience with their parents’ wills and distribution of their own possessions. Participants with past positive inheritance experiences with parents adopted similar strategies when communicating their own inheritance wishes. Negative messages conveyed to participants by their parent’s wills inspired participants to communicate in opposite ways in their own inheritance planning. The study findings are useful for gerontologists, lawyers, family counselors, and estate planners.

Relationship-centered dementia care: Insights from a community-based culture change coalition

This article reports on the work of a community-based culture change coalition affiliated with the Partnerships in Dementia Care Alliance, a research network committed to strengthening dementia care through supporting relationship-centered care approaches. Research to date emphasizes negative aspects of dementia care relationships. Drawing on data the culture change coalition collected as part of their culture change work using participatory action research guided by appreciative inquiry, this article examines what relationship qualities contributed to positive dementia care experiences and how positive relationships were created. Five types of care partners participated in the study through questionnaires, focus groups, and a mini appreciative inquiry summit. Data were analyzed collaboratively with culture change coalition members. Early in the analysis process, the aspiration statement “Relationships are at the heart of dementia care in [name of] County,” was developed and informed further thematic analysis. Findings revealed several relationship characteristics including friendship, commonality of experience, developing trust and feeling appreciated, reciprocity, and taking time/making time for relationships. As this article illuminates, relationship-centered programs and policies have the potential to foster positive dementia care experiences among diverse care partners in community settings.

Many older people felt that electronic care surveillance increased their safety and enabled them to live alone in their own homesCommentary

ED FROM Essén A. The two facets of electronic care surveillance: an exploration of the views of older people who live with monitoring devices. Soc Sci Med 2008;67:128–36. Correspondence to: Dr A Essén, School of Business, Stockholm University, Stockholm, Sweden; aes@fek.su.se Source of funding: no external funding. C O M M EN TA R Y I ncreasingly, older people are living alone, and their preference to ‘‘age in place’’ as their health changes is well documented. Research is needed to develop interventions that enable frail, vulnerable older people to safely continue living alone at home. The findings reported by Essén might have been strengthened by linking the study methods to an overarching qualitative research methodology. However, the study contributes important new knowledge about privacy as a barrier or facilitator of the acceptance of in-home electronic healthcare surveillance among older people who were actively being monitored. Additionally, the importance of sustained relationships with trusted care providers informs an issue concerning the replacement of people by technology. 3 The findings have 2 main implications for practitioners in support of surveillance systems. First, practitioners can integrate the dual character of privacy into discussions about the risks and benefits of such technology with older people who are considering its use. Second, the vital role of continued therapeutic relationships and contact with older people who are monitored is highlighted. 3 Further research is needed to understand decision making related to use of surveillance systems and varied approaches to privacy among older people. 5 Lorna de Witt, RN, PhD University of Windsor, Faculty of Nursing Windsor, Ontario, Canada 1. United Nations. Living arrangements of older persons around the world. New York, USA, 2005. http://www. un.org/esa/population/publications/livingarrangement/ report.htm (accessed 25 Sep 2008) 2. Demiris G, Rantz M, Aud M, et al. Older adults’ attitudes towards and perceptions of ‘‘smart home’’ technologies: a pilot study. Med Inform Internet Med 2004;29:87–94. 3. McCreadie C, Tinker A. The acceptability of assistive technologytoolderpeople.Ageing&Society2005;25:91–110. 4. Cantor MD. No information about me without me: technology, privacy, and home monitoring. Generations 2006;30:49–53. 5. Westin AF. Privacy and freedom. New York: Atheneum, 1967. Qualitative 32 EBN January 2009 Vol 12 No 1