Ruth Brent Tofle

Creating a Place for Dying: Gerontopia

The place chosen by palliative care patients for dying is typically examined according to functional aspects of practical equipment and housing modification. This qualitative research reports on how the environment negatively impairs or positively enables and empowers patients through individual meaning, control/preference, and sensory perception. Of application for designers, health care providers, and families, this narrative study of caregivers provides specific attributes and examples of place making for palliative care environments. The article concludes with a discussion on imagining gerontopia—an individuals ideal environment in which to grow old and die.

Dementia Special Care Units

Abstract Despite continued interest and growth in special care units in the United States, there is no uniform agreement on characteristics for these units, specific outcomes, or satisfaction with them. This study examined family satisfaction with Dementia Special Care Units (SCUs) using a modified standardized instrument and follow-up interviews. The study included five SCUs in one state, three participating in a dementia SCU demonstration project. Family outcomes were evaluated using surveys and interviews. The only significant difference between facilities in the demonstration project and the comparison facilities was one variable noting family with residents in the demonstration project had more positive perceptions regarding resident safety. The study illustrates a need for policy makers to more clearly identify and regulate special aspects of SCUs, taking family perceptions into consideration.

The Last Habitat: Living and Dying in Residential Care Facility

Abstract This article is a part of a larger study regarding the place of dying. Through narrative analysis methods, we strived to obtain rich descriptions and idiosyncratic accounts of the experience of dying in institutional settings, predominately in the nursing home. The quality of the physical environment can impede or greatly enhance the extent to which a disabled older person can remain in his or her own home. Most of long-term care is provided by family members. However, as the condition of the care recipient deteriorates and the stress level of the caregiver increases, the need to supplement the informal care with formal care resources grows. Consequently, frail older adults may be relocated to a residential care facility. In other cases they may be discharged from a hospital to these institutional settings. Nursing homes are considered the last resort for frail, old people. Despite attempts to improve the environment of long-term care settings through “cultural change,” the overriding theme of much of the literature about the nursing home experience is one of rejection, loss, and in some extreme accounts, a “double burial” that equates relocation to a nursing home with a person’s final terminus of life.

The Motivations and Consequences of Dying at Home: Family Caregiver Perspectives

Abstract Although ample research suggests that individuals prefer to die at home, the realities of a home death experience, from the perspective of family members, are not well understood. The following study addresses this gap in knowledge via a narrative analysis about the process of dying at home. Five family caregivers participated in semistructured interviews about their experiences witnessing and supporting the end-of-life process of an older family member who died at home. Their stories paint a vivid picture about the motivations and consequences of the experience, including themes such as caregivers’ immense feelings of uncertainty regarding their caregiving abilities and decision making, the significance of the home environment as a symbol of comfort and security, the influence of family and social networks, and “dying well” as a social justice issue. Overall, the caregivers’ narratives support the notion that being at home is considered an essential aspect of ”dying well.” However, the narratives also demonstrate that dying at home presents many challenges for family members, especially to those with limited resources and social support. Thus, the authors caution against viewing the home death as a proxy for a good death.

Aging and Dying in Place: A Personal Journey

A phenomenological case study of a 93-year-old woman is a discussion of her transitions during a short two and a half week period of morbidity from living independently, to hospital, to nursing home, to grave. Her daughter, an environmental gerontologist, provides intimate conversations and reflections chronicled as she keeps vigil by her side 24 hours a day, 7 days a week. The phenomenological approach captures the emotional dying process and amplifies major issues of aging and dying in place for future study.

Modern Hospice Design: The Architecture of Palliative Care

therefore, it could be a good source for those scholars who are involved in comparative housing research. While that breadth of the book is a plus, it inevitably limits its capacity to drill deeper into some of the issues it raises. Chapter 8 (pp. 141–164) on the economic, social and cultural causes of homelessness is a case in point. The authors are constrained by space and scope in analysing how different factors contribute to homelessness in different countries. However, they have undertaken this analysis in many of their earlier research studies, to which due references have been given in the book. A book about a concept which is difficult to define must necessarily engage with theory and be grounded in empirical work. It should provide both a critique and an alternative. Indeed, this book does contain these elements. It is well researched, well written and carefully presented, with only minor editing problems, such as “become homelessness” (p. 1). This reviewer warmly recommends it to readers of this journal seeking to engage with these important worldwide concerns about the adequacy and inadequacy of shelter.