Walking the Tightrope between Study Participant Autonomy and Researcher Integrity: The Case Study of a Research Participant with Alzheimer's Disease Pursuing Euthanasia in Switzerland.

This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer's disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant's autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members' "mandated reporter" status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant's trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.

The Precarity of Older Adults Living Alone With Cognitive Impairment.

PURPOSE OF THE STUDY: To examine the lived experience of older adults living alone with cognitive impairment to better understand their needs and concerns. Based on our previous work suggesting that older adults living alone often experience a sense of precarity, we were interested in exploring this construct in older adults living alone with a diagnosis of cognitive impairment. The notion of precarity points to the uncertainty deriving from coping with cumulative pressures while trying to preserve a sense of independence. DESIGN AND METHODS: This is a qualitative study of 12 adults aged 65 and older living alone with cognitive impairment. Six participants had a diagnosis of Alzheimer's disease; 6 had a diagnosis of mild cognitive impairment. Participants' lived experiences were elicited through 40 ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. RESULTS: Qualitative analysis of transcripts revealed three themes. Theme 1 described the distress stemming from the uncertainty of having cognitive impairment that has an unpredictable course. Theme 2 drew attention to the tendency of participants to feel responsible for managing their cognitive impairment. Theme 3 described the pressures stemming from the lack of appropriate services to support independent living for persons with cognitive impairment. IMPLICATIONS: These 3 themes all pointed to facets of precarity. Findings also suggest the dearth of programs to support older adults living alone with cognitive impairment and the need to develop novel programs and interventions.

Identity, Semiotics, and Use of Symbols in Adult Day Services.

Purpose: This article explores experiences of older adults attending an Adult Day Service (ADS) center. We focus on semiotics, which is ADS clients' use of symbols to communicate with others and to assert their personal and social identities. We refer to the ADS as a semiosphere-a term that refers to the dense, symbolically mediated interactions among this community. Methods: Ethnographers observed and interviewed clients, family, and staff members at the religiously affiliated ADS. They focused on the daily life worlds of those who attended and worked there. Results: We identified three elements through which clients expressed and communicated in semiotic ways, aspects of their identity: (a) music and dance, (b) individual use of a symbol-a doll and, (c) symbolic organization of space through seating patterns at activity tables. Elements were created and shared communally. Discussion: The ADS, as a cultural entity, is itself an illustration of symbolic complexity. Ideologies about aging, dementia, identity, and the ADS' role in improving elders' cognition and health are structured into the setting, forming a semiosphere. Our study revealed that elders, with staff members' help, created a cultural world at the ADS.

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer's Disease When One Lives Alone.

BACKGROUND: One third of older adults with cognitive impairment live alone and are at high risk for poor health outcomes. Little is known about how older adults who live alone experience the process of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer's disease (AD). OBJECTIVE: The aim of this study was to understand the effects and meanings of receiving a diagnosis of MCI or AD on the lived experience of older adults living alone. METHODS: This is a qualitative study of adults age 65 and over living alone with cognitive impairment. Participants' lived experiences were elicited through ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. RESULTS: Twenty-nine older adults and 6 members of their social circles completed 114 ethnographic interviews. Core themes included: relief, distress, ambiguous recollections, and not knowing what to do. Participants sometimes felt uplifted and relieved by the diagnostic process. Some participants did not mention having received a diagnosis or had only partial recollections about it. Participants reported that, as time passed, they did not know what to do with regard to the treatment of their condition. Sometimes they also did not know how to prepare for a likely worsening of their condition, which they would experience while living alone. CONCLUSION: Findings suggest the need for more tailored care and follow-up as soon as MCI or AD is diagnosed in persons living alone.

Visitors and Resident Autonomy: Spoken and Unspoken Rules in Assisted Living.

Purpose of the Study: This article explores resident autonomy in assisted living (AL) and the effects that visitors and visiting the AL have on that autonomy. We examine formal and informal policies that govern visiting in AL, stakeholders' views and enforcement of these policies, and the complex arrangements that visiting often entails in everyday life in the setting. Design and Methods: Data are drawn from a multiyear ethnographic study of autonomy in AL. Research from multiple sites included participant observation, informal and in-depth, open-ended interviews of various stakeholders, and the writing of field notes. Research team biweekly discussions and the Atlas.ti software program facilitated coding and analysis of interview transcripts and fieldnotes. Results: Our ethnographic data highlight complicated factors related to visitors and visiting in AL. We discuss two important aspects of visiting: (a) formal and informal policies at each setting; and (b) how resident autonomy is expressed or suppressed through rules about visiting in AL. Implications: Our data underscore the importance of resident autonomy and quality of care in relation to visitors and visiting, especially how this relationship is affected by inconsistent and confusing formal and informal visiting policies in AL.

Chronic Illness and Generativity in Late Life: A Case Study.

Purpose of the Study: This article presents a narrative-based case study about chronic illness and genetic uncertainty and their relationship to generativity throughout the life course. Our focus is a woman who experienced vision loss early in life and interpreted its impact on her generativity through present-day biographical rescripting. Design and Methods: The case we present was chosen from the study "Generativity and Lifestyles of Older Women," which explored life history, social relations, and forms of generativity in an ethnographic interview format with 200 older women. Results: In constructing a present-day identity, the informant used shifting and conflicted self-constructions to produce a self-image as generative. Three critical themes emerged in understanding her life course: (a) retrospective interpretations of autonomy; (b) renegotiating control in the present, and (c) generativity across the life course. Implications: This article contributes an understanding of childlessness as observed through the lenses of chronic illness, autonomy, and generativity. We conclude that a history of chronic illness, as it is co-occurring with internal debates about the meaning of key life events, may influence older adults' present-day identity. Implications for later life care needs are discussed.

The meaningfulness of time; Narratives of cancer among chronically ill older adults.

This study, using ethnographically-based interviews, sought to describe how chronically ill older adults experience a new cancer diagnosis and the effects of this on their interpretations of personal health, aging, and the future. Three semi-structured interviews were conducted with each of the fifteen informants. We asked questions that explored each individual's life history, chronic illness occurrence, and direct experiences with cancer. Interviews were structured to provide social and historical contexts to enhance our understanding of the informants' illness narratives. Interview transcripts were analyzed thematically to describe how individuals described the cancer experience, its meaning, and its consequences. One of the major findings of our study was the role of cancer in disrupting individual biography, an interruption that fragmented time into three distinct segments: the Recalled Past, the Existent Present, and the Imagined Future. We highlight three main themes around the experience of illness-related time: (1) disruption found in individual biographical accounts as a result of fragmented time dimensions; (2) altered projections of a continuous sense of self into the future; and (3) modified treatment decisions resulting from a perceived altered life course and the finitude of advancing age. We further introduce the concept of Anomalous Time as a permutation of time central to individual experiences of cancer. Implications for how older adults understood their cancer and individual reactions relevant to seeking care are discussed.

Generativity in Elderly Oblate Sisters of Providence.

PURPOSE OF THE STUDY: We explored how generativity and well-being merged in a group of childless older women: African and Hispanic Roman Catholic Religious Sisters, linking two minority identity characteristics. DESIGN AND METHODS: We qualitatively interviewed 8 Oblate Sisters of Providence (OSP), by providing a framework for examining the range of the women's generativity-cultural spheres in which generativity is rooted and outlets for generativity. RESULTS: Early negative experiences, such as fleeing despotism in Haiti and Cuba and racism within the Catholic Church, occurred alongside positive experiences-families who stressed education, and Caucasian Religious who taught children of color. This became a foundation for the Sister's generative commitment. IMPLICATIONS: Findings highlight that research gains from a phenomenological understanding of how religious faith promotes generative cognitions and emotions. Findings also reveal that the experiences of a subculture in society-African-American elderly women religious-add to theories and definitions of generativity.

"Shadow stories" in oral interviews: Narrative care through careful listening.

In most narrative approaches to understanding old age, the primary object of interest is the told story. However, what is often overlooked in narrative research are the untold stories--the silences, gaps, and omissions that form a type of shadow story or a story that lies just below the surface of what is said or written. This paper presents an illustrative case example of Constance to demonstrate how careful listening can help uncover hidden stories in an interview. In this case, Constance mentions two people (her brother and husband) as being important in her life yet omits them from the majority of her interview. The interviewer is able to uncover a hidden story with regard to her brother, learning important details about their relationship that would have otherwise gone unspoken. Overall, findings point to the importance of untold stories both in terms of content and as a way to empower the speaker to address topics that he or she may have otherwise thought were not of interest to the interviewer.

Experiences of sleep and benzodiazepine use among older women.

Sleep disturbances are common among older women; however, little is known about sleep experiences among chronic benzodiazepine users. The experience of sleep, sleep troubles, and management of sleep problems were explored through semistructured interviews with 12 women aged 65-92 who had used a benzodiazepine for three months or longer to treat a sleep disturbance. Themes that emerged from an interpretive phenomenological analysis included multiple reasons for sleep disruptions (health problems, mental disturbances, and sleeping arrangements), opposing effects of benzodiazepines on sleep (helps or does not work), and several supplemental sleep strategies (modification of the environment, distraction, and consumption).

"Successful aging," gerontological theory and neoliberalism: a qualitative critique.

This article is a critique of the successful aging (SA) paradigm as described in the Rowe and Kahn book, Successful Aging (1998). The major point of this article is that two key ideas in the book may be understood as consonant with neoliberalism, a social perspective that came into international prominence at the same time the SA paradigm was initially promoted. These two key ideas are (a) the emphasis on individual social action applied to the nature of the aging experience and (b) the failure to provide a detailed policy agenda for the social and cultural change being promoted and, particularly, for older adults who may be left behind by the approach to change the book suggests. The article provides no evidence for a direct connection between SA and neoliberalism, but rather shows how similarities in their approaches to social change characterize both of them. In sum, the article shows (a) how the implicit social theory developed in the book, in a manner similar to neoliberalism, elevates the individual as the main source of any changes that must accompany the SA paradigm and (b) the focus on SA as individual action does not provide for those older adults who do not or will not age "successfully." This, we conclude, implicitly sets up a two-class system of older adults, which may not be an optimal means of addressing the needs of all older adults. The article also reviews a number of studies about SA and shows how these, too, may emphasize its similarities to neoliberalism and other issues that the SA paradigm does not adequately address.

Extending the Framework of Generativity Theory Through Research: A Qualitative Study.

PURPOSE OF THE STUDY: Based on ethnographic interviews, we discuss three ideas we believe will expand knowledge of older informants' thoughts about and representations of generativity. We adapt the notion of "dividuality" as developed in cultural anthropology to reframe ideas on generativity. The term dividuality refers to a condition of interpersonal or intergenerational connectedness, as distinct from individuality. We also extend previous definitions of generativity by identifying both objects of generative action and temporal and relational frameworks for generative action. DESIGN: We define 4 foci of generativity (people, groups, things, and activities) and 4 spheres of generativity (historical, familial, individual, and relational) based in American culture and with which older informants could easily identify. The approach outlined here also discusses a form of generativity oriented to the past in which relationships with persons in senior generations form a kind of generative action since they are involved in caring for the origins of the self and hence of future generative acts. These 3 elements of a new framework will allow researchers to pose critical questions about generativity among older adults. Such questions include (a) How is the self, as culturally constituted, involved in generative action? and (b) What are the types of generativity within the context of American culture and how are they spoken about? Each of the above points is directly addressed in the data we present below. METHODS: We defined these domains through extended ethnographic interviews with 200 older women. RESULTS AND IMPLICATIONS: The article addresses some new ways of thinking about generativity as a construct, which may be useful in understanding the cultural personhood of older Americans.

Generative acts of people with dementia in a long-term care setting.

Although generativity is used as a central cultural construct within life course theory to illustrate how older persons create interpersonal ties, it is also tied to key concepts in social exchange theory since generative acts can provide a way for achieving more equity in intergenerational power relationships. Without opportunities for older adults to invest themselves in younger generations, they may no longer feel needed within their family or community. In this article, we discuss the relationship of generativity and dementia through the generative activities of older persons with cognitive decline. Field notes from 8 months of research in a dementia-care setting as well as interviews with 20 residents were thematically analyzed to identify: (a) generative acts among people with dementia; (b) residents' expressions regarding giving to others; and (c) barriers to generativity. Examining generativity among people with dementia requires that one considers the subjective experience of the condition and understands that many social behaviors remain intact irrespective of any quantified cognitive loss (captured here through the use of case examples).

A pragmatic belief system in family meaning-making after death.

The authors explored a sample of families' beliefs concerning creation of meaning in the recent death of the elderly husband and father and his existence in an afterlife. Data were collected through qualitative inquiry. Family members from 34 families were asked about their reaction to their loved one's death. Three themes emerged from participants' responses (a) the significance of context in the father and husband's life and death; (b) family members' folk beliefs; and (c) recalling the after-death ritual. The themes interpenetrate at the point where family members, although doubtful, hoped their loved one continues in an afterlife.

The facade of stability in assisted living.

OBJECTIVES: The study sought to identify the varied types of change arising from internal and external influences in assisted living (AL) settings, expanding upon the literature's limited focus on resident decline and staff turnover and clarifying the importance of changes to life and work there. METHOD: This analysis employed qualitative interviews and observations from 4 studies involving 17 ALs to identify elements of change largely absent from the literature. Case material identified by the research team members relating to persons, groups, and settings exemplifying typical changes, as well as variations across settings, are presented. RESULTS: Multiple domains of AL change were identified, to include those in: (a) the external economic or competitive environments; (b) ownership, management, or key personnel; and (c) physical health or cognition of the aggregate resident population. In many cases, the changes influenced residents' satisfaction and perceived fit with the AL environment. DISCUSSION: Change of many types is a regular feature of AL; many changes alter routines or daily life; raise concerns of staff, residents, or families; or modify perceptions of residential normalcy. Environmental gerontology should more often extend the environment to include the social and interpersonal characteristics of collective living sites for elders.

Person-centered dementia care and the cultural matrix of othering.

PURPOSE: The dominant clinical view of dementia and its treatment are through the biomedical lens-an approach to understanding the dementias that focuses on bodily and mental pathology and symptomology. Person-centered care (PCC) represents a shift in focus away from biomedical approach in elder care. The primary objective of this research was to examine how PCC was defined, shaped, and practiced by staff members within a dementia care setting. DESIGN AND METHODS: Ethnographic data were collected over an 8-month period using participant observation (400 hr) and ethnographic interviews with 20 people with dementia and 25 staff members of Cedar Winds, a dementia-specific long-term care setting that had a strong organizational support for using a person-centered approach to dementia care. RESULTS: The observed cultural matrix of othering is the focus of this article and represents the cultural processes that prevented PCC from being enacted within Cedar Winds. The three main characteristics through which the residents were othered and PCC was obstructed were (a) dementia as a master status, (b) functional dependence, and (c) aggressiveness. IMPLICATIONS: This article concludes by examining the efforts that could reduce the extent of othering and improve the person centeredness of elder care settings.

A death in the family: death as a Zen concept.

This study is based on original research that explored family reaction to the death of an elderly husband and father. We interviewed 34 families (a family included a widow and two adult biological children) approximately 6 to 10 months after the death. In one-on-one interviews, we discussed family members' initial reaction to the death, how the family is coping with the loss, and the changes that occurred in family relationships. In this article we focus on family solidarity after the loved one's death and discuss one extended case from the larger study. In reviewing our data, we find that a Zen perspective is useful in understanding the effect of the death on family relationships because this perspective incorporates a focus on the paradoxes of life and death. As death forces the family into the "present in its fullness," the contradictions of intimacy and distance, past and future, and life and death, emerge. Members of the family explore existential questions about life, death, and intimacy, in order to find meaning in: 1) the life and death of the loved one; 2) their own lives; and 3) the family.

Childless Elders in Assisted Living: Findings from the Maryland Assisted Living Study.

We compared data drawn from a random sample of 399 current assisted living (AL) residents and a subsample of 222 newly admitted residents for two groups: childless AL residents and AL residents with children. The percentage of childless AL residents (26%) in our study was slightly higher than US population estimates of childless persons age 65 and over (20%). In the overall sample, the two groups differed significantly by age, race and women's years of education. The childless group was slightly younger, had a higher percentage of African American residents, and had more years of education than the group with children. In the subsample, we looked at demographic, functional, financial and social characteristics and found that compared to residents with children, fewer childless residents had a dementia diagnosis, received visits from a relative while more paid less money per month for AL and reported having private insurance. As childlessness among older adults continues to increase, it will become increasingly important to understand how child status affects the need for and experience of long-term care.

Baby Boomers in an active adult retirement community: comity interrupted.

PURPOSE OF THE STUDY: This article explores a clash between incoming Baby Boomers and older residents in an active adult retirement community (AARC). We examine issues of social identity and attitudes as these groups encounter each other. DESIGN AND METHODS: Data are drawn from a multiyear ethnographic study of social relations in senior housing. Research at this site included in-depth, open-ended interviews (47), field notes (25), and participant observation in the field (500 hr). Research team biweekly discussions and Atlas.ti software program facilitated analysis. FINDINGS: We begin with a poignant incident that has continued to engender feelings of rejection by elders with each retelling and suggests the power and prevalence of ageism in this AARC. We identify three pervasive themes: (a) social identity and image matter, (b) significant cultural and attitudinal differences exist between Boomers and older residents, and (c) shared age matters less than shared interests. IMPLICATIONS: Our data clearly show the operation of ageism in this community and an equating of being old with being sick. The conflict between these two age cohorts suggests that cohort consciousness among Boomers carries elements of age denial, shared by the older old. It also challenges the Third Age concept as a generational phenomenon.

End of life: a family narrative.

This paper is based on ethnographic research that examines family reaction to an elderly husband and father's end of life. From a group of 30 families in our study (family defined as a widow aged 70 and over and two adult biological children between the ages of 40 and 60), we offer an extreme case example of family bereavement. We report our findings through the open-ended responses of a widow and two children who were interviewed ten months after the death of the husband and father. Three general themes emerged: (1) how the family imputes meaning to the end of life, (2) changes in the roles of family members, and (3) the family's ways of coping with the death, particularly through their belief system. A key finding is that the meaning family members find in their loved one's death is tied to the context of his death (how and where he died), their perception of his quality of life as a whole, and their philosophical, religious, and spiritual beliefs about life, death, and the afterlife that are already in place.