Buffer or Blade: Perceived relationship closeness in couples navigating Alzheimer's.

Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an "ideal type," these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families "where they are" in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as "stress" and "burden" and exacerbates the very real threat to social disenfranchisement.

Navigating the new, transplanted self: how recipients manage the cognitive risks of organ transplantation.

The physiological risks of organ transplantation are well documented, but more poorly understood are the sociological ways in which organ recipients redefine themselves in reaction to physiological risks and social changes accompanying transplantation. This article analyses transplantation as a procedure that is not only physiologically risky but also poses risk to the social identity of the recipient, and explores how transplant recipients cognitively navigate transplantation surgery from waiting for to recovering after a transplant. It builds on previous sociological exploration of risk as a socially constructed process mediating experiences of health and illness with a focused contribution on explaining how individuals navigate risks posed to their social identities by major biophysical transformations. This article pointedly analyses narratives of fourteen organ recipients and the four dominant phases of identity management that emerged to create what we have coined as the new 'transplanted self', indicating the varied ways the individual social self emerges in response to the social risks of transplantation. We conclude that a better understanding of the recipient experience will contribute to improved care in the transplantation field.

'In this together' or 'Going it alone': Spousal dyad approaches to Alzheimer's.

Spouses provide the majority of care for individuals with Alzheimer's disease (AD). The qualitative literature suggests that couples adopt one of two perspectives in their accounts of AD: a We/Us approach where couples describe experiences as a composite whole or an I/Me approach where couples describe themselves as experiencing the impact of AD separately. Little is known about how these perspectives relate to the individual characteristics of either affected party. This study investigated the experiences of dyads taking both approaches. Eleven spousal dyads were divided into I/Me (n=5) and We/Us (n=6) groupings based on qualitative analyses completed as part of a larger project. Diagnosed individuals were given measures of cognitive and functional ability and caregivers completed anxiety, depression, burden, relationship satisfaction, and positive aspects of caregiving measures. We found no significant differences between groups on patient cognitive or functional ability, or caregiver anxiety, depression, burden, or relationship satisfaction. However, We/Us caregivers expressed more positive aspects of caregiving than I/Me caregivers. These findings suggest the I/Me approach is not associated with differences in variables of patient cognitive status or functional ability or caregiver emotional health, perceived burden, or relationship satisfaction. Caregivers taking a We/Us approach, however, were able to identify more positive aspects of caregiving. This may be related to mutual compassion, a characteristic of the We/Us approach, which may be protective.

Experiences and concerns of family caregivers providing support to people with dementia: a cross-cultural perspective.

We examined experiences and concerns among caregivers of community-dwelling people with dementia from two ethnic groups. We conducted a thematic analysis of responses to the question, 'What is your life like as a caregiver?' in nine focus groups (n = 75) with Filipino and non-Hispanic White caregivers. Constant comparison methods identified themes by ethnicity. Experiences and concerns expressed across groups were related to care recipient symptoms commonly associated with dementia, including severe memory loss and behavioral changes. Participants in both ethnic groups described strategies that help them cope, such as receiving help from family and friends, receiving respite support, and participating in support groups. Filipino caregivers more often emphasized positive aspects of caregiving, whereas Whites often expressed that others do not understand the daily experiences of caregiving. Filipinos more commonly described caregivers as a 'good person' or 'saint' and emphasized that caregiving made them stronger.

Patients' and family members' views on patient-centered communication during cancer care.

OBJECTIVES: To explore patients' and family members' views on communication during cancer care and to identify those aspects of clinician-patient communication which were most important to patients and family members. METHODS: We conducted a secondary data analysis of qualitative data from 137 patients with cancer and family members of patients with cancer. We used a modified version of the constant comparative method and coding paradigm of grounded theory. RESULTS: Patients want sensitive, caring clinicians who provide information that they need, when they need it, in a way that they can understand; who listen and respond to questions and concerns, and who attempt to understand the patient's experience. Effective information exchange and a positive interpersonal relationship with the clinician were of fundamental importance to patients and family members. These were interrelated; for instance, failure to provide information a patient needed could damage the relationship, whereas excellent listening could foster the relationship. Information exchange and relationship were also integral to decision-making, managing uncertainty, responding to emotions, and self-management. Clinicians who were responsive to patients' needs beyond the immediate medical encounter were valued. CONCLUSIONS: The complexity of cancer care today suggests that efforts to improve communication must be multilevel, acknowledging and addressing patient, clinician, organizational and policy barriers, and facilitators. Measurement tools are needed to assess cancer patients' and family members' experiences with communication over the course of cancer care to provide meaningful, actionable feedback to those seeking to optimize their effectiveness in communicating with patients with cancer.

Making sense of nonsense: experiences of mild cognitive impairment.

Alzheimer's disease (AD) is a stigmatised condition popularly assumed to be a death sentence for diagnosed individuals. Consequently, people with AD are often deemed incapable (and perhaps unworthy) of contributing to the social discourse surrounding their illness experience. Data from qualitative interviews with 18 people diagnosed with the potential precursor of AD known as mild cognitive impairment (MCI) are examined. Using grounded theory methods, analysis revealed overarching themes of uncertainty concerning definitions of memory loss, MCI, and AD as well as distinctions between normal ageing and dementia. While this confusion over the terminology and prognosis mirrors the lack of scientific consensus about nosology and appropriate treatment regimens, such ambiguity creates social and psychological tensions for diagnosed individuals. Arguably, participants' unequivocal fear of and subsequent desire to differentiate their experiences from Alzheimer's, however, stems from the exclusively negative social constructions of AD. Drawing from Goffman, these findings demonstrate the psychosocial impact of 'framing contests' and how 'courtesy stigma' can apply not only to associated persons but also associated conditions, such as MCI to AD. Given the underlying nosological creep - or medicalisation - of the recent diagnostic guidelines proposing two new pre-dementia stages, understanding the illness narratives of MCI is critical.

Negotiating the joint career: couples adapting to Alzheimer's and aging in place.

To understand the impact of memory loss on aging in place, this paper investigated dyads where one spouse had been diagnosed with memory loss. In-depth qualitative interviews were conducted with ten couples (N = 20). Grounded theory methods were used to collect, code, and analyze data into themes. Data revealed consensus among and between dyads that it was best to focus on living, rather than what had been or might someday be lost. Nonetheless, differences according to gender and cognitive status (e.g., diagnosed or spouse) were reported. Given population aging, identifying the impact of gender roles and social norms on the potential for aging in place with memory loss is critical. Community services and care practices must be sensitive to the ways that couples prioritized and organized their relationship prior to diagnosis in order to encourage positive patterns of care between couples, foster successful adaptation to changing needs, and support in-home arrangements as long as possible.

Beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia.

We examined beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia, their awareness of media information about cognitive health, and their suggestions for communicating such information to other caregivers. We conducted three focus groups (25 participants). The constant comparison method compared themes across focus groups. Caregivers most frequently described cognitive health benefits of social engagement and leisure; next in emphasis were benefits of healthy diets. There was less emphasis on physical activity. Participants had heard from television that avoiding smoking, alcohol, and drugs might promote cognitive health. Ways to inform others about cognitive health included information in Filipino newspapers, and handouts in Filipino languages, distributed in Filipino stores, workplaces, community organizations, and health care facilities. Findings suggest an opportunity to develop public health messages promoting cognitive health that are in-language, published in ethnic-specific media, and that are culturally appropriate for Filipino and other Asian Americans.

Promoting cognitive health: a formative research collaboration of the healthy aging research network.

PURPOSE: Evidence suggests that healthy lifestyles may help maintain cognitive health. The Prevention Research Centers Healthy Aging Research Network, 9 universities collaborating with their communities and the Centers for Disease Control and Prevention, is conducting a multiyear research project, begun in 2005, to understand how to translate this knowledge into public health interventions. DESIGN AND METHODS: This article provides an overview of the study purpose, design, methods, and processes. We examined the literature on promoting cognitive health, convened a meeting of experts in cognitive health and public health interventions, identified research questions, developed a common focus group protocol and survey, established quality control and quality assurance processes, conducted focus groups, and analyzed the resulting data. RESULTS: We conducted 55 focus groups with 450 participants in 2005-2007, and an additional 20 focus groups and in-depth interviews in 2007-2008. Focus groups were in English, Spanish, Mandarin, Cantonese, and Vietnamese, with African Americans, American Indians, Asian Americans, Hispanics, non-Hispanic Whites, physicians and other health practitioners, rural and urban residents, individuals caring for family or friends with cognitive impairment, and cognitively impaired individuals. IMPLICATIONS: The data provide a wealth of opportunities for designing public health interventions to promote cognitive health in diverse populations.

The public's perceptions about cognitive health and Alzheimer's disease among the U.S. population: a national review.

The present review assesses the public's perceptions about cognitive health and Alzheimer's disease among adults in the United States. We searched the published literature and Internet, and contacted experts in the field to locate surveys assessing the public's perceptions about cognition. We found 10 eligible surveys and abstracted data concerning the public's knowledge, beliefs, concerns, and sources of information. Most of the surveys were conducted in the 2000s and focused on Alzheimer's disease rather then cognitive health. Based on the findings from the surveys, most adults were found to be aware of Alzheimer's disease but lacked specific information about the disease and its treatments. Most respondents did not perceive themselves as being very knowledgeable about Alzheimer's disease. Although we could classify the findings into several overarching domains, such as knowledge, we found considerable variability among surveys in the questions asked. Additional work is needed to understand the public's perceptions about cognitive health. Moreover, we also lack studies that help us understand perceptions about cognition across diverse demographic and cultural groups. Only by addressing these gaps can we develop targeted and effective strategies to enhance knowledge and beliefs about cognitive impairment and health.

Attitudes about aging well among a diverse group of older Americans: implications for promoting cognitive health.

PURPOSE: To examine perceptions about aging well in the context of cognitive health among a large and diverse group of older adults. DESIGN AND METHODS: Forty-two focus groups were conducted with older adults living in the community (N = 396; White, African American, American Indian, Chinese, Vietnamese, and Hispanic). Participant descriptions of "someone who you think is aging well" were analyzed. Constant comparison methods examined themes by race/ethnicity. RESULTS: There were notable race/ethnicity differences in perceptions of aging well. Compared with other racial/ethnic groups Chinese participants were more likely to emphasize relationships between mental outlook and physical abilities, Vietnamese participants were less likely to emphasize independent living. American Indians did not relate aging well to diet or physical activity. Important themes that emerged about aging well for all racial/ethnic groups were as follows: living to advanced age, having good physical health, having a positive mental outlook, being cognitively alert, having a good memory, and being socially involved. IMPLICATIONS: To promote cognitive health among diverse populations, communication strategies should focus on shared perceptions of aging well, such as living to an advanced age with intact cognitive function, having a positive attitude, and being mobile. Health promotions may also create a range of culturally sensitive messages, targeted to views that are more salient among some racial/ethnic groups.

The two voices of Alzheimer's: attitudes toward brain health by diagnosed individuals and support persons.

PURPOSE: Most individuals with Alzheimer's are cared for in their homes by unpaid family members. Research on caregiving focuses disproportionally on costs of care, service utilization, and negative psychosocial outcomes. Few narrative accounts of Alzheimer's exist; those that do suffer similar pejorative framings and narrow foci. No studies that we are aware of examine the health beliefs of diagnosed individuals and support persons, or their attitudes about brain health. This research reports perceptions of "aging well" held by those most intimately acquainted with Alzheimer's. DESIGN AND METHODS: Diagnosed individuals and their support persons (N = 85) were enrolled into 14 focus groups. Grounded theory methods were used to collect, code, and analyze textual interview data into overarching themes. RESULTS: Respondents found physical and mental health, social activity, independence, and happiness integral to aging well. An acceptance of various limitations was also deemed crucial. Support persons placed more emphasis on lifestyle factors and memory loss as potential obstacles. Diagnosed respondents defined memory loss in less medicalized terms, whereas support persons labeled it Alzheimer's and negatively characterized those affected. Both groups warned against discussing "prevention" of dementia: Diagnosed individuals noted the implication of "aging poorly" and support persons cautioned against blaming diagnosed individuals. IMPLICATIONS: These findings can be used to encourage positive health beliefs and behaviors tailored to the needs of diagnosed seniors and their families, to help practitioners and researchers identify and become sensitive to differences between and among older adults, and to further advance the utility of narrative accounts for informing health interventions and education efforts.

Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss.

Being diagnosed with Alzheimer's disease marks a status passage formally legitimating the incorporation of forgetfulness into daily life. Based on interviews with diagnosed individuals in California, USA, we examine the mechanisms through which an Alzheimer's label is employed to justify forgetfulness, to manage social interactions, and to garner support when deemed necessary, while simultaneously combating the associated demented "master status." For diagnosed individuals, the transition from experience to symptom requires a redefinition of everyday forgetfulness into a medical problem. That is, respondents did not routinely perceive their experiences as pathological but rather were socialised into viewing age-related forgetfulness as symbolic of disease. Support groups sponsored by the Alzheimer's Association and memory clinics have a profound impact not only on the formation of group identity, but also on socialising forgetful individuals into diseased identities. The social disenfranchisement accompanying a diagnosis of dementia transforms forgetful older adults into "Alzheimer's patients," who must manage not only the manifestations of their disease, but also negotiate their interactions and identities. Their adaptation to the "symptoms" of forgetfulness and resultant social relations forms new interactional strategies whereby the diagnosis becomes a resource utilised to get through everyday life. Rather than being passive recipients of a diagnosis, respondents employ the label both as a resource, and as a phenomenon that needs to be incorporated into their self identity.

Trust and memory: organizational strategies, institutional conditions and trust negotiations in specialty clinics for Alzheimer's disease.

Clinicians aim to establish trust during medical encounters because, without it, health consumers may not seek medical care, consider their diagnoses legitimate, or adhere to treatment regimens. This paper examines the identification and treatment of memory loss within two specialty clinics to understand how cultural dynamics, such as organizational ethos and work practices, influence the social fabric of cognitive evaluations. Ethnographic data suggest important historical and cultural differences in the approaches to Alzheimer's disease (AD). Organizational routines, however, support a common goal, that of moving individuals from "potential patients" to patients, and ultimately research subjects, through establishing trust. Although the processes through which trust is potentially achieved, or the social conditions of trust, were similar at the sites, the object of trust was different. Whereas one clinic encouraged trust in collective medical expertise, the other focused on trust in specific clinicians. These conditions affect the clinical consequences of trust, particularly how and when the diagnosis is delivered, use of the AD label and other terminology, and the level of standardization. The individual consequences include perceptions of patients and depictions of the prognosis. Whether cognitive impairment is viewed as a scientific puzzle to be solved or is seen as a chronic illness significantly shapes the organizational processes of clinical evaluation. Alzheimer's disease, as a cultural object, is a particularly salient exemplar of the clinical negotiation of ambiguous diagnostic categorizations and the unpredictable patient in daily biomedical practice.

Implications of welfare reform on the elderly: a case study of provider, advocate, and consumer perspectives.

Whereas many studies of welfare reform have focused on effects on children and families, little research has examined the implications of welfare reform for the elderly. This case study incorporates interviews with service providers for the aging, members of advocacy organizations, and two focus groups of older consumers conducted in the multi-ethnic urban community of San Francisco. Study findings suggest that welfare reform has had both direct and indirect effects on the elderly and their services in the study community. Direct effects derive primarily from changes in the welfare reform legislation that had the effect of undermining both immigrants' eligibility for and claiming of public assistance benefits. Indirect effects on older persons include increased child-care demands upon grandparents. The case study data bear on a significant policy change within the broader trend of devolution at a historical point when anti-immigrant sentiment in the United States was running high.

Advocating voice: organisational, historical and social milieux of the Alzheimer's disease movement.

The Alzheimer's disease movement, despite the stated willingness of the Alzheimer's Association, has yet to comprehensively utilise people with Alzheimer's as spokespersons. This is particularly noteworthy given the increasing availability of those with Alzheimer's who, especially in the early stages, are fully capable of advocating their position. Qualitative interviews and focus groups with people who have been diagnosed with Alzheimer's demonstrate the active role they are beginning to take in informing research, practice and policy. Interviews with affiliates of the national association aiming to advocate for people with memory loss depict an enduring struggle to incorporate these perspectives. Although primary obstacles may involve the structural dynamics within a society that stigmatises those who are old and/or forgetful, there are clear organisational contradictions within the Association itself preventing such mobilisation efforts. The dynamics shaping this health social movement's endeavours portray characteristics that obstruct an ability to embrace as spokespersons the individuals for whom it advocates.

Factors that influence end-of-life care in nursing homes: the physical environment, inadequate staffing, and lack of supervision.

PURPOSE: This study investigated the physical environment and organizational factors that influenced the process of providing care to terminally ill nursing home residents. DESIGN AND METHODS: Participant observation, interviews, and event analysis were used to obtain data in two proprietary facilities. RESULTS: The physical environment was not conducive to end-of-life care. The rooms were crowded, there was little privacy, and the facilities were noisy. Inadequate staffing and lack of supervision were among the most significant organizational factors that influenced care. Often, residents did not receive basic care, such as bathing, oral hygiene, adequate food and fluids, and repositioning. A consequence of inadequate staffing was the development of pressure ulcers; 54% of the residents had pressure ulcers; 82% of these residents died with pressure ulcers. IMPLICATIONS: Findings suggest that the nursing home environment in these two facilities, as now structured, is an inappropriate setting for end-of-life care.