‘Just Because I Can't Remember …’ Religiousness in Older People with Dementia

SUMMARY

This paper reports part of a pilot study that used spiritual reminiscence techniques to explore issues of religiosity, church attendance and meaning in life of a group of older people with dementia. The study used small groups, individual interviews and participant observation to examine the experience of dementia and the search for meaning used by people with dementia. There were 22 participants from three aged care facilities involved in the project. The majority of participants had been long-term church attendees and could describe how their religion and relationship with God had impacted on their lives. They had few fears for the future and derived considerable meaning in life from their relationships with family. Participants were able to describe early memories and also remember things happening recently in their aged care facility. This would seem to be the opposite of community expectations (and sometimes staff expectations) of older people with dementia.     

A Survey Report of Nursing Home Ministry and Perceived Needs with Implications for Pastoral Care

ABSTRACT

The last 40 years of growth in the development of pastoral care to the sick appears to have virtually bypassed persons in nursing homes. A study within 13 nursing homes in one city revealed that spiritual ministry within those institutions was generally limited to a series of 9 to 13 worship services per month, attended by approximately 20 percent of the patients/residents. Some patients receive an occasional personal visit by a pastor. The staff perceive that pastoral ministry as good, but inadequate, and expressed their views on that which is needed within their institutions and challenge the clergy with specific suggestions for pastoral care for nursing home patients/residents, their families, and staff.     

Residents' Attitudes About On-Site Religious Activities: A Comparison of Continuing Care Retirement Communities in Two States

ABSTRACT

Twelve older adults were interviewed in two continuing care retirement communities (CCRCs), one in Florida and the other in Wisconsin. Only the residents in Wisconsin maintained contact with local congregations, probably because most had always lived in communities not far from the CCRC. On-site religious activities such as worship and study groups were important because of the ways they ordered the week and the opportunities they offered for social interaction. In both locations, Protestant residents appreciated the opportunity to worship in ecumenical services conducted by clergy of different Protestant faith traditions. Catholic services were also available in both locations. Suggestions are offered about ways that faith communities can nourish the spiritual lives of persons living in CCRCs by working with chaplains and by conducting small prayer and study groups.     

A Conceptual Framework for Assessing the Spiritual Functioning and Fulfillment of Older Adults in Long-Term Care Settings

ABSTRACT

The 1971 White House Conference on Aging asserted that all persons are spiritual, and that the spiritual well-being of older adults is a significant area of concern for both researchers and practitioners. Many attempts have been made to define and describe spirituality, using instruments designed to measure religious functioning and behavior. While these have been helpful to researchers, they have been of little practical use.

This paper presents a conceptual framework for the operationalization of the variable, “spirituality.” Using this framework, the authors chose three qualitative research questions related to spiritual values which were asked of both older adults and service providers. The results were factor analyzed and an instrument was developed which enables the practitioner to assess the type of spiritual functioning and fulfillment desired by older adults in long-term care settings.     

How the “Not Religious” Experience and Witness Suffering and Death: Case Studies

ABSTRACT

This article is based on a subset of a multi-site (8), multi-year (4) research study that explored the cultural construction of dying and death in long-term care facilities. In open-ended interviews with residents and staff members, we learned how four individuals who describe themselves as “not religious” respond to queries about the meaning of suffering and death while working and living in long-term care.

We present case studies of two residents and two staff members from one of the sites–a secular, for-profit nursing home–who described themselves as not religious. We offer a brief history of their lives and daily activities, and present their responses to our queries about dying and death.

A finding of this article is that the nonreligious residents and staff members discussed here found significance in personal meaning systems developed through past, positive life events and present uncertainty about suffering and death. The self-described “not religious” provide another perspective on facing the end of life.     

Health and Care Related Risk Factors for Suicide Among Nursing Home Residents: A Data Linkage Study

This study aimed to examine associations between health status and care needs of nursing home residents and risk of death from suicide compared to other causes through a retrospective data linkage cohort study examining nursing home resident deaths in Australia between 2000 and 2013. Data linkage was performed between aged care assessment tools—Resident Classification System and Aged Care Funding Instrument—and the National Coronial Information System. A competing risks survival analysis was performed to determine the association between care assessment variables (activities of daily living (ADL), behavior, and complex health care) and the risk of death from suicide and any other cause. Of the 146 nursing home residents who died from suicide, 130 (89%) were matched to their assessment data, with comparable information available for 95 residents (65%). Residents who required high levels of care with ADL, physical health care, and cognitive and behavioral issues had a higher risk of dying from all other causes, yet lower risk of dying from suicide. The study findings demonstrate the feasibility and value of linking these two data sets; highlight a need for improved data collection processes; and support a person‐centered care approach for prevention of suicide among nursing home residents.     

Spirituality promotes better health outcomes and lowers anxiety about aging: The importance of spiritual dimensions for baby boomers as they enter older adulthood

Baby boomers present unique challenges to aged care service provision. Like previous generations, baby boomers will face challenges of ageing. Spirituality in later life, understood largely as meaning in life, is crucial to well-being. Little has been studied about this dimension of ageing for baby boomers. This mixed methods study used survey and focus groups methods to investigate spirituality in a sample of baby boomers (N = 143). Participants comprised staff, children of adults in care, and Uniting Church congregational members. We examined associations between physical and mental health, and ageing anxiety with spirituality and whether baby boomer spirituality buffered the impact of negative life events. Focus groups revealed fears of future frailty, loss, and fears of dementia. Religious affiliation in study was lower, yet spirituality was important, even with those without religious affiliation. Closeness of association of staff with older people in their care seemed to account for lower levels of fear of older people amongst staff, but higher fears of future loss compared with the other groups. Higher levels of spirituality were related to better mental and physical health and lower anxiety about and fear of ageing, and buffered the impact of negative life events where they occurred.     

Prediction of end-of-life fears in COPD – hoping for the best but preparing for the worst

Objective: The diagnosis of a life-threatening illness can trigger end-of-life fears. Early studies show that end-of-life fears play an important role in chronic obstructive pulmonary disease (COPD). However, predictors of these fears have not yet been identified. This study investigated the relevance of socio-demographic variables, illness severity, psychological distress and disease-specific anxieties as predictors of end-of-life fears in COPD.

Design: A total of 131 COPD patients participated at two time points. Regression and mediation analyses, as well as cross-lagged panel analyses were conducted.

Main outcome measures: The participants completed questionnaires assessing end-of-life fears (Multidimensional Orientation toward Dying and Death Inventory), psychological distress (Hospital Anxiety and Depression Scale), and disease-specific anxieties (COPD Anxiety Questionnaire). Pulmonary function and a 6-min walk test served as measures of illness severity.

Results: Illness severity was not predictive of end-of-life fears. However, gender and psychological distress explained incremental variance. When disease-specific anxieties were included as additional predictors, psychological distress was no longer significant. Cross-lagged panel analyses mostly supported these results. Moreover, disease-specific anxieties mediated the association between psychological distress and end-of-life fears.

Conclusion: Administration and intensity of end-of-life care (especially concerning end-of-life fears) in COPD patients should be based not only on illness severity, but rather on psychological distress and disease-specific anxieties.     

The Spiritual Dimension of Caring: Applying a Model for Spiritual Tasks of Ageing

SUMMARY

This chapter describes a spiritual dimension of ageing using themes and a model for spiritual tasks of ageing, developed as a part of doctoral studies that examined spirituality amongst a group of independent-living older adults in Canberra and NSW. This model has been tested further and the model was confirmed through in-depth interviews of residents of nursing homes in the ACT. The first study identified six major spiritual themes from participant interviews. These were: ultimate meaning in life for each person, the way they responded to meaning, self-sufficiency versus despair, moving from provisional to final life meanings, relationship versus isolation in ageing and hope versus despair.     

Sexual Arousal,Affect, and Heterosexual Attraction

Abstract

A study of residents who remained in the vicinity of Three Mile Island (TMI) immediately following the restart of the nuclear generating plant revealed that older residents employed a more emotion-focused coping style in the face of this event than did younger residents. Coping style was, however, unrelated to the level of psychological symptoms for these older residents, whereas demographic variables were related. Among younger residents, on the other hand, coping style was related to the level of psychological symptoms, whereas demographic variables were not. Among younger residents, emotion-focused coping was associated with more symptoms and problem-focused coping was associated with fewer symptoms, contradicting previous findings among TMI area residents.     

Collaboration of Churches and Service Providers: Meeting the Needs of Older African Americans

ABSTRACT

This article describes a community outreach volunteer project designed to reach frail community-based older adults. The project is an example of church and secular agency collaboration in which the church provides leadership in volunteer recruitment and the agency provides training and outreach activity monitoring. The church's role in this project illustrates that small and medium-size African American churches can play an important role in mobilizing volunteer resources and can perform a linking role in helping secular agencies to gain access to frail, hard-to-reach, low-income older adults.     

Linking resident behavior to dementia care communication: effects of emotional tone

Care for older adults with dementia is complicated by behaviors such as verbal and physical aggression and withdrawal that disrupt and increase the costs of providing care. These behaviors, referred to as resistiveness to care (RTC), have been linked to staff elderspeak communication, measured by behaviorally coded explicit behaviors. This study examined videotapes of nursing home (NH) residents with dementia interacting with staff during bathing to explore the relationships between implicit messages communicated by nursing staff and resident RTC behavior.Implicit messages in nursing staff communication were rated using the Emotional Tone Rating Scale by naïve coders. Associations between implicit ratings of care, respect, and control were analyzed in relation to RTC scale scores. Highly controlling communication was significantly correlated with increased resident RTC (r = .49, p < .05). Associations between the care and respect dimensions of communication were not significantly correlated with RTC; however, trends in hypothesized directions were identified. The association between emotional tone and RTC found in this study suggests that it is an important factor in care. Understanding affective messages is a first step in modifying these implicit messages conveyed during staff-resident communication. Research is needed to confirm these findings and to identify and test interventions to teach staff to reduce controlling messages that will to reduce RTC and improve care.     

The experiences of gender diverse and trans children and youth considering and initiating medical interventions in Canadian gender-affirming speciality clinics

Abstract

Background: Canadian specialty clinics offering gender-affirming care to trans and gender diverse children and youth have observed a significant increase in referrals in recent years, but there is a lack of information about the experiences of young people receiving care. Furthermore, treatment protocols governing access to gender-affirming medical interventions remain a topic of debate.

Aims: This qualitative research aims to develop a deeper understanding of experiences of trans youth seeking and receiving gender-affirming care at Canadian specialty clinics, including their goals in accessing care, feelings about care and medical interventions they have undergone, and whether they have any regrets about these interventions.

Methods: The study uses an adapted Grounded Theory methodology from social determinants of health perspective. Thirty-five trans and gender diverse young people aged 9 to 17?years were recruited to participate in semi-structured interviews through the specialty clinics where they had received or were waiting for gender-affirming medical interventions such as puberty blockers, hormone therapy, and surgery.

Results: Young people felt positively overall about the care they had received and the medical interventions they had undergone, with many recounting an improvement in their well-being since starting care. Most commonly shared frustrations concerned delays in accessing interventions due to clinic waiting lists or treatment protocols. Some youth described unwanted medication side-effects and others said they had questioned their transition trajectory at certain moments in the past, but none regretted their choice to undergo the interventions.

Discussion: The results suggest that trans youth and gender diverse children are benefiting from medical gender-affirming care they receive at specialty clinics, providing valuable insight into their decision-making processes in seeking care and specific interventions. Providers might consider adjusting aspects of treatment protocols (such as age restrictions, puberty stage, or mental health assessments) or applying them on a more flexible, case-by-case basis to reduce barriers to access.     

People with intellectual disability as neighbours: Towards understanding the mundane aspects of social integration

Although people with intellectual disabilities (ID) are increasingly expected to relocate from traditional institutional care to ‘regular’ neighbourhood housing facilities and socially integrate in these neighbourhoods, little is known about how they are perceived and appreciated as neighbours. This paper reports on interviews carried out with 30 neighbours without ID who were neighbours of small‐scale care facilities for people with ID. Interviews addressed the neighbours' everyday experiences of neighbouring in general, and neighbouring people with ID in particular. Neighbouring, for these informants, called for a fine balance between friendliness without over‐involvement. While they were generally positive about their interactions with their neighbours with ID, it emerged that the formal nature of the care facility and the interaction style of some of the neighbours with ID often contravened informants' assumptions about neighbouring. Informants expressed concern about a possible lack of appropriate distance, reciprocity and accountability among their neighbours with ID. The nature of the care facility, with paid staff, often group activities, formal means of achieving the everyday small tasks which neighbours sometimes do for each other, and a high turnover of residents, all undermined the possibility of a typical neighbourly relationship. In conclusion, we suggest that integration of people with ID into everyday neighbouring relationships raises complex challenges for care organizations that need to find a balance between supporting the needs of people with ID they care for, adequate support and mediation for other neighbours when necessary, and all the while avoid becoming overly involved in neighbouring as a formal partner. Copyright © 2010 John Wiley & Sons, Ltd.     

Nursing Home Residents' Perception of the “Good Death”

ABSTRACT

Little is known about the concept of the “good death” and its relationship to formal Christian religious belief. In this research, 15 nursing home residents participated in a semi-structured open-ended interview in which they were asked to describe their beliefs about the good death experience. This paper summarizes the most distinctive themes of one study of the impact, of formal religious belief on attitudes regarding the good death. The majority of interviewees defined a good death in terms of freedom from pain and suffering, and indicated that religious faith and prayer were important to them in coping with death and dying.     

Perceptions de la qualité de vie et de la bientraitance par des personnes âgées résidant en institution gériatrique et par leurs proches

Introduction

The present study focuses on patient-centered care and quality of life in dependent aging people living in nursing home.

Ageing and Isolation: Is the Issue Social Isolation or Is It Lack of Meaning in Lige?

SUMMARY

Social and spiritual isolation are growing issues for an ageing society that promotes the ideals of autonomy and high levels of individuation amongst its citizens. This chapter explores the issues of social and spiritual isolation for older adults and ways of addressing these issues both now and in the future. The need for intimacy with God and with others is illustrated using material from in-depth interviews with older adults who live independently and others who are residents of aged care facilities.     

Loneliness,Religiousness, and Purpose in Life in the Oldest Old

ABSTRACT

Two groups of Norwegian individuals 80 years of age and older, one living in nursing homes and one in the community, were compared with respect to loneliness, religiousness, purpose in life (PIL), and age group. There were no differences in loneliness identified between groups with regard to residence. Community residents between 80–89 years reported significantly higher loneliness scores than did the age group between 90–105 years. A majority of all subjects reported religion to be important, but age group comparisons yielded non-significant results. Residents living in the community reported significantly higher PIL scores than did residents in institutions. In addition, the community group 90–105 years old reported significantly higher PIL scores compared to the age group of 80–89 years. Analysis of variance showed significantly higher (negative) correlations between loneliness and purpose in life than between these phenomena and religiousness.