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Rosalie Kane: a career’s worth of “evergreen” insights
- Author:
- DOTY Pamela
- Journal article citation:
- Journal of Gerontological Social Work, 64(1), 2021, pp.78-87.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The author reminisces about her collegial relationships and friendship with Rosalie Kane over a span of nearly 40 years. She also reflects on the main themes of Rosalie’s scholarly work as a social gerontologist, highlighting seminal publications and why Rosalie’s insights remain valuable and “evergreen” decades later. (Edited publisher abstract)
Nursing facility social work with family behavioral health challenges
- Authors:
- MYERS Dennis R., et al
- Journal article citation:
- Journal of Family Social Work, 24(2), 2021, pp.136-156.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Nursing facility social workers play a prominent role in promoting behavioral health among family members with compromised responses to their loved one’s residing in a skilled care nursing facility. Familial behaviors in nursing home settings and social workers’ responses to them have not been systematically investigated. This study addresses the issue through quantitative and qualitative analyzes of face to face, in-depth interviews with 20 BSW/MSW licensed nursing facility social workers averaging 8.8 years of experience. The analysis conducted by a five-member research team yielded six recurring categories of compromised family behaviors: verbally aggressive, controlling/demanding, denial/unrealistic expectations, abuse/exploitation, manipulation, and disengaged/resistant. Respondents reported five categories of responses to these family behaviors: relating (tuning in, active listening, trust-building), mediating, limit-setting, educating, and advocating. Narratives of family behaviors and social worker responses revealed creative ways social workers engaged family member role ambiguity and worked to improve transactions among struggling family members, residents, and facility staff and policy. The findings provide previously unavailable evidence on the social worker’s role in promoting family behavioral health and document an empirical basis for future study. Five recommendations are offered for enriching social work practice and education with families in the context of skilled nursing facility care. (Edited publisher abstract)
Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers: which characteristics are associated with in-home care?
- Authors:
- REIDIJK Samantha R., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 8(1), February 2009, pp.61-77.
- Publisher:
- Sage
Patients with frontotemporal dementia (FTD) need complete care in the final stages of the disease. Some informal caregivers continue the in-home care whereas others institutionalize. This Dutch study identifies differences between in-home FTD patients and their caregivers (FTDH) and institutionalized FTD patients (FTDN) and their caregivers. Twelve in-home and 24 institutionalized FTD patients in the final stages of the disease, and their spousal caregivers, were observed. Neuropsychiatric function disorders, dementia duration and severity, burden, mental and physical health, quality of the current and premorbid relationship and caregiver motivation were analysed. The majority of FTDH patients had dementia of shorter duration and showed residual independence. In FTDH patients, neuropsychiatric symptoms were more often present whereas apathy and disinhibition were more intense in FTDN patients. FTDH caregivers felt more emotionally burdened but had better mental health. Caregiver motivations were similarly present in FTDH and FTDN caregivers, while the love-motivated caregivers had worse physical and mental health. The data suggest that all FTD caregivers could benefit from psychological support. Motivation for caregiving has intervention potential.
Informal caregivers and the risk of nursing home admission among individuals enrolled in the program of all-inclusive care for the elderly
- Authors:
- FRIEDMAN Susan M., et al
- Journal article citation:
- Gerontologist, 46(4), August 2006, pp.456-463.
- Publisher:
- Oxford University Press
This American study sought to determine whether participants in the Program of All-Inclusive Care for the Elderly (PACE) with an informal caregiver have a higher or lower risk of nursing home admission than those without caregivers. PACE is a community-based system of preventive, primary, acute and long-term care that care for older adults that qualify for nursing home care. A secondary data analysis was performed of 3,189 participants aged 55 years or older who were enrolled in 11 PACE programs during the period from June 1, 1990 through June 30, 1998. Cox proportional hazard models determined whether having any caregiver, as well as specific caregiver characteristics, such as either living separately from the enrollee, being over the age of 75 years, providing personal care, not reducing or quitting work to provide care, or not being a spouse, predicted time to nursing home admission. Fewer than half of the participants (49.4%) lived with a caregiver, and 12.4% had no caregiver. Individuals who lived with their caregiver were frailer than either those who lived separately or those without a caregiver. The study measured frailty in terms of functional and cognitive status, incontinence, and multiple behavioral disturbances. The presence of a caregiver did not change the risk for institutionalization. None of the caregiver characteristics were associated with a higher risk of nursing home admission. Unlike individuals in the general population, participants in PACE who lack an informal caregiver are not at higher risk of institutionalization. Further research is required to ascertain whether PACE's comprehensive formal services compensate for the lack of informal caregiving in limiting the risk for institutionalization.
The stress process of family caregiving in institutional settings
- Authors:
- WHITLATCH Carol J., et al
- Journal article citation:
- Gerontologist, 41(4), August 2001, pp.462-473.
- Publisher:
- Oxford University Press
This study adapts the Stress Process Model (SPM) of family caregiving to examine the predictors of depression in a sample of caregivers with demented relatives residing in suburban skilled nursing facilities. The authors interviewed family caregivers of family members residing in skilled nursing homes using a variety of measures to assess primary stressors, secondary strain, nursing home stressors, and caregiver depression. Results indicated that positive resident adjustment to placement was best predicted by the closeness of the resident-caregiver relationship and nursing home stressors. Caregiver strain, resident adjustment, and nursing home stressors best predicted caregiver adjustment. In turn, the best predictors of caregiver depression included caregiver age, caregiver adjustment to the nursing home, and nursing home stressors. These results suggest that caregiver depression is closely linked to how well both the resident and caregiver adjust to the nursing home environment. Results also indicate that by broadening the SPM to include stressors common to the nursing home experience, researchers will be able to understand more clearly the specific components of the stress process that may lead to depression in family caregivers of persons living in nursing homes.
Institutionalization for the elderly is a novel phenomenon among the Arab population in Israel
- Authors:
- AZAIZA Faisal, LOWENSTEIN Ariela, BRODSKY Jenney
- Journal article citation:
- Journal of Gerontological Social Work, 31(3/4), 1999, pp.65-89.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Institutionalisation of senior citizens is foreign to Arab Moslem mores. However, the rapid modernisation process witnessed among the Arab population in Israel is also leaving its mark on the social values of the community and the rule that offspring or close family act as sole caregivers of the elderly person is losing its strength. This descriptive account composes a primary profile of the elderly Arab citizens who enter, or already occupy, one of the two old age homes for Arabs in Israel. Discusses the salient features that make an elderly person a candidate for placement include lack of family, sick and/or invalid partner, childlessness, loneliness, and diminished activities of daily living.
The relationship between guilt feelings, conflicts with staff and satisfaction with care in relatives of nursing home residents with dementia: a longitudinal analysis
- Authors:
- GALLEGO-ALBERTO Laura, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.5-20.
- Publisher:
- Sage
Introduction: Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method: Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (β = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (β = −0.10; p< 0.05; 95% CI: −0.18 to −0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (β = −0.07; p = 0.10; 95% CI: −0.16 to 0.01). Discussion: More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes. (Edited publisher abstract)
Validation of a modified ambiance scale in nursing homes
- Authors:
- KOSTERS Janouk, et al
- Journal article citation:
- Aging and Mental Health, 25(8), 2021, pp.1535-1541.
- Publisher:
- Taylor and Francis
Objectives: We translated and modified an ambiance scale for use by (in)formal caregivers in Dutch nursing homes. We tested validity and reliability of the modified Ambiance Scale. Method: Convenience sampling was used to enrol (in)formal caregivers in three nursing homes in the Netherlands. 104 questionnaires were filled in; 45 by informal caregivers, 46 by formal caregivers. Ten caregivers filled in the questionnaire twice for test-retest purposes. Three original items were used, and seven newly were added to form the modified Ambiance Scale. Each item consisted of an adjective pair assessing an aspect of ambiance on a scale of 1 (homelike) to 5 (institutional). Caregivers filled in the questionnaire on two different days to assess intra rater reliability. Differences in scoring between formal and informal caregivers and between original and new items were analyzed. Results: The questionnaire was easy to comprehend and fill in. Internal consistency was good (a = 0.93). Validity was found to be good. Factor analysis demonstrated that eight items identified as one factor. No differences in scoring between the first and second assessment were found (p<.001). Formal caregivers scored ambiance more chaotic than informal caregivers did (p<.01). No differences in scoring between original and new items were found (p =.06). Conclusion: This study demonstrated that the modified Ambiance Scale had good internal consistency, moderate replicability and both informal and formal caregivers’ overall ratings were comparable. The modified Ambiance Scale is a valid, reliable and easy to use tool to assess ambiance in nursing home settings. (Edited publisher abstract)
Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia
- Authors:
- THOMPSON Genevieve, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(4), 2021, pp.1250-1269.
- Publisher:
- Sage
Background: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative’s end-of-life and assist them to make decisions about care along the dementia trajectory. Methods: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. Findings: Eight substantive categories essential to meeting family members’ needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. Conclusion: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information. (Edited publisher abstract)
Separation characterized by responsibility and guilt: family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities
- Authors:
- MIDTBUST May H., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(2), 2021, pp.518-533.
- Publisher:
- Sage
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. (Edited publisher abstract)