Understanding Ambiguous Loss in the Context of Dementia Care

Abstract

This study examined the experience of ambiguous loss for family members caring for a person with dementia living in a long-term care facility. Data for this study came from in-depth, active interviews conducted with 38 adult daughters and 23 adult sons caring for a parent with dementia living in a long-term care facility. The stories shared by the adult children revealed that ambiguous loss in the dementia context involves a long, on-going process of several phases including anticipatory loss, progressive loss and acknowledged loss. The nature of the ambiguity shifts and the experience changes for families as they journey through the ambiguous loss process. Acceptance and avoidance were the two most common coping strategies used in dealing with acknowledged loss.     

Danger and Dementia: Caregiver Experiences and Shifting Social Roles During a Highly Active Hurricane Season

This study examined disaster preparedness and decision-making by caregivers of community-dwelling persons diagnosed with Alzheimer’s or a related dementia (ADRD). Interviews were conducted with 20 caregivers in South Florida. Twelve of these interviews include caregiving experiences during the highly active 2004–2005 hurricane seasons. Results indicate that persons in earlier stages of ADRD can, and often do, remain engaged in the disaster preparation and planning process. However, during the early stages, persons may also resist evacuation, even if the caregiver felt it was necessary. During later stages of the disease, caregivers reported less resistance to disaster-related decisions, however, with the tradeoff of less ability to assist with preparation.     

Experiences of Caregivers in a Dementia Simulation Program

Abstract

Objectives: Simulation-based training has been used in health care to increase clinical knowledge and skills and understanding the experience of others. There is a lack of research in exploring experiences of caregivers of people with dementia in a dementia simulation program and its potential benefits on caregivers. The purpose of this qualitative study was to explore experiences of caregivers of people with dementia who participated in a dementia simulation program, called Dementia Live?.

Methods: Fourteen caregivers were interviewed after participation in DL, and thematic analysis using NVivo 11 software was used.

Results: Three themes emerged, including: (i) the Dementia Live? as an eye-opening experience; (ii) the perceived benefits of the Dementia Live? on themselves; and (iii) recommendation of the Dementia Live? to other caregivers.

Conclusions: Dementia simulation programs such as the Dementia Live? may help caregivers to have more empathy, understand better about the behaviors and feelings of people with dementia, and to use strategies that can help when working with people with dementia. Further experimental research is needed to examine effectiveness of the dementia simulation program on caregivers and people with dementia.     

The Transformative Potential of Social Work's Evolving Practice in Dementia Care

Social workers in diverse service systems throughout the United States encounter many opportunities for improving quality of life for people with dementia and their families. Yet practice with this population is unclearly defined and a core set of competencies for such practice does not yet exist. Instead, it is shaped by roles within aging and health systems. These roles are informed by a biomedical disease model of dementia. This article examines social work practice and its connection to evolving views on aging and senility throughout the 20th century. New directions for practice are recommended to improve services for individuals with dementia.     

Learning Experiences of Older Volunteers in a Community-based Social Program for People with Dementia

Abstract

This qualitative study aimed to explore older adults’ perspectives on volunteering in an activity-based social program for community-dwelling people with dementia called Stepping Stones. Semi-structured interviews were individually conducted with eight older adults who had volunteered in Stepping Stones. Interpretative phenomenological analysis was used to analyze interview data. Four themes related to learning experiences of older volunteers in Stepping Stones emerged. These themes include (a) self-growth and confidence in working with people with dementia; (b) understanding dementia, people with dementia, and needed support for people with dementia and their families; (c) desire not to develop dementia, while recognizing that anything can happen in old age; and (d) exercising person-centered approaches and taking on advocacy roles. Findings suggest that older volunteers gain feelings of personal growth and confidence in working with people with dementia, better understanding, and enhanced attitudes toward people with dementia through volunteering in an activity-based social program for people with dementia. Older adults will be able to fill the needs of community programs for people with dementia, while experiencing benefits from volunteering and learning in later life. Further research is needed to examine to what extent having previous dementia experiences make their experiences and learning different.     

Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care

Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.     

Developing the NICE/SCIE Guidelines for Dementia Care: The Challenges of Enhancing the Evidence Base for Social and Health Care

Internationally, interest is developing in the challenges ofdeveloping evidence-based guidelines for social work practice.The paper reports on the process of establishing the UK’sfirst joint health and social care evidence-based practice guideline,which is in dementia care. The paper addresses the methodologicaland procedural challenges of reviewing, meta-analysing and synthesizingknowledge for health and social care given the contrasting historiesof the two sectors in relation to the emergence of evidence-basedpractice. Dementia care is a complex domain within which socialand clinical perspectives intersect, reinforcing the desirabilityof producing ‘joined up’ health and social carepractice guidelines that are relevant to integrated services.It is suggested that the exemplar of producing a joint healthand social care guideline for dementia may be a model for futuredevelopment of practice guidelines. Some of the main recommendationsare presented to illustrate the character of the joint guideline,lessons are drawn for future guideline development, and implicationsfor policy and practice implementation are considered.     

Staff experience of a new approach to family safeguarding in Oxfordshire Children's Social Care Services

This paper presents the findings from a qualitative study that sought to understand the experiences of frontline staff working in Oxfordshire County Council (OCC) Children's Social Care Services and their views on a new family safeguarding model (Family Solutions Plus). Focus group interviews were conducted with 20 frontline staff and managers in different teams across OCC Children's Social Care Services using video conferencing software. Thematic analysis identified three overarching themes: Preparation for the implementation of Family Solutions Plus, staff views on the implemented model, and challenges to its implementation. Staff voiced strong support for the new model, which places a much greater emphasis than previous practice on supporting the whole family, developing parenting skills and keeping children safe with their families. The challenges associated with the transition to a new model were considerable in the short term, partly due to the COVID-19 pandemic, but there was optimism that the new model could be sustained and stabilized over time.     

Using RE-AIM to Evaluate Implementation of an Evidence-Based Program: A Case Example From Minnesota

The RE-AIM framework was used to evaluate the implementation experience of 14 organizations in Minnesota over 4 years as they adopted an evidence-based intervention for spousal caregivers. Purpose: To examine the implementation experience and describe sustainability issues. Methods: Mixed-methods using data from qualitative interviews, cost data, and caregiver experience data. Findings: Although the intervention was valued, most organizations were not able to continue providing the program. Conclusion: The results indicate a need for further translation or technical support to identify readiness and prepare the interventionist to offer the program, more robust recruitment methods, and additional funding strategies.     

Managing in the Trenches of Consumer Care: The Challenges of Understanding and Initiating the Advance Care Planning Process

To better understand how community-based long-term care providers define advance care planning and their role in the process, we conducted 8 focus groups with 62 care managers (social workers and registered nurses) providing care for Ohio's Medicaid waiver program. Care managers shared that most consumers had little understanding of advance care planning. The care managers defined it broadly, including legal documentation, social aspects, medical considerations, ongoing communication, and consumer education. Care managers saw their roles as information providers, healthcare team members, and educators/coaches. Better education, resources, and coordination are needed to ensure that consumer preferences are realized.     

The Role of Housing Managers in the Implementation of Community Care

This article will outline the response of housing management to the implementation of community care policy in the North East. It will locate housing's role within the broader development of community care policy, and briefly review the reasons for housing's relatively late arrival as a key partner, alongside social services and health, in the planning and delivery of services. Using information gathered from interviews with housing professionals, part-time housing students, voluntary organizations, and workers within health and social services, it outlines and evaluates five main factors which appear to be affecting the successful integration of housing management into the process of planning and delivering community care services in the North East.     

Grounding Constructions of Carers: Exploring the Experiences of Carers through a Grounded Approach

Social and political constructions of carers have been criticizedfor undervaluing the complexities of the experiences of carers.However, relatively little research has attempted to generatemore meaningful constructions of carers by drawing these considerationstogether. The purpose of this article is to begin addressingthis need. To accomplish this, the article is presented in twosections. First, an overview is provided on the current constructionsof carers and suggested considerations for research. Second,with this overview as its context, a study, taken from the author’sacademic dissertation, is presented. The study sets out to generatemore meaningful constructions of the caring experience througha grounded approach. The findings are based on a focus groupand interviews with fourteen carers in total. A diverse rangeof participants were involved, in order to generate categoriesthat would hold more relevance across caring experiences. Fourcommon categories for carers emerged, along with propertiesthat explained differences in experiences. The categories ofwhen carers start to care, circumstances change over time, justifyingthe use of support and using support are subsequently discussedin relation to current constructions, practice and policy.     

Recommendations for Hospice Care to Terminally Ill Cancer Patients: A Phenomenological Study of Oncologists' Experiences

The aim of this exploratory study was to better understand oncologists' experiences and their perceptions of hospice care as an end-of-life treatment choice for terminally ill cancer patients. To describe this experience, semi-structured qualitative interviews were conducted using phenomenological methods with nine oncologists. Four themes emerged from the data analysis: (a) feelings of discomfort and relief, (b) being different from others, (c) experience with nonhospice patients, and (d) factors influencing the decision to recommend hospice. Future research and a flexible interdisciplinary practice model are suggested to better assist with end-of-life care decision making and recommendations for hospice care with oncologists and their terminally ill cancer patients are presented.     

思想史视野中的质性研究:以方法意涵的构建为例

本文尝试从思想史视角反思质性研究方法,以揭示被结构视角遮蔽的研究过程,从而探讨一种直面内心的反思性社会科学研究方式。思想史视角强调回到文本去阐释书写者赋予研究方法以意涵的思想过程。本文以“推论”“充分必要性”与“意义”等三种方法论立场中的方法意涵构建过程为例展现这样的思想过程：方法论如何引导了对特定研究方法的选择;当方法论与现实情况存在差距时,书写者如何在原有方法论立场中发展对质性方法新的理解以捍卫方法论的合理性;书写者如何在强调与其他立场的区分中发展对方法的理解。本文由此揭示了看似相同的方法背后所蕴含的巨大意涵和实践差异。一种围绕“意涵”展开的方法知识系统将有可能被建立起来。思想史视角为反思性的质性方法知识构建提供了可以付诸实践的路径。     

Five-Year Follow-Up Study of the Qualitative Experiences of Youth in an Afterschool Arts Program in Low-Income Communities

ABSTRACT

Semistructured follow-up interviews were conducted with 32 Canadian youth ages 14 to 20 years old; 5 years prior, these youth had participated in a structured arts program. Given that little is known about the long-term effects of afterschool arts-based programs, interviews took a qualitative approach to delineate adolescents’ experiences with the program and their subsequent development. The findings from the qualitative interviews suggest that skill acquisition, positive staff-youth relationships, development of team building, positive peer relationships, a sense of belonging, and program flexibility were pertinent to sustained positive youth development 5 years following program completion. This article discusses the importance of follow-up studies and implications for future research and practice.     

Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety

This study investigates staff and family attitudes towards the use of the fences that surround many aged care facilities in Australia, in the context of indefinite detention of people with dementia. This indefinite detention has been described in a report from an Australian Senate Inquiry as “a significant problem within the aged care context”, which “is often informal, unregulated and unlawful”. Five focus groups comprising direct care workers, family members, nurse unit managers and facility managers discussed the reasons for and their attitudes towards fences. The results show a tension between the provision of physical and emotional safety. This is to say that even while it is illegal to detain people with dementia against their will, and even while participants understood the negative impact of fences on the well‐being and emotional safety of people with dementia, they accepted and supported the presence of perimeter fences because they provided the perception that fences kept people with dementia physically safe. This has implications for redressing the balance between physical and emotional safety in policy and practice.     

Implementation of Active User Principle: Learning from the Czech Social Services Reform

ABSTRACT

The active user principle introduced in Czech social services by the new Act on Social Services (2007) was expected to induce change of the prevalent paternalistic nature of social service provision. This study examines the relationship between clients and social service workers in social service facilities designed for people without shelter. From 2001 to 2008, instrumental case studies were examined from three different shelter facilities using qualitative interviews (with 17 members of staff) and document analysis. The findings indicated that neither the frontline workers nor the managers could always understand how to implement this principle. Response patterns and the effect it had on recipients are examined. These findings imply that such a profound change needs to be supported with proper explanation, professional training, and practical application skills. Directions for further application and future research are suggested.