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 Maine Savvy Caregiver Project: Translating an Evidence-Based Dementia Family Caregiver Program Within the RE-AIM Framework

This article presents findings of a 3-year Savvy Caregiver Program translational study designed with the RE-AIM framework to create a statewide sustainable infrastructure and improve dementia family caregiver outcomes in one rural state. The RE-AIM dimensions—reach, effectiveness, adoption, implementation and maintenance—were evaluated using mixed methods. The program reached 770 caregivers and 87.7% (n = 676) participated in the study with 60.5% (n = 409) residing in rural locations. Participants demonstrated improved confidence, fewer depressive symptoms, and better managed their situation. Trainer resources, partnerships, and adequate planning were essential for program adoption and sustainability. Implications for replication are discussed.     

Dementia Caregiving Outcomes: The Impact of Caregiving Onset,Cognitive Impairment and Behavioral Problems

With a projected increase in the prevalence of Alzheimer’s disease (AD) and related dementias, family caregiving is steadily increasing. Caring for an individual with AD is characterized as a “career,” and within this career are a number of key transitions, including the onset of caregiving. Research reveals a number of negative emotional health outcomes for AD caregivers, including depression and role overload, but less research has examined the influence of key transitions on the emotional adaptation of caregivers. The purpose of this study is to examine how different patterns of caregiving onset (gradual and abrupt) impact emotional health outcomes for AD caregivers. This study also explores how care-recipient cognitive impairment and behavioral problems moderate these relationships. Cross-sectional, quantitative data from 100 caregivers completing self-administered surveys were used. A series of one-way ANOVAs and multiple regression analyses were conducted to address study aims. Results indicate that care-recipient cognition and behavioral problems moderated the relationship between caregiving onset and emotional health outcomes for caregivers who experienced a more abrupt entry into the caregiving role. Results suggest the importance of considering different onset transitions and moderating factors within the caregiving career to target clinical interventions. Implications for social work practice are discussed.     

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.     

Asian Pacific Islander Dementia Care Network: A Model of Care for Underserved Communities

This study presents the results of the work of the Asian Pacific Islander Dementia Care Network (APIDCN)—a collaborative model of care created to develop community capacity to deliver dementia capable services, build community awareness about Alzheimer’s disease and other dementias, and offer direct services to caregivers in the API community in Los Angeles. Through trainings, mentoring, and outreach campaigns, the APIDCN expanded the availability of culturally competent services in the API community. The knowledge that was embedded within partner organizations and in the community at large assures sustainability of the services after the project ended.     

Every Three Seconds: A Review of an Innovative Documentary on Research and Stigma Surrounding Dementia Across the Globe

Every Three Seconds is an innovative documentary provided by Alzheimer’s Disease International (ADI) and In the Moment (ITM) Productions which explores the impacts of dementia, national and international frameworks and strategies for helping communities,and technological advancements aimed to slow and potentially cure dementia in addition to efforts to raise awareness and reduce stigma. In this review, a general summary of the documentary is provided and its organization, audience and quality related concerns, relevance to gerontological social work and social welfare, the credibility of ADI and key strengths and weaknesses of the film are also explored. Finally, the review concludes with a discussion of how this documentary may be useful for caregivers,individuals with dementia, researchers, and lay audience members alike as well as how it may be used in classroom and/or in organizational settings.     

The Savvy Caregiver Program: Impact of an Evidence-Based Intervention on the Well-Being of Ethnically Diverse Caregivers

This article reports on the impact of the Savvy Caregiver Program (SCP) on English-speaking caregivers of Hispanic, Black/African American, and Asian/Pacific Islander descent. Caregivers completed a questionnaire prior to study enrollment, at 6 and 12 months postenrollment. Caregivers in all 3 ethnic groups showed more caregiver competence, reduced depression, greater tolerance for care recipients’ memory problems, better management of their overall situation, and improved perception of that situation 6 months and 12 months post-enrollment. The study demonstrates that in the sample studied the SCP was as effective in helping ethnically diverse caregivers as it has shown to be with Caucasian caregivers.     

Recognizing But Not Acknowledging: On Using Research Information in Social Work with Elderly People Suffering from Dementia

The gap between theory and practice in social work continuesto be great, and research results seem to live a life of theirown, far from the field they were intended to improve. Thisarticle considers research information as a useful contributionto the practice of social work with elderly demented peopleand to qualitative methods used in the area of social scientificresearch. Arising out of a project aimed at studying the usefulnessof research information through an interactive exercise withinfocus groups, the author discusses how the results of researchcan be used to improve practice. When the researchers’theoretical- oriented perspectives meet with the practitioners’action-oriented perspectives, two different models enrich eachother in the process of developing integrated knowledge.     

Global Social Justice for Older People: The Case for an International Convention on the Rights of Older People

Older people are beginning to represent a large proportion ofthe general population and have become a major area for socialprogramming in many parts of the world. However, neglect orviolation of older people’s rights is common. Until recently,there has been a surprising lack of advocacy on the part ofnon-governmental organizations (NGOs) and human rights activistsfor a legally effective international convention on the rightsof older people, as compared with other vulnerable groups suchas children and women. This paper argues that the introductionof an international convention on the rights of older peopleis long overdue. Such an international convention should containcomprehensive and legally binding provisions which would requireratifying states to promote older people’s rights. Itshould be reinforced by a strong monitoring system that wouldinvolve key members of the international community. This paperoutlines the arguments in favor of the creation of a transnationalhuman rights agreement for older people and proposes that internationalNGOs and human rights advocates should work toward creatingsuch a convention.     

Promoting Personalization in Social Care Services for Older People

This article presents findings on 4 themes associated with the personalization of social care for older people: integration of health and social care services; initiatives that prevent the need for more costly interventions; services to maintain people at home; and systems that promote choice, control, and flexibility. The quantitative study utilized data from a national postal survey conducted in England. Findings suggest variable progress regarding the range and style of support available to older people. These are discussed in the context of service integration, community-based services, and consumer-directed care. Implications for service development and future research are highlighted.     

Social Support,Caregiver Burden,and Life Satisfaction in a Sample of Rural African American and White Caregivers of Older Persons With Dementia

This article reports the findings of a study of African American and White dementia caregivers (n = 141) living in rural areas of Alabama that examined the relations between the participants' receipt of informal social support, and their levels of caregiver burden and life satisfaction. The sample, as a whole, reported high levels of social support with no reported differences in social support by race. Female caregivers reported higher mean scores on 3 of the 4 dimensions of social support than their male counterparts. Two of the 4 dimensions of social support accounted for 32% of the variance of the caregivers' reported level of life satisfaction.     

Social Workers' Experiences of Virtual Psychotherapeutic Caregivers Groups for Alzheimer's,Parkinson's,Stroke, Frontotemporal Dementia,and Traumatic Brain Injury

ABSTRACT

The objective of this study was to examine the challenges for social workers who transition from facilitating face-to-face psychotherapeutic groups to online web-based video groups with family caregivers of persons with chronic disease. Study data consisted of survey responses of a group of therapists who had facilitated a series of web-based video-conferencing caregiver groups over a period of 4 years. All therapists were trained using an intervention training manual and weekly supervision. They received minimal training with regard to using technology (computers, Internet, web cams, and headsets). Despite reported challenges in how the technology affected the group process, therapists described overall positive experiences transitioning from face-to-face to working online. All therapists reported that group interactions and client outcomes in the Internet environment were overall comparable to those that occur in face-to-face groups.     

Raising Self-esteem through Social Networking Intervention for Older Chinese Adults in Hong Kong

Sudden physical changes can take a toll on older adults' self-esteem. Broadening their social support networks is one approach to retaining their self-esteem. This quasi-experimental study aims to test the effectiveness of a social networking program to raise self-esteem. The results from split-group analyses demonstrate that those who maintained active participation exhibited higher self-esteem. The results provide significant implications for future practice, especially to the less-educated males.     

An Exploratory Study of Social Work with Older Persons in Cuba

Abstract

Assuring a satisfactory quality of life for Cuba's large and fast growing older population is a national challenge. Social work plays an important part in addressing this challenge through its role in Cuba's National Program for the Care of Older Persons. This article explores the role of social work in Cuba's programs for the elderly and its implications for social work practice in the US. The information was obtained from 25 qualitative interviews with policy makers, social work practitioners, and community members in Havana, Cuba in 2003. The community oriented and interdisciplinary nature of Cuban social work with older persons distinguishes it from social work in the US and has implications for social work in this country. Despite the differences between Cuba and the US, the Cuban social work model provides important insights for social work in this country.     

To Coordinate Information in Practice: Dilemmas and Strategies in Care Management for Citizens with Dementia

ABSTRACT

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of information and in regards to conflicting interests between different actors involved in the assessment of the need for support for people with dementia. Strategies used to handle problematic situations that arise in their work are using other sources for information (e.g., relatives and actors from other professions), persuading, and pursuing creative forms of consent. However, the study shows that dilemmas and strategies used generate other, prominently moral, dilemmas for care managers in their practice, which relate to participation and self-determination by the person with dementia. The study shed light on the problematic situation for care managers in their work to coordinate information and further the new “realities“ that they encounter as well as on how to handle these new situations. This study suggests possible ways to improve the everyday work of care managers, as well as how policies concerning social work and people with dementia can be improved.     

Being with a Person in Our Care: Person-Centered Social Work Practice that is Authentically Person-Centered

ABSTRACT

Person-centered care (PCC) has emerged over the last several decades as the benchmark for providing quality care for diverse populations, including older adults with multiple chronic conditions that affect daily life. This article critiques current conceptualizations of PCC, including the social work competencies recently developed by the Council on Social Work Education, finding that they do not fully incorporate certain key elements that would make them authentically person-centered. In addition to integrating traditional social work values and practice, social work’s PCC should be grounded in the principles of classical Rogerian person-centered counseling and an expanded conceptualization of personhood that incorporates Kitwood’s concepts for working with persons with dementia. Critically important in such a model of care is the relationship between the caring professional and the care recipient. This article recommends new social work competencies that incorporate both the relationship-building attitudes and skills needed to provide PCC that is authentically person-centered.     

United We Stand? Partnership Working in Health and Social Care and the Role of Social Work in Services for Older People

The concepts of ‘partnership’ and ‘collaboration’have become amongst the most critical themes of ‘new’Labour’s social policy, particularly in respect of thedelivery of health and social care. Although the terms are rarelyprecisely defined and hence have become problematic to analyse,in most understandings successful partnerships rely upon goodsystems of inter-professional collaboration. Through revisitingthe extensive literature on the sociology of the professions,and the nature of inter-professional working, this paper willargue that effective collaborative working within health andsocial care is hard to achieve, particularly in the light ofthe vast differences in power and culture between various occupationalgroupings, and the inherently competitive nature of professionsjostling for territory in the same areas of activity. It suggeststhat these issues cannot be resolved unless they are properlyunderstood; a rhetorical appeal to the unmitigated benefitsof ‘partnership’ alone will not produce more effectivejoint working. In addition, it notes that an appropriate rolefor social work in the context of partnership working has yetto be defined and proposes specific tasks and values that distinguishthe social worker from other related professionals.