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.     

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.     

Coping Strategies and Caregiving Outcomes Among Rural Dementia Caregivers

We studied the coping styles by which family caregivers living in rural areas of Alabama deal with the demands of caring for an older relative with dementia. Data were obtained from a sample of 141 caregivers through the random-digit dialing telephone survey. Two coping styles were identified: deliberate coping and avoidance coping. Deliberate coping was related to higher life satisfaction scores and, avoidance coping was related to lower life satisfaction scores and higher caregiver burden scores. Avoidance coping appeared to moderate the effects of caregiver health on caregiver burden. Social workers should pay greater attention to caregivers with dysfunctional coping styles.     

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.     

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.     

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.     

Measuring Self-Appraised Changes following Participation in an Intervention for Caregivers of Individuals with Dementia

This study examined the psychometric properties of the Self-Appraisal of Change Scale, a measure designed to capture domains that are subjectively relevant to caregivers, associated with overall well-being, and amenable to change upon engaging in an intervention. Data from 107 caregivers of veterans with dementia enrolled in a randomized controlled trial of a telephone-delivered caregiver psychoeducation and support group program (the Telehealth Education Program (TEP)) were analyzed. The TEP, which was delivered by master’s prepared social workers and a nurse dementia care manager, targeted caregivers’ dementia-related knowledge, attitudes, and self-management skills. Analyses were conducted to determine the factor structure, reliability, validity, and measurement invariance of the scale. Factor analyses yielded a single-factor solution for the scale’s nine items. The reliability and construct validity of the scale were also supported by the analyses. Multi-group analyses suggested that meaningful comparisons of scale items and total raw scores can be made across usual care (UC) and intervention groups. The findings offer preliminary support that the scale may represent a valid and reliable instrument that captures perceived changes in key domains (e.g. caregiving knowledge, attitudes, and skill) following participation in a psychoeducational and support intervention trial.     

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACT

Since Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.     

Meditation Program Enhances Self-efficacy and Resilience of Home-based Caregivers of Older Adults with Alzheimer’s: A Five-year Follow-up Study in Two South Asian Cities

This article reports a five-year follow-up study in two South Asian cities on the impact of a long-term meditation program in enhancing self-efficacy and resilience of home-based caregivers of older adults with Alzheimer’s. Intervention group caregivers (pre-test N = 96; post-test N = 78) reported lower perceived caregiving burden, higher self-efficacy in obtaining respite, responding to disruptive patient behaviors and controlling upsetting thoughts, and greater resilience, post-test, in comparison to the control group (pre-test N = 89; post-test N = 67). Gender and relationship with the patient were two strong moderators determining program impact. Caregiver women, spouses, Hindus, middle class, with college and higher education, homemakers, who attended at least 75% of the meditation lessons and regularly practiced at home (i.e. once weekly for at least 75% of the weeks) reported lower post-test perceived caregiving burden, higher self-efficacy, and resilience. Results of the Tobit regression models confirmed the meditation-related moderators and indicated that home practice was the strongest predictor of post-test scores. Overall the meditation program is an effective intervention, however, would need to be refined for specific caregiver subgroups such as men, children and children-in-law and those working outside the home, to suit their realities.     

Live Discharge from Hospice and the Grief Experience of Dementia Caregivers

When an individual has dementia, family members are involved in many care transitions in their roles as caregivers. One such transition is the ‘live’ discharge from hospice services. This occurs when an individual no longer meets eligibility criteria. This can be difficult for caregivers who have been anticipating an end to understand in the context of their grief process. This qualitative study (N = 24) explored the experience of caregivers of adults with dementia, including Alzheimer’s disease, who experienced a ‘live’ discharge from hospice. Specifically, the experience of grief is examined. Results from this study highlight the complexity of caring for someone with a terminal disease and the grief experience in end-of-life care as caregivers struggle to understand the individual’s terminal prognosis as temporary. This is further complicated for caregivers who must resume caregiving responsibilities or assume a new caregiving role after experiencing a loss of hospice services. Finally, hospice social workers are well positioned to offer emotional and other concrete support to caregivers who experience a ‘live’ discharge.     

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.     

Efficacy of an Educational Program for Relatives of Persons in the Early Stages of Alzheimer's Disease

Abstract

This article describes the results of an educational intervention for family caregivers of persons in the early stages of Alzheimer's disease. A total of 45 family caregivers participated in this intervention that consisted of five weekly educational sessions about the disease and aspects of caring for someone in the early stages. Measures of knowledge about Alzheimer's disease, self-efficacy, reactions to patients' memory impairment, and level of depression at pretest and posttest were analyzed. Participants' knowledge about the disease improved substantially, self-efficacy and reactions to patients' impairments improved moderately, and level of depression showed no significant improvement. Results suggest that this intervention has merit for family caregivers coping with the early stages of Alzheimer's disease. Implications for implementation and evaluation are discussed.     

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.     

Assessment of Alzheimer’s Disease Symptom Recognition in Korean Americans and Psychometric Analysis of Alzheimer’s Disease Symptom Recognition Scale (ADSRS)

This study examined recognition of Alzheimer’s disease symptoms among Korean Americans (KAs) and assessed psychometric properties of the Alzheimer’s Disease Symptom Recognition Scale (ADSRS). A cross-sectional survey collected data from 209 KAs, using a self-administered questionnaire. Results show that KAs recognized symptoms related to memory and cognitive functioning well, but had very limited recognition of neuropsychiatric symptoms. Psychometric analysis of ADSRS identified 4 factors in their symptom recognition. Findings suggest a need to raise awareness of Alzheimer’s symptoms over the course of the disease. Assessment using ADSRS can be incorporated in communication in the practice context and public outreach.     

Implementation of a Community-Based Approach to Dementia Care in England: Understanding the Experiences of Staff

ABSTRACT

Given the increasing numbers of people living with dementia, it is imperative that new, practical solutions are found to the issues faced by this group of people and their families. This article draws on findings from a qualitative study that explored the implementation of a community-based project to support people living with dementia in one local area in England. This approach has different names; in the United Kingdom it is Shared Lives or adult placement, which would be most comparable to family care in Europe and adult foster care in the United States. Interviews were conducted with 14 staff connected to the Shared Lives project. Interview data were coded using the normalization process theory constructs of coherence, cognitive participation, and collective action. Supportive program factors identified were a dedicated staff member and resources, and the availability of specialist knowledge and skills. Detriments to program success included lack of understanding about the service, perceptions it was a poor fit with existing practice, and wider organizational issues that negatively affected normalization of the intervention. Suggestions for future research go beyond staff opinions, stressing the importance of using a wider range of stakeholders and incorporating measurement of outcomes for people using the service.     

The Self-Forgiveness Process of Caregivers After the Death of Care-Receivers Diagnosed With Alzheimer's Disease

ABSTRACT

This study explores the relationship of self-forgiveness and adaptive coping, religious/spiritual practices, social support, decreased grief, and mental well-being. 133 caregivers were surveyed. Bivariate analysis and stepwise regression models revealed that decreased grief, adaptive coping, and social support were significant in explaining the variation in self-forgiveness. This is one of the first studies to address self-forgiveness as part of the grieving process of Alzheimer's caregivers. Future directions are explored supporting inclusion of self-forgiveness as an aspect of grief and adaptive coping; which is further enhanced by the level of social support experienced by the caregiver.