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.     

Alzheimer's in the Workplace: A Challenge for Social Work

It is estimated that 5.3 million Americans have Alzheimer's disease or a related disorder (ADRD) with approximately 500,000 of these persons younger than 65. Moreover, the number of people affected by the disease will increase 350% by the middle of this century. Although research exists on organizational policies with regard to caregivers, very little is known about how organizations deal with employees themselves who show symptoms of ADRD. This article reports on a pilot study of employers' responses to dementia as it impacts both caregiving employees and employees who themselves show signs of cognitive impairment.     

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.     

Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers’ unique concerns and challenges and that build upon their existing care networks are recommended.     

Children with disabilities and disaster preparedness: a case study of Christchurch

An estimated seven million children with disabilities worldwide are affected by disasters annually. This significant figure emphasises the particular vulnerability of these children in facing natural hazards. However, their needs as well as their capacity and role in disaster risk reduction have largely been overlooked by researchers and policymakers. This paper draws on a case study in Christchurch to identify insights, realities, possibilities and obstacles in relation to the involvement in disaster preparedness of children with diverse disabilities. It reports on findings from focus group discussions and semi-structured interviews with children who have disabilities, their teachers and caregivers to explore children's preparedness and potential responses to a disaster. The findings indicate a considerable variation in how children with disabilities access available resources and perceive, face and cope with natural hazards. This paper shows their potential contribution to disaster preparedness and provides further suggestions for policy and practice.     

Children with an imprisoned parent: children's and caregivers' narratives

Previous studies have found that children may experience adverse effects from parental imprisonment. However, little research concerning this issue from children's perspectives has been undertaken in Hong Kong. In order to fill the knowledge gap, this study aims at exploring the challenges and resilience of children with a parent in prison. Nine children aged between 9 and 11 years with a parent in prison, and their caregivers, were interviewed. Their life experience and feelings during parental imprisonment were explored. The caregivers were asked about changes in the children's behaviour and resilience in the children. Children reported that they experienced academic stress and psychological distress, including sadness and problems in having to conceal their parent's imprisonment. They benefited through positive thinking, holding religious beliefs and talking to trusted persons. For caregivers, children's conduct problems, psychological distress and suppression of feelings were reported as the challenges children faced, while object hitting for venting emotion, religious beliefs and engagement in activities were reported as helping children to cope. The article concludes by making a number of recommendations concerning the provision of services, including the establishment of mutual-aid self-help groups, mentoring programmes and programmes promoting the importance of positive thinking for the children, and trainings for caregivers on understanding children's needs, as well as public education on the social stigma of parental imprisonment.     

Caregiver's Spirituality and Its Influence on Maintaining the Elderly and Disabled in a Home Environment

ABSTRACT

This study examined the role that faith-based organizations play for caregivers in maintaining the elderly and disabled in their homes. The study explored if persons who use religious beliefs and practices cope with caregiver stress better than those who do not use religious beliefs and practices. The study also explored the role of religious coping as a factor affecting decisions to institutionalize, and the role that faith-based practices and organizations play in helping caregivers maintain the elderly and disabled in their homes.     

Use of an Online Community to Provide Support to Caregivers of People With Dementia

One challenge faced by many family members caring for persons with dementia is lack of information about how to take care of others and themselves. This is especially important for persons from ethnic minority groups, because linguistically and culturally appropriate information is often not available. In response to these needs, we developed a web site for Spanish-speaking caregivers. Cuidatecuidador.com provides bilingual information on dementia and caregiver issues. Content was developed and then evaluated by caregivers residing in 3 countries. Findings suggest trends that exposure to information may be related to a higher sense of mastery and a reduction of depressive symptomatology.     

Life stress, social support, coping and depressive symptoms: a comparison between the general population and family caregivers

Major depression is one of the four most prevalent psychiatric diseases in Taiwan. Furthermore, a study showed that 45 per cent of the family caregivers of persons with persistent psychiatric disability were at risk of depression. The present study aimed at examining if caregivers experienced more depressive symptoms than the general population while controlling for other variables (direct effect), and if the constellation of correlates of depressive symptoms was different between the general population and caregivers (interaction effect). Data from 1979 subjects were gathered in a national survey, using stratified random sampling. The results revealed that the caregivers experienced significantly more depressive symptoms than the general population. However, the effect disappeared when other variables were taken into account. Life stress appeared to be more important than coping and social support. The other two common correlates of depressive symptoms were age and being unmarried. Relational stress mattered especially for caregivers. Lastly, social support variables were significant only for the general population; satisfaction with support could buffer the negative effect of survival stress on depressive symptoms.     

Family Influence on Caregiver Resistance,Efficacy, and Use of Services in Family Elder Care

This research investigated how resistance to use of services attributed to family members and primary caregiver self-efficacy and resistance influenced actual use of services. Data were analyzed from questionnaires completed by 224 persons engaged in informal elder care in the community. Tests of 6 hypotheses revealed that family influence on caregivers had a consistent, important influence on behavior and views of caregivers. Family resistance to use of formal services framed caregivers' feelings, preferences, and decisions ranging from their own perceived self-efficacy to actual obtainment of help outside the family. Professionals must include family members in their dialogue with primary caregivers about their plans for elder care. Suggestions for interventions to better understand family and caregiver resistance are discussed.     

Medication management and adherence among cognitively impaired older adults

This study examined the relationship between patients' cognitive status, deficit awareness, medication management skills, and actual medication adherence. Twenty-seven persons with Alzheimer's disease and 20 healthy controls were evaluated for their predicted and objective performance on tasks related to medication management. Caregivers were also evaluated for their prediction of the care recipient's management abilities. A pill count was taken at the initial interview and 30 days later. MMSE and deficit awareness were related to amount of help received from a family member, suggesting that caregivers tend to accurately assess their relatives' medication management abilities. Adherence rates were acceptable, but some intervention strategies selected by caregivers were not effective in assuring adequate adherence. Additional study is needed to determine the effectiveness of various strategies adopted by informal caregivers.     

Long-term planning and decision-making among midlife and older gay men and lesbians

This article examines the issues of long-term planning and decision-making among midlife and older gay men and lesbian caregivers. Using a qualitative methodology, in-depth interviews were conducted with 19 gay men and lesbians over 50. Participants reported on their long-term planning and decision-making processes. All but four persons reported that their partners had advance directives, but the majority of caregivers did not have advance directives for themselves. Concerns about informal family dynamics and interactions with formal systems were expressed, along with financial and ownership issues. It is important for social workers to intervene across individual, organizational, and community levels in advocacy for the needs of older gay men and lesbian clients.     

Training Area Agencies on Aging Case Managers to Improve Physical Function,Mood, and Behavior in Persons With Dementia and Caregivers: Examples from the RDAD-Northwest Study

The Reducing Disability in Alzheimer’s Disease (RDAD) program has been shown to be an effective tool for teaching caregivers strategies to improve mood, behavior, and physical function in persons with dementia. This paper describes how RDAD has been translated and implemented for use by Area Agencies on Aging (AAA) case managers across Washington and Oregon. Modifications to the original RDAD program as part of its community translation included decreasing the number of in-person sessions while preserving all educational content; involving caregivers in exercise activities for themselves as well as acting as exercise coaches for care-receivers; and enrolling persons with cognitive impairment due to mixed etiologies. This paper describes these changes and their rationale, the challenges faced by community agencies recruiting for and delivering evidence-based programs, and illustrates the actual RDAD implementation process through several brief case examples. Case examples also illustrate how RDAD-Northwest can be useful with care-receivers with a range of cognitive impairment severity, family caregiving situations, and levels of mood and behavioral challenges.     

Long-Term Planning and Decision-Making Among Midlife and Older Gay Men and Lesbians

Abstract

This article examines the issues of long-term planning and decision-making among midlife and older gay men and lesbian caregivers. Using a qualitative methodology, in-depth interviews were conducted with 19 gay men and lesbians over 50. Participants reported on their long-term planning and decision-making processes. All but four persons reported that their partners had advance directives, but the majority of caregivers did not have advance directives for themselves. Concerns about informal family dynamics and interactions with formal systems were expressed, along with financial and ownership issues. It is important for social workers to intervene across individual, organizational, and community levels in advocacy for the needs of older gay men and lesbian clients.     

Supervision as pedagogy and support in the Swedish eldercare - a developmental project

The number of elderly people is gradually increasing, and with it the number of persons receiving some kind of care in their everyday lives. However, researchers and the mass media recurrently report great difficulties for many caregivers in their work situations. This article considers process-oriented supervision as a pedagogic method for training and support of nurse aids and managers in Swedish eldercare. With reference to a developmental project, the author discusses the clash between the supervisor's process-oriented manner and the staffs' problem-oriented attitudes. This shows that supervision in this form may not necessarily be an effective way of reforming care. Instead the caregivers point out organisational changes and better leadership as more adequate methods.     

Coaching Family Caregivers to Become Better Problem Solvers When Caring for Persons with Advanced Cancer

Family caregivers of persons with advanced cancer often take on responsibilities that present daunting and complex problems. Serious problems that go unresolved may be burdensome and result in negative outcomes for caregivers’ psychological and physical health and affect the quality of care delivered to the care recipients with cancer, especially at the end of life. Formal problem-solving training approaches have been developed over the past several decades to assist individuals with managing problems faced in daily life. Several of these problem-solving principles and techniques were incorporated into ENABLE (Educate, Nurture, Advise, Before Life End), an “early” palliative care telehealth intervention for individuals diagnosed with advanced cancer and their family caregivers. A hypothetical case resembling the situations of actual caregiver participants in ENABLE that exemplifies the complex problems that caregivers face is presented, followed by presentation of an overview of ENABLE’s problem-solving key principles, techniques, and steps in problem-solving support. Though more research is needed to formally test the use of problem-solving support in social work practice, social workers can easily incorporate these techniques into everyday practice.     

Predictors of Depression Among Caregivers of Older Adults With Severe Mental Illness

Caregivers of older persons with severe mental illness (SMI) contend with the double challenge of providing assistance related to both the psychiatric condition and older age of their family member. Study explored factors influencing negative psychological outcomes experienced by caregivers (n = 96) of older adults with SMI. One-quarter of caregivers scored at or above the clinical point for depression. Low income, care recipient gender, poor health, problems dealing with care recipient’s symptoms and the interaction of health and problems dealing with symptoms were associated with higher rates of depression. Implications for service provision and future research are discussed.     

Disaster Preparedness among Older Adults: Social Support,Community Participation,and Demographic Characteristics

This study examined factors associated with disaster preparedness among older adults, with special attention paid to demographic characteristics, social support, and community participation. From a larger study about disaster preparedness of persons with disabilities, a total of 719 adults aged 55 years and older were used for this study. The results of the logistic regressions indicate that individuals who have higher levels of social support and more connections to community organizations are more likely to be prepared for disaster-related emergency situations. In another model, using resource preparedness as the dependent variable, an interaction effect between social support and income was found. Overall, higher income and higher informal support are related to a higher level of resources for disaster preparedness. However, the relationship between income and disaster preparedness is much stronger for those sub-groups receiving more informal support. The findings of this study expand knowledge regarding issues of disaster preparedness among older adults and demonstrates the importance of social resources and networks. This study suggests an intervention model for decision-makers and community leaders in terms of providing information and advice to members of their communities about how to adequately prepare for natural disasters.     

Treatment at the end of life

End-of-life care has gained recognition as an important interdisciplinary clinical domain during the past three decades largely because scientific and medical advances have changed the nature of dying in the US. Advances in the treatment of life-limiting ilness have typically focused on medical issues and on treating the physical symptoms that accompany the final stage of a terminal illness. However, because the lengthening life span has made more choices available at the end of life, there is also greater need for evidence-based psychosocial treatment to diminish some of the prolonged emotional, psychological treatment to diminish some of the prolonged emotional, psychological, social, and spiritual distress that accompanies dying. Both terminally ill older adults and their caregivers can be helped by interventions that address the need for information, education, preparation, communication, emotional support, and advocacy. This paper preents a review of evidence-based psychosocial treatments at the end of life for both older adults and their caregivers.     

Darwin Cyclone: An Exploration of Disaster Behaviour

Events associated with the Cyclone Tracy strike at Darwin on 25 December 1974 are described. With the loss of 49 lives, a further 16 persons missing and presumed dead, and hundreds injured, this became Australia's greatest national disaster to date. A total breakdown in facilities occurred. The responses of people before, during and after the cyclone are examined. Problems associated with social breakdown, spontaneous community efforts to deal with this and individual emotional problems are highlighted. A distinction between the trauma of the cyclone and that of the evacuation is made. The apparent inability of Australians to concede that disasters have emotional as well as social and physical consequences is looked at.