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.     

Attitudes Toward Spousal Caregiving in Late Adulthood

Abstract

The study dealt with differences in attitudes toward spousal caregiving among pre-retired (n = 269) versus retired (n = 250) Israelis. Attitudes toward spousal caregiving at times of illness were examined from three perspectives: Commitment to caregiving, perceived harmful effects of caregiving, and delegation of responsibility for caregiving. Compared with the pre-retired group, the retirees revealed higher levels of commitment and showed less of a tendency to delegate responsibility for caregiving. At the same time, they perceived caregiving as having more harmful effects. In addition, different variables were found to explain these attitudes among both groups of participants. Among the pre-retired participants, equality in household tasks contributed most toward explaining commitment to spousal caregiving. Among the retired participants, in contrast, past assistance from the spouse was one of the most significant variables. For both groups of participants, past assistance from the spouse and equality in division of household tasks were the best predictors of perceived harmful effects. With regard to delegating responsibility for caregiving, the most salient variables among both groups of participants were marital tension and equality in division of household tasks. No gender-based differences were found in attitudes toward caregiving.     

Depressive Symptoms among Former Spousal Caregivers: Comparing Stressors,Resources, and Circumstances of Caregiving Cessation among Older Husbands and Wives

Little research focuses on the mental health of caregivers (CGs) who stop providing care to their community-dwelling spouse. We examine depressive symptoms of former primary CG spouses who stopped caregiving over a two-year follow-up period when the care recipient (CR): (1) no longer has functional problems; (2) continues having functional problems; or (3) dies. Using data from the Health and Retirement Study (2000–2014), we located 2,370 couples who were both 50+ at baseline and where one partner provided help with ADL and/or IADL limitations but did not do so two years later. OLS regressions stratified by gender indicated that both male and female former spousal CGs whose CR died had significantly more depressive symptoms than those who ceased caregiving when their spouse did or did not still have functional problems. Former wife CGs who were older and whose husbands had more baseline ADLs had fewer follow-up depressive symptoms; wife CGs whose husbands had a nursing home stay had more depressive symptoms. Former husband CGs who had provided longer monthly hours of care had fewer follow-up symptoms. Findings underscore the importance of targeting mental and physical health services to both former caregiving husbands and wives, especially after spousal death.     

The Potential of Information Technology to Navigate Caregiving Systems: Perspectives from Dementia Caregivers

Technologies designed to support caregivers of adults with Alzheimer’s disease and related dementias (AD/RD) have been developing at an increasingly rapid pace. However, little remains known about caregivers’ perspectives on how technologies can and should help them navigate larger service systems they interact with to engage in caregiving. This study involved in-depth interviews and a beta test of an AD/RD caregiver app to learn more about how they currently use technologies and how potential technological features and functions can best meet their needs. Thematic findings suggest a conceptual model for designing AD/RD caregiver technologies. The findings suggest that eHealth and individual technologies may not fully meet the needs of caregivers as they navigate the larger systems within which they provide care. Findings highlight the need to develop technologies for caregivers that are effective, easy to use, and more widely disseminated – especially for caregivers from disadvantaged backgrounds.     

Caring for Individuals with Chronic Illness and Minor Depression: Latino Perceptions of Caregiver Burden

ABSTRACT

Informal caregiving can be fundamental to disease management. Yet, the psychosocial, physical, and financial burden experienced by caregivers can be significant. In the US, Latinos experience increasing rates of chronic conditions, the highest uninsured rates in the country, and a growing dependence on informal caregivers. This article explores the impact of caregiving on caregivers of individuals with comorbid chronic disease and depression. Findings highlight the impact of caregiving on financial insecurity, balancing competing demands, increased emotional distress, and community supports. Findings support the inclusion of caregivers in disease management programs to enhance psychosocial outcomes for both caregivers and their patients.     

Caring for my wife: voices from Malay older husbands in Singapore

This study explores how Malay older husbands giving care to their wives in Singapore respond to these roles through coping strategies and social support. This study uses in-depth interviews with five Malay older husbands whose wives are homebound because of dementia and kidney problems. Key findings suggest that husbands report low caregiver burden or strain. However, all the participants report that they do not take time off from their caregiving roles because they have no other immediate sources of support. Services relieving their caregiving responsibilities would be helpful to reduce stress and prevent future burnout.     

Caregiving Load and Respite Service Use: A Comparison between Older Caregivers and Younger Caregivers

Study aims were to explore differences in predictors of respite care use between older (aged 65+) and younger caregivers (aged 18–64 years), and associations between caregiving load and respite care use using multivariate logistic regression analysis and unpaid caregiver (n= 10,500) data from the 2009 California Health Interview Survey. Caregiving load comprised number of care recipients, weekly hours in caregiving, and caregiving duration. Variables with a significant association with respite care for older caregivers were female gender, income, and health insurance. For younger caregivers, respite care use associations were with ethnicity, caregiving relationship, education, and availability of substitute help.     

Chinese American Family Caregivers’ Perception of Program Use and Caregiver Stress

Caregiver programs provide specialized services and resources to reduce caregiver stress and improve family quality of life and health. Although there are resources and community services available, Chinese American family caregivers’ perceptions on caregiver programs and how specific services help to viably reduce their stress has yet to be examined. An in-depth interview was conducted with four Chinese American family caregivers in exploring their caregiving experiences and program service use; two of the caregivers were spouses and two were adult children. Content analysis revealed that their value of familial piety, and their need to ameliorate caregiver stress fueled their interest in new interventions to improve their quality of life and health. Spousal caregivers and adult children caregivers disclosed different needs due to caregiving, and adult children caregivers were less resistant to new interventions. The results of this study fill the knowledge gap on Chinese American family caregivers’ perception of caregiving in a cultural context as well as their needs. Suggestions for future research are to better understand the effectiveness of the specific services within caregiver programs that are effective in reducing caregiver stress among Chinese American family caregivers.     

Philanthropy and Government

Abstract

This study examines the effect of characteristics of the caregiving network on the likelihood of using supportive services by dependent older persons. Logistic regression analysis was conducted with a probability sample of community-dwelling elders cared for by their wives or daughters (n = 209). Results indicate that the specific composition of the caregiving networks, including the identity of the primary caregiver (wives vs. daughters), the availability and identity (kin or friends) of secondary helpers determines the likelihood of service use. The findings suggest that elders cared for by their wives alone may be quite isolated and should be the priority for community outreach services.     

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.     

Gerontological Social Work Student-Delivered Respite: A Community-University Partnership Pilot Program

ABSTRACT

This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers’ experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.     

Children's Attachment Relationships with Day Care Caregivers: Associations with Positive Caregiving and the Child's Temperament

In this study, children's attachment relationships with their professional caregivers in center day care were observed for 48 children. We explored whether more positive caregiving was associated with a more secure attachment relationship and whether this association was stronger for more temperamentally irritable children compared to less irritable children. Trained observers coded the attachment relationship in the day care setting using the attachment Q-sort. The observational record of the caregiving environment was used to assess children's individual experience of positive caregiver–child interaction in the classroom. When caregivers showed more frequent positive caregiving behavior, children showed more secure attachment behavior toward their primary professional caregiver. Temperament was not related to attachment security, nor did it serve as a moderator. Consequently, no support for Belsky's susceptibility hypothesis was found.     

Effects of Nurturing and Non‐nurturing Caregiving on Child Social Initiatives: An Experimental Investigation of Emotion as a Mediator of Social Behavior1

This study examined the effects of one unfamiliar adult's warm, responsive interactions or cold, aloof, unresponsive interactions on child emotion and subsequent social initiatives to a second adult. Participants were 32 4¹/₂‐ to 5¹/₂‐year‐old preschool children. Nurturing, responsive caregiving and non‐nurturing, unresponsive caregiving were experimentally manipulated by experimenter facial and vocal affective expressions, positive versus negative statements to the child, and contingency of responding to the child's behavior. The effect of nurturance was examined on child emotions and social initiatives to another adult. Non‐nurturing caregiving produced less expressed happiness and fewer subsequent social initiatives. Furthermore, child emotion was found to mediate partially the relation between nurturing caregiving and social initiatives, with children who experienced interactions with a non‐nurturing caregiver expressing less happiness, which led to decreased social initiatives to a second adult.     

Can Cultural Values Help Explain the Positive Aspects of Caregiving Among Chinese American Caregivers?

This study used an adaptation of the caregivers' stress model to examine the positive aspects of caregiving with 113 Chinese American family caregivers who provided care to their elderly relatives. The hierarchical multiple regression analysis indicated that combination of caregiver background characteristics, stressors, and cultural values had direct effects on positive aspects of caregiving. Unlike previous studies in which cultural values were not measured, this study found that cultural values helped explain positive aspects of caregiving. Specifically, cultural values, caregiver's health, and caregiver's age predicted positive aspects of caregiving. Service implications are discussed based upon the findings.     

Patterns of Informal Help and Caregiving in Sweden: A Thirteen-Year Perspective

This article analyses informal help and caregiving in Sweden with a focus on the scope and trends of change over time. The discussion is based on the results of three national surveys and of one survey conducted in the county of Stockholm. The results indicated that informal help and caregiving was common throughout the period under study. In the 1990s, the figures were fairly stable, while from the late 1990s to 2005 there seems to have been a dramatic increase in the prevalence of such support. Two interpretative perspectives are used to discuss this pattern. One locates its point of departure in recent welfare state changes and in the substitution argument, according to which cuts in welfare services put more pressure on people to provide informal help and care. The second perspective relates to the present debate on civil society and to its possible role in contemporary society. According to the civil society perspective, an increase in the prevalence of informal help and caregiving might be interpreted as an expression of growing civic involvement 'in its own right', without a straightforward and simple relationship to changes in the welfare state. It is argued in the article that the two frames of interpretation should not be viewed as mutually exclusive, but rather that they represent two partly complementary approaches to the understanding of the complex dynamics of unpaid work in contemporary Swedish society.     

Deciding to Institutionalize: Caregiving Crisis,Intergenerational Communication,and Uncertainty Management for Elders and Their Children in Shanghai

This phenomenological study integrated crisis theory, social identity theory, and uncertainty management theory to conceptualize the decision-making process around institutionalization among nursing home residents and their children in Shanghai. I conducted face-to-face, semistructured interviews with 12 dyads of matched elders and their children (N = 24). The findings suggest that caregiving crises triggered intergenerational communication about caregiving alternatives and new arrangements, although each generation had different stances and motivations. Children finalized the decision by helping their parents to manage the uncertainties pertaining to institutionalization. This study sheds light on caregiving decision-making dynamics for the increasing aging population across cultures.     

Change and Adaptation in Families with Young Carers

Using grounded theory methodology, members of nine families with 'young carers' were interviewed to explore their experiences of caring. A dynamic theory of change and adaptation emerged in relation to changes in who cares within families, in external support and in the attitudes of young carers towards caring. Adaptations included becoming used to the way life is, knowing how to care, balancing and trading off, rewarding care, and anticipating future adaptations. A model has been developed to offer an explanation of factors which influence young caring in families. These include family expectations about caring; who is available to care; the willingness and capability of young carers to help; and the degree of choice or obligation they experience. Formal and informal support services from outside the family, and environmental adaptations, can reduce the amount of family caregiving required, increase choice and contribute to balancing life for carers.     

Caregiving Youth Knowledge and Perceptions of Parental End-of-Life Wishes in Huntington’s Disease

Knowledge of patient end-of-life (EOL) wishes and discussions are vital for family caregivers, including children and youth who may be in caregiving roles (“young carers” or “caregiving youth”). However, little is known about caregiving youth awareness and perceptions of EOL issues. This study sought to explore caregiving youth knowledge of EOL wishes and their willingness for EOL discussions. Face-to-face interviews with 40 caregiving youth ages 10–20, who have a parent with Huntington’s disease (HD), provided information about their knowledge of the presence of their ill parent’s living will (LW) and durable power of attorney for health care (DPAHC), and willingness to talk with the parent about EOL choices and possibility of death. Less than one-half of the participants were aware of the parent’s LW or DPAHC. Content analysis revealed themes in reasons to want or not want EOL discussion with the parent: respect for the parent’s wishes, caregiving youths’ opinion not valued, and avoidance of EOL issues. Themes also included reasons to not want discussion with the parent about possibility of death: protecting the parent, parent in denial, parent not ready, and realization of the terminal outcome. Findings suggest HD patients and their caregiving youth need support for open EOL discussions, and could benefit from educational programs and support groups around EOL issues.     

Coping Strategies Among Mothers of Chronically Ill Children: A Case Study in Malaysia

ABSTRACT

 The purpose of this study is to identify the stresses and coping strategies of five mothers in caring for their chronically ill and disabled children. These mothers were receiving services from a nonprofit hospital in Malaysia. Through an in-depth case study design, the findings indicated that emotional stress caused high levels of depression, which decreased life satisfaction that led to poorer physical health. Issues explored included employment, noncooperation of family members, as well as factors related to the mother's individual abilities and how these factors might affect maternal caregiving. Recommendations for future research include identifying probable psychosocial stresses and other associated factors while emphasizing the importance of community-based programs that minimize these stresses.