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.     

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.     

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.     

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.     

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.     

老人的居住模式与子女的赡养行为

本文使用2006年全国社会综合调查的抽样数据,分析了老年人的居住模式、与子女的居住距离和儿女数量对子女赡养行为的影响。研究发现,老人的居住模式和居住距离并不明显影响子女给予的经济支持,但会影响子女在日常照料和情感慰藉方面给予的支持。有同住子女的父母可以得到子女更频繁的关心和照顾,而空巢家庭的父母从子女处获得的日常照料和经济支持则较少;子女居住得离父母越近,则越经常给予父母日常照料和情感慰藉。研究也发现,子女给予父母各方面照料的频繁程度不受兄弟姐妹数量的影响,独生子女并不比非独生子女更频繁地照顾父母。     

Transnational Caregiving for My Father: An Opportunity and a Blessing

Transnational caregiving can be daunting, yet it often brings out the strengths of the caregiver that he or she may not have been aware of. Thus, it is a wonderful opportunity to know oneself and use those strengths to become better in other areas of life. Transnational caregiving is also a blessing, in that one can still continue to provide care for a loved one by surmounting the barriers of geographical distance. To transform what often is a challenging situation into a blessing, a fresh eye is needed to seek different ways of fulfilling the needs of the loved one by focusing on one thing: How can the caregiver, in his or her individual capacity, make a difference in the quality of life of the family member? This article, while relating personal experience in caring for a parent, traverses these issues.     

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.     

Transitions in Caregiving: Evaluating a Person-Centered Approach to Supporting Family Caregivers in the Community

Caregivers of older adults provide a wide range of informal supports and services that enable older adults to continue living in the community. This study describes the use of a multicomponent intervention combined with a person-centered approach to assist caregivers of older adults in the community. Four hundred and eighteen caregiver and care recipient dyads participated in this study and their outcomes related to burden, depression, well-being, and care recipient functional status were evaluated. The findings suggest that adult child and spousal caregivers experience burden differently. Programs designed to support caregivers must tailor services to the unique needs of adult child and spousal caregivers.     

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.     

Eleven Tips to Lighten the Load: Optimizing the Blessing of Family Caregiving

This informal piece offers tips to family caregivers, based on my personal experience as a social work educator who temporarily moved in with my mother, who lives with dementia. Lessons learned are distilled into 11 tips that are respectfully offered to other social work educators who have the blessing and the challenge of caring for their older loved ones.     

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.     

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.     

Kinship Foster Care and Its Impact on Grandmother Caregivers

Summary

Kinship foster care programs are designed to address the needs of relatives, usually grandparents, who have taken in children who have been removed from their homes voluntarily, or following a substantiated report of neglect and/or abuse. The author reviews the history of kinship foster care nationally and examines related research. Reported are findings on a survey of kinship foster care programs nationwide and from qualitative interviews with nine grandmothers from New York City who were kinship foster care providers. Particular attention was paid in these surveys to the impact of kinship foster care on families caring for children with disabilities.     

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.     

Perceptions of Caregiving Role by Son's Caring for a Parent with Alzheimer's Disease

Abstract

In this qualitative study, 18 sons were interviewed about the factors that led them to assume the role of primary caregiver for a parent with progressive memory loss, such as Alzheimer's disease, as well as the personal challenge that they experienced in this role. The analysis demonstrated that sons experience a range of emotional reactions, personal and professional conflict, as well as learn about new roles and responsibilities as they attempt to access the needed services for their parent. Clinical recommendations for geriatric social workers are discussed.     

Understanding the Impact of Early-Life Trauma in Nursing Home Residents

Reactions to early life trauma can reemerge or be exacerbated in later life as coping resources and abilities are compromised by age-related changes and declines in health. For newly admitted nursing home residents, this can impact their receptiveness to assistance with care and elicit challenging reactions to environmental and situational triggers. Unfortunately, current assessment tools fail to account for reactions to early-life trauma. In this article, we review existing literature on early-life trauma and aging and introduce a hypothetical case to illustrate the importance of identifying nursing home residents with past trauma experiences.     

The Impact of Dementia:

Even though only one person in the marital relationship is likely to have the diagnosis, demenita really has two victims-the inflicted spouse and the caregiver. Research on both these 'victims' to date, has been largely restricted to furthering an understanding of the issues from a medical and stress/burden perspective. Only limited attention has been given to addressing the psychodynamic issues which evolve in reaction to the disease process. These issues however, have important implications on service needs and utilization and warrant exploration. Self psychology offers a promising framework for doing this. The purpose of this article is to examine the impact of dementia on the marital unit using this theoretical perspective.     

Caregiving and Our Inner Elder

Abstract

Dutch Priest Henri Nouwen, who died in 1996, has a large following of devoted readers. Though not formally a gerontologist, he wrote one small book, Aging: The Fulfillment of Life, full of remarkable insights into the meaning of growing old. Two approaches to caring for older people have special resonance. First, a person must appropriate his or her own aging, coming to grips with one's aging self. Secondly, one must allow the old person to enter into one's own life. Incorporating these two principles into service of elders gives it a spiritual value that goes beyond merely routine contact.     

Impact of Mid-Life Symptoms of Alcoholism on the Health and Wellbeing of Aging Parents of Adults with Disabilities

The study examined the effect of adult children’s disability on parents’ physical health in later life and the extent to which parents’ symptoms of alcoholism in mid-life moderates the link between children’s disability and later life parental health. Analyses are based on data from the Wisconsin Longitudinal Study. The analytic sample included parents of children with developmental disabilities (n = 145) or mental health problems (n = 200) and 2,432 parents of unaffected children. The results showed that the negative health consequences in later life of having a child with a developmental disability were greater for those who showed more symptoms of alcoholism in mid-life. However, symptoms of alcoholism in mid-life did not significantly moderate the impact of an adult child’s mental health problems on parents’ later life physical health. The findings suggest a potential area where gerontological social workers could intervene, given the negative impact of symptoms of alcoholism on the health of aging parents of children with a disability who may be significantly more susceptible to the negative health impacts of alcohol compared to their younger counterparts.