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.     

Parallel Service Delivery in Community Long-Term Care

Using data collected in a state-wide study of adult day care (ADC) in Pennsylvania and indices of technicality, routinization and service provision, this study examined the interventive relationship between ADC program staff (n = 59) and participant caregivers, (n = 67). The analysis found the relationship between formal and informal networks to be one of parallel service delivery rather than complementary roles with caregivers providing a wider range of services more frequently than program staff (t = 6.91, p < 601).     

Family-Centered Care

Abstract

Recent trends in medicine reflect an attempt to be more patient-centered and while this is progress from the disease- or provider-focused model familiar in healthcare, the experiences and contributions of family as caregivers continue to be overlooked in some settings. The family-centered care model, developed most notably in pediatrics, but emerging in HIV, cancer, and aging, is presented as a resource to increase family involvement at the end of life. In this paper, family-centered care is defined, caregiving trends including support needs of formal and informal caregivers are discussed, and barriers to family-centered services are identified. Reintroducing family into the focus of care at the end of life is the primary goal of this paper. The family-centered model of care offers an appropriate framework for understanding the value of family in end-of-life care and fits well with social work perspectives that understand individuals in the context of their family system and greater environment.     

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.     

Establishing Empirically-Informed Practice With Caregivers: Findings From the CARES Program

There is increasing interest in delivering efficacious interventions to caregivers. This study reports on the processes and findings from a modified approach of the Wraparound System of Care. The practice model is implemented over 4 phases and is based on 3 theoretical constructs and 10 principles. The evaluation utilized treatment fidelity measures and employed a quasi-experimental pretest/posttest design to examine caregiver outcomes (N = 120). Findings suggest significant improvement among caregivers’ self-reported health, life satisfaction, well-being, and quality of life, as well as a reduction in caregiver risk and burden. Delineation of the processes used in the model are presented.     

Intention to Leave the Profession: Welfare Social Workers Compared to Health Care and Community Social Workers in Israel

ABSTRACT

This study aimed to compare specific work related-factors (personal factor: length of work experience; structural factors: personal subjection to violence and fear of being subjected to violence; and psychological factors: professional quality of life—compassion satisfaction, burnout, and compassion fatigue) between welfare social workers (SWs) (n = 200) and health care and community SWs (n = 173). Furthermore, since the issue of turnover among SWs has important implications for the provision and programming of social services, the study also aimed to assess the relationship between these factors and SW intention to leave the profession. For the purpose of this study, online questionnaires were distributed to SWs working at social agencies and services. The findings suggest that the two categories of SWs showed a similarity with regard to the association between the personal and structural factors and intention to leave the profession. However, with regard to the psychological factors, the components of professional quality of life were found to operate differently in each category of SWs. It is suggested that future research examine other work-related factors and explore the intention to leave the profession among other social work specializations and employment sectors.     

'I made some mistakes . . . but I love them dearly' the views of parents of children in informal kinship care

In-depth semi-structured interviews with 30 parents of children living with relatives in informal kinship care arrangements revealed the parents' views of the reasons for the informal kinship care arrangements, quality of their relationships with the children and their caregivers, their current and future roles in their children's lives, feelings experienced when with and away from the children, positive and negative aspects of kinship care, future goals and dreams for their children, and their assessments of their own strengths and challenges. Results of these interviews suggest several implications for social work practice and research.     

Impact of a multicomponent support services program on informal caregivers of adults aging with disabilities

A multicomponent support services program was implemented for veterans aging with disabilities and their informal caregivers (n = 42 dyads). Caregiver outcomes (satisfaction, physical and mental health status, burden, and benefits) were evaluated before and after program use. Caregivers reported significant improvements in mental health post-program. Caregivers who provided care to individuals with impaired physical health experienced meaningful improvements in burden after the support services were rendered. Supporting caregiver health status through such programs is vital to preserve noninstitutional long-term care for persons aging with disabilities, particularly when care is provided over many years to an individual with physical impairments.     

Caregiver Burden: A Comparison Between Elderly Women as Primary and Secondary Caregivers for Their Spouses

The overall purpose of this research was to examine the burdens of caregiving on elderly women who serve as primary and secondary caregivers for their impaired spouses. Fifty women 60 years and older identified as spousal caregivers participated in an in-person structured interview. Data were analyzed to compare primary caregivers (caregivers living with their spouses) and secondary caregivers (caregivers of institutionalized spouses) on the following factors: loneliness, depression, time constraints, perceived health status, financial status and perceived life satisfaction. Findings suggest that both groups of women are equally susceptible to the burdens inherent in caregiving. Time constraints were identified as the one major difference between caregiving groups. In addition, the results indicate that spousal caregivers, both primary and secondary, are an at-risk population and are especially vulnerable to loneliness, mild depression, financial worries and low life satisfaction.     

Creating a better kinship environment for children in Ghana: Lessons from young people with informal kinship care experience

Traditionally, the involvement of the extended family in nurturing children is seen as an essential cultural practice in most communities in Ghana. Though not formally regulated, often in the absence of birth parents, kin and kith continue to be involved in the care of children to promote family relations and culture. Yet there is little empirical evidence on how to improve the well‐being and safety of children in informal kinship care in Ghana. Thus, this study reports findings from in‐depth interviews with 15 young people, 18 to 23 years, from Banda—an ethnic group where informal kinship care is an accepted cultural practice. Data from the interviews were subjected to the constructivist grounded theory analysis. Adequate income for provision of basic needs, education and training, and supervision emerged as useful measures to promote the safety and well‐being of children in kinship care. It was recommended that informal kinship caregivers must be registered with the Department of Social Welfare to enable them access support and training. Further, social workers should create awareness among kinship caregivers in Ghana about their availability to provide counselling services for caregivers facing challenges.     

The association of caregivers’ and children’s characteristics with children’s social preference and being a class leader in China

Children’s social status in China includes both informal (e.g., social preference) and formal (e.g., class leader) statuses. This study examines the associations among caregivers’ characteristics, children’s characteristics, children’s social preference, and being a class leader by using multiple sources of information (caregiver reports, self‐ratings, sociometric methods, and achievement data). The participants were 1,926 fourth‐ to ninth‐ graders (M_age = 12.7; 49.7% males) and their primary caregivers. The caregivers’ characteristics were found to be related more closely to class leader than to social preference. Both higher children’s interpersonal character and academic achievement were associated with higher social preference and class leader; however, academic achievement showed stronger relationships with both types of status than interpersonal character. The children’s characteristics mediated the associations between caregivers’ characteristics and children’s social statuses. The grade difference test showed that interpersonal character had a stronger association with social preference, and academic achievement had a stronger association with class leader in secondary school than in primary school. The results suggest that children’s characteristics (especially academic achievement) are strongly related to Chinese children’s social preference and being a class leader. In addition, the potential role of caregivers’ characteristics and the influence of child age are noteworthy.     

Self-Esteem,Life Satisfaction,and Positive Future Perception among at-Risk and Comparison Group Participants in National Civic Service

ABSTRACT

This study focuses on a program designed to engage at-risk youth in the National Civic Service (NCS) in Israel with the goal of enabling them to better integrate into normative adult lives. This exploratory study employed a cross-sectional design and compared groups of at-risk female volunteers (N = 426) with comparison groups of not at-risk participants in the NCS (N = 456). For both of them, three sub-groups were examined at different stages of their service: the beginning, near the end, and about one year after finishing the service. In both the at-risk and comparison groups, self-esteem was higher among the alumni compared to those at earlier stages of the program. Life satisfaction was generally much lower among the at-risk group, but after service completion, both groups reported higher life satisfaction. There were no significant differences between the groups in their future perceptions. The implications of these findings for policy and practice are discussed.     

Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.     

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.     

Allowing Family to be Family: End-of-Life Care in Veterans Affairs Medical Foster Homes

The Medical Foster Home program is a unique long-term care program coordinated by the Veterans Health Administration. The program pairs Veterans with private, 24-hour a day community-based caregivers who often care for Veterans until the end of life. This qualitative study explored the experiences of care coordination for Medical Foster Home Veterans at the end of life with eight Veterans’ family members, five Medical Foster Home caregivers, and seven Veterans Health Administration Home-Based Primary Care team members. A case study, qualitative content analysis identified these themes addressing care coordination and impact of the Medical Foster Home model on those involved: (a) Medical Foster Home program supports Veterans’ families; (b) Medical Foster Home program supports the caregiver as family; (c) Veterans’ needs are met socially and culturally at the end of life; and (d) the changing needs of Veterans, families, and caregivers at Veterans’ end of life are addressed. Insights into how to best support Medical Foster Home caregivers caring for Veterans at the end of life were gained including the need for more and better respite options and how caregivers are compensated in the month of the Veteran’s death, as well as suggestions to navigate end-of-life care coordination with multiple stakeholders involved.     

Life Aspirations: Their Impact on Family and Work Conflict and Life Satisfaction in Hong Kong and Taiwan

Family and work conflict (F/WC) has gained prominence in developed economies in Asia as individuals are faced with the increased demands from work and families that are still considered very important. Hong Kong and Taiwan best illustrate the changing social and economic conditions that have given rise to this conflict. In these two societies, people have demonstrated a strong emphasis on work, even when it entails the sacrifice of family tasks and duties. An array of informal and formal services have been mobilized to allow people to fulfill their duties to work and family. Based on surveys conducted in Hong Kong and Taiwan in late 2009, this paper investigated F/WC and life satisfaction. Specifically, it examined changing life aspirations, both material and non‐material, as predictors of F/WC and life satisfaction. The surveys found that respondents had high aspirations for both their family and their work, and for both material and non‐material assets, and that they experienced high‐level F/WC. Based on the statistical analysis, we argue that minimizing the interference of family life on work and emphasizing non‐material life aspirations could promote better life satisfaction.     

Grandparents raising grandchildren in Australia: exploring psychological health and grandparents' experience of providing kinship care

This study explores relationships between the psychological health of grandparents raising grandchildren and grandchildren's social, emotional and behavioural issues. Fifty-two grandparents raising grandchildren (Caregiving) and an age-matched sample (N = 45) of grandparents who were not the primary caregivers of their grandchildren (Non-caregiving) participated in the study. All participants completed the Depression, Anxiety and Stress Scale Questionnaire (DASS21), and grandparents in the caregiving group completed the Caregiver form of the Strengths and Difficulties Questionnaire (SDQ) and a semi-structured telephone interview. Grandparents in the Caregiving group scored higher on all three DASS21 subscales than the Non-caregiving group. Statistically significant associations were found between grandparents' DASS21 scores and grandchildren's SDQ scores. Qualitative analyses of interviews were conducted describing a priori themes of conflict, challenges and rewards, and emergent themes of no choice/option, duty and pride. Clinical implications of this study point to the importance of providing increased levels of psychological support for grandparents and grandchildren. Longitudinal studies are needed.     

Life Skills Training with Mothers of Handicapped Children

This paper describes a life skills training intervention with 230 mothers of children with a variety of developmental disabilities. The study's design evaluated the effects of a skills-building method developed to improve coping and social support networks of mothers of handicapped children. In groups of 10-12, mothers of handicapped children participated in one of two intervention groups: a skills-building intervention or a comparison treatment intervention using traditional counseling methods. At posttest assessment participants in the skills-building sessions demonstrated improved coping and communication skills, greater satisfaction with social support networks, and a reduction in depression and stress levels.