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.     

Exploring how workplace and social policies relate to caregivers’ financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016–17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers’ employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients’ financial strain and the caregiver’s reduction or ceasing of work. Medicare may be protective to minimize caregivers’ need to reduce or cease work. Implications for caregivers’ ability to stay engaged in the workforce and prepare for their own retirement are explored.     

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.     

Service Barriers of Chinese Family Caregivers in Canada

ABSTRACT

Family caregiving is a stressful process, especially when the complexity of being an immigrant or ethnic minority is added. This paper examined service barriers experienced by Chinese immigrant family caregivers in Canada and the predictors of different types of barriers. Principle component analysis was performed with the barriers reported loading onto cultural barriers, administrative problems, circumstantial challenges, perceived negative quality of services, and personal attitudes. Multiple regression analysis was used to identify the role of the culture-related factors in predicting service barriers, controlling for socio-demographic status of the caregivers'. The results show that financial factors significantly predicted the number and types of barriers reported by the caregivers. Culture-related factors were significant in predicting the total number of access barriers and the different types of barriers experienced by the family caregivers. The findings indicate the importance of culturally sensitive support for family caregivers in order to reduce the access barriers.     

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.     

A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

Residential Respite Care: The Caregiver's Last Resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

Resilience among older caregivers in rural Namibia: The role of financial status,social support and health

Background: Namibia has one of the highest human immunodeficiency virus (HIV) prevalence rates and one of the highest rates of orphanhood in the world, and older caregivers provide much of the care to Namibians living with HIV and acquired immune deficiency syndrome (AIDS) (UNAIDS, 2014). In this study, the authors explore how financial status, social support, and health were related to the resilience of caregivers caring for people affected by HIV and AIDS in rural northern Namibia, Africa. Method: Data were collected through a structured interview from (N = 147) caregivers from the Zambezi region. Results: Findings from this study show that employment and physical health were significantly associated with increased resilience in older caregivers. Discussion: Our findings point to the need for employment assistance and health services to improve the resilience of caregivers caring for people living with HIV and AIDS. We conclude that there is a need for more vigorous concerted efforts from public and private sector practitioners and policy makers to create more sustained formal employment opportunities and intervention programs aimed at improving the overall health of older HIV caregivers, especially those residing in rural HIV endemic communities in developing countries.     

The Influence of Service Factors on Spousal Caregivers' Perceptions of Community Services

The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home.

This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.     

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.     

Residential respite care: the caregiver's last resort

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.     

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.     

Housing needs of grandparent caregivers: grandparent,youth, and professional perspectives

ABSTRACT

This qualitative study examined the housing needs of grandparent caregivers and the youth in their care in New York State. Nine focus groups were conducted separately with grandparent caregivers (n = 46) and youth (n = 34), and interviews were conducted with key informants (n = 17) knowledgeable about housing and issues. Housing needs of greatest priority, contextual differences, and potential barriers to securing housing and social services were identified. Key themes indicated that housing challenges stem from four problem domains: the experience of poverty, which creates affordability challenges that trap grandparent caregivers and their grandchildren in unsuitable homes and unsafe neighborhoods; physical challenges of aging grandparents, which require specific housing accommodations; changes in family composition when taking in grandchildren, which necessitate moving out of prior accommodations or changing housing plans due to regulatory issues; and obstacles to obtaining needed benefits, including a lack of information, burdensome application processes, ineligibility, and a shortage of resources. These issues are discussed with implications for policy and practice.     

Veterans’ Use of Programs and Services as They Transition to Civilian Life: Baseline Assessment for the Veteran Metrics Initiative

Abstract

A substantial minority of veterans struggle as they reintegrate into civilian life, reporting problems with vocational attainment, legal/financial/housing challenges, physical and mental health conditions, and social/interpersonal issues. While there are thousands of programs and services offered to veterans, little is known about which ones they use. In the current exploratory study, veterans separated from active duty in the prior three-months (48,965) were invited to complete a survey. Two primary questions were addressed: What programs/services did veterans use to assist in their reintegration to civilian life? What specific components/attributes of those programs did veterans report using? A total of 9566 veterans completed the survey. Approximately, two-thirds of veterans used at least one program to enhance their well-being, while one-third reported using multiple programs across multiple domains. Veterans primarily sought assistance for employment and educational advancement. Fewer veterans sought assistance for legal/financial/housing, health, and social functioning challenges. Social service providers and policy makers should be aware of the resources veterans use as they reintegrate into civilian life. Future research should examine factors that predict the use and nonuse of veteran reintegration programs, how use changes over time, and what factors predict program/service use, particularly among veterans at risk for poor transition outcomes.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Identities in Transition: Women Caregivers in Bereavement

Population aging and longevity due to medical advances over the past few decades have meant that the approximately 44 million caregivers in the United States and eight million caregivers in Canada must provide more intensive levels of care and for longer periods of time. Consequently, caregivers are often profoundly affected by their caregiving role in emotional, psychological, physical, and financial ways. Thirty years of research on this population have helped to create a caregiver profile and identify the significant challenges for caregivers. One area explored to a much lesser extent is the postcaregiving period, when the caregiver transitions into a period of bereavement. This period can be particularly challenging for caregivers given the commitment inherent in the caregiving process. Research has shown that the emotional reactions of caregivers as well as practical challenges do not end with the death of the care recipient. In fact, complex realities, tensions, and responses continue well after the death into the postcaregiving period. This study of bereaved women caregivers explored their lived experiences in the postcaregiving phase. One central theme emerged and suggested that the experience of caregiving had an effect on the caregivers’ identities, which then influenced their bereavement processes and experiences.     

Unmet home care service needs of rural older adults with Alzheimer's disease: a perspective of informal caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

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.