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.     

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.     

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.     

Experiences of Caregivers in a Dementia Simulation Program

Abstract

Objectives: Simulation-based training has been used in health care to increase clinical knowledge and skills and understanding the experience of others. There is a lack of research in exploring experiences of caregivers of people with dementia in a dementia simulation program and its potential benefits on caregivers. The purpose of this qualitative study was to explore experiences of caregivers of people with dementia who participated in a dementia simulation program, called Dementia Live?.

Methods: Fourteen caregivers were interviewed after participation in DL, and thematic analysis using NVivo 11 software was used.

Results: Three themes emerged, including: (i) the Dementia Live? as an eye-opening experience; (ii) the perceived benefits of the Dementia Live? on themselves; and (iii) recommendation of the Dementia Live? to other caregivers.

Conclusions: Dementia simulation programs such as the Dementia Live? may help caregivers to have more empathy, understand better about the behaviors and feelings of people with dementia, and to use strategies that can help when working with people with dementia. Further experimental research is needed to examine effectiveness of the dementia simulation program on caregivers and people with dementia.     

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.     

The Experience of Respite

Abstract

Interviews were conducted with 228 African American and white caregivers seeking respite care. The two groups were compared in terms of their own functioning, that of their relative and their needs for assistance at the time of their requests for respite. After six months of use, a comparison of the effects of the program on the two groups was made. The findings indicate that although patients were comparable at the time of application, white caregivers were more anxious, depressed, felt less competent, and experienced less gain that the African-American group. Needs for assistance and the effects of the program on the two groups also varied.     

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.     

Quality of Relationships Between Care Recipients and Their Primary Caregivers and Its Effect on Caregivers' Burden and Satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Barriers to Implementation of a Cooperative Model of Respite Care

This paper describes the conceptualization and field experience with a cooperative model of respite care for the frail elderly. Planning and program development were successfully completed yet implementation did not come to fruition. A survey of family caregivers, conducted to analyze obstacles to implementation, is instructive in identifying attitudinal barriers to use of a cooperative model for providing respite care for the frail elderly. The reasons for the program's failure and the lessons learned from it are examined and discussed. Implications are drawn for the planning and development of new intervention programs.     

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.     

Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

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.     

Long-Term Care of Older Adults in Malta: Influencing Factors and Their Social Impacts Amid The International Financial Crisis

ABSTRACT

This article explores recent changes in long-term care (LTC) for older persons in Malta, resulting from restructuring or other contextual factors related to the international financial crisis. The ageing population continues to grow, while traditional ways of providing care for the ageing population are progressively dwindling. Waiting lists for residential care have grown longer, although public-private partnerships have served to shorten these lists to some degree. Community care services are not keeping pace with need, and the frail elderly wishing to remain in their own homes often cannot do so without significant assistance from other sources.

Service recipients fall into four groups: those affording private residential care; those granted a government-subsidized residential bed; those cared for at home by relatives; and those similarly cared for by nonfamily live-in caregivers with (or without) input from family members. Existent data are reviewed and analyzed along with a focus group of 30 stakeholders to explore this topic further. Future recommendations are made and consequences are explored as caregiving options move away from the responsibility of the traditional family system toward greater pressure on state-provided care, use of expensive private care, and waiting lists to secure services.     

Eldercare and employed caregivers: a public/private responsibility?

The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP, 2004) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.     

Challenges and Successes in Developing an In-Home Respite Program

Demographic trends indicate that the increasing population of very frail elderly is putting enormous strains on caregiving families. Share-the-Care is an attempt by a community agency to provide in-home respite care by using trained neighborhood workers. The program is particularly unique in that it attempts to implement a business-oriented model of service due to the lack of public funds in Pennsylvania for this type of program. The authors hope this article, which describes the development of Share-the-Care, will be helpful to others who are considering offering in-home respite services.     

Meditation Program Enhances Self-efficacy and Resilience of Home-based Caregivers of Older Adults with Alzheimer’s: A Five-year Follow-up Study in Two South Asian Cities

This article reports a five-year follow-up study in two South Asian cities on the impact of a long-term meditation program in enhancing self-efficacy and resilience of home-based caregivers of older adults with Alzheimer’s. Intervention group caregivers (pre-test N = 96; post-test N = 78) reported lower perceived caregiving burden, higher self-efficacy in obtaining respite, responding to disruptive patient behaviors and controlling upsetting thoughts, and greater resilience, post-test, in comparison to the control group (pre-test N = 89; post-test N = 67). Gender and relationship with the patient were two strong moderators determining program impact. Caregiver women, spouses, Hindus, middle class, with college and higher education, homemakers, who attended at least 75% of the meditation lessons and regularly practiced at home (i.e. once weekly for at least 75% of the weeks) reported lower post-test perceived caregiving burden, higher self-efficacy, and resilience. Results of the Tobit regression models confirmed the meditation-related moderators and indicated that home practice was the strongest predictor of post-test scores. Overall the meditation program is an effective intervention, however, would need to be refined for specific caregiver subgroups such as men, children and children-in-law and those working outside the home, to suit their realities.     

Home modification among families with older adults with disability in Korea

Abstract

This study explores psychosocial factors related to the use of home modification among older adults with disabilities and their caregivers in Korea. Using in-depth interviews, this study elaborates specific socio-cognitive factors leading to home modification from the multiple perspectives of care recipients, family caregivers and home care helpers. The study findings are theoretically organised into four domains: structural factors, care recipients’ service needs, socio-cognitive factors, and enabling resources. Practice and policy implications are discussed in the context of underdeveloped housing policies for ageing-in-place in Korea.