Long-distance Caregivers Research Articles

Recommendations for psychosocial support for long-distance caregivers of terminally ill patients

ContextThe provision of appropriate psychosocial support has a significant impact on quality of life for informal caregivers of terminally ill patients. Long-distance caregivers have specific wishes and needs for psychosocial support. ObjectivesTo date, no formal support measures for long-distance caregivers of terminally ill patients have been developed in Germany. The national Delphi study aimed at systematically and empirically generating recommendations for psychosocial support measures, tailored to this population. MethodsRecommendations were formulated on the basis of qualitative interviews exploring the support experiences and unmet needs of long-distance caregivers of terminally ill patients. Experts from hospice and palliative care rated the relevance and feasibility of 10 recommendations using two 4-point Likert-type scales. Additionally, suggestions for improvement were captured via free text fields. Recommendations were deemed to have achieved consensus when ≥ 80% of participants indicated “strongly agree” or “somewhat agree” for both relevance and feasibility. ResultsA total of 26 experts completed two Delphi rounds. Following the first round, 8 of the 10 recommendations were revised according to participant feedback. After the second round, consensus was achieved for 5 of these revised recommendations. Three recommendations were rejected, as participants regarded them unfeasible due to a perceived lack of personnel resources. ConclusionThe consensus-based recommendations represent the first empirically grounded guidelines in Germany aimed at addressing the psychosocial needs of long-distance caregivers of terminally ill patients. The recommendations seek to raise awareness among both professional and voluntary workers regarding the specific support requirements of this understudied population.

"Has Anyone Been There Now?": An Interview Study on the Support Experiences and Unmet Needs of Informal Long-Distance Caregivers for Patients at the End of Life.

In the German context, research is lacking on the support experiences and unmet needs of informal caregivers in end-of-life situations who are geographically distanced from their ill relatives. The current study aimed at deepening our understanding of the specific end-of-life support experiences and needs of informal long-distance caregivers. The study employed an explorative design, applying qualitative interviews. Thirty-three long-distance family caregivers participated in the study (December 2021-October 2022). The results showed that long-distance caregivers relied on close exchange and cooperation with local family and non-kin caregivers. They also expressed the wish to be considered more proactively by professional caregivers, with respect to their specific geographic situations. They further recommended that local care networks be built to support patients. Hypotheses were deduced from long-distance caregivers' recommendations for support interventions. The results may be useful for the development of an online information resource for long-distance caregivers in end-of-life situations.

Experiences and support needs of informal long-distance caregivers at the end of life: a scoping review

ObjectivesThere is a lack of research on the specific experiences and needs of geographically distant kin caregivers in end-of-life situations. Clinicians and researchers would benefit from a systematic overview. The...

Long-distance caregiving at the end of life: a protocol for an exploratory qualitative study in Germany

BackgroundOf the approximately 4.7 million people in Germany caring for a relative, many live at a geographical distance from their loved one. The provision of remote care to a terminally ill patient is associated with specific challenges and burdens. In the German context, research is lacking on the specific experiences and needs of caregivers in end-of-life situations who are geographically distanced from their relative. Thus, the overarching goal of the proposed study is to detail the specifics of long-distance caregiving at the end of life in Germany, determining the role played by physical distance in shaping end-of-life caregiving and identifying the needs of long-distance caregivers in this situation.MethodsThe exploratory qualitative study will be guided by an inductive logic, drawing on one-time semi-structured interviews. To uncover the multiplicity of caregiving experiences, long-distance caregivers of both patients receiving early palliative care and patients at a very advanced stage of disease will be included. The study will be divided into five phases: (1) preparation and pretest, (2) data collection and primary analysis, (3) data analysis and interpretation, (4) advisory board workshop and (5) conclusions and recommendations.DiscussionThe study will aim at generating valuable insight regarding the experiences and needs of family caregivers of end-of-life patients. This is particularly relevant, given that families are becoming increasingly geographically dispersed. As this trend continues, it will challenge traditional models of family care and shed light on novel caregiving issues that will need to be addressed through social and health policy.Trial registrationThe study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00024164; date of registration: January 25, 2021), and is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

Long-Distance Caregivers’ Use Of Supportive Services

ABSTRACT While long-distance caregiving has received increased attention as a unique care experience, prior research has not explored the supportive services used by long-distance caregivers (LDCs) and the factors that predict their supportive service utilization. Using the Andersen Model of Health Care Utilization, the current study sought to: 1) describe the types of supportive services LDCs used and the frequency of usage and 2) identify predisposing, enabling, and need-related factors associated with supportive service use in a sample of LDCs. Participants were recruited from aging services organizations, a national participant registry, professional networks, participant referrals, and an existing pool of research participants. The sample included 304 LDCs who reported on the use of nine supportive services and completed measures assessing depression, caregiver burden, self-rated health, sociodemographic characteristics, and the condition of the care recipient (CR). Fifty percent of LDCs reported no service use. Multiple hierarchical regression analyses demonstrated that younger age, higher caregiver burden, greater depressive symptoms, more time spent helping the CR, and worse CR functional status were significantly related to greater total supportive service use by LDCs. The current study contributes to our understanding of the factors associated with LDCs’ supportive service utilization, highlighting the importance of need-related factors.

Caring From Afar: Long-Distance Caregivers’ Use of Supportive Services for Themselves

Although long distance caregivers (LDCs) are starting to be recognized as a subgroup of care partners experiencing unique challenges and stresses, it is unknown 1) what types of supportive services LDCs use for themselves and 2) what factors are associated with supportive service use in this understudied caregiving population. In our sample of 304 LDCs (Mage=56.9), the most frequently utilized service was video phone/webcam systems to monitor the care recipient (CR). Guided by Andersen’s Model of Health Care Utilization and using multiple hierarchical regression analysis, younger age of the LDC (a predisposing factor) and need-related characteristics (greater caregiving burden and depressive symptoms, more time spent helping the CR, and worse CR functional status) were associated with greater use of supportive services. Enabling factors were not associated with service use. These study findings can help inform how to engage LDCs in supportive service utilization.

Disrupting the Status Quo: The New Normal of Family Caregivers’ Service Use

Family caregivers are essential partners in chronic disease management for older adults. However, being a family caregiver can have negative mental and physical health consequences, making it important for some caregivers to rely on supportive services, either for themselves (e.g. support groups) or to get help with caregiving tasks (e.g. home care). Supportive service use by family caregivers is well documented; yet, this research has often not included specific subgroups of caregivers (e.g. the racially/ethnically, or geographically diverse). Hence, the purpose of this symposium is to share new findings from research on supportive service use in understudied caregiving populations. First, Dr. Cimarolli presents findings from a study on the types of supportive services long-distance caregivers use for themselves and the factors associated with supportive service use in this caregiver population. Then, Dr. Wyman reports findings from a survey on the use of home and community-based resources by family caregivers in a Native American community. Dr. Wright will share the results of a systematic review of self-care interventions designed for caregivers of African Americans living with dementia. Finally, Dr. Mavandadi presents the results of a study examining the effectiveness of a telephone-based, collaborative dementia care program for improving outcomes in caregivers of military veterans living with dementia. Dr. Karen Rose will discuss the implications of each of these study findings for the development and evaluation of supportive interventions for these specialized family caregiver groups.

Choosing and Managing Aged Care Services from Afar: What Matters to Australian Long-Distance Care Givers.

This research aims to identify the factors that influence caregivers’ decisions about the aged care providers they select for their elder relatives when caring from a distance and what they value once they have engaged a service. Adult long-distance carers for older relatives living within Australia were purposively sampled and they participated in audio-recorded interviews. A thematic analysis was employed to investigate the data. A sample of 13 participants enabled data saturation with no new major themes identified in the final three interviews. Participants were 50 to 65 years (Mean = 59.8) and mostly (77%) female. Four themes emerged relating to selection of care providers: (1) availability of care, (2) financial arrangements, (3) proximity and location, and (4) reputation of care provider. Five themes detailed valued qualities of care: (1) vigilant monitoring and responsivity, (2) communication with family, (3) flexibility and proactiveness of care, (4) staffing, and (5) access to appropriate and holistic care to maintain wellbeing. Long-distance caregivers face barriers in selecting and managing aged care services from afar within a complex Australian aged care system. They strongly value regular, proactive communication about the wellbeing of their relatives and may be particular beneficiaries of communication and assistive monitoring technologies.

Use of Home Care Services Reduces Care-Related Strain in Long-Distance Caregivers.

Prior work examining the role of older adult home care service use in alleviating strain in family caregivers has resulted in contradictory findings. However, prior research has been entirely limited to caregivers who live within close geographical proximity to their care recipients. Long-distance caregivers are a unique caregiving subgroup that has remained understudied. Guided by the stress process model, this study examined if the association between primary caregiving stressors (the care recipient's functional and cognitive status) and secondary stressors (perceived role strains related to work and to other family responsibilities) in long-distance caregivers was mediated by the care recipient's utilization of home care services. The sample included 166 long-distance caregivers in the United States who provide and manage care to a community-dwelling care recipient living 2 or more hours away. Participants reported on their care recipient's cognitive and functional status, perceived interference of caregiving with work and other family responsibilities, and the care recipient's use of home care services. Path analyses show that home care use by the care recipient fully mediated the association between care recipients' functional impairment and caregiver strains (work and family). Furthermore, home care use partially mediated the effects of care recipients' cognitive impairment on caregiver strains. Results indicate that the care recipient's home care service utilization may serve as a protective factor against care-related strain in long-distance caregivers. These findings can be used to inform intervention efforts focused on a family-centered care approach that can be specifically tailored to long-distance caregivers.

Geographic distance and social isolation among family care-givers providing care to older adults in Canada

AbstractFamily care-giving is associated with social isolation, which can lead to adverse health and wellbeing outcomes among family care-givers. The role of geographic distance in care-giver social isolation (CSI) is unclear and has received mixed research findings. Framed by the Ecological Model of Caregiver Isolation, this study examined the relationship between geographic distance and CSI, including the interaction between geographic distance and care-giving intensity for CSI. Linear regression and analysis of covariance were used to test these hypotheses using a sub-set of family care-givers from the 2012 Canadian General Social Survey (N = 2,881). Care-givers living a short distance from receivers reported lower levels of social isolation than co-resident, moderate-distance and long-distance care-givers. Being involved in higher-intensity care-giving as the primary care-giver, undertaking more care-giving tasks and providing care more frequently resulted in higher CSI scores. Long- and moderate-distance care-givers reported greater CSI than co-resident and short-distance care-givers only when providing higher-intensity care-giving. Employing a granulated measure of geographic distance positioned within an ecological framework facilitates an understanding of the nuanced association between geographic proximity and CSI. Furthermore, the identified interaction effects between geographic distance and care-giving intensity on CSI further explicate the complexity of care-giving experiences. The findings are relevant for programmes supporting care-givers in different contexts, especially distance care-givers.

Use of Home Care Services Reduces Caregiving-Related Strain in Long-Distance Caregivers

Long-distance caregivers (LDCs) comprise a growing yet relatively understudied segment of the caregiving population. The current study (N=166) investigated the mediating role of home care hours on the association between primary caregiving stressors (care recipient [CR] levels of cognitive and functional impairment) and LDCs’ perceived strain (perceived interference of caregiving with other family responsibilities and work). Results from path analyses showed that home care hours fully mediated the negative effect of CRs’ functional impairment on family interference and the negative effect of CRs’ cognitive impairment on work interference. Further, the negative effect of CRs’ cognitive impairment on family interference was partially mediated by home care hours. Thus, a mediating role of home care service hours in the associations between objective stressors and LDC strain was established for both family and work domains. Findings highlight the potential of home care services in alleviating strain in LDCs of community-dwelling CRs.

Caregiving Together: The Relationship Between Paid and Family Caregivers in the Home

Family caregivers provide the lion’s share of care that allows older adults with functional impairment to remain living at home. Yet as care needs grow, many older adults and their families turn to paid caregivers (e.g. home health aides, personal care attendants, and other direct care workers) to provide additional support. While evidence suggests that paid and family caregivers work together to provide increasingly complex care at home, research that describes this important collaboration is limited. In this symposium, we present innovative and interdisciplinary research that highlights the overlap between family caregiving and long-term care workforce research. We begin by presenting two studies that focus on populations where paid caregivers may have outsized impact on family caregivers: Reckrey et al report that receipt of 20+ hours of paid caregiving per week was associated with less caregiver strain among family caregivers of those with advanced dementia and Falzarano et al report that home care hours mediated the association between caregiver stressors and negative effects of caregiving among long-distance family caregivers. Franzosa et al then describe home health aides’ perceptions of relationship dynamics as aides and family members negotiate care tasks in the home. Finally, Gallopyn et al explore scenarios where paid and family caregiver roles blur (e.g., family caregivers receiving payment for providing care, paid caregivers with extensive experience as family caregivers). Taken together, these studies describe critical ways paid and family caregiver experiences are intertwined and highlight the importance of ongoing research about this collaboration.

Capturing the Spatial Relatedness of Long-Distance Caregiving: A Mixed-Methods Approach.

Long-distance caregiving (LDC) is an issue of growing importance in the context of assessing the future of elder care and the maintenance of health and well-being of both the cared-for persons and the long-distance caregivers. Uncertainty in the international discussion relates to the relevance of spatially related aspects referring to the burdens of the long-distance caregiver and their (longer-term) willingness and ability to provide care for their elderly relatives. This paper is the result of a first attempt to operationalize and comprehensively analyze the spatial relatedness of long-distance caregiving against the background of the international literature by combining a longitudinal single case study of long-distance caregiving person and semantic hierarchies. In the cooperation of spatial sciences and geoinformatics an analysis grid based on a graph-theoretical model was developed. The elaborated conceptual framework should stimulate a more detailed and precise interdisciplinary discussion on the spatial relatedness of long-distance caregiving and, thus, is open for further refinement in order to become a decision-support tool for policy-makers responsible for social and elder care and health promotion. Moreover, it may serve as a starting point for the development of a method for the numerical determination of the long-distance caregivers on different spatial reference scales.

Long-Distance Caregivers: What are Their Experiences with Formal Care Providers?

ABSTRACT Objectives Extensive literature has documented the experiences of informal caregivers and their interactions with formal care providers, yet this research is almost entirely limited to caregivers who live near their care-recipients. This study aims to describe long-distance caregivers’ (LDC) experiences (e.g., satisfaction and challenges) with formal care providers. Subgroup differences were examined based on the care-recipient’s (CR) dementia status and residential setting (community versus residential care). Methods Data were collected from 296 LDCs (M age = 56.64, SD = 12.40) categorized into four subgroups based on CR dementia status and residential setting. Participants rated their overall satisfaction, satisfaction with communication and information, and described challenges faced in their interactions with formal care providers. Results Challenges related to formal care providers were significantly greater and satisfaction significantly lower among LDCs of CRs in residential care, irrespective of dementia status, when compared to LDCs of CRs in the community. Conclusions This study provides insights into the experiences of a growing segment of the caregiver population managing care from a distance, specifically in their interactions with formal care providers. Clinical Implications The results of this study point to the possible necessity for the development of novel interventions to improve and enhance communication and collaboration between FCPs and informal caregivers.

LONG-DISTANCE CAREGIVING: MENTAL HEALTH CONSEQUENCES AND USE OF RESOURCES

Long-distance caregiving (LDC) is a growing phenomenon and common experience for caregivers of frail older adults. In fact, 11% of family caregivers in the US live more than two hours distance from the care recipient (CR). Unfortunately, there is a paucity of research on unique experiences of LDCs and the impact of LDC on the mental health of LDCs. This symposium presents findings from the NIA funded Fordham Long-Distance Caregiving Study (R21AG050018) analyzing data of 304 long-distance caregivers (LDCs). The overall study goal was to better understand how LDCs deal with the structural constraint of distance, and to examine LDC consequences and resources. First, Horowitz presents the study background, characteristics of the sample, and provides a description of the unique experiences of LDCs. Next, Cimarolli concentrates on the Sociocultural Stress Process Model applied to LDC. Her study tested the impact of LDC on mental health and investigated resources (e.g., coping skills) which could mediate the association between caregiving stressors and mental health outcomes. The third paper (Falzarano) presents data related to satisfaction with formal service providers for four subgroups of LDCs based on CR residence and dementia status. Finally, Jimenez focuses on the characteristics of LDCs’ network of other informal caregivers (IC) providing assistance to the CR and factors are associated with more help received from other ICs. Dr. Pruchno, an expert in caregiving research, will discuss study findings. The symposium provides insights into unique experiences of LDCs, the impact of LDC on mental health, and resource use among LDCs.

2013 Alzheimer's disease facts and figures

This report provides information to increase understanding of the public health impact of Alzheimer's disease (AD), including incidence and prevalence, mortality rates, health expenditures and costs of care, and effect on caregivers and society in general. It also explores the roles and unique challenges of long-distance caregivers, as well as interventions that target those challenges. An estimated 5.2 million Americans have AD. Approximately 200,000 people younger than 65 years with AD comprise the younger onset AD population; 5 million comprise the older onset AD population. Throughout the coming decades, the baby boom generation is projected to add about 10 million to the total number of people in the United States with AD. Today, someone in America develops AD every 68 seconds. By 2050, one new case of AD is expected to develop every 33 seconds, or nearly a million new cases per year, and the total estimated prevalence is expected to be 13.8 million. AD is the sixth leading cause of death in the United States and the fifth leading cause of death in Americans age 65 years or older. Between 2000 and 2010, the proportion of deaths resulting from heart disease, stroke, and prostate cancer decreased 16%, 23%, and 8%, respectively, whereas the proportion resulting from AD increased 68%. The number of deaths from AD as determined by official death certificates (83,494 in 2010) likely underrepresents the number of AD-related deaths in the United States. A projected 450,000 older Americans with AD will die in 2013, and a large proportion will die as a result of complications of AD. In 2012, more than 15 million family members and other unpaid caregivers provided an estimated 17.5 billion hours of care to people with AD and other dementias, a contribution valued at more than $216 billion. Medicare payments for services to beneficiaries age 65 years and older with AD and other dementias are three times as great as payments for beneficiaries without these conditions, and Medicaid payments are 19 times as great. Total payments in 2013 for health care, long-term care, and hospice services for people age 65 years and older with dementia are expected to be $203 billion (not including the contributions of unpaid caregivers). An estimated 2.3 million caregivers of people with AD and other dementias live at least 1 hour away from the care recipient. These “long-distance caregivers” face unique challenges, including difficulty in assessing the care recipient's true health condition and needs, high rates of family disagreement regarding caregiving decisions, and high out-of-pocket expenses for costs related to caregiving. Out-of-pocket costs for long-distance caregivers are almost twice as high as for local caregivers.

Long-Distance Caregiving: A Systematic Review of the Literature

There are an estimated 5–7 million long-distance caregivers (LDCs) in the United States, but little is known about this growing population. This study reviewed the literature on LDCs and examined 16 identified studies. Although studies defined LDCs differently, a composite description of who LDCs are and what they do is presented. LDCs make substantial contributions in terms of physical, financial, and social support. Distance complicates communication about care recipients' health and care needs, as well as the types of care that can be provided. Related to this, geographic separation can exacerbate care-related stressors. Implications for future research were also identified.

Interpersonal Conflict and Health Perceptions in Long-Distance Caregiving Relationships

With job markets expanding globally and life expectancy continually increasing, more demands are being placed on distant relatives to provide care for their aging family members, creating a health care situation known as long-distance caregiving. An online survey explored the relations between negative health perceptions by long-distance caregivers and conflict frequency and conflict strategy usage. The authors observed positive significant relations between distant caregiver negative health perceptions and conflict frequency and usage of the distributive and avoidance conflict strategies. However, they observed no significant associations between distant caregiver negative health perceptions and usage of the two integrative strategies. Implications for long-distance caregiving communication are discussed.

Informal Caregivers of Cancer Patients: Perceptions About Preparedness and Support During Hospice Care

This study examined the perceptions of preparedness and support of informal caregivers of hospice oncology patients. Respondents included coresiding, proximate, and long-distance caregivers. Thematic analysis was used to analyze the qualitative data from 2 caregiver surveys, one administered prior to the care recipient's death and another completed 3 months postdeath. Respondents (N = 69) interpreted preparedness broadly and identified multiple sources of support including hospice personnel, family, friends, neighbors, and spiritual beliefs. Additionally, informational support, such as education, information, and enhanced communication were considered essential for preparing and supporting caregivers. Implications for social work research and practice are provided.

Engaging the Emotional, Financial, and Physical Ramifications of Long-Distance Caregiving

This article examines the profound impact of longdistance caregiving on family members and the loved ones for whom they are caring. It discusses the physical, emotional, and financial issues associated with long-distance caregiving and how longdistance caregivers can be better supported. The article also examines how the home care industry is addressing the specialized needs of these men and women who make up 15% of all long-distance caregivers as well as what is being done to supply the emotional and financial support necessary to maintain a better quality of life for all concerned.