Amy Horowitz’s research while affiliated with Fordham University and other places

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.

The purpose of this study (N=304) was to examine the characteristics of LDCs’ informal caregiver (IC) network (Co-caregivers [Co-CG], other informal helpers) providing assistance to the care recipient (CR), and factors associated with more help received from ICs. The majority of LDCs in the sample reported working with at least one IC (81.9%) indicating the existence of a secondary care network. LDCs and Co-CGs were often siblings in comparison to other informal helpers that were more likely to be the CR’s friend. Results also show that CRs with children, living in the community, receiving no formal services, and lower levels of cognitive impairment receive more hours of help from ICs. In addition, more hours of help by ICs were associated with LDCs’ having higher scores of depression and anxiety, spending more hours per month helping the CR, and more frequent contact with CR. These seemingly discrepant findings are discussed.

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.

This study investigated the impact of LDC on mental health utilizing the Sociocultural Stress Process Model as a conceptual framework. A path analytic model tested the impact of caregiving stressors (i.e. distance, frequencies of visits, hours spent helping, burden) and sociocultural values (i.e. familialism) on LDCs’ mental health outcomes (i.e. depression, anxiety), and resources (i.e. coping strategies, social support) which can mediate the association between stressors and mental health outcomes while controlling for socio-demographics. Results show that resources did not mediate the effects of stressors on the mental health outcomes. However, both higher depression and anxiety were associated with living closer to the care recipient (CR), less frequent visits, higher burden, being younger, being female, and less optimal income adequacy. In addition, higher depression was associated with lower use of coping strategies and higher education. Higher anxiety was also associated with lower levels of social support and higher familialism.

The purpose of this study (N=304) was to identify differences in LDCs’ experiences with their care recipient’s (CR) formal care providers (FCPs) among four LDC groups based on CR dementia status and residential setting (community/nursing home [NH]). Results show that LDCs of CRs without dementia living in a NH are less likely to be satisfied with information/communication provided by FCPs compared to LDCs of CRs with dementia in the community. FCP-related challenges were significantly greater among LDCs of CRs in a NH, with or without dementia, compared to LDCs of CRs without dementia living in the community. A significantly greater proportion of LDCs of CRs living in a NH, with or without dementia, reported dealing with inadequate care as a challenge compared to LDCs of CRs with dementia living in the community. This highlights LDCs’ unique experiences related to FCPs based on differences in CR dementia status and residential setting.

Long-distance caregivers (LDCs) are defined by geography, with little known about what they actually do when visiting and from afar. Both quantitative and qualitative data were collected from 304 LDCs. Half of LDCs lived more than 500 miles away from the care receiver (CR); 38% visited at least 1x a month, another 53% visited several times a year. Visit length varied extensively, ranging from one to 90 days at a time, with a median of 3 days. A wide range of care management tasks were common both when visiting and from afar; and targeted both formal providers and other informal caregivers. Emotional support and help with ADLs and IADLs were common during in-person visits. Other examples of emerging themes include: building relationships with formal care providers; personalizing care through, for example, special foods and/or activities; and the role of resources in determining visit length and help provided.

Using data from the Fordham Long Distance Caregiving (LDC) Study (N=286), the purpose of these analyses was to describe the formal service use and needs (e.g., support groups, geriatric care management) of LDCs and to identify subgroup differences based on caregiver and care recipient characteristics. We found that rates of service use were low with an average of 8% of participants reporting use of each type of service. Participants who used formal services were younger, female, White, reported higher caregiver burden, depression, anxiety, and had care recipients with better cognition. Regarding service needs, an average of 53% of participants reported being interested in each type of service. Participants who were more likely to be interested in services were younger, female, had lower income adequacy, reported higher caregiver burden, depression, anxiety, and had care recipients with better cognition. This study highlights discrepancies between service use and needs among LDCs.

Several decades of caregiving research has produced a rich knowledge base on the processes and consequences of caregiving, particularly as relevant to primary, geographically proximate caregivers. However, in our increasingly mobile society, long-distance caregiving (LDC) is a growing phenomenon. As many as 11% of family caregivers in the US live more than two hours distance from the care receiver (CR), half of whom are primary caregivers, and little is known about their unique experiences. This symposium presents initial findings from the Fordham Long-Distance Caregiving Study funded by NIA (R21AG050018). The study goal was to better understand how long-distance caregivers (LDCs) deal with the structural constraint of distance and identify subgroup differences based on characteristics of care receivers and LDCs. We analyzed data of 286 LDCs, collected data via tape-recorded telephone interviews, and apply a mixed-method design with open and structured parts of the interview. Horowitz presents the study background, characteristics of the sample, and the many challenges of sample recruitment. Cimarolli discusses data on mental health consequences of LDC and variation by key characteristics of LDCs. Hicks presents our qualitative data on the specific challenges of LDC related to distance (e.g., the physical and financial toll of traveling). Last, Minahan examines service use and service needs and findings highlight discrepancies between service use and needs among LDCs. Pruchno brings her extensive experience in caregiving research to discuss study findings. The symposium provides insights into a study field effort involving LDCs and the unique experiences of LDCs.

The purpose of this study was to examine the specific types of challenges related to distance that were reported by caregivers who participated in the Fordham Long Distance Caregiving (LDC) Study. We coded 60 open-ended responses to a question that asked about the challenges caregivers face in providing care to an older adult who lives at least two hours travel distance away. More than half of respondents reported challenges relating to distance from the care recipient (CR). The main distance-related themes that emerged included general difficulty taking care of things from afar (n=8), difficulty communicating with the CR (n=5), spending time away from family members (n=5), the toll of traveling (n=4), making time to travel to visit the CR (n=4), difficulty knowing what’s going on with the CR (n=4), and emotional strain (n=4). This study provides insight into the unique challenges that LDCs face in providing care to loved ones.

The purpose of this study was to examine Long-Distance Caregiving (LDC) stressors (i.e., work and family conflict, caregiver [CG] burden) and mental health consequences (i.e., depression and anxiety), and to identify subgroup difference (i.e., by ethnicity, income adequacy, and gender). We analyzed data from the Fordham Long Distance Caregiving Study (N=286). Results showed that Blacks when compared to Whites and Latinos reported significantly lower levels of caregiving interference with other family responsibilities. Blacks when compared to Whites had significantly lower levels of CG burden. Female LDCs had significantly higher levels of depression and anxiety when compared to men. Finally, there were significant associations between lower income adequacy and higher levels of CG burden, more interference with work and family responsibilities, and higher depression and anxiety. This study paints a complex picture of stressors and consequences of LDC and highlights which LDC sub-groups may be vulnerable to stressors and negative consequences.