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

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 571-571
Author(s):  
Jennifer Reckrey ◽  
Robyn Stone

Abstract 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.

2019 ◽  
Vol 32 (2) ◽  
pp. 67-75 ◽  
Author(s):  
Julia Burgdorf ◽  
Alicia Arbaje ◽  
Jennifer L. Wolff

Family caregivers make important contributions to home health care for older adults, but knowledge of the specific roles they assume is lacking. We analyzed data from 1,758 community-dwelling Medicare beneficiaries aged 65+ receiving Medicare-funded home health care between 2011 and 2016, using linked National Health and Aging Trends Study and Outcomes and Assessment Information Set data. Most (86.7%) beneficiaries receiving home health care had an identified need for family caregiver assistance, and nearly 6 in 10 (57.9%) had identified need for caregiver assistance with five or more tasks. After examining significant associations between older adult characteristics and identified needs for caregiver assistance with specific tasks, we identified three profiles of older adults who demonstrate similar patterns of identified need for family caregiver assistance during home health. These profiles include: (1) older adults with greater functional impairment who more often had identified need for assistance with Instrumental Activities of Daily Living, advocacy, or Activities of Daily Living; (2) older adults with cognitive impairment who more often had identified need for assistance with medication administration or supervision; and (3) older adults with greater clinical severity who more often had identified need for assistance with medical procedures and equipment. Findings support calls to develop training interventions and strengthen the partnership between home health providers and family caregivers. These three profiles present a potential framework for the development of family caregiver training programs.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S206-S206
Author(s):  
Jennifer L Wolff ◽  
Lynn F Feinberg

Abstract Family and other unpaid caregivers have a foundational role in supporting the health and well-being of older adults with complex health needs and disabilities and the demands imposed on them can be significant. The availability and adequacy of support provided by family and other unpaid caregivers has profound consequences for quality and outcomes of care delivery, but they are not well-supported in treatment decisions and care planning. Given population aging, the shift of long-term services and supports from nursing homes toward community settings, and technological advances that allow patients to be served in the community with higher acuity of care, there is a pressing need to develop systems-level processes to identify, engage, and support family caregivers in systems of care. This symposium will feature 5 presentations that provide novel insight regarding family caregivers’ experience within systems of care. We focus on family caregivers to older adults living in the community and receiving home and community-based services, primary care, or Medicare skilled home health services. Individual presentations will describe 1) differences in access to services and experiences of family caregivers by under-represented minority status; 2) a framework for health systems to include family caregivers as part of health care teams; 3) family caregivers’ capacity to help during the course of Medicare-funded skilled home health care; 4) perceived communication with health professionals, using a validated measure of family caregiver capacity; and 5) the feasibility of implementing a family caregiver screening instrument in primary care.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 154-154
Author(s):  
Ayumi Igarashi ◽  
Madoka Katayama ◽  
Mariko Sakka ◽  
Maiko Noguchi-Watanabe ◽  
Chie Fukui ◽  
...  

Abstract Having a sense of security for living at home is essential to continue living at home and it is important to develop a community care system that enables high sense of security. Because frail to dependent older adults often accompany various conditions that require medical attention, receiving homecare nursing might allow the family caregiver to feel safe in living at home. Therefore we examined whether receiving homecare nursing service contributes to a higher family caregiver sense of security. We conducted a questionnaire survey regarding older adults who were 75 years and older with at least some sort of community care services, and their family caregivers (n=776). Family sense of security was measured using 5 items (e.g., “I feel secure about my relative living at home with help of available services”), rated on 5-point Likert scales. Characteristics of older adults were obtained from their nurses or care managers. The mean age of the older adults was 85.8 years, 58% female, and 8 % living alone. The mean total family sense of security was 20.6 (standard deviation = 3.7) out of 25. In multiple regression analysis, the family sense of security was positively associated with the use of homecare nursing (β= 0.09, p=0.020), adjusting for participants’ age, stability of their medical conditions, level of activities of daily living, use of medical procedures, living arrangements, and house call physician services. Homecare provided by nurses could contribute to longer staying at home among older adults by way of the higher family sense of security.


2019 ◽  
Vol 7 (4) ◽  
pp. 561-569
Author(s):  
Jo-Ana D Chase ◽  
David Russell ◽  
Meridith Rice ◽  
Carmen Abbott ◽  
Kathryn H Bowles ◽  
...  

Background: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers’ experiences. Objective: To explore caregivers’ experiences regarding training and support for managing older adults’ physical functioning (PF) needs in the post-acute HHC setting. Method: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis. Results: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge). Conclusion: Caregivers were responsive to learning strategies to manage older adults’ PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting.


2021 ◽  
pp. 084456212110443
Author(s):  
Brittany Barber ◽  
Lori Weeks ◽  
Lexie Steeves-Dorey ◽  
Wendy McVeigh ◽  
Susan Stevens ◽  
...  

Background An increasing proportion of older adults experience avoidable hospitalizations, and some are potentially entering long-term care homes earlier and often unnecessarily. Older adults often lack adequate support to transition from hospital to home, without access to appropriate health services when they are needed in the community and resources to live safely at home. Purpose This study collaborated with an existing enhanced home care program called Home Again in Nova Scotia, to identify factors that contribute to older adult patients being assessed as requiring long-term care when they could potentially return home with enhanced supports. Methods Using a case study design, this study examined in-depth experiences of multiple stakeholders, from December 2019 to February 2020, through analysis of nine interviews for three focal patient cases including older adult patients, their family or friend caregivers, and healthcare professionals. Results Findings indicate home care services for older adults are being sought too late, after hospital readmission, or a rapid decline in health status when family caregivers are already experiencing caregiver burnout. Limitations in home care services led to barriers preventing family caregivers from continuing to care for older adults at home. Conclusions This study contributes knowledge about gaps within home care and transitional care services, highlighting the importance of investing in additional home care services for rehabilitation and prevention of rapidly deteriorating health.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S219-S219
Author(s):  
Julia Burgdorf ◽  
John Mulcahy ◽  
Halima Amjad ◽  
Judith D Kasper ◽  
Kenneth Covinsky ◽  
...  

Abstract Community-living older adults with disability are frequent Emergency Department (ED) users and most rely on family caregiver support. However, no prior research has examined associations between caregiver characteristics and subsequent ED utilization among older adults. We draw on a sample of 2,521 community-living older adults with mobility/self-care disability and their primary family caregivers to identify caregiver characteristics associated with all-cause or potentially preventable ED use. We use Cox proportional hazards regression to separately model the likelihood of all-cause and potentially preventable ED use as a function of caregiver characteristics. Models account for competing risk of mortality and adjust for measures of older adults’ socio-demographic characteristics, health status, and survey wave. About half (52.5%) of older adults incurred 1+ ED visit and 26.8% incurred 1+ potentially preventable ED visit within 12 months of interview. Adjusting for survey wave and older adult sociodemographic characteristics and health status, older adults were at greater risk of all-cause ED use if their primary caregiver provided greater than 40 hours of care per week (HR: 1.22, 95% CI: 1.04-1.43; p=0.02), helped with health care tasks (HR: 1.26; 95% CI: 1.08-1.46; p<0.01), or experienced physical strain (HR: 1.18; 95% CI: 1.03-1.36; p=0.02). Older adults were at greater risk of potentially preventable ED use if their primary caregiver helped with health care tasks (HR: 1.25; 95% CI: 1.02-1.54; p=0.03). Findings highlight the relevance of caregiver factors to older adults’ ED use and suggest the need for assessment and support of family caregivers in the care delivery setting.


2018 ◽  
Vol 2 (S1) ◽  
pp. 82-82
Author(s):  
Judith Vick ◽  
Jennifer Wolff

OBJECTIVES/SPECIFIC AIMS: Family members are often critical in the delivery of hands-on care and decisions about care for persons approaching end-of-life (EOL). Prompted by concerns about the poor quality and high costs of care at the EOL, recent delivery reform efforts—such as the growth of hospice and palliative care—have been directed at improving EOL care for both patients and family. Trends of the characteristics of EOL family caregivers and care recipients over time have not been well described. The goal of this study is to evaluate changes in EOL family caregiving from 1999 to 2015. METHODS/STUDY POPULATION: This study uses reconciled data from two nationally representative surveys and their linked caregiver surveys: the 1999 wave of the National Long-Term Care Survey (NLTCS) and the Informal Care Survey (ICS), and the 2015 wave of the National Health and Aging Trends Study (NHATS) and the National Survey of Caregiving (NSOC). RESULTS/ANTICIPATED RESULTS: Crude analysis shows that older adults living in the community and receiving help from family caregivers in the last year of life were significantly better educated (72% with greater than 12 years of education vs. 46%), and more diverse (78% White vs. 89%) in 2015 compared with 1999. Family caregivers in the last year of life were less likely to be female in 2015 compared with 1999 (74% vs. 68%, NS) and significantly less likely to be spouses (45% vs. 38%) in 2015. In 2015, a significantly greater proportion of older adults received help with five or more activities of daily living (47% vs. 34%), but family caregivers reported significantly lower levels of caregiving-associated distress: financial strain (80% reporting none in 2015 vs. 53%), emotional (51% vs. 39%), and physical strain (70% vs. 45%). In addition, a significantly greater proportion of EOL family caregivers used respite care in 2015 compared to 1999 (15% vs. 4%). DISCUSSION/SIGNIFICANCE OF IMPACT: Changes in the experience of EOL family caregiving may be impossible to capture in studies of single interventions, but tracking nationally representative trends can be used as an indicator of broader changes that take place cumulatively over time. Although studies of this nature cannot identify causal mechanisms of change, they are important to monitor long-term impact of program implementation and to guide future research, policy, and resource allocation.


2001 ◽  
Vol 19 (1) ◽  
pp. 125-142 ◽  
Author(s):  
MARGARET J. BULL

Family caregivers are the mainstay of long-term care, as they enable chronically ill elders and children to remain at home. The majority of family caregivers are women and historically their caregiving role has been viewed as an extension of their roles as wife and mother. Although numerous studies report the stresses associated with family caregiving and are predictors of burden, less attention has been given to interventions for family caregivers. The objective of this review is to examine reports of interventions to reduce family caregiver burden, to consider their implications for nursing practice, and to identify directions for future nursing research.


2016 ◽  
Vol 11 (1) ◽  
pp. 31-38 ◽  
Author(s):  
Tomoko Wakui ◽  
Emily M. Agree ◽  
Tami Saito ◽  
Ichiro Kai

AbstractObjectiveIn the 2011 Great East Japan Earthquake, as in Hurricanes Katrina and Rita in the United States, older individuals were at the greatest risk of mortality. Much concern has been raised about developing plans to reduce these risks, but little information has been provided about preparedness, and the key role played by caregivers has been largely unexplored. The aims of this study were thus to examine the preparedness of family caregivers of older adults with long-term care needs and to identify the characteristics of older adults and their caregivers that are associated with poor preparedness and greater concern about disasters.MethodsShortly after the Great East Japan Earthquake, the second wave of the Fukui Longitudinal Caregiver Study was administered to the family caregivers of older Japanese individuals with long-term care needs. The sample included 952 caregivers from 17 municipalities in Fukui prefecture. Logistic regression analyses were used to identify the factors associated with self-assessed preparedness, evacuation planning, and caregivers’ concerns about preparedness.ResultsThe majority (75%) of the caregivers had no concrete plans for evacuation in an emergency, and those caring for persons with dementia were 36% less likely to have any plan. In multivariate models, caregivers who were more experienced and wealthier and who reported more family and community support were more likely to feel well prepared. Caregivers with poor health or limited financial resources or who were responsible for older persons with mobility difficulties reported higher levels of anxiety about their disaster preparedness.ConclusionsThis study indicates that most caregivers are ill prepared to respond in emergencies and that caregiver resources, community support, and the needs of older care recipients influence both preparedness and concern about disasters. Education for caregivers and the development of community support programs could provide important sources of assistance to this vulnerable group. (Disaster Med Public Health Preparedness. 2017;11:31–38)


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 252-253
Author(s):  
Julia Burgdorf ◽  
Jennifer Wolff

Abstract Medicare home health providers are required to offer family caregiver training; however, there is little information regarding the impact of family caregiver training on patient outcomes in home health or other care delivery settings. A better understanding of this relationship is necessary to guide development of caregiver training interventions and inform policy discussions surrounding family caregiver training access. This research assesses whether and how unmet need for family caregiver training is associated with acute care utilization during Medicare home health. We examine 1,217 (weighted n=5,870,905) fee-for-service Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011-2016. We link NHATS data with home health patient assessments and Medicare claims, drawing measures of family caregivers’ need for training from home health clinician reports and determining provision of training from Medicare claims. Using weighted, multivariable logistic regressions, we model the marginal change in probability of acute care utilization during home health as a function of family caregivers’ unmet need for training. We found that older adults whose family caregivers had an unmet need for training had a probability of acute care utilization during home health that was 18 percentage points (p=0.001) greater than those whose family caregivers both needed and received training, holding all covariates at their means. Findings support the importance of connecting family caregivers to training resources and suggest one avenue by which investing in caregiver training may be cost-effective for integrated payers and providers.


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