Paid Caregivers Research Articles

Paid Care for People with Functional Impairment and Serious Illness: Results from the Health and Retirement Study.

Paid caregivers (e.g., home health aides) care for individuals living at home with functional impairment and serious illnesses (health conditions with high risk of mortality that impact function and quality of life). To characterize those who receive paid care and identify factors associated with receipt of paid care in the context of serious illness and socioeconomic status. Retrospective cohort study. Community-dwelling participants ≥ 65years enrolled in the Health and Retirement Study (HRS) between 1998 and 2018 with new-onset functional impairment (e.g., bathing, dressing) and linked fee-for-service Medicare claims (n = 2521). Dementia was identified using HRS responses and non-dementia serious illness (e.g., advanced cancer, end-stage renal disease) was identified using Medicare claims. Paid care support was identified using HRS survey report of paid help with functional tasks. While about 27% of the sample received paid care, those with both dementia and non-dementia serious illnesses in addition to functional impairment received the most paid care (41.7% received ≥ 40h of paid care per week). In multivariable models, those with Medicaid were more likely to receive any paid care (p < 0.001), but those in the highest income quartile received more hours of paid care (p = 0.05) when paid care was present. Those with non-dementia serious illness were more likely to receive any paid care (p < 0.001), but those with dementia received more hours of care (p < 0.001) when paid care was present. Paid caregivers play a significant role in meeting the care needs of those with functional impairment and serious illness and high paid care hours are common among those with dementia in particular. Future work should explore how paid caregivers can collaborate with families and healthcare teams to improve the health and well-being of the seriously ill throughout the income spectrum.

Solo but Not Alone: An Examination of Social and Help Networks among Community-Dwelling Older Adults without Close Family.

This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state. Adults aging solo were significantly more likely to identify non-child/spouse family, friends, neighbors and paid aides as part of their social networks. Their sources of unpaid help included siblings (33%), friends (32%), and non-family (e.g., neighbors (23%)). Adults aging solo were more likely to use paid caregivers, despite having lower incomes than married peers. Interventions to support adults aging solo should incorporate diverse social/help networks.

Support From a Distance: How Home Care Agencies Influence Paid Caregiving in the Home

Paid caregivers (e.g., home health aides, personal care attendants, and other direct care workers) who care for functionally impaired older adults in the home frequently report that while rewarding, their work is logistically, physically, and emotionally demanding. Unlike direct care workers in institutional settings, paid caregivers work with care recipients one-on-one in private settings and often have limited contact with or support from their employers. These factors contribute to high workforce turnover and may impact the quality of patient care. In this symposium, we explore ways that home care agency policies and practices influence the experience of giving and receiving care in the home. First, Bryant et al. describe the range of agency-based models and the impact of workplace design in creating supportive working environments. Next, Fabius et al. explore characteristics of direct care agencies across Maryland, with implications for worker training and support. Reckrey et al. describe the differing perceptions of aides, caregivers and providers around the role agencies play in defining paid caregivers’ roles, and how this may lead to conflict within the caregiving team. Finally, in the context of COVID-19, Franzosa et al. examine communication and coordination between Veterans Affairs-paid agencies and home health aides during the pandemic, while Tsui et al. present a case study of an agency’s efforts to support paid caregivers through group support calls. Together, these studies highlight challenges in the structure, organization and perceptions of home care agencies, and identify potential avenues for agencies to support paid caregivers and their clients.

National Estimates of Climate-Related Disasters among Older Adults with Dementia

Abstract Climate-related disasters can have devastating consequences, particularly for the growing population of older adults with dementia. Increasingly, older adults with dementia are aging in place at home, where they often receive assistance for mobility or self-care activities from family and/or paid caregivers. Understanding this population’s experience with climate-related disasters is integral to mitigation, preparedness, and emergency response outside of institutional (e.g., nursing home) settings. We aimed to estimate the population of community-dwelling older adults—including those with dementia—who live in counties that experienced climate-related disasters. We used 2000-2016 data from the Health and Retirement Study (HRS), linked 2000-2018 with Federal Emergency Management Agency (FEMA) disaster data. We flagged each occurrence of climate-related disaster (e.g., hurricane, flood) and then identified HRS participants living in counties with a disaster declaration. Using survey weights, we obtained population-level estimates by disaster frequency and sample characteristics. In each two-year HRS period, we found that 14.26-20.50 million community-dwelling adults over age 65 in the contiguous US (32.2%-53.7%) resided in a county with at least one disaster. This includes 0.62 -1.12 million persons with dementia, 67.2%-76.8% of whom are reliant on caregivers. On average (per two-year period), more than one-third (36.3%) of community-dwelling older adults living with dementia lived in a county with a least one disaster. Policy makers and emergency planners should strongly consider the needs of older adults at the intersection of dementia and risk of climate-related disasters, with an eye towards ensuring access to mobility and self-care assistance.

Who Provides Care in a Crisis? Family Caregivers’ Experiences of Home Care During the COVID-19 Pandemic

Many homebound individuals with dementia rely on both paid caregivers (e.g., home health aides, home attendants, other homecare workers) and family caregivers to live safely at home. We conducted semi-structured interviews with 15 family caregivers of individuals with severe dementia receiving home-based primary care in NYC to explore how caregiving changed during the COVID pandemic. Most individuals with long-standing paid caregivers experienced infrequent home care disruptions. In fact, paid caregivers were often the primary and sometimes only individuals to provide direct care; family caregivers themselves often stayed away and managed care from a distance. While most family caregivers described heightened attention to infection control, guidance about COVID prevention and safety rarely came from home-based primary care providers or home care agencies and instead was considered “common sense.” These findings confirm the essential role paid caregivers play in home-based dementia care teams.

Whose Decision Is It? Perspectives on Agency Involvement in Determining Paid Caregivers' Roles in Dementia Care

Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.

Caregivers' Role in Cybersecurity for Aging Information Technology Users with Intellectual Disabilities.

Information technology (IT) users with intellectual disabilities (ID) are likely to experience online privacy violations without adequate support from their caregivers. Given that aging users face additional challenges when using IT than their younger counterparts, the goal of this exploratory study is to investigate caregivers' strategies and barriers for helping to protect the privacy of aging IT users with ID. Six caregivers (four paid caregivers, two family members) of aging users with ID completed a series of six focus groups about their experiences assisting the people they support with using IT, including their strategies and barriers for helping to protect these users' privacy. Participants were also asked about their own attitudes and experiences related to online privacy and information security. Based on our inductive thematic analysis of the qualitative data, participants used three main strategies to help protect the privacy of aging users with ID: (1) restricting access to personal information, (2) limiting disclosure of personal details, and (3) providing just-in-time instruction and feedback. We also identified four key barriers to privacy protection: (1) limited awareness and knowledge about information security, (2) balancing privacy and autonomy, (3) maintaining professional boundaries, and (4) residential care services' policies. Inclusive and transdisciplinary research is needed to address the elevated privacy and security risks for aging IT users with ID, and provide caregivers with training on how to support this population to use IT safely. Technology developers should create solutions to decrease aging users with ID's dependence on caregivers for privacy protection.

From village health volunteers to paid care givers: the optimal mix for a multidisciplinary home health care workforce in rural Thailand

BackgroundThailand is a rapidly aging society, which places high demand on home health care services for the elderly. The shortage of health care workforce in rural areas is a crucial obstacle to the delivery of adequate home health care services. The appropriate skill-mix between multidisciplinary health team and care givers (CGs) is an attractive solution for improving home health care services in rural Thailand. This study assessed the potential of trained CGs to provide home health care services and projected what the optimal mix for a multidisciplinary home health care team in rural Thailand would be in 2030.MethodsEleven pilot districts in Thailand were recruited for the study. Secondary data were collected along with surveys of home health care providers. A total of 130 care managers (nurses) and 351 care givers (CG) were recruited for the survey. Workload, skill-mix potential, and acceptance of care givers were assessed in the surveys. The results from secondary data and the survey were used to project the health workforce requirements in 2030.ResultsIt is projected that in 2030 the number of elderly living in rural areas will be 7,156,700 (27% of the projected rural population). Of this, 20.3% will be home-bound, 1.1% will be bed-ridden and 1.6% will need rehabilitation. The main members of the multidisciplinary health workforce involved in home health care were nurses, doctors, and physiotherapists. The home health care services that were provided by the multidisciplinary health workforce included patient assessment, development of a care plan and case conference, home visits, and teaching and supervision of CGs. The CGs were village health volunteers trained to carry out regular home visits to patients. The CGs provided assistance with the activities of daily living, basic health services, moral support to patients and relatives, and surveillance of the home environment during home visits. CGs were well accepted by both the health professionals and the patients. Projections showed that 16,094 nurses, 1,542 doctors, 1,022 physiotherapists and 50,148 CGs will be required in 2030 to meet the needs of the dependent elderly for home health care in rural Thailand.ConclusionWith the increased need for home health care services in the future, appropriate team work between the members of the multidisciplinary health team and the CGs in the community is the appropriate solution for likely shortages of health professional workforce.

Dementia Caregiving: The Association Between Family Caregiving Strain and Receipt of Paid Care

family caregivers. Using data from three waves (2011, 2015, 2017) of the National Health and Aging Trends Study (NHATS) linked to the National Study of Caregiving (NSOC), we identified family caregivers of those with advanced dementia and compared caregiving strain among those with zero, <20, and 20+ hours/week paid care. Family caregivers of those who received 20+ hours (26% of the sample) reported less caregiver strain (mean score 3.27 vs 4.15, p=0.04) and less frequently reported having more to do than they could handle (46.1% vs 67.9%, p=0.01) or not having enough time for themselves (46.8% vs 72.2%, p<0.01). The association persisted in a multivariable model. These results support the conceptualization of dynamic and potentially multidirectional relationships between paid and family caregivers and suggest that paid caregivers impact both those receiving care and their families.

Family Caregiver Perspectives on Benefits and Challenges of Caring for Older Adults With Paid Caregivers.

Many older adults receive help from both family caregivers and home care workers. We aimed to understand family caregivers' perspectives on home care workers. This qualitative study took place at an academic medical center in New York, N.Y. We interviewed family caregivers of community-dwelling older adults about their experiences with home care workers. We analyzed transcripts thematically. We interviewed 17 family caregivers and identified four major themes: (a) home care workers provide functional and emotional support; (b) home care is logistically challenging; (c) finding the right fit between home care workers, older adults, and families is essential; and (d) home care workers and family caregivers coordinate care well beyond the initiation of home care. Despite its logistical challenges, home care benefits patients and family caregivers. Given the growing prevalence of caregiving, clinicians and family caregivers might benefit from training and support about working with home care workers.

Abstract TMP55: Understanding Cultural and Knowledge Barriers to Acute Stroke Care in the Filipino American Community

Introduction: Filipino Americans (FilAms) in Los Angeles make up the largest Filipino community outside of the Philippines and 2nd largest Asian subgroup in L.A. County. FilAms also have higher rates of stroke, high blood pressure, and diabetes not only compared to other Asian subgroups but also to African American and Latino communities. Little is known about FilAm knowledge and cultural barriers in accessing acute stroke care. Methods: Using a qualitative descriptive design, we studied knowledge, attitudes, and health behaviors of the L.A. FilAm community with regard to acute stroke care by conducting 5 focus groups of 5-7 people each and 6 semi-structured interviews with key community leaders. Participants were recruited through L.A. FilAm community organizations. Focus groups were organized as follows: 1st: elderly community members at high stroke risk; 2 nd : spouses of those at high stroke risk; 3 rd : paid caregivers of those with stroke risk; 4 th : unpaid caregivers of those with stroke risk; 5 th : young FilAms with family members with stroke risk. Six individual interviews were with elderly FilAms identified as exceptionally healthy by community leaders. We conducted thematic analysis, coding for themes on barriers to acute stroke care. Results: Two key themes have emerged: 1) spiritualistic fatalism and the belief that God is in control of all outcomes despite an individual’s will and 2) fear of calling 911, specifically linked to shame in being perceived as unhealthy by neighbors, fear of deportation among undocumented FilAms, and fear of high ambulance cost. Elderly participants perceived social media as one of the most effective ways to widely engage FilAms on stroke. Conclusion: Beliefs related to spiritualistic fatalism as well as fear of calling 911 are powerful barriers to acute stroke care among FilAms. The results can inform a culturally-relevant intervention for the community using social media, the Internet, and Filipino television programs to encourage FilAms to obtain acute stroke care. Data collected is currently being integrated into a FilAm stroke media tool. Lessons learned from this project will also be used to create stroke education for other U.S. Asian Pacific Islander communities.

THE HEALTH-RELATED TASKS PAID CAREGIVERS IN NEW YORK STATE PERFORM IN THE HOME

Paid caregivers (e.g. home health aides, personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used semi-structured interviews (n=30) with dyads of patients or their proxies and their paid caregivers in New York City to 1) understand the range of health-related tasks paid caregivers perform in the home and 2) determine if these tasks are taught in the New York State government’s Department of Health curricula. We found that patients, proxies, and paid caregivers all described that paid caregivers performed a wide range of health-related tasks that were often not a part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform at home will help maximize the potentially positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.

BEYOND FUNCTIONAL SUPPORT: PAID CAREGIVERS AND THE HEALTH OF OLDER ADULTS

This symposium will explore role that paid caregivers (e.g. home health aides, personal care attendants, and other direct care workers) play in the health and team-based healthcare of older adults living in the community. The large and growing workforce of paid caregivers witness the changes in health status, chronic health needs, and psychosocial stressors of the older adults they care for. Yet existing research on paid caregivers has largely been limited to workforce issues such as recruitment, retention, and job satisfaction. The unique potential of paid caregivers to impact the health of their clients remains largely unstudied. The first presenter will describe results from qualitative interviews with seriously ill older adults and their long-time paid caregivers that found that paid caregivers perform a wide variety of health-related tasks in the course of their routine care. The second presenter will describe results from focus groups with paid caregivers that found that though not a part of the official care plan, paid caregivers provided deliberate cognitive, emotional, and social care that sought to improve their clients’ “total” health. The third presenter will outline the rationale for and development of an educational intervention aiming to improve paid caregiver’s ability to provide care to patients with heart failure. Finally, the fourth presenter will discuss the limited role paid caregivers currently play in the healthcare team. She will then highlight key policy, educational, and clinical recommendations to promote further paid caregiver integration in the healthcare team.

Beyond Functional Support: The Range Of Health-Related Tasks Performed In The Home By Paid Caregivers In New York.

Paid caregivers (for example, home health aides and personal care attendants) are formally tasked with helping older adults with functional impairment meet their basic needs at home. This study used thirty semistructured interviews with dyads of patients or their proxies and their paid caregivers in New York City to understand the range of health-related tasks that paid caregivers perform in the home and determine whether these tasks are taught in the New York State Department of Health's curriculum. We found that patients, proxies, and paid caregivers all reported that paid caregivers performed a wide range of health-related tasks that were often not part of their formal training. Creating clear competencies for paid caregivers that reflect the full breadth of health-related tasks they may perform in the home could help maximize the positive impact of the paid caregiver workforce on the lives of patients living at home with functional impairment.

Mental Health and Quality of Life Differences Between the Family Members and Paid Caregivers in Brain Injury

Mental Health and Quality of Life Differences Between the Family Members and Paid Caregivers in Brain Injury

Training for In-Home Supportive Services Caregivers in an Underserved Area.

Despite the complexity of care associated with older adults who have been diagnosed with Alzheimer's disease and related dementias, many in-home paid caregivers receive little to no training in competent care for these older adults. The In-Home Supportive Services program in California provides care for elderly, blind, and disabled people with the goal of ensuring the care recipients may remain safely in their own homes. Yet, these caregivers are not required to receive training in any specific disease or condition prior to providing caregiving services. A Geriatrics Workforce Enhancement Program and the Riverside County Department of Social Services jointly developed and implemented three different interactive, community-based, knowledge and skills-based training courses for IHSS caregivers. Analysis of pre/post course evaluations across all three courses demonstrated statistically significant gains in knowledge and self-rated skills among the participants.

New Measures to Assess Attitudes and Intended Behaviors of Paid Caregivers toward Sexuality of Adults with Developmental Disabilities

Keywords: attitudes, staff, sexuality, sexual behavior, relationships, developmental disabilities Background: Attitudes that paid residential caregivers have about the sexuality of clients with developmental disabilities may impact adequate and appropriate care as well as the rights of clients in residential settings. The purpose of the study was to develop two surveys to assess attitudes and intended behaviors of staff who work with individuals with developmental disabilities.Materials &amp; Methods: A survey to measure attitudes and one to measure behavior were developed, piloted, and validated through a test-retest process and use of a previously developed survey that contained language that was dated and inconsistent.Results: Both surveys were found to be reliable and valid, and attitudes and intended behaviors were found to be significantly correlated.Conclusions: The development of reliable and valid tools to assess attitudes and intended behaviors of caregivers is important for establishing appropriate training, policy, and procedures for handling sexuality-related issues with clients with developmental disabilities.

The Health of Paid Caregivers: A Cross-Sectional Study in Spanish Population

In countries with a welfare system, such as Spain, paid caregiving is an important profession and investigating the health of people who care for the health of others is becoming an issue of increasing interest. This paper reports on a study assessing the health of people who care for the health of others. It investigates whether caregiving jobs carry with them a higher risk of psychological and physical health problems than other unrelated occupations, and it examines whether risk profiles differ by sex and educational level. A descriptive correlational approach and a cross-sectional design were used. The sample included 330 participants. Half of the participants worked as caregivers, and the other half worked in professions unrelated to caregiving services. The results indicate that paid caregivers have poorer health than their matched counterparts. The variable of caregiving explains this difference better than sex or educational level and professional category.

Comparison study of job environmental factors on job affection and turnover intention among Japanese and Korean paid caregivers

comparison study of job environmental factors on job affection and turnover intention among Japanese and Korean paid caregivers

Technology and Long-term Care (TLC): A pilot evaluation of remote monitoring of elders

Purpose of the study To conduct a pilot implementation and evaluation of how a new sensor technology for remote monitoring of elders can support elders living at home. Design and Methods The study population is community-dwelling elders and their family and/or paid caregivers. The technology was installed in twelve elders’ homes. For three months the sensors monitored four activities (meal preparation, physical activity, vitamin use, and personal care) and conveyed summary information to the elder, family caregiver and/or paid caregiver. This study evaluated the use of and satisfaction with the technology, change in the elders’ perceived safety and well-being, change in elders’ and family caregivers’ communication patterns, and change in family caregiver burden. Results All subjects used the technology, would recommend it to others, and were generally satisfied with the technology. Elders and caregivers used the technology as a passive alert system, a reminder for elders to conduct daily activities, and as communication enhancement. Elders reported an increase in their perceived safety, well-being, peace of mind and independence. Family caregivers also reported an increase in their peace of mind. An absence of privacy issues and good usability facilitated user satisfaction while intermittent mechanical and software problems were identified as barriers. Implications The remote monitoring technology has promise for supporting elders in independent living situations. A study with a larger sample size and fully operational equipment should be conducted prior to large scale implementation. A cost analysis of our technology for long term care is also recommended.