A comparison of caregiver burden between long-term care and developmental disability family caregivers

2021 ◽  
Vol 26 (8) ◽  
pp. 781-793
Author(s):  
Alison Pattison ◽  
Elissa Torres ◽  
Lori Wieters ◽  
Jennifer G. Waldschmidt
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Developmental Disability ◽  
Long Term Care ◽  
Role Strain ◽  
Well Being ◽  
The United States ◽  
Term Care ◽  
Personal Strain

Background As the United States’ population ages and health concerns rise, the family caregiver occupation will continue to be an integral part of the health care system. Aims It is important to examine the burden that family caregivers experience so they can seek out additional training and services to maintain their own well-being. The researchers examined caregiver burden from a perspective of developmentally disabled and long-term care. Methods The researchers examined difference in Zarit scores, guilt, burden and personal strain for 72 caregivers of people with developmental disability (DD) or people with long-term care (LTC) needs. The researchers also examined differences in these based on whether the individual was caregiving for family or “others”. Results For DD, there were significant differences in Zarit, role strain and personal strain; caring for others has significantly lower scores on these. Role strain was significantly higher than personal strain, which was significantly higher than guilt for both LTC and DD groups. Conclusions Given these findings, it is important to support family caregivers first and foremost with role strain, especially for those caring for family members with DD. This support could be given through personal counselling, caregiver training, non-profit social service resources, and support groups for family caregivers.

scholarly journals FEDERAL POLICY SUPPORTS AND GAPS IN ADDRESSING RACIAL-ETHNIC HEALTH DISPARITIES IN U.S. LONG-TERM CARE FACILITIES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S161-S161
Author(s):  
Rebecca L Mauldin ◽  
Kathy Lee ◽  
Antwan Williams
Keyword(s):  
Long Term Care ◽  
Federal Policy ◽  
Care Facility ◽  
Well Being ◽  
The United States ◽  
Term Care ◽  
Long Term Care Facility ◽  
Care Facilities

Abstract Older adults from racial and ethnic minority groups face health inequities in long-term care facilities such as nursing homes and assisted living facilities just as they do in the United States as a whole. In spite of federal policy to support minority health and ensure the well-being of long-term care facility residents, disparities persist in residents’ quality of care and quality of life. This poster presents current federal policy in the United States to reduce racial and ethnic health disparities and to support long-term care facility residents’ health and well-being. It includes legislation enacted by the Patient Protection and Affordable Care Act of 2010 (ACA), regulations of the U.S. Department of Health and Human Services (DHHS) for health care facilities receiving Medicare or Medicare funds, and policies of the Long-term Care Ombudsman Program. Recommendations to address threats to or gaps in these policies include monitoring congressional efforts to revise portions of the ACA, revising DHHS requirements for long-term care facilities staff training and oversight, and amending requirements for the Long-term Care Ombudsman Program to mandate collection, analysis, and reporting of resident complaint data by race and ethnicity.

Interventions for Women As Family Caregivers

2001 ◽  
Vol 19 (1) ◽  
pp. 125-142 ◽  
Author(s):  
MARGARET J. BULL
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiver ◽  
Family Caregiving ◽  
Nursing Practice ◽  
Long Term Care ◽  
Chronically Ill ◽  
Term Care ◽  
Family Caregiver Burden

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.

scholarly journals Disaster Preparedness Among Older Japanese Adults With Long-Term Care Needs and Their Family Caregivers

2016 ◽  
Vol 11 (1) ◽  
pp. 31-38 ◽  
Author(s):  
Tomoko Wakui ◽  
Emily M. Agree ◽  
Tami Saito ◽  
Ichiro Kai
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Disaster Preparedness ◽  
Long Term Care ◽  
Community Support ◽  
The United States ◽  
Great East Japan Earthquake ◽  
Care Needs ◽  
Term Care

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)

scholarly journals The Ethical Dilemma of Safety Versus Self-Determination in Long-Term Care Community Residents During COVID-19

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 160-160
Author(s):  
Rebecca Davis ◽  
Cheryl Monturo ◽  
Maria O'Reilly ◽  
Diana Sturdevant
Keyword(s):  
Long Term Care ◽  
Ethical Reasoning ◽  
Well Being ◽  
The United States ◽  
Lessons Learned ◽  
Self Determination ◽  
Term Care ◽  
Care Community ◽  
Basic Care

Abstract The pandemic profoundly affected the care of older adults in long term care communities (LTCC) across the world. More than one third of pandemic deaths were linked to nursing homes. Most nations and states had strict guidelines on visitation, with many, especially in the United States, totally prohibiting visitation for over an entire year. Well-intentioned measures to protect through isolation caused a profound ethical tension between safety and self-determination. The aim of the project was to examine this dilemma using a case study and the Madison Collaborative Ethical Reasoning in Action Framework. Eight key questions of fairness, outcomes, rights, responsibilities, character, liberty, empathy, and authority were applied in the context of federal and state mandates in the US and Australia. Results highlighted issues of ageism, paternalism vs empathy, regulatory vs family authority, a focus on short-term outcomes while forfeiting long-term outcomes, community responsibilities to the resident trumped individual resident rights, the potential loss of community character in lieu of basic care provision, a loss of personal freedoms, and the emphasis of physical well-being over holistic well-being. The results of this analysis can inform future policy and provide lessons learned for the future.

scholarly journals Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

2021 ◽  
Vol 18 (11) ◽  
pp. 5873
Author(s):  
Thin Nyein Nyein Aung ◽  
Myo Nyein Aung ◽  
Saiyud Moolphate ◽  
Yuka Koyanagi ◽  
Siripen Supakankunti ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Caregiver Burden ◽  
Associated Factors ◽  
Long Term Care ◽  
Respite Care ◽  
Chiang Mai ◽  
Care Needs ◽  
Term Care ◽  
Care Services

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.

scholarly journals Implications of the COVID-19 Pandemic on Adult Day Services

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 110-111
Author(s):  
Katherine Marx ◽  
Laura Gitlin ◽  
Tina Sadarangani
Keyword(s):  
Family Caregivers ◽  
Long Term Care ◽  
The United States ◽  
Care Provision ◽  
Term Care ◽  
Adult Day Services ◽  
The People ◽  
Day Services ◽  
Residential Long Term Care

Abstract Adult day service (ADS) centers serve an important role in care provision for people living with dementia (PLWD). These programs provide socialization, activities, and access to many therapies for PLWD. Additionally, they offer respite to family caregivers so they can work, run errands, and recharge. In March 2020, like much of the nation, ADS sites across the nation were shut down. This left many PLWD and their caregivers without access to the services they depended on to manage day to day care. It also left many sites without a revenue source to pay employees and maintain buildings. Almost a year later, many states have still not reopened ADS and sites that have reopened have done so with a lower census, increased costs, and the lingering fear of a second closure. Much focus has been on the care of older adults in nursing homes or other residential long-term care settings but the challenges of ADS and the people they serve has been mostly ignored. The purpose of this symposium is to highlight the implications of the COVID-19 pandemic on ADS centers. Holly Dabelko-Schoeny will present data gathered from ADS Centers across Ohio. Lauren Parker, will then present data from ADS sites across the United States that examines the effect of COVID-19 on closures and programming during the closures. Katherine Marx will present the effect of ADS closures on family caregivers of persons living with dementia. Finally, Joseph Gaugler will explore this from a policy perspective and provide recommendations moving forward.

scholarly journals The Cost of Isolation

2021 ◽  
Vol 4 ◽  
pp. 1-9
Author(s):  
Sheila A. Boamah ◽  
Vanina Dal Bello-Haas ◽  
Rachel Weldrick
Keyword(s):  
Family Caregivers ◽  
Social Isolation ◽  
Psychological Health ◽  
Long Term Care ◽  
Secondary Analysis ◽  
Significant Risk ◽  
Well Being ◽  
Term Care ◽  
Health And Wellbeing

Background: Recent research has found that family (e.g., informal, unpaid) caregivers to those in long-term care can experience significant risk of social isolation, a harmful social outcome linked to poor health and wellbeing. For many, the COVID-19 global pandemic has been a time marked by challenges that have exacerbated existing risk of social isolation and has likely impacted mental health and wellbeing among caregivers. As such, this paper outlines a protocol to investigate the extent to which the COVID-19 pandemic has impacted the psychological health and well-being of family caregivers of people living in residential long-term care. Methods/Design: A descriptive phenomenological design and photovoice methodology will be used alongside focus groups to capture the perspectives and voices of 15-20 family caregivers. Data will be analyzed thematically, and themes will be developed collaboratively alongside participants. A secondary analysis will be guided by a cumulative inequality lens to consider how the COVID-19 pandemic has differentially affected caregivers. Discussion: The results will fill a significant gap in the existing literature on caregiver isolation during this pandemic and inform the development and/or refinement of caregiver supports.

scholarly journals Navigating COVID-19 and Long-Term Care: Dementia Caregivers' Challenges and Strengths

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 9-9
Author(s):  
Lauren Mitchell ◽  
Elizabeth Albers ◽  
Robyn Birkeland ◽  
Henry Stabler ◽  
Jinhee Cha ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Thematic Analysis ◽  
Long Term Care ◽  
Well Being ◽  
Intervention Trial ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Services And Supports

Abstract Persons with dementia living in long-term care settings have been especially affected by the COVID-19 pandemic, and their family caregivers have had to cope with numerous additional stressors during this time. We conducted 20 semi-structured interviews and gathered open-ended survey data from N=104 caregivers participating in an ongoing intervention trial at the start of the COVID-19 pandemic. Open-ended questions explored the difficulties caregivers have experienced in caring for and supporting a relative in long-term residential care. Caregivers provided their perspectives about services and supports that have facilitated coping with uncertainty, anxiety, and loss during the pandemic, and identified resources and strengths they have found helpful in caring for their relatives. Thematic analysis was used to identify themes reflecting the key challenges and supports that have emerged for caregivers, and to highlight caregivers' recommendations for promoting their and their relatives' well-being during this crisis.

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