scholarly journals The Cost of Isolation

2021 ◽  
Vol 4 ◽  
pp. 1-9
Author(s):  
Sheila A. Boamah ◽  
Vanina Dal Bello-Haas ◽  
Rachel Weldrick

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.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 942-943
Author(s):  
Shannon Freeman ◽  
Aderonke Abgoji ◽  
Alanna Koopmans ◽  
Christopher Ross

Abstract A consequence of the strict visitor restrictions implemented by many Long-term Care Facilities (LTCFs), during the COVID-19 pandemic, was the exacerbation of loneliness and social isolation felt by older adult residents. While there had been a shift by some persons to utilize digital solutions to mitigate the effects of the imposed social isolation, many facilities did not have sufficient information regarding available solutions to implement institutional strategies to support social connectedness through digital solutions. To support our partners in evidence-based policy-making we conducted a scoping review to identify existing virtual technology solutions, apps, and platforms feasible to promote social connectedness among persons residing in a long-term care facility context during times of lockdown such as experienced during the COVID-19 pandemic. Initial identification of relevant literature involved a combination of keywords and subject headings searches within 5 databases (PubMed, CINAHL EBSCO, PsychINFO EBSCO, Embase OVIDSP, and Web of Science ISI). DistillerSR was used to screen, chart and summarize the data. There is growth in the availability of technologies focused on promoting health and well-being in later life for persons in long-term care facilities however a gap remains in widespread uptake. We will describe the breadth of technologies identified in this review and discuss how they vary in utility in smaller scale facilities common in rural areas. Of the technologies that can be used to mitigate the impacts of social isolation felt by long-term care residents, many “solutions” depend on stable highspeed internet, which remains a challenge in rural and northern areas.


2021 ◽  
Vol 26 (8) ◽  
pp. 781-793
Author(s):  
Alison Pattison ◽  
Elissa Torres ◽  
Lori Wieters ◽  
Jennifer G. Waldschmidt

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.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 9-9
Author(s):  
Lauren Mitchell ◽  
Elizabeth Albers ◽  
Robyn Birkeland ◽  
Henry Stabler ◽  
Jinhee Cha ◽  
...  

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.


2021 ◽  
Author(s):  
Lauren Mitchell ◽  
Elle Albers ◽  
Robyn Birkeland ◽  
Colleen Peterson ◽  
Henry Stabler ◽  
...  

Objectives: The COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19.Design: This study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (N=125) and semi-structured interviews with a subset of the sample (N=20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19. Setting and Participants: Participants included 125 family caregivers of persons with dementia living in residential LTC. Methods: Thematic analysis was used to identify themes capturing caregivers' experiences.Results: In addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives.Conclusions and Implications: This qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.


Author(s):  
Chiaki Ura ◽  
Tsuyoshi Okamura ◽  
Akinori Takase ◽  
Masaya Shimmei ◽  
Yukan Ogawa

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
I Fronteira ◽  
J Simoes ◽  
G Augusto

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.


2020 ◽  
Author(s):  
Candace L Kemp

Abstract The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents’ daily lives and care routines. I argue that classifying family as “visitors” rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 72-72
Author(s):  
Emily Ihara ◽  
Catherine Tompkins ◽  
William Kennedy ◽  
Rhea Vance-Cheng ◽  
Bianca Kwan ◽  
...  

Abstract Research indicates that family caregivers of individuals living with dementia are at risk for high levels of stress, depression, physical health declines, and illness. The health and well-being of family caregivers is critically important to a long-term care system that is dependent on them to continue their caregiving role. In-depth individual and focus group interviews of 16 dementia caregivers were conducted to explore the emotional experiences of caregiving stress during transitions of individuals living with dementia to a higher level of care. Data were transcribed verbatim, checked for accuracy, and analyzed by at least two members of the research team. Line-by-line coding, memo writing, and constant comparative analyses were conducted until redundancy, when no new themes were discovered. Caregivers described various levels of feeling overwhelmed and symptom progression leading to the move to a nursing facility. Social isolation featured prominently, with caregivers describing a gradual erosion of their social network and socializing opportunities because of their caregiving responsibilities and the care recipient’s deteriorating symptoms. Caregivers described feeling isolated and stigmatized. One caregiver said, “…you’re being less invited, you’re being less involved. People don’t know how to deal with you…I don’t know if they become the pariah or I become the pariah.” At the same time, maintaining social connections and having help with caregiving featured prominently in the coping mechanisms described. The health of caregivers is equally as important as the person living with dementia, and programs, interventions, and resources should be a priority for supporting families through transitions.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S161-S161
Author(s):  
Rebecca L Mauldin ◽  
Kathy Lee ◽  
Antwan Williams

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.


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