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.

scholarly journals Caring for a Relative with Dementia in Long-Term Care During COVID-19

2021 ◽  
Author(s):  
Lauren Mitchell ◽  
Elle Albers ◽  
Robyn Birkeland ◽  
Colleen Peterson ◽  
Henry Stabler ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Long Term Care ◽  
Controlled Trial ◽  
Well Being ◽  
Structured Interviews ◽  
Term Care ◽  
Good Communication ◽  
Lack Of Information ◽  
Survey Responses

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.

scholarly journals Emotional Experiences of Dementia Caregiving Transitions

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 72-72
Author(s):  
Emily Ihara ◽  
Catherine Tompkins ◽  
William Kennedy ◽  
Rhea Vance-Cheng ◽  
Bianca Kwan ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Well Being ◽  
Emotional Experiences ◽  
Dementia Caregivers ◽  
Nursing Facility ◽  
Term Care ◽  
Group Interviews ◽  
Symptom Progression ◽  
Feeling Overwhelmed

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.

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.

Older people’s long-term care experiences during the COVID-19 pandemic in Ghana: a qualitative descriptive study

2021 ◽  
Author(s):  
Kofi Awuviry-Newton ◽  
Jacob Oppong Nkansah ◽  
Abraham Newton ◽  
Kwamina Abekah-Carter
Keyword(s):  
Long Term Care ◽  
Well Being ◽  
Descriptive Study ◽  
Structured Interviews ◽  
Term Care ◽  
Care Policies ◽  
Qualitative Descriptive ◽  
Descriptive Approach ◽  
Southern Ghana

This study explores older people’s long-term care experiences during the COVID-19 pandemic in Ghana. A qualitative descriptive approach employing semi-structured interviews was used to collect data from 15 older people from Southern Ghana. Analysis of interview data resulted in five interrelated themes: (1) sources and type of long-term care; (2) older people’s satisfaction with the long-term care received; (3) changes in their long-term care; (4) feelings of neglect regarding long-term care; and (5) older people’s resilience in long-term care. The sustainability of long-term care depends on the state’s ability to devise innovative long-term care policies and programmes to promote older people’s and their carers’ well-being.

scholarly journals Dementia Caregivers' Trajectories of Well-Being Before and During the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 311-312
Author(s):  
Elizabeth Albers ◽  
Robyn Birkeland ◽  
Colleen Peterson ◽  
Anna Drake ◽  
Joseph Gaugler ◽  
...  
Keyword(s):  
Long Term Care ◽  
Care Facility ◽  
Well Being ◽  
Protective Effects ◽  
Dementia Caregivers ◽  
Term Care ◽  
Long Term Care Facility ◽  
Growth Curve Models ◽  
Counseling Intervention

Abstract Residents of long-term care settings and their family caregivers have been severely impacted by the COVID-19 pandemic. The present mixed-methods study examines trajectories of well-being pre- and post-pandemic onset for caregivers of persons with dementia living in residential long-term care. Participants were taking part in, or had recently completed, an ongoing intervention trial to support families transitioning a relative into long-term care. Beginning in summer 2020, we started assessing caregivers’ COVID-19-related experiences and added three surveys spanning 4-months beyond the 12-month parent study period to capture caregivers' adjustment throughout the pandemic. Using latent growth curve models, we estimated caregivers' (N = 104) trajectories of depressive symptoms, burden, and self-efficacy before and during the pandemic. We also tested whether the counseling intervention had protective effects for participants in the treatment group, and examined moderators including long-term care facility size, care recipient's dementia and health status, and quality of staff interactions.

Sense of community in long-term care: the views of family caregivers of elderly military veterans

2012 ◽  
Vol 25 (3) ◽  
pp. 390-402 ◽  
Author(s):  
Ana Petrovic-Poljak ◽  
Candace Konnert
Keyword(s):  
Family Caregivers ◽  
Sense Of Community ◽  
Long Term Care ◽  
Military Veterans ◽  
Family Members ◽  
Self Report ◽  
Satisfaction With Care ◽  
Structured Interviews ◽  
Term Care

ABSTRACTBackground: Family involvement in long-term care (LTC) is important but it can prove challenging and result in conflict with staff if families do not feel connected to the LTC facility or if they believe that their contributions are undervalued. According to McMillan & Chavis (1986), sense of community (SOC) refers to a feeling of belonging, having influence, having needs met, and having an emotional connection to individuals in a community, and may be particularly essential for family caregivers of military veterans in LTC. This is the first study that evaluates SOC among family caregivers in LTC.Methods: Semi-structured interviews and self-report questionnaires assessing caregiver demographics, caregiving variables, and SOC were administered to 46 family caregivers.Results: Caregivers endorsed a SOC that was positively related to key caregiving variables, such as family adjustment and satisfaction with care, and was negatively related to conflict with staff. Notably, caregivers’ connections to the military community were positively related to SOC in LTC. Multiple regression analyses indicated that satisfaction with care accounted for the most variance in SOC (32.7%).Conclusions: This is the first study that examines SOC among family caregivers of military veterans in LTC, a subgroup of family caregivers with unique histories and needs. Although there are measures designed to assess family members’ level of satisfaction with different facets of LTC, SOC provides unique information about whether family members feel part of the LTC community as valued partners in care. SOC is an important yet understudied construct that could contribute substantially to our understanding of family-focused care.

scholarly journals The perceptions of workers in a long-term care institution for older adults regarding the family

2014 ◽  
Vol 23 (4) ◽  
pp. 971-978 ◽  
Author(s):  
Naiana Oliveira dos Santos ◽  
Margrid Beuter ◽  
Nara Marilene Oliveira Girardon-Perlini ◽  
Lisiane Manganelli Girardi Paskulin ◽  
Marinês Tambara Leite ◽  
...  
Keyword(s):  
Older Adults ◽  
Long Term Care ◽  
Well Being ◽  
The Elderly ◽  
Structured Interviews ◽  
Term Care ◽  
Care Institution ◽  
The Family

This study aimed to investigate the perception of the workers in a Long-Term Care Institution for the Elderly regarding the families of the older adults in the institution. It is qualitative research, undertaken with 16 workers of the multidisciplinary team. Data collection occurred in February-June 2012, through semi-structured interviews. The technique used for treatment of the data was thematic analysis. The results indicate that the family members visit the Long-Term Care Institution for the Elderly rarely, with commemorative dates being the main occasions in which they appear. The workers evidenced some situations of abandonment, in which the family does not visit the older adult even when called. They understand that nobody can substitute the role of the family, as it is the reference for the older adults. Therefore, spending time with the family can positively influence the well-being of the older adults in institutions.

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 Stigmatization and the Experience of Informal Dementia Caregivers in Nigeria

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 277-277
Author(s):  
Candidus Nwakasi ◽  
Kate de Medeiros ◽  
Darlingtina Esiaka
Keyword(s):  
Long Term Care ◽  
Informal Caregiving ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Nigerian Women ◽  
Increased Risk ◽  
Qualitative Descriptive ◽  
The Impact

Abstract There is no formal word for dementia in Nigeria. Instead, some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may result in stigmatization of people living with dementia and their families. With Nigeria’s rapid aging, increased risk of dementia, and lack of formal long-term care, this study focused on the impact of stigma on the caregiving experiences of Nigerian women. This exploration is significant as adult females in Nigeria are the pillar of informal caregiving in the country. The study employed a qualitative descriptive method. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Anambra, Nigeria. Data were then transcribed, coded and analyzed for themes. Afterwards, focus groups of 21 adult Nigerians residing in Ohio, US, were conducted to offer more contextual insight on the findings. The three major themes identified were: 1) negative views of dementia symptoms (e.g., witchcraft, madness), 2) caregiving protects against stigmatization (e.g., by keeping family members out of sight), and 3) stigma and caregiving support such as adult children abandoning parents with dementia because of the stigma associated with dementia. Given the overwhelming presence of stigma in all aspects of dementia to include dementia caregiving, results point to the critical need for better strategies to help strengthen informal caregiving in Nigeria. This includes culturally appropriate dementia education for families and caregivers, and formal long-term care policies that include care support in a rapidly aging Nigeria.

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