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 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.

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.

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 IDENTIFYING PREDICTORS OF GUILT FOLLOWING PLACEMENT OF FAMILY MEMBER WITH DEMENTIA INTO RESIDENTIAL LONG-TERM CARE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S486-S487
Author(s):  
Tamara L Statz ◽  
Colleen M Peterson ◽  
Robyn Birkeland ◽  
Aneri Shah ◽  
Kobe Perez ◽  
...  
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Long Term Care ◽  
Controlled Trial ◽  
Adult Child ◽  
Spousal Caregivers ◽  
Term Care ◽  
The Impact ◽  
Residential Long Term Care

Abstract Family caregivers of persons with dementia experience guilt for various reasons when placing their family member into residential long-term care (RLTC). Research has shown a relationship between guilt and overall caregiver burden; however, literature on predictors of guilt related to caregiving following RLTC placement is limited. The Residential Care Transition Module (RCTM) provides counseling and psychoeducation to family caregivers who have recently moved their family member with Alzheimer’s disease or a related dementias into RLTC. This semi-structured intervention provides counseling on various topics including guilt, grief, and family dynamics. Using treatment group data (N=87) from the parent RCTM randomized controlled trial, we identified the impact of caregiver status (i.e., adult child vs spousal caregivers), sense of caregiver competence, and relationship closeness on baseline measures of guilt status and magnitude. Preliminary analyses showed that adult child status was associated with greater prevalence of guilt (37.5%) compared to spousal caregivers (26.7%). In addition, qualitative case notes were coded to identify common themes of experiences of guilt to inform practice. Examples include: Guilt related to no longer being able to care for the family member at home; not meeting self-dictated expectations (e.g., not visiting or staying long enough); and feeling guilted into being a caregiver in the first place. The current analyses aim to help practitioners better predict risk for placement-related guilt and highlight specific issues practitioners should consider to help mitigate such feelings. Specific opportunities for intervention are discussed.

scholarly journals “A Crazy Roller Coaster at the End”: A Qualitative Study of Death Preparedness With Caregivers of Persons With Dementia

2020 ◽  
Vol 6 ◽  
pp. 237796082094911
Author(s):  
Pamela Durepos ◽  
Jenny Ploeg ◽  
Tamara Sussman ◽  
Noori Akhtar-Danesh ◽  
Sharon Kaasalainen
Keyword(s):  
End Of Life ◽  
Long Term Care ◽  
Life Experiences ◽  
Healthcare Providers ◽  
Well Being ◽  
Influential Factors ◽  
Structured Interviews ◽  
Term Care ◽  
Core Concepts

Introduction Caregivers of persons with dementia experience challenges that can make preparing for end-of-life particularly difficult. Feeling prepared for death is associated with caregiver well-being in bereavement and is promoted by strategies supporting a palliative approach. Further conceptualization of caregiver preparedness for death of persons with dementia is needed to guide the practice of healthcare providers and to inform development of a preparedness questionnaire. Objectives We aimed to: 1) explore the end-of-life experiences of caregivers of persons with dementia to understand factors perceived as influencing preparedness; and 2) identify the core concepts (i.e., components), barriers and facilitators of preparedness for death. Methods This study used an interpretive descriptive design. Semi-structured interviews were conducted with sixteen bereaved caregivers of persons with dementia, recruited from long-term care homes in Ontario. Data was analyzed through reflexive thematic analysis. Findings Four themes were interpreted including: ‘A crazy rollercoaster at the end’ which described the journey of caregivers at end-of-life. The journey provided context for the development of core concepts (i.e., components) of preparedness represented by three themes: ‘A sense of control, ‘Doing right’ and ‘Coming to terms’. Conclusion The study findings serve to expand the conceptualization of preparedness and can guide improvements to practice in long-term care. Core concepts, facilitators and influential factors of preparedness will provide the conceptual basis and content to develop the Caring Ahead: Preparing for End-of-Life with Dementia questionnaire.

scholarly journals Mental well‐being of staff in long‐term care facilities at risk

2021 ◽  
Author(s):  
Chiaki Ura ◽  
Tsuyoshi Okamura ◽  
Akinori Takase ◽  
Masaya Shimmei ◽  
Yukan Ogawa
Keyword(s):  
At Risk ◽  
Long Term Care ◽  
Well Being ◽  
Term Care ◽  
Care Facilities ◽  
Mental Well Being
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