scholarly journals The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

2021 ◽  
Vol 7 ◽  
pp. 233372142110433
Author(s):  
Marissa Stubbs ◽  
Ishtar Govia ◽  
Janelle N. Robinson ◽  
Rochelle Amour ◽  
Emily Freeman
Keyword(s):  
Family Caregivers ◽  
Economic Status ◽  
Direct Costs ◽  
Family Carers ◽  
Face To Face ◽  
Care Recipients ◽  
Health Fairs ◽  
Depth Interview ◽  
Ethical Approval ◽  
Cross National

This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers ( N = 19). Participants in this study were the 10 active family caregivers ( n F = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers.

scholarly journals ACTIONS TAKEN BY STROKE FAMILY CAREGIVERS TO POTENTIALLY PREVENT SURVIVORS’ HOSPITAL READMISSIONS IN CHINA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S288-S288
Author(s):  
Hairui Yu ◽  
Jennifer Perion ◽  
Victoria Steiner ◽  
Linda Pierce
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Hospital Readmissions ◽  
Structured Interview ◽  
Stroke Survivors ◽  
Physically Active ◽  
Face To Face ◽  
Care Recipients ◽  
Qualitative Descriptive ◽  
Male Caregivers

Abstract Stroke is a leading cause of death in China; its level of burden on the Chinese population is greater than the global average. Family caregiving plays an essential role in prevention and management of stroke. The purpose of this qualitative descriptive study was to identify actions family caregivers of stroke survivors in China take to prevent hospital readmissions. Using purposive sampling, adult family caregivers (n=10) were enrolled from Huai’an city in Jiangsu province who provided care for a survivor in community settings for six months or longer. Caregivers were asked questions in a face-to-face, semi-structured interview with content validity established by experts in the field. Audiotaped interviews were transcribed/translated into English and the narrative data analyzed using Colaizzi’s approach to content analysis. Seven female and three male caregivers with an average age of 55 years indicated actions that comprised six themes. These themes are: 1) Encouraging care recipients to be physically active, 2) Balancing a healthy diet with pleasurable foods, 3) Monitoring the physical health of care recipients and preventing injuries, 4) Developing personal and intimate strategies to motivate care recipients, 5) Providing emotional support and maintaining optimism, and 6) Gaining knowledge through relationships with doctors but desiring communication with other caregivers. Recognizing these actions taken by stroke family caregivers may improve education programs aimed at preventing hospital readmissions and be applicable throughout the world. Findings may also guide healthcare professionals who can advocate with Chinese local, provincial, and central health commissions on stroke survivors and their family caregivers’ behalf.

scholarly journals Safety Accidents and Coping Experiences among Family Caregivers Caring for Community-Dwelling Persons Living with Dementia

2021 ◽  
Vol 23 (4) ◽  
pp. 352-360
Author(s):  
Ji Yeon Lee ◽  
Ha Rim Lee ◽  
Kyung Hee Lee
Keyword(s):  
Family Caregivers ◽  
Qualitative Content Analysis ◽  
Community Dwelling ◽  
Information And Communications Technology ◽  
Face To Face ◽  
Community Environment ◽  
Care Services ◽  
Care Recipients ◽  
Safety Accident ◽  
And Coping

Purpose: The purpose of this study was to understand experiences in safety accidents and coping among family caregivers of persons living with dementia.Methods: Data were collected through face-to-face interviews with 10 family caregivers who are the main caregivers of community-dwelling persons living with dementia. Inductive qualitative content analysis was conducted to reveal themes.Results: Three major themes emerged in this study: 1) various safety accident experiences, 2) coping with safety accidents, and 3) concern for the prevention of safety accidents. Family caregivers experienced various risks when caring for their care recipients with reduced cognitive function and trying to cope with a tailored method for persons living with dementia. However, family caregivers eventually recognized that none of the methods were perfect for preventing dangers and looked forward to the emergence of new methods to ensure a safe environment.Conclusion: Dementia care services and tailored information and communications technology (ICT) should be provided to promote the safety of persons living with dementia and their family caregivers in the community environment.

scholarly journals Male Family Caregivers’ Well-Being: Balancing Work and Care for Parents in Japan

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 351-352
Author(s):  
Hiroko Umegaki-Costantini
Keyword(s):  
Family Caregivers ◽  
Academic Research ◽  
Well Being ◽  
Care Provision ◽  
Family Carers ◽  
Employment System ◽  
Care Recipients ◽  
Appropriate Care ◽  
Male Caregivers ◽  
Care Practices

Abstract Despite substantial discussions on caregivers in policy making and academic research, a rapidly emerging new group of middle-aged male family caregivers who often also work are largely understudied. Inadequate understanding of male family caregivers jeopardises not only themselves but also care recipients, other family members and society: better care for older people depends on caregivers’ well-being. I address this gap by understanding how and why gender affects male family carers’ choices of care practices, and how male caregivers as ‘gendered beings’ sustain their well-being while reconciling work and care for their parents. Through in-depth-qualitative narrative interviews based on social anthropology of everyday life with 23 male working family carers in Tokyo in 2019, I find that men select care practices with priority given to familiar tasks deemed appropriately masculine. To perform ‘appropriate’ care for their parents, such men tend to approach care as they do their ‘work’: they ‘work-nise’ care. Such a gendered approach to care practices has important implications for addressing gender in public interventions. Also, I find that for male family working carers, achieving well-being does not mean balance in work, care and family. Rather, for them a source of well-being is from fulfilling filial duty as sons, which, however, requires making an appropriate effort and devoting themselves to some extent to support their parent(s). Thus, such men need to be embedded in a care and employment system that enables them to achieve such well being that, in turn, significantly impacts their care provision.

scholarly journals Impact of Pain and Discomfort on the Lives of Cognitively Impaired Older Adults and Their Informal Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-787
Author(s):  
Hyunjin Noh
Keyword(s):  
Older Adults ◽  
Cognitively Impaired ◽  
Community Settings ◽  
Adult Age ◽  
Face To Face ◽  
Disease Trajectory ◽  
Care Recipients ◽  
Home Based ◽  
The Impact ◽  
Future Program

Abstract This qualitative study explored the impact of pain and discomfort on the lives of cognitively impaired older adults and their caregivers from the caregiver perspective. Forty-three individuals of age 19+, who identified themselves as primary caregiver to a chronically or seriously ill older adult (age 50+) with cognitive impairment, such as Alzheimer’s Disease and Related Dementia, were recruited at various community settings. Individual, face-to-face interviews were conducted to ask participants how they thought their care-recipient’s pain and discomfort affected the care-recipient’s and the caregiver’s life respectively. Inductive, thematic analysis of interview transcripts revealed several key themes: compromised mobility, limited social interaction or activities, and depressive symptoms in both care-recipients and caregivers; aggravated cognitive decline in care-recipients; and poorer physical health in caregivers. Participants wanted more information on the disease trajectory and available services, particularly home-based therapies and social activities for care-recipients, which provides future program/practice implications.

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

scholarly journals The Challenges of Recruiting and Retaining Dyads of Hospitalized Persons With Dementia and Their Family Carers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 758-758
Author(s):  
Marie Boltz ◽  
Ashley Kuzmik
Keyword(s):  
Older Adults ◽  
Clinical Trial ◽  
Family Caregivers ◽  
Hospital Environment ◽  
Family Carers ◽  
Retention Strategies ◽  
Recruitment And Retention ◽  
Team Meetings ◽  
Partnership Model ◽  
Cluster Randomized

Abstract Persons with dementia (PWD) have high rates of hospitalization, and along with their family caregivers (FCGs), commonly experience negative hospital experiences and outcomes. The recruitment and retention challenges encountered in an ongoing cluster randomized clinical trial in PWDs and FCGs are described. The trial tests the efficacy of a nurse-FCG partnership model that aims to improve: 1) the physical and cognitive recovery in hospitalized PWD, and 2) FCG preparedness and anxiety. Recruitment and retention challenges, identified in team meetings and extracted from team documentation,.include factors in the hospital environment, the PWD, and FCGs. Strategies that address these challenges include careful pre-planning and preparation with the site, strong communication with dyads, and honoring preferences for communication. The recruitment and retention of acutely ill older adults with dementia and FCGs can pose a challenge to investigators and threaten the validity of findings. Recruitment and retention strategies that help improve validity are described

scholarly journals Positive Aspects of Caregiving Among Family Caregivers of Individuals With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 358-359
Author(s):  
Mary Grace Asirot ◽  
Anna Papazyan ◽  
Yeonsu Song
Keyword(s):  
Mental Health ◽  
Sleep Quality ◽  
Family Caregivers ◽  
Care Recipient ◽  
Related Factors ◽  
Negative Experience ◽  
Care Recipients ◽  
Positive Aspects Of Caregiving ◽  
Positive Caregiving ◽  
And Behavior

Abstract Traditionally, caregiving for individuals with dementia has been viewed as a negative experience. Understanding positive aspect of caregiving and related factors is important to improve health among family caregivers. We analyzed baseline data from an ongoing dyadic sleep education trial for individuals with dementia and their caregivers (N=21 dyads; mean age 70.8± 11.1 for caregivers, 80.5± 8.3 for care-recipients). The Positive Aspects of Caregiving (PAC 9-item) was used to assess subjective satisfaction with caregiving. Other measures included Zarit Burden Interview (ZBI), SF-12 Health Survey (SF-12v2), Revised Memory and Behavior Problems Checklist (RMBPC), and Pittsburgh Sleep Quality Index (PSQI). Pearson correlations and t-tests were calculated for analyses. Caregivers most frequently endorsed that caregiving enabled them to appreciate life more (n=16 agreed a lot). Caregivers who began providing care within the first few months of the care-recipient needing care (n=16) had greater positive aspects of caregiving than those who started providing care sometime later (n=5) (36.37±7.33 versus 25.8±8.29, p=0.01). Caregivers with higher PAC scores had lower ZBI score (r=-0.49, p=0.02), better mental health on the SF-12v2 (r=0.53, p=0.01), less distress related to care-recipient behaviors on the RMBPC (r=-0.50, p=0.02), and lower PSQI subscale (perceived sleep quality) score (r= -0.46, p=0.04). Findings suggest that higher positive caregiving experience was associated with better mental health and sleep quality, and less burden and distress from the care-recipients behaviors. More research is needed to better understand this relationship and to determine possible interventions to increase positive aspects of caregiving.

Caring for Others: Internet Health Care Support Intervention for Family Caregivers of Persons with Alzheimer's, Stroke, or Parkinson's Disease

2005 ◽  
Vol 86 (3) ◽  
pp. 375-383 ◽  
Author(s):  
Elsa Marziali ◽  
Peter Donahue ◽  
Gillian Crossin
Keyword(s):  
Family Caregivers ◽  
Group Process ◽  
Psychosocial Support ◽  
Clinical Intervention ◽  
Group Interactions ◽  
Face To Face ◽  
Ethical Implications ◽  
Response Data ◽  
Participant Response

The purpose of the project was to emulate face-to-face psychosocial support group process in an Internet videoconferencing environment and explore the benefits for 34 family caregivers of persons with neurodegenerative disease. Caregivers were provided with computer equipment and trained to access a password-protected Web site. Using videoconferencing software, each group of 6 members met with a facilitator online weekly for 10 weeks. Each caregiver was interviewed at 6-month follow-up. Participant response data were generated through qualitative analysis of group process and follow-up interviews. The analysis showed that the virtual group process closely paralleled face-to-face group interactions. At follow-up, 90% of the caregivers reported that the online group experience had been “very” or “overall” positive and that the group had helped them cope with the stresses of caregiving. The professional and ethical implications of providing a clinical intervention using the Internet are discussed.

Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

2017 ◽  
Vol 30 (3) ◽  
pp. 375-384 ◽  
Author(s):  
Ching-Lin Wang ◽  
Li-Min Kuo ◽  
Yi-Chen Chiu ◽  
Hsiu-Li Huang ◽  
Huei-Ling Huang ◽  
...  
Keyword(s):  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Family Caregivers ◽  
Caregiver Burden ◽  
Family Caregiving ◽  
Healthcare Providers ◽  
Theory Approach ◽  
Face To Face ◽  
The Family ◽  
The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

scholarly journals Validating the Revised Scale for Caregiving Self-Efficacy: A Cross-National Review

2018 ◽  
Vol 59 (4) ◽  
pp. e325-e342 ◽  
Author(s):  
Ann M Steffen ◽  
Dolores Gallagher-Thompson ◽  
Katherine M Arenella ◽  
Alma Au ◽  
Sheung-Tak Cheng ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Self Efficacy ◽  
Discriminant Validity ◽  
Cognitive Theory ◽  
Reliability And Validity ◽  
Validity Data ◽  
Research And Practice ◽  
Validity Indices ◽  
English Translations ◽  
Cross National

AbstractBackground and ObjectivesThis article reviews an instrument used in cross-national research with dementia family caregivers—the Revised Scale for Caregiving Self-Efficacy (RSCSE). Although the RSCSE has been translated into multiple languages, few studies have examined scale performance across samples. We examine congruence of psychometric, reliability, and validity data to inform research and practice.MethodsWe conducted citation searches using Scopus, Google Scholar, Web of Science, and PsycINFO. Identified dementia caregiving studies cited the original RSCSE article and described results of English and/or non-English translations of the scale.ResultsPeer-reviewed published studies (N = 58) of dementia family caregivers included data for Arabic, Chinese, English, French, Italian, and Spanish translations of the RSCSE; the majority (72%) reported use of non-English translations. Studies utilizing confirmatory factor analytic approaches reported findings consistent with the original development study. Internal consistency, convergent/discriminant validity, and criterion validity indices were congruent across diverse cross-national caregiving samples assessed with different translations. Data supported the RSCSE’s sensitivity to change following specific psychosocial caregiving interventions.DiscussionThe reliability and validity of different translations of the RSCSE support continued use with cross-national samples of dementia family caregivers. Limitations of the scale point to the need for further self-efficacy measurement development within caregiving domains. Consistent with Bandura’s discussion of social cognitive theory in cultural contexts, personal agency for caregiving challenges remains generalizable to cross-national populations. This review discusses the implications for cross-cultural research and practice.

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