scholarly journals COVID-19 Pandemic-Related Distress and Self-Efficacy to Manage Dementia Care Among Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 483-483
Author(s):  
Lena Thompson ◽  
Haley Schneider ◽  
Maria Donohoe ◽  
Elizabeth Saathoff ◽  
Lubna Hossain ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Self Efficacy ◽  
Process Model ◽  
Service Providers ◽  
Dementia Care ◽  
Coping Resources ◽  
Telephone Interviews ◽  
Distress Level ◽  
Care Assistance ◽  
At Home

Abstract The COVID-19 pandemic posed numerous challenges to persons with dementia (PWD) and their caregivers. To better understand these challenges, we conducted a mixed methods study analyzing data from interviews with family caregivers participating in an ongoing intervention study. Telephone interviews were conducted with 58 family caregivers of PWD diagnosed within the past two years. Participants reported self-efficacy (SE) using a 5-item scale (e.g. handle problems with memory, keep PWD at home) and rated pandemic-related distress on a 1-10 scale. They also qualitatively described effects of the pandemic on care recipients and themselves. Qualitative data were coded and organized by concepts from the Stress Process Model. Distress level ranged from 1-9 and was negatively associated with SE to manage dementia care (r=-316, p=0.036). Caregivers described distress related to primary stressors such as loss of services (respite care, assistance with daily tasks) and resistance to mask wearing by PWD due to behavioral symptoms. Secondary stressors included managing work or supervising children’s schoolwork at home while providing care. Caregivers most often expressed distress related to inability to access coping resources such as family or friends, and worried that PWD were not able to rely on their support systems. At all reported levels of distress, inability to interact with members of support networks (e.g., family, friends, service providers) was identified as most distressing. This was compounded by lower self-efficacy to manage dementia care. Efforts to decrease pandemic impacts must consider strategies to safely keep PWD and caregivers connected with family, friends, and service providers.

scholarly journals USING A STRESS PROCESS MODEL TO EXAMINE RACIAL DIFFERENCES IN CAREGIVER WELL-BEING AND HEALTH

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S487-S487
Author(s):  
Adrian Badana ◽  
William E Haley
Keyword(s):  
United States ◽  
Family Caregivers ◽  
Racial Differences ◽  
Process Model ◽  
The United States ◽  
Dementia Care ◽  
Stress Process ◽  
Stress Process Model ◽  
Dementia Caregivers ◽  
Relationship Type

Abstract Current research must utilize nationally-representative samples of older adults and their family caregivers to accurately reflect the growing diversity of the United States. This study aims to use a stress process model to examine potential racial differences in caregiving in a population-based sample of 844 White and 389 Black family caregivers in the United States. We conducted 3 x 2 x 2 (relationship type x race x dementia care status) factorial ANOVAs to examine potential differences in caregiving stressors, appraisals, resources, and mental and physical health outcomes among primary family caregivers. Results indicated significant racial differences in caregiving on several stress process measures. Although Black caregivers reported more caregiving stressors, compared to White caregivers, they tended to report more positive appraisals of caregiving and more caregiving resources. Dementia caregivers tended to report greater caregiving stressors and worse measures of appraisal compared to non-dementia caregivers. There was a significant two-way interaction among relationship type and dementia care status for the caregiving stressor, hours of care. A stress process model can allow researchers to investigate various factors associated with racial differences in caregiving.

scholarly journals Dementia Caregiving During the “Stay-at-Home” Phase of COVID-19 Pandemic

2020 ◽  
Author(s):  
Jyoti Savla ◽  
Karen A Roberto ◽  
Rosemary Blieszner ◽  
Brandy Renee McCann ◽  
Emily Hoyt ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Stress Responses ◽  
Well Being ◽  
Role Overload ◽  
Transactional Model ◽  
Dementia Caregivers ◽  
Telephone Interviews ◽  
Primary Appraisal ◽  
Secondary Appraisal ◽  
At Home

Abstract Objective The objective of this study was to assess family caregivers’ primary appraisal of stressors related to COVID-19 stay-at-home orders, secondary appraisal of resources and support availability, and use of coping strategies as predictors of perceived role overload during the stay-at-home phase of the pandemic. Method Telephone interviews with 53 family caregivers of persons with dementia from rural Virginia 2 weeks after enactment of the governor’s stay-at-home order using structured and open-ended questions were conducted. Results Caregivers who were more concerned about the COVID-19 pandemic were at greater odds of experiencing high role overload than those who recognized positive aspects of the pandemic, as were those who received insufficient support from family and friends. Discussion Use of the transactional model of stress responses yielded important insights about families coping with dementia. Caregivers’ perceptions of the pandemic’s impact varied, with differential effects on their well-being.

scholarly journals Investigating the Factors That Influence Self-Efficacy Among Home Care Workers Providing Dementia Care

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 434-434
Author(s):  
Marie Savundranayagam ◽  
Anaya Ahmad ◽  
Shalane Basque
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Work Experience ◽  
Self Efficacy ◽  
Professional Competence ◽  
Quality Care ◽  
Dementia Care ◽  
The Self ◽  
Personal Support ◽  
Home Care Workers

Abstract The self-efficacy beliefs of home care personal support workers (PSWs) play a crucial role in their professional competence and subsequent provision of quality care. Understanding the factors that influence self-efficacy of PSWs is critical to ensuring their job satisfaction and retention, and ultimately improving the quality of care provided to home care clients. Currently, there is a lack of literature exploring the factors influencing self-efficacy among home care PSWs who care for clients with dementia. Accordingly, the purpose of this study was to investigate the sources of self-efficacy for home care PSWs. Conventional content analysis of interviews with 15 home care PSWs yielded six categories of sources influencing self-efficacy: insufficient client information provided by employers, lack of supportive communication by employers, restriction of PSWs’ discretion and autonomy by employers, insufficient practical dementia-specific training, sufficient work experience with clients with dementia, and feedback from family caregivers. These findings call for a multi-pronged approach to enhance the self-efficacy of PSWs. In particular, these findings offer specific areas of improvement for employers on how to best support their PSWs. They also highlight the significant role of dementia-specific education and training for PSWs regardless of their experience in the field. Finally, the findings emphasize the importance of family caregivers in the home care context. Taken together, the study’s findings offer insights on how to best support PSWs and ensure stability in the dementia care workforce.

scholarly journals Promoting Independence Through quality dementia Care at Home (PITCH): a research protocol for a stepped-wedge cluster-randomised controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Steven Savvas ◽  
Anita M. Y. Goh ◽  
Frances Batchelor ◽  
Colleen Doyle ◽  
Erica Wise ◽  
...  
Keyword(s):  
Home Care ◽  
Service Providers ◽  
Care Service ◽  
Controlled Trial ◽  
Cluster Randomised Controlled Trial ◽  
Dementia Care ◽  
Care Staff ◽  
Stepped Wedge ◽  
Cluster Randomised ◽  
At Home

Abstract Background Home care service providers are increasingly supporting clients living with dementia. Targeted and comprehensive dementia-specific training for home care staff is necessary to meet this need. This study evaluates a training programme delivered to care staff (paid personal carers) of clients living with dementia at home. Methods This study is a pragmatic stepped-wedge cluster-randomised controlled trial (SW-CRT). Home care workers (HCWs) from seven home care service providers are grouped into 18 geographical clusters. Clusters are randomly assigned to intervention or control groups. The intervention group receives 7 h of a dementia education and upskilling programme (Promoting Independence Through quality dementia Care at Home [PITCH]) after baseline measures. The control group receives PITCH training 6 months after baseline measures. This approach will ensure that all participants are offered the program. Home care clients living with dementia are also invited to participate, as well as their family carers. The primary outcome measure is HCWs’ sense of competence in dementia care provision. Discussion Upskilling home care staff is needed to support the increasing numbers of people living with dementia who choose to remain at home. This study uses a stepped-wedge cluster-randomised trial to evaluate a training programme (PITCH) for dementia care that is delivered to front-line HCWs. Trial registration anzctr.org.au; ACTRN12619000251123. Registered on 20 February 2019.

scholarly journals Caregiver decision-making concerning involuntary treatment in dementia care at home

2021 ◽  
pp. 096973302110417
Author(s):  
Vincent RA Moermans ◽  
Angela MHJ Mengelers ◽  
Michel HC Bleijlevens ◽  
Hilde Verbeek ◽  
Bernadette Dierckx de Casterle ◽  
...  
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Dementia Care ◽  
Stressful Situation ◽  
Involuntary Treatment ◽  
University Hospitals ◽  
Structured Interviews ◽  
Design Data ◽  
Care At Home ◽  
At Home

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations.

scholarly journals Feasibility of In-home Saliva Collection of Cortisol and DHEA-S as a Biomarker of Stress in Dementia Care Dyads

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 1014-1014
Author(s):  
Azita Emami ◽  
Gabriella Engström ◽  
Hyejin Kim
Keyword(s):  
Family Caregivers ◽  
Stress Measurement ◽  
Dehydroepiandrosterone Sulfate ◽  
Dementia Care ◽  
Adverse Outcomes ◽  
Pharmacological Intervention ◽  
Educational Materials ◽  
Saliva Collection ◽  
Biomarker Research ◽  
At Home

Abstract Dementia afflicts affected individuals and their family caregivers worldwide. Although a non-pharmacological intervention has been recommended as a first-line approach to minimize adverse outcomes (e.g., stress) in dementia care dyads (persons with dementia [PWD] and their family caregivers), most evaluations of such interventions have relied on subjective (e.g., self- or proxy-report) rather than objective (e.g., biomarkers) measures. We aimed to explore the feasibility of saliva collection of cortisol and dehydroepiandrosterone sulfate (DHEA-S) as a non-intrusive method in dementia care dyads. Dementia care dyads living at home were recruited from the memory center in Sweden. Prior to the saliva collection, participants received a one-hour education session with a hands-on demonstration led by a trained study coordinator. Participants were instructed to collect saliva three times (two for morning, one for evening)/day, five days/week for eight consecutive weeks. Out of 32 care dyads (32 PWD and 32 family caregivers), 24 (75.0%) completed the saliva collection. On average, 105.5 (87.92%) and 105.9 (88.25%) samples were collected from PWD and family caregivers during eight weeks. There were no statistically significant differences (p>0.05) in the average number of saliva samples (i.e., total samples, morning or evening samples) between PWD and family caregivers. The findings of this pilot study showed that saliva collection of cortisol and DHEA-S as a stress measurement was feasible in dementia care dyads living at home. Robust and person-centered procedures, tailored educational materials, and effective communication with dementia care dyads should be considered in future biomarker research on stress in dementia care dyads.

Healing experience for family caregivers after an intensive care unit death

2019 ◽  
pp. bmjspcare-2018-001561 ◽  
Author(s):  
Susan DeSanto-Madeya ◽  
Dan Willis ◽  
Julie McLaughlin ◽  
Aristotle Boslet
Keyword(s):  
Intensive Care Unit ◽  
Intensive Care ◽  
Family Caregivers ◽  
Phenomenological Study ◽  
Healthcare Providers ◽  
Loved One ◽  
Hermeneutic Phenomenological ◽  
Telephone Interviews ◽  
Hermeneutic Phenomenological Study ◽  
Purposive Sample

ObjectivesFamily caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU.MethodsSemi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews.ResultsSeven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one’s decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one’s own.ConclusionBy identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver’s bereavement.

scholarly journals Caregivers’ Experiences Regarding Training and Support in the Post-Acute Home Health-Care Setting

2019 ◽  
Vol 7 (4) ◽  
pp. 561-569
Author(s):  
Jo-Ana D Chase ◽  
David Russell ◽  
Meridith Rice ◽  
Carmen Abbott ◽  
Kathryn H Bowles ◽  
...  
Keyword(s):  
Older Adults ◽  
Health Care ◽  
Family Caregivers ◽  
Learning Strategies ◽  
Home Health Care ◽  
Home Health ◽  
Barriers To Learning ◽  
Telephone Interviews ◽  
Qualitative Descriptive ◽  
Training And Support

Background: Post-acute home health-care (HHC) services provide a unique opportunity to train and support family caregivers of older adults returning home after a hospitalization. To enhance family-focused training and support strategies, we must first understand caregivers’ experiences. Objective: To explore caregivers’ experiences regarding training and support for managing older adults’ physical functioning (PF) needs in the post-acute HHC setting. Method: We conducted a qualitative descriptive study using semi-structured telephone interviews of 20 family caregivers. Interviews were recorded, transcribed, and analyzed using conventional content analysis. Results: We identified the following primary categories: facilitators to learning (eg, past experience, learning methods), barriers to learning (eg, learning on their own, communication, timing/logistics, preferred information and timing of information delivery), and interactions with HHC providers (eg, positive/negative interactions, provider training and knowledge). Conclusion: Caregivers were responsive to learning strategies to manage older adults’ PF needs and, importantly, voiced ideas to improve family-focused training and support. HHC providers can use these findings to tailor training and support of family caregivers in the post-acute HHC setting.

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