scholarly journals Caregiving for Persons Living With Dementia in the New Normal: Family Caregiver’s Perspective

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 1036-1036
Author(s):  
Priyanka Shrestha ◽  
Donna Fick ◽  
Marie Boltz ◽  
Susan Loeb ◽  
Andrew High
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Qualitative Methodology ◽  
Well Being ◽  
Intensive Care Admission ◽  
Increased Risk ◽  
The Family ◽  
Poor Outcomes ◽  
Person With Dementia ◽  
The Impact

Abstract Persons living with dementia (PLWD) are at increased risk for COVID-19 and associated poor outcomes, including: incident delirium, hospitalization, severe symptoms, intensive care admission, and even death. PLWD are likely to rely on family caregivers to maintain their health and well-being in the community. Under normal circumstances, caregiving can be stressful and complex, and the COVID-19 pandemic has the potential to change and exacerbate the stresses of family caregiving. As a part of a larger study using descriptive qualitative methodology to explore the family caregiver understanding and experiences related to delirium in caring for a person with dementia, 14 participants (age x̄ =67, SD= 13.8) were asked about the impact of COVID-19 on their caregiving for PLWD. Thematic analysis of the transcribed interviews using Dedoose generated four overarching themes associated with the family caregiver’s perspective of changes in caregiving during the COVID-19 pandemic: 1) Cautious of COVID-19 exposure, 2) We can’t go in, 3) Feeling of isolation for both the PLWD and caregiver, and 4) Six-feet distance. The current study highlights the importance of understanding the needs of PLWD during a pandemic based upon the perspective of their family caregivers and will inform the development of ways to safely incorporate family caregivers in the interdisciplinary care team. Caregivers are integral to the care of PLWD across settings of care and should be partners even during a pandemic. Solutions for care include integrating technology for individualized approaches. Finally, future areas for research will be discussed.

scholarly journals The Impact of Major Events on the Lives of Family Caregivers of Children with Disabilities

1996 ◽  
Vol 77 (8) ◽  
pp. 502-514 ◽  
Author(s):  
Thomas P. McDonald ◽  
Graciela Couchonnal ◽  
Theresa Early
Keyword(s):  
Family Caregivers ◽  
Emotional Disorders ◽  
Family Caregiving ◽  
Well Being ◽  
Stressful Events ◽  
School Activities ◽  
Children's Behavior ◽  
The Family ◽  
Families With Children ◽  
The Impact

The authors examine the family caregiving experience among families with children with severe emotional disabilities from a perspective that recognizes the importance of the family's views and feelings. This viewpoint anticipates the occurrence of both positive and negative experiences and seeks to illuminate the caregiving process from the perspective of outcomes achieved. Family caregivers of 164 children with serious emotional disorders were asked to identify major pleasant and stressful events that had occurred in the past 12 months. The most frequently described pleasant events related to children's behavior, school activities, and interactions with professionals and friends. Frequently described problem areas included children's behavior, professionals/services, and difficulty with school. The impact of these pleasant and stressful events was examined with respect to caregivers' perceived well-being: (1) overall stress, (2) the ability to fulfill responsibilities, and (3) pleasure experienced in various life domains. Implications of the study findings for supporting family caregivers in their roles are discussed.

scholarly journals 407 - The Baycrest Quick-Response Caregiver Tool: The Role for a New Tool for Caregivers of Persons with Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 123-123
Author(s):  
Ken Schwartz ◽  
Robert Madan ◽  
Anna Berall ◽  
Marsha Natadira ◽  
Anna Santiago
Keyword(s):  
Family Caregivers ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Well Being ◽  
Moderate Degree ◽  
Quick Response ◽  
Care Providers ◽  
High Level ◽  
Person With Dementia ◽  
The Impact

Background:Responsive behaviours in dementia are associated with poor outcomes for the person with dementia (PWD) and caregiver burnout. Family caregivers need a variety of tools to manage responsive behaviours. The Baycrest Quick-Response Caregiver Tool was developed to provide caregivers with a tool that can be used in real time. In this study, the feasibility, impact, and effectiveness of this new tool were studied in family caregivers and health care providers (HCP) using quantitative and qualitative measures.Methods:Family caregivers were recruited and were asked to complete a pre-survey before being sent the link to the educational tool. One month after the telephone survey, caregivers were sent an online post-survey to gather their feedback on the tool and the impact of the tool on caregiver well -being. Healthcare providers were also recruited and reviewed the tool through an online feedback survey. The feasibility, impact, and effectiveness of the tool were assessed using quantitative and qualitative measures.Results:Caregivers had a moderate degree of and reported a high level of competence - these scores were maintained throughout the study. Caregivers reported that tool positively impacted their compassion towards the person with dementia (PWD), and that their interactions with improved. 100% of HCP who completed the feedback survey would recommend the tool to other HCP and to caregivers of PWD. The caregivers and HCP provided specific suggestions for improvement.Conclusions:The Baycrest Quick-Response Caregiver Tool was found to be feasible and helpful. It provides caregivers and HCP with an additional approach for responsive behaviours.

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.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

scholarly journals A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

Healthcare ◽  
2019 ◽  
Vol 7 (2) ◽  
pp. 63 ◽  
Author(s):  
Sherman
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Well Being ◽  
Health Care Team ◽  
Second Order ◽  
Team Members ◽  
Physical Decline ◽  
Health Team ◽  
The Family

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver’s opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers’ health and well-being.

scholarly journals Becoming a Family Caregiver to a Person With Dementia: A Literature Review on the Needs of Family Caregivers

2021 ◽  
Vol 7 ◽  
pp. 237796082110290
Author(s):  
Vibeke Østergaard Steenfeldt ◽  
Lars Christian Aagerup ◽  
Anna Holm Jacobsen ◽  
Ulla Skjødt
Keyword(s):  
Literature Review ◽  
Family Caregivers ◽  
Social Contact ◽  
Well Being ◽  
Reciprocal Relationship ◽  
The Family ◽  
The Matrix ◽  
Caregiver Burdens ◽  
High Level ◽  
Person With Dementia

Introduction The dementia disease affects both the family caregivers’ health and social and psychological well-being. The aim of this review was to identify and describe the needs of family caregivers living with a person with dementia at home. Method The literature review, conducted using the matrix method, was also inspired by Thomas and Harden’s thematic synthesis. Results Three themes were identified: (1) the family caregiver’s new roles and relationships; (2) caregiver burdens; and (3) the caregiver’s need for information and support. Conclusion When family caregivers gradually lose their reciprocal relationship with the person with dementia, and sometimes also with family and friends, the need for other kinds of social contact arises e.g. with others in a similar situation. They also need to have some respite to provide room to pursue their own interests and take care of their own health. Also, a high level of individually tailored information is needed.

scholarly journals Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States

2022 ◽  
pp. 107755872110624
Author(s):  
Yulya Truskinovsky ◽  
Jessica M. Finlay ◽  
Lindsay C. Kobayashi
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Well Being ◽  
The United States ◽  
National Sample ◽  
Work From Home ◽  
More Care ◽  
Using Data ◽  
The Impact

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

Family experiences of caregiving to patients with Alzheimer

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Eman Al-Zyoud ◽  
Mahmoud Maharmeh ◽  
Muayyad Ahmad
Keyword(s):  
Family Caregivers ◽  
Design Methodology ◽  
Well Being ◽  
Phenomenological Approach ◽  
Chronic Illnesses ◽  
Medical Clinic ◽  
Structured Interviews ◽  
Content Type ◽  
The Family ◽  
The Impact

Purpose This paper aims to describe and understand the family experience of caregiving to their Alzheimer patients and to explore the impact of caregiving on the family’s caregiver well-being. Design/methodology/approach The study involved eight family caregivers from the outpatient department, specifically from the neurology-medical clinic. A descriptive phenomenological approach was used for data collection through in-depth semi-structured interviews. Findings Four themes emerged: caregiver perception, tension, the sense of duty and commitment and altruism and sacrifice. The experience of family caregivers was different from their experiences with other chronic illnesses. Originality/value The family caregivers experience new life when providing care to their patients with Alzheimer's. The impact of the process of caregiving on whole life appeared in both positive and negative aspects. The perception and awareness of family caregivers toward Alzheimer’s disease were poor.

scholarly journals Caregiver Health and Well-Being, and Financial Strain

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-682
Author(s):  
Susan Reinhard ◽  
Lynn Feinberg
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Family Care ◽  
Well Being ◽  
Financial Strain ◽  
Caregiver Health ◽  
Financial Impacts ◽  
The Impact ◽  
Health And Well Being ◽  
The U.S

Abstract Family caregivers often face key challenges when caring for a relative or close friend with health or functional needs. This paper presents findings from Caregiving in the U.S. 2020 on the impact of caregiving on the physical health and well-being of family caregivers and the financial impacts of family care. The data suggest that the caregiver’s own health has declined, with 1 in 5 (21%) saying they are in fair to poor health themselves, up from 17 percent in 2015. Nearly 1 in 4 (23%) feel caregiving has made their health worse. Nearly 4 in 10 (38%) family caregivers of adults experience a moderate to a high degree of financial strain from providing care. Forty-five percent have experienced at least one financial impact (e.g., stopped savings, debt, ability to pay bills, and ability to afford necessary expenses, like food). These findings reveal that because family caregiving today is more complex, costly, and stressful than in the past, action is needed to recognize and support family caregivers in the U.S adequately.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

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