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

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.

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

Families in Society The Journal of Contemporary Social Services ◽

10.1606/1044-3894.960 ◽

1996 ◽

Vol 77 (8) ◽

pp. 502-514 ◽

Cited By ~ 8

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.

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“It’s extremely hard but it’s not a burden”: A qualitative study of family caregiving for people living with dementia in Vietnam

PLoS ONE ◽

10.1371/journal.pone.0259788 ◽

2021 ◽

Vol 16 (11) ◽

pp. e0259788

Author(s):

Huong Nguyen ◽

Trang Nguyen ◽

Duyen Tran ◽

Ladson Hinton

Keyword(s):

Family Caregivers ◽

Family Caregiving ◽

Help Seeking ◽

Healthcare Providers ◽

Structured Interviews ◽

Resource Setting ◽

Vietnamese Women ◽

Low Resource Setting ◽

The Family ◽

Multiple Challenges

Background Vietnam is one of the fastest-aging countries in the world with a rising number of people with Alzheimer’s disease and related dementias (ADRD). Families in Vietnam provide most of the care for persons living with dementia, yet our understanding of their experiences and needs is limited. This study examined the family caregiving experience in a semi-rural region outside of central Hanoi from the perspectives of family caregivers and other key informants. Materials Semi-structured interviews were conducted with 21 key stakeholders (12 family caregivers and 9 healthcare providers and community leaders). A descriptive, thematic analysis was conducted. Results Qualitative data analysis revealed four themes related to the family caregiving experience: 1) perceptions of dementia symptoms as a normal part of aging rather than a disease, 2) caregiving as a moral and expected familial obligation, 3) patterns of caregiving that are heavily influenced by both gender and sibling order, and 4) multiple challenges or hardships, including time constraints, loss of income, increased social isolation, a toll on their perceived physical health, and emotional distress. Caregivers rejected the notion that caregiving was a “burden” and expressed their distress through terms such as frustration, sadness, and exhaustion. Conclusions In this low-resource setting, the stress of family caregiving may be amplified by lack of community resources, cultural stigma discouraging outside help-seeking, and economic impact of care provision. The study highlights the vulnerability and predicament of Vietnamese women who often face multiple challenges in their caregiving role as well as the urgent need for the development of community-based programs and supports.

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Obtaining Information from Family Caregivers Is Important to Detect Behavioral and Psychological Symptoms and Caregiver Burden in Subjects with Mild Cognitive Impairment

Dementia and Geriatric Cognitive Disorders Extra ◽

10.1159/000441893 ◽

2016 ◽

Vol 6 (1) ◽

pp. 1-9 ◽

Cited By ~ 1

Author(s):

Tetsuya Yamagami ◽

Kazuhiro Harada ◽

Hiroyuki Hashidate ◽

Yasuyoshi Asakawa ◽

Kenji Nihei ◽

...

Keyword(s):

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Family Caregivers ◽

Caregiver Burden ◽

Day Care ◽

Psychological Symptoms ◽

Adult Day Care ◽

Cognitively Normal ◽

Behavioral And Psychological Symptoms ◽

At Home

Background: The objectives of this study are to clarify the differences between the difficulties in daily life experienced by patients with both mild cognitive impairment (MCI) and chronic disease and those experienced by healthy elderly individuals. Methods: We assessed (a) cognitive function; (b) gait ability; (c) behavioral and psychological symptoms (observed at home); (d) activities of daily living (observed at home); (e) family caregiver burden, and (f) intention to continue family caregiving of 255 cognitively normal and 103 MCI subjects attending adult day care services covered by long-term care insurance, and compared the two groups. Results: Subjects with MCI display more behavioral and psychological symptoms than cognitively normal subjects, posing a heavy caregiver burden (p < 0.01). Behavioral and psychological symptoms most commonly observed in subjects with MCI are apathy, hallucinations, delusions, agitation, and aberrant motor behavior. Conclusion: Information regarding the behavioral and psychological symptoms displayed at home by patients with MCI can only be obtained from family caregivers living with the patients. To provide early-stage support for elderly patients with MCI, adult day care workers should collect information from family caregivers regarding behavioral and psychological symptoms observed at home.

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The Family and Medical Leave Act: A Policy Analysis and Recommendations to Address Employed Caregiver Burden

Innovation in Aging ◽

10.1093/geroni/igaa057.344 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 104-104

Author(s):

Geunhye Park ◽

Erin Robinson

Keyword(s):

Family Caregivers ◽

Caregiver Burden ◽

Family Caregiving ◽

Critical Examination ◽

Term Care ◽

Family Work ◽

Medical Leave ◽

The Family ◽

Unpaid Leave ◽

Employed Caregivers

Abstract Family caregiving plays a pivotal role in the long-term care system in the U.S, as there are over 40.4 million people providing unpaid care to individuals aged 65+ (U.S. Bureau of Labor Statistics, 2019). The majority are women providing supports to a parent/grandparent and provide an average of three hours of care each day. This places greater demands on family caregivers in balancing their dual caregiver/employment roles. The Family and Medical Leave Act (FMLA) of 1993 enables family caregivers to take unpaid leave to provide supports to immediate family. While FMLA was intended to provide flexibility to employed caregivers, many struggle with family-work conflicts and caregiver burden is high. Therefore, this conceptual paper offers a critical examination of FMLA and how family caregivers of older adults are impacted. Results of this analysis revealed three themes. First, FMLA is largely inadequate for employed caregivers, as only 60% of the workforce are eligible and unpaid leave restrictions create considerable financial hardship. Second, employer discrimination is high and family caregiving discrimination claims have dramatically increased since FMLA was enacted. And third, many employed caregivers are unaware of FMLA policies and eligibility requirements, which results in underutilization of benefits. Based upon these results, several policy and employer recommendations can be made, such as expanding FMLA coverage to include paid leave and non-immediate family caregivers. Additional recommendations will also be addressed. As it has been nearly 30 years since FMLA was enacted, updated policy is vital to continue supporting employed caregivers in their roles.

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

Innovation in Aging ◽

10.1093/geroni/igab046.3670 ◽

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.

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Supplemental Material for The Impact of Time and Repeated Exposure on Famous Person Knowledge in Amnestic Mild Cognitive Impairment and Alzheimer’s Disease

Neuropsychology ◽

10.1037/neu0000387.supp ◽

2017 ◽

Keyword(s):

Alzheimer’S Disease ◽

Alzheimer's Disease ◽

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Amnestic Mild Cognitive Impairment ◽

Repeated Exposure ◽

Famous Person ◽

The Impact

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Managing Caregiver Burden among Families of Patients with End-Stage Renal Disease

Africa Journal of Nursing and Midwifery ◽

10.25159/2520-5293/4330 ◽

2019 ◽

Vol 21 (1) ◽

Author(s):

Yemisi Okikiade Oyegbile ◽

Petra Brysiewicz

Keyword(s):

Renal Disease ◽

Family Caregivers ◽

Caregiver Burden ◽

End Stage Renal Disease ◽

Qualitative Data ◽

Government Support ◽

Implementation Phase ◽

The Family ◽

Stage Renal Disease ◽

End Stage

Family caregivers of patients with end-stage renal disease (ESRD) play a significant role in providing substantial care for a prolonged period for their sick relatives, often with very limited resources, making it a difficult environment. Government support for family caregivers of patients with ESRD is lacking in Nigeria, increasing their vulnerability to caregiver burden and its consequences. An action research study using a complimentary mixed-method approach was used to develop the intervention model for managing caregiver burden. Quantitative data were collected to measure the extent of caregiver burden using a Zarit Burden Interview questionnaire for 96 family caregivers, while individual in-depth interviews with 15 participants provided the qualitative data. Integrating the quantitative and qualitative data led to the identification of four moderators to manage the caregiver burden in this study. The model for managing caregiver burden was developed from the findings, using stressors and associated moderators of caregiving, and the role played by culture and finance in this context. An implementation checklist was developed, which was used by registered nurses to implement the concepts in the model with the family caregivers during the model implementation phase. Family caregivers of patients with ESRD need to be supported by nurses during the caregiving process. Nurses can increase caregivers’ identity and knowledge of the disease as a way of preventing the family caregivers from being overwhelmed by their caregiving role.

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

International Psychogeriatrics ◽

10.1017/s1041610220002604 ◽

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.

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The Impacts of Discrimination and Filial Caregivers’ Age on Aspects of Physical Health

Innovation in Aging ◽

10.1093/geroni/igaa057.1159 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 360-360

Author(s):

Barbara Hodgdon ◽

Jen Wong

Keyword(s):

Physical Health ◽

Family Caregivers ◽

Family Caregiving ◽

Chronic Conditions ◽

The United States ◽

Life Course Perspective ◽

Late Adulthood ◽

Study Results ◽

The Face ◽

The Impact

Abstract Filial caregivers (e.g., individuals caring for a parent or parent-in-law) are a part of the growing number of family caregivers in midlife and late adulthood. The responsibilities that filial caregivers navigate in midlife and late adulthood may expose them to multiple types of discrimination that may decrease their physical health, though this relationship has been understudied. As numbers of family caregivers grow, it is important to examine the potential vulnerability of younger and older filial caregivers’ physical health in the context of discrimination. Informed by the life course perspective, this study compares the physical health of younger (aged 34-64) and older (aged 64-74) filial caregivers who experience discrimination. Filial caregivers (N=270; Mage=53; SD=9.37) from the Midlife in the United States (MIDUS-II) Survey reported on demographics, family caregiving, daily discrimination, self-rated physical health, and chronic conditions via questionnaires and phone interviews. Regression analyses showed no differences between younger and older adults’ self-rated physical health or average chronic conditions. However, moderation analyses revealed that younger filial caregivers who experienced greater discrimination reported poorer self-rated physical health than their older counter parts as well as younger and older filial caregivers who experienced less discrimination. Additionally, younger caregivers with greater discrimination exposure exhibited more number of chronic conditions as compared to other caregivers. The study results highlight the impact of the intersection between filial caregivers’ age and discrimination on physical health. Findings have the potential to inform programs that could promote the health of filial caregivers in the face of discrimination.

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