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

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.

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Caring Beyond the Challenges: Grit in Dementia Family Caregivers

Innovation in Aging ◽

10.1093/geroni/igab046.030 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 8-8

Author(s):

Rosemary Blieszner ◽

Jyoti Savla ◽

Karen Roberto ◽

Brandy McCann ◽

Emily Hoyt

Keyword(s):

Family Caregivers ◽

Process Model ◽

Well Being ◽

Sem Analysis ◽

Role Overload ◽

Stress Process Model ◽

Dementia Caregivers ◽

Family Solidarity ◽

Rural Appalachia

Abstract Scholars and practitioners recognize the importance of family caregivers for persons with dementia (PwD) persevering through difficulties and remaining committed to providing care (i.e., possessing grit). Based on Pearlin’s stress process model, we examined how grit is associated with stressors and strains that interfere with caregiver well-being and jeopardize continued caregiving. The sample included 158 family caregivers of PwD from rural Appalachia. SEM analysis revealed that grit and family and friend affectual solidarity contributed significantly to mastery. Grit and family solidarity were associated indirectly with role overload through their effect on mastery. Results demonstrate the value of acknowledging the role of grit in enhancing caregivers’ confidence about managing difficulties they face and reducing their sense of being overwhelmed by caregiving responsibilities. Thus, strengthening dementia caregivers’ commitment to and perseverance in their role is crucial for sustaining their motivation to provide care, despite the challenges they face.

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Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia

The British Journal of Psychiatry ◽

10.1192/bjp.171.1.26 ◽

1997 ◽

Vol 171 (1) ◽

pp. 26-30 ◽

Cited By ~ 92

Author(s):

Christine Barrowclough ◽

Michael Parle

Keyword(s):

Expressed Emotion ◽

Symptom Control ◽

Well Being ◽

Primary Appraisal ◽

Coping Theory ◽

Secondary Appraisal ◽

Multivariate Relationships ◽

Schizophrenic Patients ◽

A Prospective Study ◽

Appraisal Processes

BackgroundIt is argued that coping theory may be useful in attempting to understand how relatives adapt to the demands of living with a schizophrenia sufferer.MethodIn a prospective study, univariate and multivariate relationships were explored between appraisal variables (appraisal of symptom threat (primary appraisal) and perceived symptom control (secondary appraisal)) and (a) expressed emotion, and (b) psychological distress in relatives of schizophrenic patients. The profile of relatives who showed sustained distress over time was also examined.ResultsThe appraisal variables were found to be related to both the concurrent distress (GHQ scores), EE ratings of relatives at the time of the patients relapse and hospitalisation, as well as the subsequent GHQ scores of relatives when the patient was discharged back home. Relatives who showed sustained distress were likely to show high EE and have a longer caring history.ConclusionsThe study gives some support to the theory that appraisal processes underlie how relatives react to having a family member with schizophrenia, and may have implications both for identifying those at risk of poor adaptation, and for understanding strategies that improve well-being.

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Emotional Experiences of Dementia Caregiving Transitions

Innovation in Aging ◽

10.1093/geroni/igaa057.236 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 72-72

Author(s):

Emily Ihara ◽

Catherine Tompkins ◽

William Kennedy ◽

Rhea Vance-Cheng ◽

Bianca Kwan ◽

...

Keyword(s):

Family Caregivers ◽

Well Being ◽

Emotional Experiences ◽

Dementia Caregivers ◽

Nursing Facility ◽

Term Care ◽

Group Interviews ◽

Symptom Progression ◽

Feeling Overwhelmed

Abstract Research indicates that family caregivers of individuals living with dementia are at risk for high levels of stress, depression, physical health declines, and illness. The health and well-being of family caregivers is critically important to a long-term care system that is dependent on them to continue their caregiving role. In-depth individual and focus group interviews of 16 dementia caregivers were conducted to explore the emotional experiences of caregiving stress during transitions of individuals living with dementia to a higher level of care. Data were transcribed verbatim, checked for accuracy, and analyzed by at least two members of the research team. Line-by-line coding, memo writing, and constant comparative analyses were conducted until redundancy, when no new themes were discovered. Caregivers described various levels of feeling overwhelmed and symptom progression leading to the move to a nursing facility. Social isolation featured prominently, with caregivers describing a gradual erosion of their social network and socializing opportunities because of their caregiving responsibilities and the care recipient’s deteriorating symptoms. Caregivers described feeling isolated and stigmatized. One caregiver said, “…you’re being less invited, you’re being less involved. People don’t know how to deal with you…I don’t know if they become the pariah or I become the pariah.” At the same time, maintaining social connections and having help with caregiving featured prominently in the coping mechanisms described. The health of caregivers is equally as important as the person living with dementia, and programs, interventions, and resources should be a priority for supporting families through transitions.

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“I’ve learned to just go with the flow”: Family caregivers’ strategies for managing behavioral and psychological symptoms of dementia

Dementia ◽

10.1177/1471301218780768 ◽

2018 ◽

Vol 19 (3) ◽

pp. 590-605 ◽

Cited By ~ 4

Author(s):

Courtney A Polenick ◽

Laura M Struble ◽

Barbara Stanislawski ◽

Molly Turnwald ◽

Brianna Broderick ◽

...

Keyword(s):

Family Caregivers ◽

Psychological Symptoms ◽

Clinical Care ◽

Well Being ◽

Dementia Caregivers ◽

Targeted Interventions ◽

Care Partners ◽

Group Data ◽

Focus Group Data ◽

Behavioral And Psychological Symptoms

Background and objectives Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.

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The well-being of adult children while caring for a parent in home hospice: Evaluation of an automated remote monitoring and coaching system.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.222 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 222-222

Author(s):

Kathi Mooney ◽

Patricia Berry ◽

Jacquee Blaz ◽

Gary Donaldson

Keyword(s):

Family Caregivers ◽

Adult Children ◽

Remote Monitoring ◽

Negative Binomial ◽

Hospice Care ◽

Adult Child ◽

Well Being ◽

Poor Sleep ◽

Significant Finding ◽

At Home

222 Background: Health and well-being often deteriorates for family caregivers providing home hospice care. This includes adult children managing multiple demands while supporting their parent to remain at home. Automated remote monitoring of patient symptoms has shown promise in home cancer care and could be extended for monitoring and supporting the wellbeing of adult child caregivers (ACC) providing care to their parent at home. Methods: In a RCT, 97 ACCs were monitored using a telephone based automated reporting and coaching system, and randomly assigned to the ACC care intervention (Rx) (N = 51) or usual care (UC) (N = 46). All ACCs were asked to call the system daily reporting presence and severity (0-10 scale) of their own fatigue, poor sleep, depressed mood, anxiety and interference with normal activities. The Rx ACCs received automated tailored coaching based on reported patterns of moderate to severe symptom levels and alert reports were also sent to their hospice nurse. Results: ACCs were females (78%) with a mean age of 51. There were no differences between groups on any demographic or baseline measures. Utilizing negative binomial modeling, Rx ACCs had significantly fewer days/week of moderate-severe symptoms overall (.6 vs 2.4, p < .001) and for each individual symptom (all p < .001). Among those attempting to maintain work, Rx ACCs were able to work 80% of work days and UC ACCs worked 68% of work days. Six weeks after their parent’s death, there was a statistical trend (p = .07) for Rx ACCs to be less depressed than UC ACCs (11.94 vs 18.04). This is a clinically significant finding as UC ACCs’ CESD scores were at the clinically actionable level ( > 16) for referral for evaluation of depression. Rx ACCs’ CESD scores had dropped an average of 1.37 points below their baseline whereas UC ACCs’ scores had increased an average of 3.86 points from baseline at 6 weeks post death. Conclusions: Automated remote monitoring and coaching for adult child family caregivers offers impressive benefit in reducing the physical burden and psychosocial distress of caregiving during and after parental hospice care. Clinical trial information: NCT02112461.

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Aspects of Grit Among Dementia Family Caregivers

Innovation in Aging ◽

10.1093/geroni/igab046.029 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 8-8

Author(s):

Jyoti Savla ◽

Karen Roberto ◽

Jennifer Margrett

Keyword(s):

Family Caregivers ◽

Well Being ◽

Future Research ◽

Spiritual Support ◽

Dementia Caregivers ◽

Dementia Caregiver ◽

Caregiving Roles ◽

Caregiver Role ◽

The Impact

Abstract Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

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HOME IS WHERE THE HEART IS: OPTIMIZING AND TAILORING HOME AND COMMUNITY-BASED SUPPORT FOR DEMENTIA CAREGIVERS

Innovation in Aging ◽

10.1093/geroni/igz038.2026 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S549-S550

Author(s):

Quincy M Samus ◽

Nancy Hodgson ◽

Joseph E Gaugler

Keyword(s):

Family Caregivers ◽

Disease Stage ◽

Care Needs ◽

Community Based ◽

Dementia Caregivers ◽

Health And Wellbeing ◽

Dementia Patients ◽

Home Based ◽

Diverse Community ◽

At Home

Abstract Family caregivers, often “de facto” members of the care team for persons with dementia, play a central role in ensuring safety, support, quality of life, and continuity of care. Most often, they provide this care for loved ones at home and over a long period of time, as the illness progresses and care need intensifies. This session will provide a unique understanding of potential ways to optimize support for family caregivers in provision of day-to-day care in the home by examining often-overlooked factors influential in the health and wellbeing for both caregiver and persons with dementia. Presentations will draw from three large community-based trials testing interventions to support dementia caregivers. Drs. Samus and Sloan will present on common unmet needs identified by family caregivers and explore how needs differ by disease stage and race. Dr. Fortinsky will present baseline caregiver care-related challenges in a diverse cohort of caregivers and the effects of a caregiver intervention designed to mitigate these challenges. Dr. Hodgson will present the common symptoms clusters among home-dwelling persons with dementia patients and how these are associated with caregiver distress. Dr. Jutkowitz will discuss factors influencing dementia caregiver’s willingness to pay for help at home. Findings from this session will help elucidate care needs that matter most to family caregivers in diverse community-living cohorts and how we might optimize and tailor supportive home-based interventions to target these needs and challenges.

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Safety Needs Mediate Stressful Events Induced Mental Disorders

Neural Plasticity ◽

10.1155/2016/8058093 ◽

2016 ◽

Vol 2016 ◽

pp. 1-6 ◽

Cited By ~ 14

Author(s):

Zheng Zheng ◽

Simeng Gu ◽

Yu Lei ◽

Shanshan Lu ◽

Wei Wang ◽

...

Keyword(s):

Mental Disorders ◽

Well Being ◽

Stressful Events ◽

Appraisal Theory ◽

Neural Basis ◽

Primary Appraisal ◽

Secondary Appraisal ◽

Behavior Function ◽

The Individual ◽

Safety First

“Safety first,” we say these words almost every day, but we all take this for granted for what Maslow proposed in his famous theory ofHierarchy of Needs: safety needs come second to physiological needs. Here we propose that safety needs come before physiological needs. Safety needs are personal security, financial security, and health and well-being, which are more fundamental than physiological needs. Safety worrying is the major reason for mental disorders, such as anxiety, phobia, depression, and PTSD. The neural basis for safety is amygdala, LC/NE system, and corticotrophin-releasing hormone system, which can be regarded as a “safety circuitry,” whose major behavior function is “fight or flight” and “fear and anger” emotions. This is similar to the Appraisal theory for emotions: fear is due to the primary appraisal, which is related to safety of individual, while anger is due to secondary appraisal, which is related to coping with the unsafe situations. If coping is good, the individual will be happy; if coping failed, the individual will be sad or depressed.

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Influence of COVID-19 on dementia caregivers living in community

Innovation in Aging ◽

10.1093/geroni/igaa057.3477 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 950-951

Author(s):

Yeji Hwang ◽

Anjali Rajpara ◽

Sonia Talwar ◽

LaShauna Connell ◽

Katie Ramirez ◽

...

Keyword(s):

Health Care Professionals ◽

Neuropsychiatric Symptoms ◽

Study Participant ◽

Well Being ◽

Anxiety Symptoms ◽

High Risk Population ◽

Dementia Caregivers ◽

Telephone Interviews ◽

Care Recipients ◽

Study Participants

Abstract Community-residing persons living with dementia (PLWD) are a high-risk population for the Coronavirus Disease 2019 (COVID-19) because of advanced age, comorbidities, and impaired cognition. While family caregivers report additional anxiety symptoms by caring for PLWD at home, little is known about their caregiving experience during the current COVID-19 pandemic. The purpose of this study is to examine the influence of the COVID-19 on dementia caregivers. Study participants were recruited from parent study, the Healthy Patterns Clinical Trial (Hodgson; R01NR015226). Data were collected from June 13th to August 28th, 2020 via semi-structured telephone interviews. Thirty-four dementia caregivers participated in this study. Mean caregiver age was 59.2±12.7. Over 70% of the study participant reported worry about spreading COVID-19 to the PLWD and 41.2% reported that they have taken on additional caregiving duties for others in their family or network since COVID-19. In this sample, 61.8% of the dementia caregivers reported one or more anxiety symptoms. Independent t-tests were conducted to compare dementia caregivers who reported anxiety symptoms and those who did not report anxiety symptoms. Anxiety symptoms in dementia caregivers were related to poor physical function of their care recipients (p=0.036). However, anxiety symptoms of dementia caregivers were not related to either cognitive level (p=0.11) or number of neuropsychiatric symptoms of their care recipients (p=0.366). Health care professionals should be alert to the anxiety and concerns expressed by dementia caregivers in order to maintain and improve the well-being of both caregivers and their care recipients during this unprecedented pandemic.

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Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer

Journal of Oncology Practice ◽

10.1200/jop.2016.017913 ◽

2017 ◽

Vol 13 (1) ◽

pp. 35-41 ◽

Cited By ~ 28

Author(s):

Leonard L. Berry ◽

Shraddha Mahesh Dalwadi ◽

Joseph O. Jacobson

Keyword(s):

Family Caregivers ◽

Well Being ◽

Social Needs ◽

Loved One ◽

Patients With Cancer ◽

Common Goals ◽

Funding Support ◽

Caregiving Roles ◽

Basic Medical ◽

At Home

Patients with cancer who live at home often require help with activities of daily living, basic medical care (eg, injections), social needs, and patient advocacy. Most of that support comes from intimate caregivers, typically members of the patient’s family. These family caregivers themselves require support so that they can be effective and maintain their own well-being while caring for the patient with cancer. Research shows that support for caregivers contributes to achieving these goals. We propose a four-part framework for supporting family caregivers: (1) assess caregivers’ needs using formal measures, just as the cancer patient’s own needs are assessed, (2) educate caregivers for their caregiving roles, most notably, with training in the low-level medical support that cancer patients require at home, (3) empower caregivers to become full-fledged members of the patient’s cancer team, all working toward common goals, and (4) assist caregivers proactively in their duties, so that they retain a sense of control and self-efficacy rather than having to react to imminent medical crises without sufficient resources at their disposal. Funding support for family caregivers requires refocusing on the overall well-being of the patient-caregiver dyad rather than just on the patient. It will necessitate a paradigm shift in reimbursement that recognizes the need for holistic cancer care.

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