scholarly journals The Breaking Point: Family Dementia Caregivers’ Recognition of the Need to Intervene

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-153
Author(s):  
Candace Harrington ◽  
Cheryl Dean-Witt ◽  
Frances Hardin-Fanning
Keyword(s):  
Early Recognition ◽  
Family Care ◽  
Role Identity ◽  
Breaking Point ◽  
Care Recipient ◽  
Life Transition ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Rural Agriculture ◽  
Dementia Caregiver

Abstract Family dementia caregivers are an under-recognized and valuable geriatric workforce whose services have broad implications for health care systems. Family dementia caregivers may experience uncertainty, loss of role identity, involuntary role assumption, or undesirable life transitions. Subsequent unintentional mistreatment or abuse of their family care recipient may occur. Approximately 50% of caregivers admit to some form of mistreatment of their loved one who lives with dementia. Using Selder’s (1989) life transition theory, this qualitative study explored family members’ life transition process toward their new role identities as family dementia caregivers to better understand the personal and historical contexts of caregiving. Semi-structured interviews were conducted with 10 participants to answer the questions: How does one acquire the role of primary family dementia caregiver?” and “How do personal and historical contexts inform the family dementia caregiver role?” Richness of data drove our sample size. Epistemological integrity ensured trustworthiness and rigor. A modification of Colaizzi’s (1978) analytic method was used for interpretative phenomenological analysis. The emergent themes uncovered by participants’ statements included: “It’s my turn”, “the breaking point”, and “a fine line” with the subtheme “balancing dignity and safety”. Participants described their introspective journeys toward a changed reality as family dementia caregivers. Our findings suggested the need for early recognition and vigilance to prevent the exploitation and mistreatment of those with dementia. Rural agriculture-based family caregivers in our study described unique and challenging characteristics. Further research is needed to explore the implications of these contextual nuances for rural agriculture-based family dementia caregivers.

Development and validation of the Caregiver Guilt Questionnaire

2010 ◽  
Vol 22 (4) ◽  
pp. 650-660 ◽  
Author(s):  
Andrés Losada ◽  
María Márquez-González ◽  
Cecilia Peñacoba ◽  
Rosa Romero-Moreno
Keyword(s):  
Behavioral Problems ◽  
Family Care ◽  
Research Literature ◽  
Care Recipient ◽  
Outcome Variable ◽  
Caregiver Distress ◽  
Negative Consequences ◽  
Dementia Caregivers ◽  
Five Factors ◽  
Frail Elderly People

ABSTRACTBackground: Family care of frail elderly people has been linked to significant negative consequences for caregivers' mental health. Although outcome variables such as burden and depression have been widely analyzed in this population, guilt, an emotion frequently observed in caregivers, has not received sufficient attention in the research literature.Methods: Face-to-face interviews were carried out with 288 dementia caregivers. Guilt was measured using the Caregiver Guilt Questionnaire (CGQ).Results: Using principal components analysis, 22 items were retained and five factors were obtained which explained 59.25% of the variance. These factors were labeled: guilt about doing wrong by the care recipient, guilt about not rising to the occasion as caregivers, guilt about self-care, guilt about neglecting other relatives, and guilt about having negative feelings towards other people. Acceptable reliability indexes were found, and significant associations between the CGQ and its factors and the Zarit Burden Interview guilt factor were also found. Caregivers with higher scores on the CGQ also scored higher in depression, anxiety, frequency and appraisal of behavioral problems. Negative associations between the CGQ and its factors and frequency of/and satisfaction with leisure and social support were also found. Being female and caring for a parent were associated with higher scores on the CGQ.Conclusions: Feelings of guilt are significantly related to caregiver distress. The CGQ may be a useful measure for acknowledging feelings of guilt in caregivers; moreover, it can be used as an outcome variable for psychoeducational interventions aimed at reducing caregiver distress.

“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

2021 ◽  
Author(s):  
Jinhee Cha ◽  
Colleen M. Peterson ◽  
Ashley N Millenbah ◽  
Katie Louwagie ◽  
Zachary G Baker ◽  
...  
Keyword(s):  
Health System ◽  
Family Members ◽  
Extended Period ◽  
Care Recipient ◽  
Dementia Caregivers ◽  
Caregiver Support ◽  
Care Plans ◽  
Dementia Caregiver ◽  
Facilitators And Barriers ◽  
Additional Support

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

How family dementia caregivers perceive benefits of a 4-week MIT mindfulness and guided imagery program: a pilot study

2019 ◽  
Author(s):  
Francis Yang ◽  
Joseph Zamaria ◽  
Stefana Morgan ◽  
Eric Lin ◽  
Andrew F. Leuchter ◽  
...  
Keyword(s):  
Psychological Symptoms ◽  
Pilot Trial ◽  
Well Being ◽  
Mental States ◽  
Care Recipient ◽  
Structured Interviews ◽  
Active Components ◽  
Post Intervention ◽  
Dementia Caregivers ◽  
Self Compassion

BackgroundFamily caregivers of patients with dementia experience high levels of interpersonal stress that often results in elevated anxiety, depression and negative impacts on social networks. Changes in behaviors and the structure of relationships with the care recipient (CR) and others in the social milieu challenge the caregivers’ ability to mentalize, or understand the links between mental states and behaviors. This study investigates the perceived benefits for family dementia caregivers of Mentalizing Imagery Therapy (MIT), which aims to improve balanced mentalizing of both self and others and reduce psychological symptoms. Methods11 family members who identified as the primary caregiver of a relative with dementia underwent a 4-week pilot trial of MIT and completed semi-structured interviews post-intervention to identify subjective benefits, putative psychological mediators and perceived active components. ResultsCaregivers reported improvements in general well-being, mood, anxiety, and sleep, and a majority stated the intervention helped with forming and maintaining healthier relationships. Some participants noted benefits extending to how they reacted to their social environment and perceived themselves more objectively from others’ perspectives. Specific elements of the intervention, including self-compassion, self-care, and the ability to reflect on emotionally arousing challenges, might have mediated these improvements. The combination of instructor, meditations, homework, group sessions, and educational sessions was well received by participants.ConclusionOur results show that family dementia caregivers described perceived salutary benefits of MIT on multiple domains of well-being. The self reports suggest MIT holds promise for reducing non-mentalizing patterns of thought, and facilitating improvements in balanced mentalization within the caregivers’ relationships. These results should be further extended in larger samples.

scholarly journals Predicting Depression in Dementia Caregivers: Do Religious/Spiritual Struggles Play a Role?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 864-864
Author(s):  
Elizabeth MacDougall
Keyword(s):  
Mental Health ◽  
Problem Behaviors ◽  
Care Recipient ◽  
Spiritual Struggle ◽  
Dementia Caregivers ◽  
Convenience Sample ◽  
Dementia Caregiver ◽  
Caregiver Mental Health ◽  
Spiritual Struggles ◽  
Clinically Significant

Abstract Using a stress process framework model, this study is the first to comprehensively examine the role that religious/spiritual struggles play in the lives of informal dementia caregivers. A convenience sample of 156 informal dementia caregivers completed a scale measuring six domains of religious/spiritual struggles, as well as other measures of primary stressors, background/contextual variables, and mental health outcome (depression). Overall levels of religious/spiritual struggle were low, but 26 percent of the sample were classified as possible cases of clinically significant religious/spiritual struggle for at least one of the six domains. Of this group, 49 percent acknowledged struggles with ultimate meaning. Religious/spiritual struggles predicted greater self-reported depression over and above number of care recipient problem behaviors (primary stressor), caregiver sex, and caregiver personality (i.e., emotional stability). Although no individual domain of religious/spiritual struggle emerged as most salient, caregivers reported significantly more ultimate meaning struggles than demonic or interpersonal struggles. These findings support the growing body of research suggesting that religious/spiritual struggles serve as a secondary stressor, adding predictive power to background/contextual factors and to primary stressors for informal dementia caregiver mental health outcomes. Further research in this area may advance efforts to better equip both secular and religious professionals to provide evidence-based counsel to informal dementia caregivers.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

scholarly journals “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

scholarly journals The Going to Stay at Home program: combining dementia caregiver training and residential respite care

2018 ◽  
Vol 30 (11) ◽  
pp. 1697-1706 ◽  
Author(s):  
Meredith Gresham ◽  
Megan Heffernan ◽  
Henry Brodaty
Keyword(s):  
Unmet Needs ◽  
Respite Care ◽  
Behavioral Symptoms ◽  
Caregiver Training ◽  
Dementia Caregivers ◽  
Home Program ◽  
Caregiver Depression ◽  
Dementia Caregiver ◽  
And Function ◽  
At Home

ABSTRACTBackground:Caring for persons with dementia is stressful for family caregivers. Caregiver training programs and respite care can reduce this stress and help maintain persons with dementia living longer in the community. We evaluated a program that combines caregiver training with a residential respite stay.Methods:In total, 90 dyads of persons with dementia and their caregivers, in groups of 3–6 dyads, volunteered to participate in a five-day residential training program and were followed-up 6 and 12 months later. The primary outcome was caregiver depression; secondary outcomes were measures of caregiver burden, unmet needs, person with dementia behavioral symptoms, and the quality of life and function.Results:Caregiver depression and burden were unchanged, despite decreasing function in persons with dementia. Caregivers’ unmet needs and behavioral symptoms in persons with dementia decreased significantly. Compared to a group of persons with dementia admitted for routine residential respite care, there was a marked reduction in permanent placement over 12 months.Conclusions:The Going to Stay at Home Program is a feasible and practicable model with benefits for caregivers and persons with dementia. It may lead to delay in institutionalization and may be applicable to other chronic conditions.

scholarly journals The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

2020 ◽  
Vol 10 ◽  
pp. 2235042X2098119
Author(s):  
Jenny Ploeg ◽  
Anna Garnett ◽  
Kimberly D Fraser ◽  
Lisa Garland Baird ◽  
Sharon Kaasalainen ◽  
...  
Keyword(s):  
Older Adults ◽  
Qualitative Study ◽  
Chronic Conditions ◽  
Social Inclusion ◽  
Secondary Analysis ◽  
Community Support ◽  
Care Recipient ◽  
Community Living ◽  
Multiple Chronic Conditions ◽  
Structured Interviews

Background: Older adults with multiple chronic conditions (MCC) rely heavily on caregivers for assistance with care. However, we know little about their psychosocial experiences and their needs for support in managing MCC. The purpose of this study was to explore the experiences of caregivers of older adults living in the community with MCC. Methods: This qualitative study was a secondary analysis of previously collected data from caregivers in Ontario and Alberta, Canada. Participants included caregivers of older adults (65 years and older) with three or more chronic conditions. Data were collected through in-depth, semi-structured interviews. Interview transcripts were coded and analyzed using Thorne’s interpretive description approach. Results: Most of the 47 caregiver participants were female (76.6%), aged 65 years of age or older (61.7%), married (87.2%) and were spouses to the care recipient (68.1%). Caregivers’ experiences of caring for community-living older adults with MCC were complex and included: (a) dealing with the demands of caregiving; (b) prioritizing chronic conditions; (c) living with my own health limitations; (d) feeling socially isolated and constrained; (e) remaining committed to caring; and (f) reaping the rewards of caregiving. Conclusions: Healthcare providers can play key roles in supporting caregivers of older adults with MCC by providing education and support on managing MCC, actively engaging them in goal setting and care planning, and linking them to appropriate community health and social support services. Communities can create environments that support caregivers in areas such as social participation, social inclusion, and community support and health services.

scholarly journals FAMILY DEMENTIA CAREGIVERS’ EPIPHANIES AND CHANGES IN THEIR APPROACH TO CARING FOLLOWING THE VIRTUAL DEMENTIA TOUR

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S554-S554
Author(s):  
Candace C Harrington ◽  
Candace C Harrington
Keyword(s):  
Lived Experience ◽  
Family Caregiving ◽  
Phenomenological Study ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Health Indices ◽  
Person Perspective ◽  
Eye Opening

Abstract Previous interventional studies have failed to show long-term improvements in caregiver stress, health indices, burden, or delay in long-term care placement. The Virtual Dementia Tour® (VDT) provides a vicarious first-person perspective of symptoms related to dementia. This interpretative phenomenological study revealed family dementia caregivers’ perceptions of the VDT® and its impact on their perception of a person living with dementia. In-depth open semi-structured interviews were conducted with ten VDT® participants following a community event. Participants’ statements described a life-changing process with eye-opening epiphanies about the lived experience of dementia and served as a “call to action” to change their approach to caring. Innovative advances in family caregiving research are critical to support this valuable geriatric workforce. This original study provided new knowledge about the value of the VDT® to inform interventions that harness the unrecognized power of vicarious experiences like the VDT® for family dementia caregivers to improve long-term outcomes.

scholarly journals SYSTEMATIC REVIEW AND META-ANALYSIS OF RACIAL AND ETHNIC DIFFERENCES IN DEMENTIA CAREGIVER WELL-BEING

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S434-S434
Author(s):  
Chelsea Liu ◽  
Adrian Badana ◽  
Julia Burgdorf ◽  
Chanee D Fabius ◽  
William E Haley ◽  
...  
Keyword(s):  
Systematic Review ◽  
Ethnic Differences ◽  
Meta Analysis ◽  
Well Being ◽  
Population Based ◽  
Dementia Caregivers ◽  
Convenience Sample ◽  
Dementia Caregiver ◽  
Racial Ethnic ◽  
Physical Outcomes

Abstract Studies comparing racial/ethnic differences on psychological and physical outcomes of dementia caregivers have often reported differences in well-being for minority groups compared to Whites. However, due to issues with enrolling minorities into studies, recruitment methods often differ for minority and White participants and may lead to biased comparisons. We conducted a systematic review and meta-analysis to examine racial/ethnic differences in dementia caregiver outcomes and to determine whether any differences vary among studies with population-based samples compared to convenience samples. We systematically reviewed articles with primary data from PubMed, Google Scholar and PsycINFO, and included studies comparing either African American (AA) or Hispanic/Latino dementia caregivers to White caregivers on measures of psychological health (e.g. depression, anxiety, burden) and physical health (e.g. self-rated health, cardiovascular measures, stress biomarkers). Reviewers screened titles and abstracts, reviewed full texts and conducted risk-of-bias assessments. A total of 207 effects were extracted from 40 studies. Random-effects models showed that Hispanics/Latinos reported significantly lower levels of well-being than Whites (ps < .05) for both psychological outcomes (37 effects) and physical outcomes (15 effects), while AAs were not significantly different from Whites in either domain. No differences were observed for population-based studies (N=3; 23 effects) or convenience-sample studies (N=37; 184 effects). Although some previous studies with convenience samples found better psychological well-being in AA caregivers, that pattern was not confirmed in our meta-analysis. Additional analyses for the different indicators of well-being and the relationship of quality ratings to effect sizes will be discussed along with implications for future research.

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