Dementia Family Caregivers Research Articles

Cross-Cultural Adaptation and Psychometric Validation of the Moroccan Dialect Version of the Zarit Scale of Dementia Caregivers’ Burden

Introduction: The management of chronic diseases in general and neurological diseases in particular, given their complex nature, requires an increasing involvement of families. For this reason, several studies have attempted to describe the burden and needs of family dementia caregivers of patients with dementia around the world based on the ZaritAA scale. Because of its relevance, it has been translated and validated in many contexts around the world. However, there does not seem to be a valid Moroccan Arabic dialect version suitable for research in the Moroccan socio-cultural environment according to the scientific literature. Objective: Adapt and validate a Moroccan dialect version of Zarit (Zarit-MOR). Method: The Arabic translation of the Zarit scale was obtained. The prefianl version was then revised by a committee of experts, then tested out on a group of 34 participants, befor arriving at the final version. The Reliability was assessed using the intraclass correlation coefficient (ICC). Internal consistency was assessed using Cronbach’s alpha. Results: The adapted version of the Zarit scale was 100% acceptable. The statistical analysis of Cronbach’s alpha coefficients shows a high internal correlation of the scale (0.88) among the caregivers, of whom 66.7% were female with a mean age of 47.17 years (SD±14.2 years). The Moroccan version shows a very good reliability with an intra-class correlation coefficient ICC of 0.87 [0.79-0.92]. Conclusion: The adapted version can be used reliably in Morocco, which will make it possible to assess the experiences of Moroccan informal caregivers in the face of dementia, as well as other chronic diseases.

Mentalizing imagery therapy to augment skills training for dementia caregivers: Protocol for a randomized, controlled trial of a mobile application and digital phenotyping

More than 50 million people worldwide live with a dementia, and most are cared for by family members. Family caregivers often experience chronic stress and insomnia, resulting in decreased mental and physical health. Accessibility of in-person stress reduction therapy is limited due to caregiver time constraints and distance from therapy sites. Mentalizing imagery therapy (MIT) provides mindfulness and guided imagery tools to reduce stress, promote self and other understanding, and increase feelings of interconnectedness. Combining MIT with caregiver skills training might enable caregivers to both reduce stress and better utilize newly learned caregiving skills, but this has never been studied. Delivering MIT through a smartphone application (App) has the potential to overcome difficulties with scalability and dissemination and offers caregivers an easy-to-use format. Harnessing passive smartphone data provides an important opportunity to study behavioral changes continuously and with higher granularity than routine clinical assessments. This protocol describes a randomized, controlled, superiority trial in which 120 family dementia caregivers, aged 60 years or older, will be assigned to smartphone App delivery of caregiver skills with MIT (experimental condition) or without MIT (control condition). The primary objectives of the trial are to assess whether the experimental condition is superior to control on reducing family caregiver stress, insomnia and related outcomes and to demonstrate the feasibility of developing behavioral markers from passive smartphone data that predict health outcomes in older adults. Trial outcomes may inform the suitability of our intervention for caregivers and provide new methods for assessment of older adults.

Development and Validity Testing of a Dementia Family Caregiver Pain Assessment Survey

PURPOSE: Untreated pain in people living with dementia (PLWD) results in negative patient outcomes: aggression, depression, and sleep disturbances. Gaps exist for understanding family caregiver pain assessment for PLWD. In this survey development study, we aimed to develop questions to measure the frequency with which family caregivers of PLWD use elements of pain assessment and sought to establish the content and face validity of these questions. Institutional Review Board approval was obtained.

Four-Week Mentalizing Imagery Therapy for Family Dementia Caregivers: A Randomized Controlled Trial with Neural Circuit Changes

Introduction: Family caregivers of patients with dementia suffer a high burden of depression and reduced positive emotions. Mentalizing imagery therapy (MIT) provides mindfulness and guided imagery skills training to improve balanced mentalizing and emotion regulation. Objective: Our aims were to test the hypotheses that MIT for family caregivers would reduce depression symptoms and improve positive psychological traits more than a support group (SG), and would increase dorsolateral prefrontal cortex (DLPFC) connectivity and reduce subgenual anterior cingulate cortex (sgACC) connectivity. Methods: Forty-six caregivers participated in a randomized controlled trial comparing a 4-week MIT group (n = 24) versus an SG (n = 22). Resting state neuroimaging was obtained at baseline and post-group in 28 caregivers, and questionnaires completed by all participants. The primary outcome was change in depression; secondary measures included anxiety, mindfulness, self-compassion, and well-being. Brain networks with participation of DLPFC and sgACC were identified. Connectivity strengths of DLPFC and sgACC with respective networks were determined with dual regression. DLPFC connectivity was correlated with mindfulness and depression outcomes. Results: MIT significantly outperformed SG in improving depression, anxiety, mindfulness, self-compassion, and well-being, with moderate to large effect sizes. Relative to SG, participants in MIT showed significant increases in DLPFC connectivity – exactly replicating pilot study results – but no change in sgACC. DLPFC connectivity change correlated positively with mindfulness and negatively with depression change. Conclusions: In this trial, MIT was superior to SG for reducing depression and anxiety symptoms and improving positive psychological traits. Neuroimaging results suggested that strengthening DLPFC connectivity with an emotion regulation network might be mechanistically related to MIT effects.

Scaling up innovative interventions for family caregivers: Evaluation of the Reitman Centre CARERS program for supporting dementia family caregivers: a pre-post intervention study.

Scaling up innovative interventions for family caregivers: Evaluation of the Reitman Centre CARERS program for supporting dementia family caregivers: a pre-post intervention study.

"I Am the Home Care Agency": The Dementia Family Caregiver Experience Managing Paid Care in the Home.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

Supplemental Material for Acceptance and Commitment Improve the Work–Caregiving Interface Among Dementia Family Caregivers

Supplemental Material for Acceptance and Commitment Improve the Work–Caregiving Interface Among Dementia Family Caregivers

Pilot of a Communication Program for Dementia Caregivers Using Improvisational Techniques.

Background/Objectives: This paper is a brief report on a novel pilot program called Improv to Improve for family dementia caregivers to build resilience, communication skills, and improve social caregiving situations in order to reduce caregiver burden and low mood. Methods: We conducted a 6-week improv training for family caregivers including pre- and post-program evaluation of caregiver mood utilizing the Beck Depression Inventory and the Zarit Burden Interview and care-recipient symptoms with the Neuropsychiatric Inventory Questionnaire. Results: Six family caregivers participated in the pilot project and reported small improvements (d = 0.28) in caregiver’s mood and significant improvements in care-recipient’s symptom severity and distress (d = 0.50). Participants all reported agreeing or strongly agreeing with program satisfaction questions and found the training to be useful. Conclusions: These findings have implications for broader implementation of improvisational techniques for educating family dementia caregivers.

Four of a kind: Salient caregiver archetypes to better understand the psychosocial needs and behavioral patterns of dementia caregivers in Singapore

BackgroundFamily caregivers’ lived experiences are often perceived as a homogenous entity, preventing effective identification of unique caregiving needs and appropriate support. Our study examined and classified the varying dementia caregiving experiences in an Asian setting, through establishing caregiver archetypes. MethodsSecondary analysis of semi-structured interviews conducted with 16 dementia family caregivers in a Singapore hospital was performed. Thematic analysis and typological analysis were utilized. ResultsFour caregiver archetypes (Reluctant, Ambivalent, Enlightened, and Selfless) were identified: Reluctant caregivers possessed poor understanding of dementia and experienced immeasurable distress; Ambivalent caregivers carried mixed feelings towards caregiving and felt unsupported; Enlightened caregivers preserved care-recipients’ dignity and accepted challenges with priority on sustainable care; Selfless caregivers were overly-devoted and enmeshed in the caregiver identity. ConclusionOur findings are useful in providing a framework for: (1) rapid understanding of informal caregivers’ varying needs, (2) targeted support in a holistic caregiver-centered manner.

Dementia Family Caregiving in Rural Appalachia: A Sociocultural Model of Care Decisions and Service Use.

Examinations of cultural variations in caregiving experiences and practices tend to focus on racially and ethnically diverse family caregivers. We extended this research by exploring the role of place-based cultural constructs on care decisions of family caregivers for persons living with dementia in rural Appalachia whose experiences and backgrounds dwell outside the lines of dominant culture. Guided by our sociocultural conceptual model of service use and a descriptive qualitative study design, we conducted in-depth interviews with 30 caregivers for persons living with dementia to understand how predisposing and enabling factors influence caregiving decisions, including the use of services to care for persons living with dementia. Three predisposing factors reflecting the culture of rural Appalachian counties in Virginia (reasons for becoming a caregiver, previous caregiving experience, and deference to the person living with dementia) shaped decisions about caregiving responsibilities and service use. Three place-based enabling factors (a personal sense of belonging, knowledge of services, and family support for service use) played an important role in facilitating access to services. Findings revealed subtle variation across caregivers in this study and in comparison, to caregivers' experiences more generally. We interpret these variations in light of culturally influenced attitudes, family norms, and sources of information about formal services. Place-based cultural experience influenced dementia family caregivers' behaviors and choices regarding formal service use, suggesting that investigators should pay more attention to cultural influences in future caregiving research.

Unmet needs and health-related quality of life of dementia family caregivers transitioning from home to long-term care: A scoping review

This scoping review is to identify experiences, unmet needs, and health-related quality of life (HRQoL) of family caregivers transitioning their care recipients with dementia into long-term care (LTC). The methodological framework of Arksey and O'Malley guided the review. Themes from nineteen selected studies were organized around three categories. First, caregiver experiences during LTC placement featured challenges around placement decision-making and distress and changes in relationships and responsibilities. Second, unmet needs of caregivers were desired emotional support and information about transitions. Finally, caregivers’ HRQoL varies around transition. Family caregivers experience unique challenges and can have unmet needs during the LTC placement of their care recipients with dementia. Findings suggest the need for interventions that teach skills, care planning, assistance with conflict resolution, communication training, and guidance finding services and resources.

Causal Mediation of Stress Reduction in Family Dementia Caregivers: A Focus on Mindfulness

Although mindfulness therapies have demonstrated benefits for reducing stress and improving psychological symptoms in family dementia caregivers, the mechanisms underlying these salutary effects are unknown. We report a causal mediation pathway to improvement of stress symptoms in family dementia caregivers with Mentalizing Imagery Therapy (MIT), which employs mindfulness and guided imagery tools to reduce stress and improve understanding of self and others. In a randomized controlled trial of short-term 4-week MIT (N=24) versus a psychosocial support group (N=22), MIT demonstrated superior benefit for reducing perceived stress (p=.006). Increased trait mindfulness was a causal mediator of this effect (p=.02). Neuroimaging pre and post intervention found that increased mindfulness was associated with strengthened connectivity of the dorsolateral prefrontal cortex with an emotion regulation network (p<.001). The results are discussed in light of theories of cognitive control and may inform the design of future studies aimed at reducing family caregiver stress.

Aspects of Grit Among Dementia Family Caregivers

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.

Daily Cortisol Total Output Mediated Sleep and Affect Among Dementia Family Caregivers

Cortisol is a primary stress hormone associated with sleep. We examined daily cortisol as the potential mechanism linking prior night’s sleep and daily mood among 173 dementia family caregivers (M (SD) age = 61.97 (10.66)) who used adult day services (ADS) at least two days a week. Caregivers self-reported sleep characteristics (bed and wake time, sleep quality, care receiver’s night-time problems) and affect (anxiety, depressive symptoms) across eight consecutive ADS/non-ADS days. Salivary cortisol was collected five times each day. Multilevel mediation analysis suggested that daily cortisol total output (assessed as “area under the curve”) mediated prior nights’ total time in bed and daily anxiety, but only on high-stress (non-ADS) days. Mediation was non-significant on low-stress (ADS) days, and at the between-person level. ADS use is respite from a chronically stressful role. Reducing exposure to stress via respite may protect against harmful processes related to sleep, cortisol reactivity, and daily anxiety.

Resilience Among Dementia Family Caregivers in a Changing Social World

Dementia caregivers must manage the social worlds of their loved ones as well as their own. In a mixed methods study, we interviewed 50 family caregivers prior to the pandemic, twice during early phases of the pandemic, and again during the vaccine roll-out phase. Findings revealed how implementation of stay-at-home orders altered reliance on informal support as well as social ties and interactions. Using content analysis, we identified three ways in which caregivers’ managed changes in their social world: rethinking family visits (fewer people, higher quality); reinventing public spaces (church services, exercise venues); and reconsidering self-care (setting boundaries, solace in nature). Caregivers showed varying degrees of resilience in the ways they managed adverse social situations and cared for themselves. Findings reinforce the need for inclusive programs and services to help caregivers learn to maintain supportive social connections that reinforce their care decisions and routines, particularly during times of duress.

Recruiting Diverse Dementia Family Caregivers: What Works for Which Groups?

The purpose of this presentation is to compare success of recruitment methods by race/ethnicity, age, and kinship of dementia family caregivers. We conducted a cross-sectional study and recruited a convenience sample of dementia family caregivers using community-based and online methods. Recruitment success was tracked through survey questions, direct referrals, and community event sign-ups. Using chi-squared statistics, we examined the success of each method by caregiver race/ethnicity, age, and relationship to person with dementia (kinship). There were significant differences in recruitment source based on race/ethnicity, age, and kinship (P<.001). Specifically, referrals and newspaper advertisements were most successful for recruiting older (54 years+), White, non-Hispanic, and spousal or child caregivers; community events and reputable websites for recruiting older, minority, child caregivers; ResearchMatch for recruiting younger, minority, child/grandchild caregivers; and social media for recruiting younger, White, non-Hispanic, and child caregivers. Findings support the importance of implementing tailored methods to reach diverse dementia caregivers.

Learning Needs of Dementia Family Caregivers during the Pandemic

The COVID-19 pandemic has dominated and transformed all caregiving contexts and situations. In a time of COVID-19, caregivers now have to learn how to take all of the complicated precautions to keep themselves and their persons from being exposed to the virus given their population’s mortality rate from COVID-19 infections exceed 40%. As part of a larger initiative to develop an asynchronous online education program for family caregivers of persons living with dementia illnesses (PLWD) to prepare them to master the new demands of their caregiving role in this extraordinary circumstance of the COVID-19 pandemic, we conducted three focus groups with 13 dementia family caregivers to inform the structure, content, and “feel” of the course. Focus groups were conducted with a lead interviewer, via Zoom, audio and video recorded and transcribed for analysis. Participants were asked two groups of questions: their lived experience over the past year and course content for caregiving during crisis. Caregivers identified 4 themes regarding their lived experience of caregiving during the pandemic: (a) mixed feeling about the stay-at-home orders; (b) positive adaptation to telemedicine, (c) vaccine risks and benefits; and (d) impact of social isolation on the PLWD. The groups also recommended specific course content based on their experiences. Participants recommended specific course content based on their experiences, such as health system navigation and the logistics of what to do following the death of a PLWD. Results from these groups have been incorporated into an asynchronous online course to be pilot tested in coming months.

Verbal Communication in Dementia Family Caregiving: Using the VNVIS-CG Scale for In-Home Video Observations.

Communication is fundamental for dementia care and identifying communication behaviors is key to identifying strategies that facilitate or impede communication. To measure caregiver verbal communication, we adapted the Verbal and Nonverbal Interaction Scale for Caregivers (VNVIS-CG) for second-by-second behavioral coding of video observations. The VNVIS-CG was adapted for computer-assisted Noldus Observer coding of video interactions captured at home by family caregivers from the FamTechCare clinical trial. Operational definitions for verbal communication behaviors were developed and inter-rater reliability was excellent (Kappa = .86) using two independent coders. Videos (N=232) were coded featuring 51 dyads; caregivers were primarily female (80%) spouses (69%) of men (55%) diagnosed with moderate to severe dementia (64.7%). Mean caregiver age was 65 years. Silence occurred most frequently (44.9% of the time), followed by caregiver direction or instruction (22.6%), and the person with dementia (PWD) verbalizing (22.8%). Caregiver communication also included asking questions (14.2%), verbalizing understanding (7.9%), repeating information (2.1%), affirmations (1.0%), acknowledging emotions (0.3%), and ignoring (0.0%). Questions most commonly requested clarification, showed interest, or repetitive quizzing; few questions sought to engage PWD input (ex. offers choices, encourages emotional expression, or ask permission). Tone was overwhelmingly neutral rather than humorous, aggressive, or patronizing. The adapted behavioral coding scheme provides a reliable measure that characterizes dementia caregiver verbal communication behaviors for analysis of video observations. Ongoing research will identify strategies that facilitate communication as well as determine how strategies vary by dementia stage, diagnosis, and dyad characteristics.

Recruitment and Retention in Diverse Cohorts: Lessons From Community-Engaged Efforts

Effective behavioral interventions and associated trials reflect the complexity and context of the communities with which they are tailored and the behaviors they seek to address. Community-engaged methodology can serve to capture these complexities, particularly when focusing on health inequities. Significant health and healthcare disparities persist among racial/ethnic minorities and representation of racial/ethnic minorities is lacking within trials that reflects the diversity of the U.S. population. Novel approaches are needed to increase the diversity of participants within behavioral intervention research. This symposium covers the unique barriers and facilitators related to recruitment and retention across a range of populations, including African American and Hispanic/LatinX older adults with hearing loss to diverse dementia family caregivers and community-dwelling Korean American older adults. Beyond the challenges and opportunities, the symposium will focus on effective recruitment strategies. The discussion will include 1) findings from 10 years of recruiting older Korean Americans into community-based trials, 2) lessons in tailoring recruitment efforts to dementia family caregivers, 3) the integration of human-centered design into a community-engaged hearing care intervention targeting low-income and African American older adults, 4) successful recruitment and retention efforts in a community-based participatory research trial in a borderlands community, and 5) the deployment of strategies to recruit Latino, Asian, and African American older adults with depression and anxiety in the setting of the COVID-19 pandemic. This symposium seeks to build the evidence related to recruitment of older racial/ethnic minorities in diverse settings, which is fundamental to addressing health inequities through behavioral intervention research.

Caring Beyond the Challenges: Grit in Dementia Family Caregivers

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.