You Pray for Him a Bit More”: Young Adults’ Positive Aspects of Caregiving (PAC) Towards Parental Cancer

Young adult caregivers are growing in number, yet there is a paucity of literature on their role in informal family caregiving. The Positive Aspects of Caregiving (PAC) framework has been developed within Dementia carers to indicate positive outcomes of the caring experience. The current study specifically explored the narratives of four young adult carers’ lived experience of caring towards their parents with cancer, using Interpretative Phenomenological Analysis (IPA) through the lens of PAC. Main themes developed from this study were unfolding the child-parent dyad, character building and affirmation of value systems, time reframed, and sustaining caregiving continuity with subthemes surrounding responsibility, appreciation beyond the role reversal, acceptance and sources of comfort. This small-scaled study contributes towards a new understanding of the young adult population, their perception of caregiving and briefly informs the PAC beyond a dementia population.

An integrative theoretical model to predict positive aspects of caregiving in dementia

Family caregiving for dementia is the crucial informal care resource to buffer the associated disease burden. Whereas substantial research focused on ameliorating the caregiving burden through increasing their coping resources, least attention is placed on how to promotive their positive aspects of caregiving (PAC). This longitudinal exploratory study aimed at testingWhereas the perceived self-efficacy was further enriched in the context of good social sup an integrative theoretical model which attempts to explain the evolvement of PAC from the paradigm of stress and coping and existentialism. From to June 2017 to April 2020, we have recruited a total of 403 dementia caregivers from the a geriatric clinic in Hong Kong (mean age = 56.2, SD = 12.2; child-caregiver: 73.9%). About 61% of them were taking care of PwD of moderate to severe dementia. Validated instruments were used to measure the hypothesized model constructs. By using path analysis, it was found that PAC was evolved from two conditions, including i) perceived self-efficacy developed through active coping strategies for carers with good to moderate social support and ii) meaning-focused coping in the context of high religiosity, better social support and active coping. Data-model fit was evident by RMSEA = 0.023, CFI = 0.994, NFI = 0.968 and AIC = 97.762. The findings suggested that PAC was evolved from the interaction of the stress-coping and meaning-making process. Empowering carers for successful caregiving experience, facilitating them to make meaning in the process, enhancing good dyadic relationship and social support are crucial to cultivate PAC.

Sources of Positivity in the Daily Life of Family Caregivers of Persons with Dementia

Family caregivers often experience fatigue, burnout, and health complications yet also enjoy many aspects of caregiving that may benefit their well-being. This study identifies positive aspects of caregiving in the daily life experiences of dementia family caregivers in order to inform interventions to support caregivers’ well-being. This case study entails a secondary analysis of open-ended question data obtained from 165 family caregivers who answered daily diaries over 21 days (n = 2841 responses). We used content analysis to organize and elicit thematic categories from the data collected in response to the question “what was the best part of your day.” A final 762 responses were selected as meeting the “care” criteria for the study, with an inter-rater reliability of 91.6%. Data analysis revealed three major sources of daily positive aspects including: caregiver-focused, patient-oriented, and support-system based. The analysis also revealed seven different kinds of daily positive aspects, such as getting to enjoy time with the care recipient or getting to accomplish other non-caregiving tasks. Many of the positive aspects of caregiving reported were enabled by social support, but they were ultimately from how they utilized that support (e.g., getting alone time) that provided the positivity. The findings of this study demonstrate the important role social support plays in caregiving, as well as highlights other possible intervention targets to create easier, more positive days for family caregivers.

Preliminary Findings of a National Survey of Black ADRD Family Caregivers

The National Caregiver Survey aims to capture a representative sample of Black Alzheimer’s disease and/or related dementias (ADRD) family caregivers who are 55+ to better understand the relationships between adaptation to caregiving, coping, and health. Following targeted social media marketing, ADRD family caregivers (n=60) completed an electronic survey capturing over 200 data elements. Analysis was completed using Spearman correlation coefficients. Preliminary results suggest that 55% of participants were hypertensive (n=33) and 27% (n=16) had diabetes. Participants were generally overweight with an average BMI of 29. 28% (n=17) of the sample were smokers. A negative correlation was identified between the level of care needs of the recipients (IADLs) and alcohol use (p=0.037). There was also a correlation between identifying positive aspects of caregiving and adaptive coping (p=0.045). Caregiver support programs should facilitate development of effective coping strategies for new family caregivers, with particular attention on smoking cessation, brain-healthy diet, and exercise.

Family Caregiving Subtypes in the Caregiving Transitions Study: A Latent Class Analysis

Family caregiving requires activities and experiences that have negative and positive features, producing stress but also providing benefits. The Caregiving Transitions Study (CTS) enrolled 283 caregivers from a national epidemiologic study, of which 32 were caregivers prior to enrollment in the parent study, and 251 became caregivers while participating in the parent study. Telephone interviewers were conducted after caregivers provided care for a minimum of 1.6 years (mean=7.7 years). Latent class analysis (LCA) was used to detect unobserved groups of caregivers. Number of problems (i.e., ADL, IADL, communication, emotional, disruptive behavior), average burden per problem, depressive symptoms, perceived stress, purpose in life, positive aspects of caregiving, hours of care, and duration providing care were used as indicators. Classes were subsequently compared on several external variables, including demographics, quality of life, leisure activities, and caregiving strain. The best-fitting model consisted of three classes (4.6% long-term, 27.6% high-distress, and 67.8% moderate-distress). Classes were similar with respect to sex, age, race, and primary caregiving status of the caregiver. Long-term caregivers had much longer caregiving durations and commonly provided care to a child. The high-distress class was noteworthy in terms of greater number of experienced patient problems; greater likelihood of caring for a person with dementia; higher levels of caregiving strain, depressive symptoms, perceived stress, and perceived burden; and lower levels of quality of life, purpose in life, positive aspects of caregiving, and leisure activities. These findings suggest that caregivers can be classified into distinct subtypes, with one subtype characterized as experiencing high distress.

Positive Aspects of Caregiving in Incident and Long-Term Caregivers: Role of Social Engagement and Distress

Positive aspects of caregiving (PAC) are positive appraisals that caregivers report about their role such as feeling appreciated or important, and may increase with caregiver adaptation over time. We aimed to examine differences in PAC by caregiving duration and social engagement, controlling for measures of distress. A total of 283 African American or White caregivers from the Caregiving Transitions Study with a wide range of caregiving durations were included in our analysis. We used multivariable linear regressions to model total PAC score on years of caregiving and social engagement (social network, monthly social contact), adjusting for age, sex, race, marital status, relationship to care recipient, dementia status of care recipient and measures of distress (depressive symptoms, perceived stress, caregiving strain). Caregivers with higher social engagement reported significantly higher PAC while caregivers with longer duration of care reported marginally higher PAC in most analytic models. African American caregivers reported higher PAC compared to White caregivers. Dementia caregivers reported lower PAC than non-dementia caregivers in models that adjusted for demographic variables and social network size, but the association was attenuated with the addition of caregiving strain. In summary, higher social engagement and longer care duration were associated with higher PAC after adjusting for demographic variables and measures of distress. Future studies should aim to understand how caregivers shift appraisal to positive aspects of their role and explore implementation of interventions targeting PAC in order to improve the caregiving experience.

COVID-19 Silver Linings - Experience of Spousal Caregivers of Persons with Dementia Engaged in Support Program

Caring for a person with dementia (PWD) has been consistently associated with negative effects on health, including increases in caregiver depression, anxiety, and burden. Emerging studies have shown that the COVID-19 pandemic has increased these factors due to reported increases in caregiver workload and cognitive and behavioral symptoms of the PWD. We interviewed 10 spousal caregivers of PWD from the NYU Langone Alzheimer’s Disease and Related Dementias Family Support Program in Summer 2020 during the COVID-19 pandemic in order to gain feedback about their experiences during the pandemic and the transition from in-person to videoconferencing that could be used to improve services and support. Caregivers discussed the challenges faced during the pandemic but also the unique opportunities the situation presented. We report here on those positive aspects of COVID-19 from the perspective of the caregivers we interviewed. Methods Interviews of caregivers residing with their spouses in the New York City area were conducted via videoconferencing, transcribed, deidentified, and analyzed using framework analysis methods. Results We found that caregivers reported some positive reaction to videoconferencing that included increased support group cohesion, increased convenience, feeling less obligated to participate in events, and new opportunities for social contact. Participants also discussed positive inter-couple relationship changes such as increased quality time spent together. Our findings resonate with a body of literature focused on understanding the positive aspects of caregiving. Understanding the full presentation of the caregiver experience, including both positive and negative aspects, is important for developing interventions and resources for this unique group.