COVID-19 Teleconferencing Experiences of Caregivers & Spouses with Dementia from QA/QI Support Group Study

In summer 2020, researchers conducted a Quality Assurance and Quality Improvement (QA/QI) assessment of the NYU Langone Alzheimer’s Disease and Related Dementias Family Support Program’s adaptations in response to COVID by interviewing 10 participating spouse caregivers of persons with dementia (PWD). The primary adaptations were shifting from in-person to online services, changing support groups from biweekly to weekly, and offering an arts-based group for PWD daily rather than weekly . In the course of these interviews, all respondents described their adaptation to remote teleconferencing programming, and five also contrasted their experiences with those of the PWD. Methods After transcription and de-identification, a codebook was created from the transcript content that included a priori topics of interest as well as emergent themes using framework analysis. These transcripts were then coded by two independent coders through an iterative process and consultation with the codebook creator, who also resolved any discrepancies between coders. Results Respondents reported largely successful transitions to teleconferencing for themselves, though missing the physical contact afforded by meeting in-person. However, they also described some interactional challenges related to participants talking over one another, and suggested more active moderating to facilitate greater turn-taking. The respondents’ descriptions of the PWD’s response suggested a much less successful transition to teleconferencing. Challenges and barriers included lack of interest, difficulty following or participating in conversation, and teleconferencing creating confusion, such making it “hard for her to separate out when everybody's in the same place or not."

Caregiving Between Spouse and Adult Child Caregivers of Older Adults with Cognitive Impairment

Prior studies of caregiving characteristics by type of caregivers are inconsistent, particularly those who are spouses and adult children. This study examined caregiving characteristics between spouses and adult children of cognitively impaired older adults. We analyzed phone-screening data from an ongoing trial of a dyadic sleep intervention program for persons with dementia and their caregivers. Data included spouse caregivers (n=52) and adult child caregivers (n=24). Nearly all participants (95%) lived with their care recipients (91% with dementia). Types of caregiving activities were measured by activities of daily living [ADLs] and instrumental ADLs [IADLs] with their levels of intensity (0 [total independent] to 3 [total dependent]). Care recipients’ sleep was measured by the Neuropsychiatric Inventory-Nighttime Behavioral Subscale (8 items). Analyses included Pearson correlations and t-tests. Adult child caregivers helped their care recipients at significantly higher levels as indicated by their measure of dependence in dressing (1.46±1.22 vs. 0.87±1.16, p=0.044), continence (1.22±1.38 vs. 0.54±1.04, p=0.021), laundry (2.87±0.46 vs. 2.13±1.24, p=0.007), and transportation (3.00±0.00 vs. 2.63±0.79, respectively; p=0.031) than spouse caregivers. Adult child caregivers also reported their care recipients having more difficulty falling asleep (56% vs. 19%, respectively; p=0.004) and having more numbers of sleep problems than spouse caregivers (3.54±2.08 vs. 2.48±1.51, respectively; p=0.014). The findings suggest that adult child caregivers may involve higher levels of caregiving responsibilities during daytime and nighttime, compared to spouse caregivers. Further research needs to explore complimentary ways to involve spouse and adult child caregivers in the care of this vulnerable population.

Predictors of Caregiver Burden of Patients with Alzheimer Disease Attending Day-Care Centres

Nowadays, there are plenty of programs and resources to prevent caregiver burden of patients with Alzheimer’s disease. In spite of that, many caregivers suffer high levels of burden and stress, which leads to an earlier institutionalization of patients. This study aimed to explore the predictors of burden in relative caregivers of patients attending day-care centers and the moderating role of caregiver kinship in these associations. A sample of a hundred and two patient–caregiver dyads was recruited. Burden was measured with a Zarit Burden Interview. Measures of patients’ cognition, insight, depression, behavioral disturbances, functional ability and overall physical health were considered as predictors. We found that apathy, irritability and delusions and, patients’ mobility are the main determinants of caregivers’ burden. The strength of relationship between delusions and irritability was higher in spouse caregivers. Interventions to reduce burden should be adapted to the specific needs of a particular type caregiver.

217 - ECN Award: Effect of a Chronic Disease Self-Management Support Program for Spouse Caregivers of Relatives with Dementia in Shanghai, China: A Randomised Controlled Study

Background:Research found that caregivers of relatives with dementia（RWD)were more vulnerable to chronic diseases than those caring for relatives with other diseases. Unfamiliarity with and/or difficulty in balancing their own health needs was common among the caregivers, from the findings of our previous studies and relevant literatures. Therefore, an educational and psycho-social support program named Chronic Disease Self-Management Support (CD-SMS) program was developed for spouse caregivers of RWD in Shanghai, China.Research Objective:This study was to examine the effectiveness of the CD-SMS program on spouse caregivers’ health-related results, including caregiving self-efficacy, self-efficacy for chronic condition management, and their health behavior.Method:This study was a randomised, wait-list controlled design. A total of 53 participants with common chronic conditions were recruited and assigned to experimental (n = 25) and waiting-list control group (n=28) by stratified randomization. All participants received an illustrated psychoeducation booklet. The intervention group received six bio-weekly support group sessions, and the control group will receive the same support group sessions after the posttest. Participants in both groups received baseline and post-test assessments. The caregivers were assessed with the Chinese versions of Self-Efficacy for Managing Chronic Disease 6-item Scale, Self-Efficacy Questionnaire for Chinese Family Caregivers and Self-Management Behaviors Scale. The care recipients were measured with the Chinese version of Disability Assessment in Dementia.Preliminary results of the ongoing study:A significant interaction between time and group was found in total scores of self-efficacy for managing chronic disease and caregiving self-efficacy for gathering information (P＜0.05). After intervention, caregivers in experimental group reported significant improvements in the total scores of self-efficacy for managing chronic disease, caregiving self-efficacy, and three self-management behaviors (stretching and strengthening exercise, cognitive symptom management, and communication with physicians). The care recipients’ levels of activities of daily living in each group were worse at posttest compared to those at baseline (P＜0.01).Conclusion:The findings indicated that the CD-SMS program was effective in improving the caregivers’ confidence in balancing their caregiving management and their chronic health conditions management, and their main health behaviors were also improved.

Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study

There is growing research on carers of people with Parkinson’s disease (PD) experiences. However, the impact on carers by PD delusions is not specifically examined. We conducted a qualitative study using semi-structured interviews of spouse carers of PD patients with delusions. Thematic analysis was employed using MAXQDA 2018. Twelve spouse participants (SPs) were interviewed. Four themes emerged: Managing incredulity: trying to make sense of delusion content; Hypervigilance: constant alertness to bizarre and threatening discourse and behavior; Defensive strategizing: anticipating delusions and potential consequences; Concealing and exposing: ambivalence about disclosing the effect of delusions yet wanting support. SPs reported effects on their emotional well-being and marital relationship and challenges to an orderly, predictable life. SPs were reluctant to share their experiences due to delusion content (often infidelity and sexual in nature) and a desire to protect their spouses’ image. SPs’ awareness of the potential for delusional thought was low prior to their occurrence. Conclusions: education surrounding potential neurobehavioral changes should occur for patients and carers. Clinicians should be aware that the impact of delusions on carers is often greater than disclosed in clinical interviews. Interdisciplinary teams speaking separately to spousal carers may improve disclosure and delivery of appropriate psychological support.

The Religious Meaning System and Resilience in Spouse Caregivers of Cancer Patients: A Moderated Mediation Model of Hope and Affect

The character of the relationship between religiosity and resilience depends to a large extent on mediation and moderation mechanisms which rely on cognitive and emotional processes. Research conducted within hope theory and the broaden and build theory indicates that hope and affect can mediate and moderate this relationship. The present study explored whether the relationship of the religious meaning system with resilience in spouse caregivers of cancer patients can be mediated by hope and simultaneously moderated by positive and negative affect. A total of 241 spouse caregivers completed a set of questionnaires. The results revealed that hope mediated the relationship between the religious meaning system and resilience. Furthermore, positive affect but not negative affect moderated the indirect effect of the religious meaning system to resilience through hope.

Spousal Care and Pain Among the Population Aged 65 Years and Older: A European Analysis

Background: Spousal care is the most important source of informal care in old age. Nevertheless, despite the growing importance of this issue, the association between providing spousal care inside the household and pain remains unexplored in Europe.Objective and Methods: This study aims to estimate the prevalence of pain reported by spouse caregivers aged 65 plus that provide care inside the household and to investigate the association between providing spousal care and pain. Data from 17 European countries that participated in wave 6 of the Survey of Health, Aging and Retirement in Europe (SHARE) is used. The analyses are based on 26,301 respondents aged 65 years and older who provide informal care inside the household to their spouse/partner exclusively (N = 1,895) or do not provide any informal care (inside or outside the household) (24,406). Descriptive statistics and multilevel logistic regressions (individual-level as level 1, and country as level 2) were performed.Results: Overall, spouse caregivers report pain more often (63.4%) than their non-caregiver‘s counterparts (50.3%). Important differences in the prevalence of pain among spouse caregivers were found between countries, with Portugal (80.3%), Spain (74.6%), France (73%), Italy (72.4%), and Slovenia (72.1) showing the highest prevalence of pain, and Denmark (36%), Switzerland (41.5) and Sweden (42.3%), the lowest. Results from multilevel logistic regressions show that European individuals aged 65+ who provide spousal care have an increased likelihood of reporting pain (OR 1.30; CI = 1.13–1.48).Conclusion: Our results suggest that in Europe, spouse caregivers aged 65+ are at greater risk of experiencing pain. Therefore, European policymakers should consider spouse caregivers as a health priority group, and take measures to ensure they receive comprehensive health and socio-economic support.