Virtual day center for people with dementia and their caregivers during the COVID-19 pandemic

ABSTRACT The coronavirus disease 2019 (COVID-19) pandemic suspended face-to-face assistance offered by community spaces, such as day centers (DCs). People with dementia (PwD) and their families were faced with the risks posed by social detachment and suspension of treatments. Objective: This study aimed to present a virtual day center (VDC) program offered as a preventive strategy to reduce the damage caused by social isolation and interruption of treatment imposed by the pandemic. Methods: The experience report, describing the feasibility of a VDC program, offered to 26 PwD and their caregivers, during the first year of the pandemic. The VDC held individual and group meetings with PwD and their families and psychoeducational support groups for caregivers. Results: The attendance rate in group activities was 80%, and that in the caregiver group was 68%, showing a good virtual interaction. Throughout the year, three PwD interrupted the service due to difficulties of the caregivers to reconcile the schedules of the activities with their professional commitments and the absence of a support network, three others died, and two were institutionalized. PwD remained physically, socially, and cognitively active through daily virtual activities. Guidance and support for caregivers contributed to the organization of routines and adaptation to the isolation and maintenance of the bond. Family meetings made it possible to mediate conflicts and expand the support network. Conclusions: VDC is a promising modality to assist the needs and demands of PwD and their caregivers. VDC can contribute to the expansion of this intervention to individuals and families who do not have access to face-to-face treatment.

Feasibility of the ACTPlan Program for African American Dementia Caregivers: A Self-Directed Multimedia Delivery

African Americans (AA) are less likely than White Americans to complete advance care plans or end-of-life treatment documents. They face significantly greater risk of Alzheimer’s Disease, a silent epidemic for this population, and other dementias. The healthcare system’s lack of dementia support for AAs contributes to disparate care. A four-session caregiver group education program was conducted on advance care planning for AA dementia family providers. The program was based on Kolb’s Experiential Learning Model and initially found effective in an R01 study using in-person delivery by a professional. The present pilot assessed feasibility of delivering the program in a self-directed multimedia format without professional facilitation, using Session 1 on tube feeding decisions as the test session. Twenty-six AA dementia caregivers completed the session in groups of 5 to 8 at a church equipped with a large TV screen. On-screen prompts guided navigation through the program which included recorded lecture, slides, short videos on decision-making, and group discussions. Using quantitative and qualitative methods, pre-and post-survey instruments were administered and interviews conducted. Usability ratings averaged 84%. Knowledge and self-efficacy gains exceeded those of the R01, with a 35% increase in correct responses on knowledge items, versus 18% for the R01 subjects; and increase in perceived decisional self-efficacy of 31% versus 30% for the R01 subjects. Qualitative feedback was universally positive. These findings confirm the feasibility of the self-guided multimedia approach to delivery of the program. A large RCT is planned which, if successful, will support wide dissemination to AA caregivers in need.

Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation

Background This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of parents of similar-age children without DMD. Methods A web-based survey included DMD caregivers and a nationally representative comparison group of parents of children without DMD stratified by Child Age Group. Outcomes included quality of life, resilience, caregiver impact, stressful life events, financial strain, out-of-pocket expenditures, work productivity and unrealized ambitions. General linear models assessed the main effect of Caregiver Group and the interaction of Caregiver Group with Child-Age-Group, after adjusting for demographic covariates. Results Compared to parents without a DMD child, DMD Caregivers reported better physical health but worse mental health, positive affect/well-being, environmental mastery, difficulty paying bills, and more hours missed from work. Providing caregiving support for DMD teenagers was the most challenging. DMD caregivers curtailed their educational and professional ambitions, and modified their homes to accommodate the disability associated with DMD. Their non-DMD children had to make sacrifices as well. Nonetheless, in resilience and life stress, DMD caregivers were comparable to the comparison group, and showed consistent levels of positive emotions across the age of their DMD child. Conclusion DMD caregivers fared worse on most outcomes and faced more hurdles in work life. They face constraints and hidden costs that impact their health and financial well-being. Caregivers of teenagers with DMD reported higher impact. Nonetheless, parents of DMD children of all ages maintained notable resilience and positivity.

The Effect of Long Term Care Resources on Burdens for Caregiving People Living with Dementia in Taiwan

Background: There is an increasing awareness of caregiver's burden, especially in those caring for people with dementia. The caregiver burden has been studied extensively in Western countries; however, the interpretation of the results and replication of the intervention may deem unfit in the Chinese culture. Therefore, this study identifies the change in caregiver burden by interventional methods under current Taiwan's long-term care Act 2.0.Method: A total of 2,598 newly diagnosed dementia outpatients was evaluated by the Changhua Christian Hospital dementia care team. Eighty patients utilize one of the three care resources, including community-based services (n = 33), home-based services (n = 19), or taking care by foreign caregivers (n = 28). Participants in the control group were selected by matching their global CDR score, gender, age, and caregivers' age with a 1:4 ratio. All caregivers completed the Zarit Burden Interview (ZBI) questionnaires before and six months after utilizing the care resources. Results: The home-based and the foreign caregiver groups have the highest baseline ZBI scores with 37.63±16.14 and 36.57±17.14, respectively. The second ZBI score was assessed about six months after the baseline showing that the home-based group remained the highest caregiver burden (ZBI = 31.74±12.23) and the foreign caregiver group showed the lowest burden (ZBI = 25.68±12.09). The mean difference in the ZBI score confirmed that the foreign caregiver group had the most improvement, averaging a decrease of 17.99±31.08 points (adjust observation time). A linear regression model showed that home-based care and foreign caregiver contributes the most reduction in caregiver burden (-11.83 and -19,07 ZBI scores, respectively).Conclusion: Caring for people with dementia includes caring for their caregivers. Dementia care team should provide proper social resources, which are crucial in the alleviation of caregiver burden.

Needs of Alzheimer’s Charges’ Caregivers in Poland in the Covid-19 Pandemic—An Observational Study

In Poland, 92% of elderly people with dementia are cared for at home from diagnosis until death, and 44% of caregivers provide care on their own, without any support from other people. The aim of this study was to identify the needs, created because of the Covid-19 pandemic, of caregivers of people with Alzheimer’s disease (AD). The study group consisted of 85 caregivers in the age range from 23 to 78 years and 80 (91.1%) were women. The questionnaire on the life situation of the caregiver and 10-item Perceived Stress Scale (PSS-10) were used. High levels of stress were found in 75 of the 85 subjects, representing 88% of the total. The greatest difficulties were identified in health care and in finding additional care for the charge. PSS-10 correlated with the deterioration of illness during Covid-19, changes in daily functioning, and concerns about both the health of the charge and caregiver. The level of stress severity in the caregiver group of charges with mild AD was higher than in the caregiver group of charges with moderate AD. The provision of extra care and professional psychological support for caregivers were identified as the greatest needs.

Marital Quality and Mental Health Among Caregiving Dyads

We examined whether the associations between marital quality and mental health were equally strong among dyads in which one spouse was providing care to a spouse (n = 155), parent (n = 61), or another adult (n = 176). Using Wave 2 of the NSHAP and actor-partner interdependence (APIM) models, we found significant differences (p=.004) among groups. Marital quality was negatively associated with one’s own depressive symptoms (b=-1.29) for husbands in the spousal caregiver group, whereas marital quality was negatively associated with one’s own depressive symptoms for wives in both the parental (b=-1.27) and other adult (b=-1.96) caregiver groups. The only partner effect was the negative association between wives’ marital quality and husbands’ depressive symptoms (b=-2.59) among dyads in which one spouse was a parental caregiver. These results point to the importance of understanding the context of caregiving when examining the protective effect of spouses’ marital quality on mental health.

413 - Telehealth in Multiethnic Caregiver Support Group: Transition from Telephone to Video in the Age of COVID-19

Background:Caregivers of persons with Alzheimer’s Disease and Other Dementias are a population in need of support as they are vulnerable to emotional, physical, and mental exhaustion associated with caregiver burnout. While CDC guidelines state that social distancing is the greatest protective factor, it can already exacerbate feelings of isolation and stress. Technology offers the opportunity to maximize socialization and access to healthcare; however, research shows that digital platforms are most underutilized by older and lower socioeconomic patients.Objective:This report describes the transition of a weekly caregiver support group from telephone to video conferencing to improve connectedness during a period of social isolation.Method:In 2020, the caregiver support group met weekly over the phone. At each session, there were increased discussions of moving the telephone support group to a video platform. A focused discussion about technology platforms was held to gain an understanding of caregiver attitudes and thoughts regarding technology in which caregivers worried that a video platform would be intrusive and invasive. In June 2020, unreliable phone service resulted in the group transitioning to video.Results:The caregiver group consisted of 5 active members, 2 African American, 2 Asian, and 1 Caucasian. Initial problems included connectivity issues, needing to switch to multiple devices, and assistance with troubleshooting and utilizing the platform. However, caregivers reported feeling that the transition to video was the most natural next step and assisted with reducing feelings of isolation, anxiety, and fear they reported as a result of social distancing due to COVID-19. Caregivers reported feeling connected and because they knew each other so intimately, no longer felt video was intrusive.Conclusions:For older populations who are not familiar with technology, it is important to take steps before beginning a new platform service. This allows for a natural progression to unfamiliar technology. The video platform provided an opportunity for caregivers to be together while apart, which is important for mental health and decreasing caregiver burden.

Psychological Well-Being Among Informal Caregivers in the Canadian Longitudinal Study on Aging: Why the Location of Care Matters

Objectives A caregiving stress perspective suggests that caregiving harms psychological well-being in informal caregivers, whereas a caregiving rewards perspective suggests that provision of care benefits psychological well-being. This research examines whether both perspectives apply to caregiving experiences, but differently by the primary location of caregiving (i.e., in-home, other residence, and institution), as well as by gender. Methods We analyzed depression and life satisfaction in the nationally representative Canadian Longitudinal Study on Aging (N = 48,648), first comparing noncaregivers (N = 27,699) to a combined caregiver group (N = 20,949) and then stratifying caregivers by the primary location of care. Results When considered as a single group, caregivers suffered relative to noncaregivers in terms of life satisfaction and depression. When stratified by the location of care, only in-home caregivers reported both greater depression and lower life satisfaction. Nonresidential caregivers did not differ significantly in levels of depression from noncaregivers and reported higher life satisfaction. Institutional caregivers reported greater depression than noncaregivers, but did not differ significantly in life satisfaction. These patterns were stronger among women than men. Discussion Both the caregiving stress and caregiving rewards perspectives are applicable to the caregiving experience, with the stress perspective more applicable to in-home caregivers and the rewards perspective more relevant to nonresidential caregivers. Recommendations include targeted practice focused on the location of care as well as the gender of the caregiver. Given that nonresidential caregivers actually benefit from providing care, interventions need to focus on identifying and bolstering positive aspects of the caregiving experience.