Caregivers of people with dementia and mental health during COVID-19: findings from a cross-sectional study

Background There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

The role of humour and laughter therapy in decreasing caregiver burden among carers of a person living with dementia- A case study

Gibbs (1988) reflective cycle was employed to explore a critical case study involving a senior citizen with dementia and measures to reduce caregiver burden by humour and laughter therapy. This experience highlights key themes of caregiver burden-reduction measures through humour and laughter. This problem is discussed in relation to lack of awareness about measures to reduce caregiver burden arising due to caretaking of a person with dementia. Inclusion of this therapy as a non-pharmacological method of stress management, could be useful in the guidelines for dementia care. Therefore, it is important to include training to all caregivers at home and care home setting to address the issue of caregiver burden.

Spouses’ Emotion Regulation Skills and Depressive Symptoms in the Context of Early Stage Dementia

In older adults, the suffering of a relative with chronic disease or illness can severely impact their caregiver. However, older adults also tend to have better emotional regulation than younger age groups. Very little is known about these dynamics in the context of early-stage dementia in which both spouses are struggling with caregiving or experiencing dementia and need one another for support. In the present study, we hypothesized that when both partners have better emotion regulation skills, each partner’s depressive symptoms would be the lowest. We made the same hypothesis for both the person with dementia and their spouse without dementia. We used self-report baseline data from an intervention study of 70 older adult married couples (N=140) where one spouse has early-stage dementia. Spouses completed questionnaires that measured their emotional regulation habits (Difficulties in Emotion Regulation Scale) and their recent depressive symptoms (CESD). Results from the actor partner interdependence model showed that when both partners had high emotional regulation skills scores there were the lowest levels of depressive symptoms for each dyad member (B=4.31, SE=.94, t(49.9)=4.61, p&lt;.001). Findings suggest couple-focused interventions to enhance emotion regulation skills are important for coping in the early stages of dementia.

Japan’s New Framework on Dementia Care

The number of people with dementia in Japan is ever-increasing. In 2020, 6 million people lived with dementia. The number is expected to increase to 9 million in 2040. This means that a person with dementia will be supported by three working people. To prepare for the big wave of dementia, Japan released the New Orange Plan in January 2015. In 2019, the Framework for Promoting Dementia Care was issued by the Japanese cabinet in which prevention and the opportunity for persons with dementia to age in place were set as the main goals. This framework requires all ministries to promote people’s awareness about individuals with cognitive impairment. The educational targets include taxi drivers, retail shop clerks, bankers, police, and people working in the criminal justice system. I will discuss the New Framework which has potential to assist the country in supporting people living with dementia.

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.

Partnering with Hospital Providers to Facilitate Handoff for Persons with Dementia in the Acute Care Setting

Practice Problem: Individuals with Alzheimer's disease and related dementias cannot verbalize their care needs during transitions of care (TOC) and rely on their home caregivers (HCs) for advocacy. The lack of communication between clinicians in one setting and HCs can lead to detrimental health outcomes for the length of stay. PICOT: The PICOT question that guided this project was: With the assistance of family nurse consultants (P), how does the implementation of standardized care needs communication tool for support persons of persons with dementia (I) vs. no standardized process (C) enhance the ability for the support person to communicate care needs during TOC (O) within 5 weeks (T)? Evidence: The review of high-quality studies reveals evidence that supports clinician-home caregiver communication as an approach to bridge gaps for the person with dementia (PWD) across health care settings. Intervention: The clinician-home caregiver communication checklist was used as an evidence-based tool to enhance the HC’s ability to communicate care needs for the PWD during care transitions. Outcome: There was a clinically significant improvement with the family nurse consultants’ utilization of the tool, and HCs who were offered the tool benefited from that time of preparation for their loved ones. There was a statistically significant improvement in family nurse consultants’ perception of the value and usefulness of the tool after they were introduced to it. Conclusion: The project findings revealed that using the standardized care needs communication tool, HCs can be crucial members to strengthen TOC for the cognitively impaired individual.

Caregiving for Persons Living With Dementia in the New Normal: Family Caregiver’s Perspective

Persons living with dementia (PLWD) are at increased risk for COVID-19 and associated poor outcomes, including: incident delirium, hospitalization, severe symptoms, intensive care admission, and even death. PLWD are likely to rely on family caregivers to maintain their health and well-being in the community. Under normal circumstances, caregiving can be stressful and complex, and the COVID-19 pandemic has the potential to change and exacerbate the stresses of family caregiving. As a part of a larger study using descriptive qualitative methodology to explore the family caregiver understanding and experiences related to delirium in caring for a person with dementia, 14 participants (age x̄ =67, SD= 13.8) were asked about the impact of COVID-19 on their caregiving for PLWD. Thematic analysis of the transcribed interviews using Dedoose generated four overarching themes associated with the family caregiver’s perspective of changes in caregiving during the COVID-19 pandemic: 1) Cautious of COVID-19 exposure, 2) We can’t go in, 3) Feeling of isolation for both the PLWD and caregiver, and 4) Six-feet distance. The current study highlights the importance of understanding the needs of PLWD during a pandemic based upon the perspective of their family caregivers and will inform the development of ways to safely incorporate family caregivers in the interdisciplinary care team. Caregivers are integral to the care of PLWD across settings of care and should be partners even during a pandemic. Solutions for care include integrating technology for individualized approaches. Finally, future areas for research will be discussed.

An Assessment of Dementia Caregivers’ Interaction With Community-Based Services

Respite care is an important service to address caregivers' stress and fatigue when caring for a person with dementia (PWD). YouthCare is a non-medical, at-home, intergenerational respite care program that partners trained student volunteers with PWDs. The Family Caregiver Survey was created and distributed to caregivers of PWDs in Los Angeles to better understand interactions with the community and its caregiver services. The survey assesses caregivers’ demographics, daily activities, mental health, and the type of respite support needed. The survey findings (n=47) show that 53.2% of caregivers are 54 and older and 83% females. 40.4% of the caregivers listened to the radio primarily in the morning while 61.7% watched television in the afternoon to evening time. For transportation of PWDs to and from destinations, 78.3% of caregivers reported using their own vehicles. In regards to their mental health, 61.7% of the caregivers stated that they felt tired and unmotivated to complete daily activities. When asked why they sought respite services, 40% stated that they were overwhelmed by the responsibilities in addition to their own work. The groups that primarily support caregivers are family and professional respite services. Findings indicate that caregivers are most likely to trust resource recommendations from family and friends. Similar surveys should be administered in other cities and in rural locations to improve the generalizability of our findings.