"An animated socialization without substance:" experiences of persons living with dementia through the COVID-19 pandemic.

BACKGROUND: Like so many others, persons living with dementia have been greatly impacted by the COVID-19 pandemic. A Stakeholder Advisory Council set a research priority to learn more about the experiences of families living with dementia during COVID-19. METHODS: This study was conducted using a multi-method design. Online surveys were completed by 27 persons living with dementia to rate the impact of COVID-19 on their health and healthcare. Additionally, interviews (n = 3) and two focus groups were conducted via Zoom with eight participants to explore the experiences of persons living with dementia during COVID-19. RESULTS: Most participants in this study reported that COVID-19 had some to extreme impact on their anxiety, feelings of isolation, and quality of life. Focus groups and interviews provided context and increased understanding of the main survey findings, with participants also describing other concerns and how they were coping with all of the challenges that came with COVID-19. Five themes from the qualitative data were health, isolation, feelings about COVID-19, adapting to COVID-19, and self-refection. DISCUSSION: Although persons living with dementia described the ways that COVID-19 impacted on their quality of life, they also described strategies for coping. For those persons living with dementia who are able to utilize technology, this study highlights the ongoing need to provide virtual opportunities for socialization and support. These findings also emphasize the need to create safe opportunities for socialization such as small socially distanced activities that may allow persons living with dementia to maintain social connections through the COVID-19 pandemic and throughout the progression of their disease.

"A Different Way to Survive": The Experiences of Family Caregivers of Persons Living With Dementia During the COVID-19 Pandemic.

Family caregivers of persons living with dementia often experience challenges to their health and quality of life related to their caregiving role. The COVID-19 pandemic added substantially to the responsibilities of family caregivers, potentially putting them at greater risk of poor health outcomes and impeded quality of life. To better understand the impact of the pandemic on the experiences of family caregivers, a multimethods study was conducted. Family caregivers of persons living with dementia were invited to complete a cross-sectional survey and a subset of survey respondents were invited to participate in focus groups for added insight. A total of 161 caregivers responded to the survey and 30 participated in the focus groups. Qualitative data from focus groups were used to elucidate deeper insight into quantitative findings from the survey. Findings reflect that the pandemic affected family caregiver health and wellness, access of care and resources, identity, and resilience.

A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care.

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.

Physical and Psychological Health of African American Women Caregivers: Unmasking the Paradox.

Existing evidence consistently shows that African American (AA) caregivers experience a health paradox; participants of AA ethnicity have commonly reported having worse physical health but better mental health related to caregiver burden when compared to other racial groups. However, inconsistencies exist in the literature regarding mental health outcomes for this population. In order to provide culturally appropriate, health-promoting interventions, it is imperative to identify accurately the impact of caregiving burden on the mental health of AAs. Fifteen reports of research on the influence of caregiver burden on health were reviewed to evaluate the legitimacy of the paradox (that may be better explained by the term, 'masking'). The appropriateness of two stress process models and the adequacy of comparative research versus culturally-focused studies for AA women caregivers were examined also.

Technology-Assisted Self-Monitoring of Lifestyle Behaviors and Health Indicators in Diabetes: Qualitative Study.

BACKGROUND: Self-monitoring is key to successful behavior change in diabetes and obesity, and the use of traditional paper-based methods of self-monitoring may be time-consuming and burdensome. OBJECTIVE: This study aimed to explore participant experiences while using technology-assisted self-monitoring of lifestyle behaviors and health indicators among overweight or obese adults with type 2 diabetes. METHODS: Qualitative data collected from the intervention group of a 6-month, three-arm (control, paper diary, and technology-assisted self-monitoring groups) randomized clinical trial were analyzed. Study participants in the intervention group monitored their diet, exercise, and weight using the LoseIt! app, and their blood glucose levels using a glucometer and the Diabetes Connect app. Semistructured group discussions were conducted at 6 weeks (n=10) from the initiation of the behavioral lifestyle intervention and again at 6 months (n=9). All group interviews were audiotaped and transcribed verbatim. Using a combination of thematic and comparative analysis approaches, two trained professionals coded the transcriptions independently and then discussed and concluded common themes for the 6-week and 6-month discussions separately. RESULTS: The sample (n=10), which primarily involved African American participants (n=7) and female participants (n=8), had a mean age of 59.4 years. The following eight themes emerged: (1) perceived benefits of technology-assisted self-monitoring; (2) perceived ease of use (eg, barriers: technical difficulties and lack of self-discipline; facilitators: help from family, friends, and the program); (3) use of technology-assisted self-monitoring; (4) facilitators of engaging in healthy lifestyle behaviors (eg, visualization and awareness of calorie input/expenditure); (5) positive lifestyle change; (6) barriers of engaging in healthy lifestyle behaviors (eg, event influence); (7) learning curve; and (8) monitored data sharing. The first six of these themes were shared between the 6-week and 6-month timepoints, but the codes within these themes were not all the same and differed slightly between the two timepoints. These differences provide insights into the evolution of participant thoughts and perceptions on using technology for self-monitoring and subsequent behavioral lifestyle changes while participating in lifestyle interventions. The findings from the 6-week and 6-month data helped to paint a picture of participant comfort and the integration of technology and knowledge overtime, and clarified participant attitudes, difficulties, behavioral processes, and modifications, as well as health indicators that were experienced throughout the study. CONCLUSIONS: Although there were some barriers, participants were able to identify various individual and external facilitators to adjust to and engage in technology-assisted self-monitoring, and it was concluded that the technology-assisted self-monitoring approach was beneficial, safe, and feasible to use for positive lifestyle change. These patient perspectives need to be considered in future research studies when investigating the effectiveness of using technology-assisted self-monitoring, as well as in clinical practice when recommending technology-assisted self-monitoring of lifestyle behaviors and health indicators to improve health outcomes.