Feasibility and Considerations for Remote Interviewing of Persons Living With Dementia: Adaptations for COVID-19

Abstract The continuing COVID-19 pandemic has necessitated changes to research protocols and approaches to mitigate health risks to both study participants and researchers. This is particularly true of studies exploring the biopsychosocial well-being and personal perspectives of older adults and those at elevated risk of COVID-19 complications. While videoconferencing platforms have enabled remote work and social activities, reliance on them may potentially exclude some individuals (e.g., those without digital devices, access to high speed internet or proficiency with technology). Persons living with dementia (PLWD) may experience difficulties navigating videoconferencing systems and building rapport with interviewers, though the inclusion of PLWD in research is necessary to ensuring their equitable representation. This presentation disseminates promising practices and lessons learned from a longitudinal study conducting remote interviews on sensitive topics with PLWD and their care partners (CP). Findings are drawn from a case study of the Better Together Dementia Care Study, an 18-month longitudinal study of PLWD (N=8) and their CPs (N=13), which implemented remote interviewing in Summer 2020 to gather data on the quality-of-life, resilience, relationship quality, adverse childhood experiences, mistreatment, and health status of PLWD. Researchers were able to interview most enrolled PLWD (n=7) via videoconferencing. Paper surveys were mailed to phone-interviewed participants, enabling them to view questions and answer choices in concordance with verbal queries. Researchers also tested a protocol asking CPs to leave the room while PLWD answered questions on sensitive topics. Findings support the use of remote interviewing with PLWD and provide insights to guide replication of these approaches.

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Preparing Students to Interact With Persons With Dementia in a Research Context

Innovation in Aging ◽

10.1093/geroni/igaa057.007 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 3-3

Author(s):

Roberta Peterson ◽

Elizabeth Avent ◽

Zachary Gassoumis ◽

Jeanine Yonashiro Cho ◽

Bonnie Olsen

Keyword(s):

Human Subjects ◽

Well Being ◽

Role Playing ◽

Lessons Learned ◽

Quality Data ◽

Pilot Training ◽

Educational Approach ◽

Care Partners ◽

Control And Prevention ◽

Functional Capacities

Abstract By U.S. Centers for Disease Control and Prevention estimates, the number of older adults with Alzheimer’s Disease and related dementias (ADRD) is expected to increase 278% by 2060 to affect approximately 13.9 million individuals. Research is needed to not only improve understanding and treatment of ADRD but to also study its effect on the physical, emotional, and psychological well-being of persons with dementia (PWD) and their care partners (CP). However, due to the diminishing cognitive and functional capacities of PWDs associated with the progression of ADRD over time, research efforts are sometimes hampered by a plethora of potential scientific, logistical, ethical, and emotional barriers. This session will introduce an educational approach used to train students who are interested in conducting in-home research among PWDs and their CPs and share lessons learned through the program’s pilot training of undergraduate and graduate students (N=6). Through didactic training, role-playing exercises, and experiential learning processes, trainees are equipped to accompany research project interviewers into the homes of PWD and assist in implementing research protocols. Students receive extensive training in the disease trajectories of ADRD, the impacts of disease on PWDs and their CPs, ways to communicate and interact with PWDs, best practices in promoting the protection and autonomy of human subjects with dementia, and approaches to obtaining quality data for research.

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Extroversion and Conscientiousness Predict Deteriorating Job Outcomes During the COVID-19 Transition to Enforced Remote Work

Social Psychological and Personality Science ◽

10.1177/19485506211039092 ◽

2021 ◽

pp. 194855062110390

Author(s):

Anthony M. Evans ◽

M. Christina Meyers ◽

Philippe P. F. M. Van De Calseyde ◽

Olga Stavrova

Keyword(s):

Longitudinal Study ◽

Turnover Intentions ◽

Well Being ◽

The Other ◽

Remote Work ◽

Job Outcomes ◽

The World ◽

Deteriorating Job ◽

The Relationship ◽

Over Time

At the beginning of the COVID-19 pandemic, organizations around the world rapidly transitioned to enforced remote work. We examined the relationship between personality and within-person changes in five job outcomes (self-reported performance, engagement, job satisfaction, burnout, and turnover intentions) during this transition. We conducted a four-wave longitudinal study, from May to August 2020, of employees working from home due to COVID-19, N = 974. On average, self-reported performance decreased over the course of the study, whereas the other outcomes remained stable. There was also significant between-person variability in job outcomes. Extroversion and conscientiousness, two traits traditionally associated with desirable outcomes, were associated with deteriorating outcomes over time. Extroverted employees and conscientious employees became less productive, less engaged, and less satisfied with their jobs; and extroverted employees reported increasing burnout. These results add to our understanding of how personality predicts within-person changes in performance, well-being, and turnover intentions during the pandemic.

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Remote Interviews and Visual Timelines with Patients: Lessons Learned

Studies in Health Technology and Informatics - Public Health and Informatics ◽

10.3233/shti210298 ◽

2021 ◽

Author(s):

Paula Valkonen ◽

Nina Karisalmi ◽

Johanna Kaipio ◽

Sari Kujala

Keyword(s):

Well Being ◽

Lessons Learned ◽

User Studies ◽

Careful Planning ◽

Extra Effort ◽

Sensitive Topics ◽

Health Related ◽

Rich Data ◽

Confidentiality And Privacy ◽

Remote User

This article aims to support the design of remote user studies in the healthcare and well-being field. We introduce lessons learned from conducting remote interviews and using visual timelines as pretasks involving patients from two eHealth projects. Based on our experience, we conclude that remote interviews and visual timelines can provide rich data about user needs. However, careful planning is required. Building trust, rapport, confidentiality, and privacy requires extra effort from the researcher in studies involving sensitive topics. In this paper, we present a list of practical tips for planning qualitative health-related user studies.

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Associations of Adverse Childhood Experiences with Frailty in Older Adults: A Cross-Sectional Analysis of Data from the Canadian Longitudinal Study on Aging

Gerontology ◽

10.1159/000520327 ◽

2021 ◽

pp. 1-10

Author(s):

Oxana Mian ◽

Laura N. Anderson ◽

Daniel W. Belsky ◽

Andrea Gonzalez ◽

Jinhui Ma ◽

...

Keyword(s):

Older Adults ◽

Longitudinal Study ◽

Adverse Childhood Experiences ◽

Parental Death ◽

Well Being ◽

Cross Sectional ◽

Childhood Experiences ◽

Cross Sectional Analysis ◽

Adverse Childhood ◽

Sectional Analysis

Introduction: Frailty in older adults, characterized by a decline in multiple physiological systems and increasing vulnerability to loss of independence, disability, and death, is a public health priority in developed countries. Etiology of frailty extends across the lifespan and may begin in early life, but empirical evidence for this association is scarce. In this study, we examined whether adverse childhood experiences (ACEs) are associated with frailty in later life. Methods: We conducted a cross-sectional analysis of data for a population-based sample of 27,748 adults aged 45–85 years from the Canadian Longitudinal Study on Aging. The frailty index (FI) was computed with 76 health-related characteristics of physical and cognitive performance, self-rated health, chronic conditions, visual and hearing ability, activities of daily living, and well-being. Self-reported exposure to ACEs included physical, emotional, and sexual abuse, neglect, and witnessing intimate partner violence prior age of 16 and parental death, divorce, and living with a family member with mental illness prior age of 18. Generalized linear regression models with gamma error distribution and identity link function, adjusted for age and sex, were used to examine associations of each ACE type and the number of ACE types (0, 1, 2, or 3+) reported by an individual with FI. All models were adjusted for income, education, smoking, and alcohol consumption in sensitivity analysis. Results: Individuals exposed to ACEs had elevated levels of FI (mean = 0.13, SD = 0.09) than those unexposed, with the largest difference observed for neglect (B [95% CI]: 0.05 [0.04, 0.06]) and the smallest for parental death and divorce (0.015 [0.01,0.02]). The ACE count was associated with frailty in a graded manner, with the FI difference reaching 0.04 [0.037, 0.044] for participants exposed to 3+ ACE types. The association between ACEs and frailty tended to be stronger for women than men and for men aged 45–64 years than older men. Conclusions: Our study supports previous studies showing that exposure to ACEs is associated with frailty in adults. Our findings suggest that screening for ACEs involving childhood maltreatment may be useful for identifying individuals at risk of frailty and prevention of ACEs may have long-term benefits for healthy aging.

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Overcoming Ethical Challenges in Conducting Research Among Persons With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.066 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 20-21

Author(s):

Jeanine Yonashiro Cho ◽

Elizabeth Avent ◽

Roberta Peterson ◽

Laura Mosqueda ◽

Zachary Gassoumis

Keyword(s):

Ethical Issues ◽

Well Being ◽

Lessons Learned ◽

Ethical Challenges ◽

Care Partners ◽

Moderate Dementia ◽

Conducting Research ◽

The Right

Abstract By 2060, the number of older adults with Alzhemier’s Disease or related dementias (ADRD) is expected to encompass approximately 13.9 million Americans. Recognizing this, the federal government has prioritized research on ADRD and their effect on the physical, emotional, and psychological well-being of persons with dementia (PWD). Such research is complicated by disease-associated decline in cognitive and functional capacity among PWDs which can impair participant ability to process and communicate information, potentially increasing their exposure to negative research-related experiences and compromising the accuracy and reliability of provided data. Nevertheless, as a key stakeholder group, PWD should have the right to participate in research on ADRD. This session will present a case study of ethical issues that emerged in an NIH-funded study utilizing mixed-methods to examine caregiving and care dyad relationships between PWD and their care partners over an 18-month follow-up period. Ethical issues examined will include: (1) PWD capacity to consent to research at baseline and (2) during follow-up visits, (3) Obtaining accurate and reliable data from persons with mild to moderate dementia, (4) Assessing PWD distress while engaging in data collection processes, and (5) Reporting of negative caregiving and life experiences, such as elder mistreatment. The discussion of these topics and presentation of lessons learned holds promise for improving research methodology in studies involving PWD and enabling researchers to increase the involvement of persons with mild to moderate dementia in research on ADRD.

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