Supportive care decision-making processes of persons with dementia and their caregivers.

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.

Challenges and opportunities in conducting research with older adults with dementia during COVID-19 and beyond.

The coronavirus disease 19 (COVID-19) pandemic has created significant and new challenges for the conduct of clinical research involving older adults with Alzheimer's disease and related dementias (ADRD). It has also stimulated positive adaptations in methods for engaging older adults with ADRD in research, particularly through the increased availability of virtual platforms. In this paper, we describe how we adapted standard in-person participant recruitment and qualitative data collection methods for virtual use in a study of decision-making experiences in older adults with ADRD. We describe key considerations for the use of technology and virtual platforms and discuss our experience with using recommended strategies to recruit a diverse sample of older adults. We highlight the need for research funding that supports the community-based organizations on which improving equity in ADRD research participation often depends.

Personal health information management among healthy older adults: Varying needs and approaches.

OBJECTIVE: With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. MATERIALS AND METHODS: Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. RESULTS: We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. DISCUSSION: Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. CONCLUSIONS: PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

Older adults' personal health information management: The role and perspective of various healthcare providers.

The management of personal health information (PHI) by older adults (OAs) takes place within a socio-technical context and requires the support of various stakeholders, including healthcare providers. This study investigates provider roles in supporting OA personal health information management (PHIM), barriers they face, and related design implications for health information technology (HIT). We interviewed 27 providers serving OAs in Seattle, WA. Providers support OA PHIM through medication management, interpreting HI, and providing resources. Barriers to OA PHIM described by providers include (1) challenges with communication between OAs, providers, and caregivers, (2) limited time and resources, and (3) limitations of tools such as secure messaging. Considering these barriers, provider roles, and the socio-technical context for HIT implementation, we recommend the design of HIT that facilitates communication across multiple provider types, integrates caregivers and patient-generated data, supports understanding of OA home environments, and offers credible health resources designed for OAs.

Older Adult Health-Related Support Networks: Implications for the Design of Digital Communication Tools.

BACKGROUND AND OBJECTIVES: Digital communication tools facilitate the provision of health-related social support to older adults. However, little is known about what design features make such tools most useful and feasible. The purpose of this study was to describe health-related social support networks of older adults and outline recommendations for the design of tools that facilitate the giving and receiving of support. RESEARCH DESIGN AND METHODS: We collected data through validated instruments and semistructured qualitative interviews with 88 older adults. We calculated descriptive statistics for the quantitative data and analyzed qualitative data using directed content analysis. RESULTS: Health-related support networks described by our sample of generally healthy older adults varied in size from 0 to 10 members. Some networks did not include any family members, and others did not include any friends. Seventy-four percent of network members lived in the same state as the older adult participant, but only 15% of them lived with the participant. Emotional support was the main type of health-related support provided, followed by instrumental, informational, and appraisal support. DISCUSSION AND IMPLICATIONS: Health-related support networks of older adults are varied and complex. Our results suggest that digital communication tools to promote and leverage support from network members should facilitate the involvement of friends and family regardless of their physical location, allow for the transparent allocation of concrete tasks to prevent overburdening any one network member, and facilitate sharing of personal health information with family and friends while ensuring privacy and autonomy.

Recruiting older adult participants through crowdsourcing platforms: Mechanical Turk versus Prolific Academic.

BACKGROUND: Recruiting older adults (OA) into research is challenging. OBJECTIVE: To assess the feasibility of using two crowdsourcing platforms, Amazon's Mechanical Turk (MTurk) and Prolific Academic (ProA), as efficient and low-cost venues for recruiting survey participants aged 65 and older. METHODS: We developed an online survey to investigate and compare the demographics, technology use, and motivations for research participation of OA on MTurk and ProA. Qualitative responses, response time, word count, and recruitment costs were analyzed. RESULTS: We recruited 97 OA survey participants on both MTurk and ProA. Participants were similar in terms ofdemographics, technology usage, and motivations for participation (topic interest and payment). CONCLUSION: Both crowdsourcing platforms are useful for rapid and low-cost recruitment of OA. The OA recruitment process was more efficient with ProA. Crowdsourcing platforms are potential sources of OA research participants; however, the pool is limited to generally healthy, technologically active, and well-educated older adults.

Home Care Nurses' Perspectives Regarding Health Information Management Among Older Adults.

Aging is associated with comorbidities and increased utilization of healthcare services, which results in a large amount of personal health information (PHI) to manage. Older adults often have difficulty managing this increased load of health information. Although many home healthcare nurses (HCNs) provide assistance to older adults after discharge from medical facilities, little is known about HCNs' experiences with older adults regarding the management and transfer of PHI in their homes. The purpose of this qualitative study was to 1) determine how HCNs obtain and provide health information, 2) describe the perspective of HCNs regarding older adult PHI, and 3) identify the potential role of technology in older adult health information transfer. We conducted and analyzed semistructured phone interviews with 17 HCNs from two home healthcare agencies. Five thematic areas emerged from interviews with HCNs: 1) common practices of obtaining health information; 2) barriers to obtaining health information; 3) ideal ways to obtain and provide health information; 4) use of patient portals; and 5) HCNs' use of technology for health information exchange. Most HCNs reported that it would be difficult for older adult patients to update their PHI without assistance, but HCNs lack the time and resources to assist older adults in PHI management activities.

Personal Health Information Management Practices of Older Adults: One Size Does Not Fit All.

Older adults are the largest consumers of health care, have the greatest number of chronic conditions, and generate the greatest amount of health data. Yet, information systems designed to aid health information management do not align with their needs and practices. We describe a process of identifying the personal health information management (PHIM) activities and objectives of older adults (60 years and older) from different residential settings.

Connected Personas: Translating the Complexity of Older Adult Personal Health Information Management for Designers of Health Information Technologies.

Human-centered design (HCD) can be used to communicate research study findings to designers of health information technologies (HIT). We used the HCD approach to develop personas, scenarios, and design guidelines for designers with the aim that it would lead to new HIT designs that support the autonomy and health of older adults. The foundation of the personas, scenarios, and design guidelines was a study that focused on understanding how older adults manage their health information and the role that stakeholders play in that process. In this paper, we describe how we carried out a HCD approach and how it led us to expand the persona process to create a network of connected personas. The connected personas allowed us to show the complexities of personal health information management for older adults and emphasize the importance of relationships with family, friends, and providers.

Monitoring for change: the role of family and friends in helping older adults manage personal health information.

Objective: Although family and friends (FF) often play a significant support role in the health of older adults (OA), we know little about their role in personal health information management (PHIM). To address this gap and inform the design of PHIM tools, we describe the work, needs, and barriers of FF in the context of PHIM for OAs. Methods: We conducted semi-structured telephone interviews with 52 FF identified by OA as being important in their health and PHIM. We analyzed interview transcripts for themes about FF information work, barriers, and support needs. Results: FF play a supportive role in OA health maintenance, medical encounters, decision making, and daily activities. Monitoring, the ongoing process of seeking information related to the OA status, emerged as a key activity comprised of 3 phases: detection, interpretation, and action. Barriers to monitoring included OA choices and constraints, FF constraints, and difficulty with technological tools, resources, health information exchange between providers, social network dynamics, and physical distance. Conclusions: FF frequently monitor for change in OA well-being, seeking up-to-date information to facilitate support of OA PHIM. Health information technology tools designed for FF can support all phases of monitoring by providing: (1) timely and granular levels of access to OA health information as the OA ages; (2) tailored health education for FF that is based on OA clinical data; and (3) networking platforms that integrate delegation, volunteering, and relevant resources, along with tools to facilitate support of OA appointment calendars and medication management. Such tools could reduce the burden of PHIM for OA and their loved ones.

A Closer Look at Health Information Seeking by Older Adults and Involved Family and Friends: Design Considerations for Health Information Technologies.

Older adults are the largest consumers of healthcare. As part of a broader study of personal health information management (PHIM), we interviewed older adults in King County, Washington, and their involved family and friends (FF), regarding health information (HI) sources they seek and utilize. Analysis of interview transcripts revealed four main themes: 1) older adults and FF consider healthcare providers the foundational source of HI; 2) older adults utilize FF for seeking, sharing, and interpreting HI, while FF serve as surrogate seekers and experience-based experts; 3) online searching is common for older adults and FF, but confidence in assessing the quality of online HI is often lacking; 4) a smorgasbord approach is frequently utilized by older adults and FF for gathering and clarifying HI. Design considerations include: facilitating access to quality provider-vetted HI, incorporating older adults and FF in the design process, and creating shared spaces for communication of HI among older adults, FF, and providers.