Adapting UX Research for People Living with Alzheimer's, Dementia, and MCI: Improving the UX Research Process for Participants

When building products, it is important to understand the target audience. User-centric design is the process of building products or services based on the wants, needs and challenges of users. Online accommodation platforms such as online travel agencies (OTAs) and accommodation price comparison platforms have hoteliers as users. Through hoteliers, hotel properties and prices are displayed on their platforms. These online accommodation platforms are important business partners for hoteliers and bring advantages such as increased exposure, higher occupancy rates and lower marketing costs. Understanding the needs of hoteliers is important to online accommodation platforms to inform their Business-to-Consumer (B2C) and Business-to-Business (B2B) products. These insights can help create tailored user experiences and solutions that cater to the distinct needs of independent hotels. Increasingly, organisations are including UX research in their software design and development process. UX research is the systematic investigation of users and their requirements, to add context and insight into the process of designing the user experience. One framework to understand why people adopt products and services is the Jobs-to-be-done (JTBD) framework. It defines user needs and what they really seek to accomplish as a job in each circumstance. This study presents the application of the JTBD framework for understanding independent hoteliers needs on accommodation comparison platforms in the context of creating visibility and generating bookings. The framework and its benefits are described, along with a variety of different industry cases where the JTBD framework has successfully been applied. The focus of this study lays on the research methodology, process, challenges and impact of applying the JTBD framework in the B2B area in the online travel industry. A foundational research project was conducted from January to May 2023 where the research goal consisted of identifying a series of needs and pain points from hoteliers that represent business opportunities while also providing a benefit for travellers. Recruited hoteliers consisted of convenience and random sampling of customers and non-customers. To answer those questions, JTBD qualitative interviews with independent hoteliers were conducted to generate insights for creating a comprehensive JTBD Map. A JTBD Map is a visual depiction to clarify the job users are trying to get done in a specific context, including respective process steps, desired outcomes and pain points. The JTBD framework helped the product development team, across different job profiles, to have a shared understanding of hoteliers’ needs. The framework was applied on both B2C and B2B product development areas. The framework also helped to identify areas where deeper UX Research was needed. Stakeholders were able to assess the different jobs and conclude which ones to focus on. The results of this study are specifically of value for practitioners and academia in the travel industry and have implications for Product, UX and Research practitioners.

This paper expands the scope of designing for accessibility by proposing three design strategies that allow crosspollinations between accessible, user-centered design, cross-cultural design, and participatory design to break down the boundaries between the concepts of user experience and accessibility while involving all users in the UX research and design process.

The effect of child‐centered play therapy and person‐centered therapy consultation on behavioral and psychological symptoms of dementia in people with dementia of Alzheimer's type

Developing biobanking processes for Alzheimer's disease and related dementia research in Africa: Experience from the Recruitment and Retention for Alzheimer's Disease Diversity in the Alzheimer's Disease Sequencing Project (READD-ADSP).

In the past decades, cutting-edge research techniques have facilitated better understanding of the bi-directional ‘vectors of influence’ that link the genes, brain and social behavior. This, in turn, has led to remarkable progress in biological research principles, paradigms and processes, having rendered critical insights on the pathogenesis of various psychiatric disorders. For instance, neuroimaging has revolutionized the research on understanding the biological underpinnings of several psychiatric disorders [1]. Coupled with the immense expansions on the computational techniques and resources to handle ‘big-data’, the neuroimaging procedures have facilitated non-radioactive, non-invasive research to examine the in vivo brain aberrations in patients with psychiatric manifestations [2]. These techniques attempt to profile the ‘panorama’ of brain dysfunction involving structural, neurohemodynamic, neurochemical as well connectivity aspects. One is hopeful that these significant advances in neuroimaging techniques will pave the way for insights about the disruption of neural networks in neuropsychiatric disorders (pathoconnectomics) [3]. In tandem with vast advances in neuroimaging research, the progress in molecular biology involving genomics, proteomics and several other related fields have been astonishing. Noteworthy among such advances is the feasibility of utilizing ‘stem cell models’ to characterize the complex pathogenetic interactions that underlie the genesis of complex psychiatric disorders [4]. These exciting advances have generated immense hope and novel avenues for identifying biomarkers for psychiatric disorders. A biomarker is defined as ‘a characteristic that is objectively measured and evaluated as an indicator of normal biologic processes, pathologic processes or biological responses to a therapeutic intervention’ (Biomarkers Definition Working Group [5]); a biomarker can involve a gene or a set of genes, proteins/other biomolecules, morphological characteristic. In terms of application, biomarkers can be used for diagnosis or prognosis [6]. Thus, biomarkers are critically needed for diagnosis, predicting treatment response and follow-up outcomes of medical ailments [7]. Although, ‘concerted’ research efforts in the ‘decade of the brain’ and the years that followed have unravelled critical insights on the pathogenesis of psychiatric disorders, clinically translatable biomarkers in psychiatry are yet to be identified. For instance, a recent publication which performed a systematic and qualitative review of clinically meaningful biomarker for psychosis by examining 3,200+ studies could identify just one study that passed the author's threshold of clinical applicability [8]. A ‘snap-shot’ review on the status of biomarkers in certain major psychiatric disorders reiterates this lag. For instance, in Alzheimer's disease, current research studies suggest that about 8 biochemical measurements (amyloid proteins and their A-beta precursors or tau proteins) or brain imaging procedures (advanced structural/functional/neurochemical imaging techniques) are considered as potential biomarkers [9]. However, there are none that might qualify for the ‘rigorous’ definition of biomarker [8]. Recent findings needing further confirmation suggest that reductions in plasma phospholipid levels might be useful in accurate prediction of the development of Alzheimer's dementia within 2 years [9]. The status of biomarkers is almost the same in another important psychiatric disorder of significant public health implication - autism. In autism, while there are promising leads for potential biomarkers that involve parameters of mitochondrial function, oxidative stress, immune system or certain gene clusters, a clinically translatable biomarker is yet to be identified [10]. All these reiterate the fact that the current status of biomarkers in psychiatry has significantly lagged behind in comparison with other medical specialties. In most of the existing studies on biological abnormalities of psychiatric disorders, patients are distinguishable as a group from healthy controls; however, these differential biological correlates have not been transformed into clinically useful biomarkers. The following are some of the critical reasons for this lacuna [7,11]: (a) current classificatory and diagnostic systems in psychiatry are primarily symptom based, (b) methodological limits of the existing studies on biological abnormalities in psychiatry, (c) lack of valid ‘in-vitro’ models for psychiatric disorders and (d) issues related to conceptualizations of pathogenetic paradigms for psychiatric disorders.

BackgroundFamilies living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum—from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings.ObjectiveThis study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR).MethodsA total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist.ResultsTele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C.ConclusionsWe found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR.

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI. HIGHLIGHTS: A central premise of public and participant involvement (PPI) is collaborative relationships between researchers and community members. To build equitable partnerships, researchers must acknowledge and understand the context of research. This includes ageism, the stigma of dementia, and ongoing discrimination for many minoritized communities. Meaningful partnerships include choice, respect, shared decision making, access, inclusion, and representation. Notably, we recommend that researchers begin partnerships early in the research process and share the impact of PPI on research.

This article is the beginning of an analysis of cultural processes involved in scientific social organization and change which focuses on the International Working Group for the Harmonization of Dementia Drug Testing Guidelines (IWG). We provide some background for the IWG and for the study of its processes and focus on the construction of consensus and consensus statements of the constituent working groups of the IWG. We delineate a cultural ethos of cooperation that pushes scientists to agree even when they do not and to conceal disagreements. Our observations suggest that the consensus process may serve to inhibit or block the development of new ideas and solutions to problems by keeping conflicts hidden and different viewpoints masked. The masked ideas, although minority ideas, may contain much of importance for subsequent paradigm shifts in approaches to Alzheimer disease and other dementias. In subsequent reports, we will chronicle other aspects of the work of the IWG, including the nature of cross-cultural differences in the drug research structures and processes, governmental regulatory bodies, and the relationship of the pharmaceutical industry to clinical trials research. The present article adds some understanding of the IWG and its mission and contributes to the literature on the cultural construction and social organization of science.

Applying person-centered research ethics in the design of dementia-specific measures

Social determinants of health, such as racialization and socioeconomic status, influence both the risk of developing dementia and access to quality care. However, many dementia studies lack representation from underserved communities, resulting in gaps in understanding their unique needs and the barriers they face in accessing appropriate care. With growing awareness of and interest in addressing these gaps, sharing effective engagement strategies and inclusive research practices becomes essential.This presentation will explore some of the challenges of engaging people living with dementia from underserved communities and offer evidence‐based strategies to address these challenges. We will focus on approaches that consider individual needs and socio‐cultural contexts while ensuring that voices from diverse communities are included and valued. Drawing on our experiences with participatory research, we will share recommendations on how researchers and healthcare providers can meaningfully collaborate with members of underserved groups to co‐design inclusive research methodologies, recruitment strategies, and interventions. These approaches are crucial for improving the representation of underserved communities in dementia research and ensuring their needs are reflected in care delivery design.As a case study, we will present our experience of co‐designing an inclusive interview guide and recruitment strategy for people living with dementia and their care partners from racially and economically diverse backgrounds to gather their perspectives on electronic consultations (eConsult) as a means of accessing specialist care. This example highlights how a participatory, co‐design approach can bridge the gap between research and underserved communities, fostering inclusivity and shared ownership of research processes and outcomes.This session will offer an opportunity to discuss participatory and co‐design approaches as innovative methods in Alzheimer's disease and related dementias research and to foster international collaborations among researchers and patient partners to advance inclusive research practices and equity in dementia care.

BackgroundBiomarkers play a critical role in understanding disease mechanisms and advancing diagnostic and treatment options for Alzheimer's disease and related dementias (AD/ADRD). However, in many African countries, biomarker research is limited by insufficient knowledge, infrastructure, funding, and trained personnel.ObjectiveThis study explored community perceptions and willingness to donate biospecimens for AD/ADRD research in Kenya.MethodsEight focus group discussions were conducted in the informal settlements of Mathare and Kibera in Nairobi, Kenya, stratified by age and gender (n = 81). Data were transcribed verbatim and thematically analyzed using QSR Nvivo 14.ResultsParticipants generally expressed a positive attitude toward brain health research and donating biospecimens. Willingness to participate was influenced by altruism, perceived benefits, and improved understanding of AD/ADRD. Non-invasive samples such as saliva, blood, and stool were widely accepted due to perceptions of safety and familiarity. However, several barriers were identified, including cultural beliefs (e.g., fear of witchcraft linked to donating hair), religious beliefs, fear of invasive procedures (spinal taps), and low awareness about biospecimen research. To address these barriers, participants recommended community sensitization, inclusive and transparent research processes, clear communication of benefits, involvement of family members in consenting, and assurance of safety measures for managing potential risks.ConclusionsCommunity willingness to donate biospecimens for AD/ADRD research in Kenya is shaped by a complex interplay of cultural, ethical, and practical considerations. Culturally sensitive, community-driven approaches are essential to enhance participation in AD/ADRD biomarker research in Kenya and similar low-resource settings.

This research report details how collaborative research teams used a mixed-methods research and design process to iterate and improve student food insecurity online portals and to better position the university to more directly address both student resiliency goals and unsustainable university community behaviors. Earlier student research teams collected data on potential interventions to increase broadly-identified student sustainability behaviors (behaviors like recycling, using mass transit, and reducing water use and food waste) through two semester-long diary studies. Diary studies revealed student ambivalence about being tasked with documenting personal sustainability behaviors while also trying to improve personal economic and social well-being. In order to foster awareness and improvement of student sustainability, collaborative facultystaff-student design teams reframed the sustainability intervention prompt into a student resiliency enquiry. Based on lessons learned from the student diary studies and institutional longitudinal attitude surveys, the staff-faculty-student teams designed student resiliency research to investigate the more immediate nutritional needs of at-risk students. Faculty and staff researchers asked student researchers to measure student user perceptions, attitudes, and activity to uncover how students navigate food insecurity. Student research teams processed the longitudinal survey data, collected user research data, and ideated solutions to student food insecurity through sketch-boards and interactive mockups. By turning the tools of UX research and design to locate opportunities for improving student experiences, research teams were able to successfully reframe the problem space in a way that would bypass questions of epideictic moral evaluation, and would instead enlist participants in defining the forensic qualities of the problem. Researchers discovered opportunities to solve scarcity problems that can both be described as rooted in sustainability and resiliency. The iterative, mixed-methods research approach invited greater participant understanding and consent by investigating preferred participant conceptual frameworks, and adopting a framework that acknowledged concerns that predominate participants' lived experience.

The User Experience-driven Innovation (UXDI) framework emphasizes that successful product design, irrespective of organizational or personal systems, considers the user, context, and technology.In this paper, we outline a generative UX research process to study user needs for teleoperation robotics systems that can assist employees in specialized tasks under stressful conditions as there has been minimal work in documenting such processes.Grounded in the sociotechnical systems (STS) theory we developed a tasksfirst approach to studying employee needs for professional service robots.We designed worksheets for 1) identifying project tasks and their Key Performance Indicators (KPIs), 2) creating high-level and detailed task experience maps, and 3) developing personas for employees who complete the identified tasks.The experience maps and personas can then be used to generate insights for designing robotic systems that can assist employees with the identified tasks.

While artificial intelligence (AI) is transforming UX design, its application often remains fragmented, focusing on isolated tasks like visualization rather than the cohesive research process. To address this gap, we present UREKA, a novel research assistant prototype designed to support the entire UX research workflow, from ideation and data analysis to planning and insight generation. We conducted a mixed-methods evaluation with 16 UX designers. The prototype achieved a System Usability Scale (SUS) score of 80.5, indicating excellent usability. Qualitative findings show participants praised UREKA’s ability to streamline research tasks and generate nuanced, project-specific personas. However, they also identified challenges, including the risk of generalized AI responses and an initial learning curve. Our findings demonstrate that an integrated AI tool like UREKA can significantly enhance research efficiency and support informed design decisions, highlighting a collaborative model where AI serves as a “cognitive accelerator” while the designer retains critical oversight.