Amy S. Hwang

Living With Ambiguity: A Metasynthesis of Qualitative Research on Mild Cognitive Impairment

Purpose of the study: Mild Cognitive Impairment (MCI) is a diagnosis proposed to describe an intermediate state between normal cognitive aging and dementia. MCI has been criticised for its conceptual fuzziness, its ambiguous relationship to dementia, and the tension it creates between medical and sociological understandings of “normal aging”. Design and Methods: We examined the published qualitative literature on experiences of being diagnosed and living with MCI using metasynthesis as the methodological framework. Results: Two overarching conceptual themes were developed. The first, MCI and myself-in-time, showed that a diagnosis of MCI could profoundly affect a person’s understanding of their place in the world. This impact appears to be mediated by multiple factors including a person’s social support networks, which daily activities are affected, and subjective interpretations of the meaning of MCI. The second theme, Living with Ambiguity, describes the difficulties people experienced in making sense of their diagnosis. Uncertainty arose, in part, from lack of clarity and consistency in the information received by people with MCI, including whether they are even told MCI is the diagnosis. Implications: We conclude by suggesting an ethical tension is always at play when a MCI diagnosis is made. Specifically, earlier support and services afforded by a diagnosis may come at the expense of a person’s anxiety about the future, with continued uncertainty about how his or her concerns and needs can be addressed.

Co-Designing Ambient Assisted Living (AAL) Environments: Unravelling the Situated Context of Informal Dementia Care

Ambient assisted living (AAL) aims to help older persons “age-in-place” and manage everyday activities using intelligent and pervasive computing technology. AAL research, however, has yet to explore how AAL might support or collaborate with informal care partners (ICPs), such as relatives and friends, who play important roles in the lives and care of persons with dementia (PwDs). In a multiphase codesign process with six (6) ICPs, we envisioned how AAL could be situated to complement their care. We used our codesigned “caregiver interface” artefacts as triggers to facilitate envisioning of AAL support and unpack the situated, idiosyncratic context within which AAL aims to assist. Our findings suggest that AAL should be designed to support ICPs in fashioning “do-it-yourself” solutions that complement tacitly improvised care strategies and enable them to try, observe, and adapt to solutions over time. In this way, an ICP could decide which activities to entrust to AAL support, when (i.e., scheduled or spontaneous) and how a system should provide support (i.e., using personalized prompts based on care experience), and when adaptations to system support are needed (i.e., based alerting patterns and queried reports). Future longitudinal work employing participatory, design-oriented methods with care dyads is encouraged.

Envisioning future cognitive telerehabilitation technologies: a co-design process with clinicians

Abstract Purpose Cognitive telerehabilitation is the concept of delivering cognitive assessment, feedback, or therapeutic intervention at a distance through technology. With the increase of mobile devices, wearable sensors, and novel human–computer interfaces, new possibilities are emerging to expand the cognitive telerehabilitation paradigm. This research aims to: (1) explore design opportunities and considerations when applying emergent pervasive computing technologies to cognitive telerehabilitation and (2) develop a generative co-design process for use with rehabilitation clinicians. Methods We conducted a custom co-design process that used design cards, probes, and design sessions with traumatic brain injury (TBI) clinicians. All field notes and transcripts were analyzed qualitatively. Results Potential opportunities for TBI cognitive telerehabilitation exist in the areas of communication competency, executive functioning, emotional regulation, energy management, assessment, and skill training. Designers of TBI cognitive telerehabilitation technologies should consider how technologies are adapted to a patient’s physical/cognitive/emotional state, their changing rehabilitation trajectory, and their surrounding life context (e.g. social considerations). Clinicians were receptive to our co-design approach. Conclusion Pervasive computing offers new opportunities for life-situated cognitive telerehabilitation. Convivial design methods, such as this co-design process, are a helpful way to explore new design opportunities and an important space for further methodological development. Implications for Rehabilitation Designers of rehabilitation technologies should consider how to extend current design methods in order to facilitate the creative contribution of rehabilitation stakeholders. This co-design approach enables a fuller participation from rehabilitation clinicians at the front-end of design. Pervasive computing has the potential to: extend the duration and intensity of cognitive telerehabilitation training (including the delivery of ‘booster’ sessions or maintenance therapies); provide assessment and treatment in the context of a traumatic brain injury (TBI) patient’s everyday life (thereby enhancing generalization); and permit time-sensitive interventions. Long-term use of pervasive computing for TBI cognitive telerehabilitation should take into account a patient’s changing recovery trajectory, their meaningful goals, and their journey from loss to redefinition.

Expanding design possibilities for life with dementia

This forum is dedicated to personal health in all its many facets: decision making, goal setting, celebration, discovery, reflection, and coordination, among others. We look at innovations in interactive technologies and how they help address current critical healthcare challenges. --- Gillian R. Hayes, Editor

Network-based approaches for evaluating ambient assisted living (AAL) technologies

Ambient assisted living technologies could support people experiencing physical or cognitive challenges, to maintain social identities and complex activities of daily living. Although there has been substantial investment in developing ambient assisted living innovation, less effort has been devoted to understanding how to evaluate the impact of ambient assisted living on physical and mental health. Taking a theory-based evaluation approach, we suggest firstly that ambient assisted living technologies rely on networks of people and organizations to function, and secondly, analysing the changing structure of networks can bridge the gap between socio-technological change and individual-level capabilities. We present conceptual arguments for taking a network perspective in ambient assisted living evaluations, illustrated with examples from our own group’s work on technology use among older people with cognitive impairments. We then discuss the different types of network-based evaluation approaches available, their theoretical assumptions, and the sort of research questions they could address.

The contrasting role of technology as both supportive and hindering in the everyday lives of people with mild cognitive deficits: a focus group study

BackgroundIt is well known that people with mild cognitive deficits face challenges when performing complex everyday activities, and that the use of technology has become increasingly interwoven with everyday activities. However, less is known of how technology might be involved, either as a support or hindrance, in different areas of everyday life and of the environments where challenges appear. The aim of this study was to investigate the areas of concern where persons with cognitive deficits meet challenges in everyday life, in what environments these challenges appear and how technology might be involved as part of the challenge and/or the solution to the challenge.MethodsData were gathered through four focus group interviews with participants that live with cognitive deficits or cohabit with a person with cognitive deficits, plus health professionals and researchers in the field. Data were transcribed, coded and categorized, and finally synthesized to trace out the involvement of technology.ResultsFive areas of concern in everyday life were identified as offering challenges to persons with cognitive deficits: A) Managing personal finances, B) Getting around, C) Meeting family and friends, D) Engaging with culture and media and, E) Doing everyday chores. Findings showed that the involvement of technology in everyday activities was often contrastive. It could be hindering and evoke stress, or it could bring about feelings of control; that is, being a part of the solution. The involvement of technology was especially obvious in challenges linked to Managing personal finances, which is a crucial necessity in many everyday activities. In contrast, technology was least obviously involved in the area Socializing with family and friends.ConclusionsThe findings imply that technology used for orientation and managing finances, often used outside home, would benefit from being further developed in order to be more supportive; i.e. accessible and usable. To make a positive change for many people, the ideas of inclusive design fit well for this purpose and would contribute to an age-friendly society.

Sustaining care for a parent with dementia: an indefinite and intertwined process

ABSTRACT This study aimed to understand how adult children sustain caring for persons with dementia (PwDs) within their family and formal care contexts in Canada. Half-day focus groups were conducted with adult daughters and adult sons in Toronto, Canada. Using constructivist grounded theory, we examined both substantive concepts and group dynamics. Sustaining care was interpreted as an indefinite process with three intertwined themes: reproducing care demands and dependency, enacting and affirming values, and “flying blind” in how and how long to sustain caring (i.e., responding to immediate needs with limited foresight). Family values and relationships, mistrust toward the institutional and home care systems, and obscured care foresight influenced care decisions and challenged participants in balancing their parents’ needs with their own. Positive and negative aspects of care were found to influence one another. The implications of these findings for research and policy are discussed.