No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Ethical adoption: A new imperative in the development of technology for dementia
Abstract
Introduction:
Technology interventions are showing promise to assist persons with dementia and their carers. However, low adoption rates for these technologies and ethical considerations have impeded the realization of their full potential.
Methods:
Building on recent evidence and an iterative framework development process, we propose the concept of "ethical adoption": the deep integration of ethical principles into the design, development, deployment, and usage of technology.
Results:
Ethical adoption is founded on five pillars, supported by empirical evidence: (1) inclusive participatory design; (2) emotional alignment; (3) adoption modelling; (4) ethical standards assessment; and (5) education and training. To close the gap between adoption research, ethics and practice, we propose a set of 18 practical recommendations based on these ethical adoption pillars.
Discussion:
Through the implementation of these recommendations, researchers and technology developers alike will benefit from evidence-informed guidance to ensure their solution is adopted in a way that maximizes the benefits to people with dementia and their carers while minimizing possible harm.
... The functions of technological tools range widely, including activities of daily living (ADL) assistance, behavioral and health monitoring, cognitive assistance and monitoring, and environmental and emotional support Seelye et al. 2020;Piau et al. 2019;Czaja et al. 2019;Orlov 2019). While ethical implications of the use of technologies for people living with dementia have been slow to come into focus (Ienca et al. 2018;Robillard et al. 2018;Novitzky et al. 2015), issues such as autonomy, informed consent with dementia, dignity, and distributive justice, along with threats to values like privacy and identity, are beginning to receive heightened attention in the literature (Meiland et al. 2017;Robillard et al. 2018;Mulvenna et al. 2017;Sánchez et al. 2017;Berridge 2016;Boise et al. 2013). Researchers have identified adoption barriers and user dissatisfaction that result when ethics and implicated values are not engaged in the development of devices (Robillard et al. 2018). ...
... The functions of technological tools range widely, including activities of daily living (ADL) assistance, behavioral and health monitoring, cognitive assistance and monitoring, and environmental and emotional support Seelye et al. 2020;Piau et al. 2019;Czaja et al. 2019;Orlov 2019). While ethical implications of the use of technologies for people living with dementia have been slow to come into focus (Ienca et al. 2018;Robillard et al. 2018;Novitzky et al. 2015), issues such as autonomy, informed consent with dementia, dignity, and distributive justice, along with threats to values like privacy and identity, are beginning to receive heightened attention in the literature (Meiland et al. 2017;Robillard et al. 2018;Mulvenna et al. 2017;Sánchez et al. 2017;Berridge 2016;Boise et al. 2013). Researchers have identified adoption barriers and user dissatisfaction that result when ethics and implicated values are not engaged in the development of devices (Robillard et al. 2018). ...
... While ethical implications of the use of technologies for people living with dementia have been slow to come into focus (Ienca et al. 2018;Robillard et al. 2018;Novitzky et al. 2015), issues such as autonomy, informed consent with dementia, dignity, and distributive justice, along with threats to values like privacy and identity, are beginning to receive heightened attention in the literature (Meiland et al. 2017;Robillard et al. 2018;Mulvenna et al. 2017;Sánchez et al. 2017;Berridge 2016;Boise et al. 2013). Researchers have identified adoption barriers and user dissatisfaction that result when ethics and implicated values are not engaged in the development of devices (Robillard et al. 2018). The surveilling nature of some of these technologies can also put important values-and family members themselves-in tension with one another (Kenner 2008;Berridge and Wetle 2019). ...
There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia when families are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation.
... An early example includes Hunter Hoffman's SnowWorld, which used an older generation of HMD-VR technology. In SnowWorld, patients who had suffered burns throw snowballs at snowmen and penguins to reduce their pain [38,39]. Such HMD-VR health games aim to combine the advantages of a fun and motivating game with clinically grounded approahces. ...
... Moreover, the quality of game design ultimately impacts stakeholder adoption of these games as health technology [39][40][41]. To this end, stakeholder engagement throughout the research and development process has also seen increasing emphasis [39,42,43]. ...
... Moreover, the quality of game design ultimately impacts stakeholder adoption of these games as health technology [39][40][41]. To this end, stakeholder engagement throughout the research and development process has also seen increasing emphasis [39,42,43]. Overall, HMD-VR health games represents a growing field, and some researchers are now beginning to compare the value of different hardware and software applications in this area [44]. ...
Background
High quality head-mounted display based virtual reality (HMD-VR) has become widely available, spurring greater development of HMD-VR health games. As a behavior change approach, these applications use HMD-VR and game-based formats to support long-term engagement with therapeutic interventions. While the bulk of research to date has primarily focused on the therapeutic efficacy of particular HMD-VR health games, how developers and researchers incorporate best-practices in game design to achieve engaging experiences remains underexplored. This paper presents the findings of a narrative review exploring the trends and future directions of game design for HMD-VR health games.
Methods
We searched the literature on the intersection between HMD-VR, games, and health in databases including MEDLINE, Embase, CINAHL, PsycINFO, and Compendex. We identified articles describing HMD-VR games designed specifically as health applications from 2015 onwards in English. HMD-VR health games were charted and tabulated according to technology, health context, outcomes, and user engagement in game design.
Findings
We identified 29 HMD-VR health games from 2015 to 2020, with the majority addressing health contexts related to physical exercise, motor rehabilitation, and pain. These games typically involved obstacle-based challenges and extrinsic reward systems to engage clients in interventions related to physical functioning and pain. Less common were games emphasizing narrative experiences and non-physical exercise interventions. However, discourse regarding game design was diverse and often lacked sufficient detail. Game experience was evaluated using primarily ad-hoc questionnaires. User engagement in the development of HMD-VR health games primarily manifested as user studies.
Conclusion
HMD-VR health games are promising tools for engaging clients in highly immersive experiences designed to address diverse health contexts. However, more in-depth and structured attention to how HMD-VR health games are designed as game experiences is needed. Future development of HMD-VR health games may also benefit from greater involvement of end-users in participatory approaches.
... Whether the users should acquire these competencies via formal education or informal learning was often not explicitly mentioned. However, hands-on recommendations that were derived from prior literature reviews [66][67][68][69][70] or from existing standards of care [71] on how to make use of technology safely were presented and could serve as guidance for educational measures of any kind. ...
... Not only would it contribute to education on the safe use of technology, but it could also pave the way towards adoption and public as well as professional acceptance of innovations. It was argued that ethical standards assessment together with pertinent patient education only laid the foundation for realistic and sustainable system adoption of innovative applications for dementia patients [68]. Professional associations, such as the Canadian Association of Radiologists [70] pled to offer public education programs to engage citizens in the medical use of AI and ultimately prepare the ground for an open and positive attitude in data sharing. ...
... Alshakhs et al. [61] Bittner et al. [66] Bopp et al. [63] Brisson et al. [33] Chandawarkar et al. [69] Demiray et al. [62] Estrada-Hernandez and Bahr [60] Geis et al. [67] Ho and Quick [57] Jaremko et al. [70] Le Barge and Broom [65] Modell et al. [59] Reamer [71] Robillard et al. [68] Sussman and DeJong [72] Zimba et al. [ ...
Objective: The more people there are who use clinical information systems (CIS) beyond their traditional intramural confines, the more promising the benefits are, and the more daunting the risks will be. This review thus explores the areas of ethical debates prompted by CIS conceptualized as smart systems reaching out to patients and citizens. Furthermore, it investigates the ethical competencies and education needed to use these systems appropriately.
Methods: A literature review covering ethics topics in combination with clinical and health information systems, clinical decision support, health information exchange, and various mobile devices and media was performed searching the MEDLINE database for articles from 2016 to 2019 with a focus on 2018 and 2019. A second search combined these keywords with education.
Results: By far, most of the discourses were dominated by privacy, confidentiality, and informed consent issues. Intertwined with confidentiality and clear boundaries, the provider-patient relationship has gained much attention. The opacity of algorithms and the lack of explicability of the results pose a further challenge. The necessity of sociotechnical ethics education was underpinned in many studies including advocating education for providers and patients alike. However, only a few publications expanded on ethical competencies. In the publications found, empirical research designs were employed to capture the stakeholders’ attitudes, but not to evaluate specific implementations.
Conclusion: Despite the broad discourses, ethical values have not yet found their firm place in empirically rigorous health technology evaluation studies. Similarly, sociotechnical ethics competencies obviously need detailed specifications. These two gaps set the stage for further research at the junction of clinical information systems and ethics.
... On the other hand, developers are competing to patent their inventions, introduce them to the market, and possibly have their products become reimbursable through public health programs and private health plans [14,15]. Developers experience intense competitive pressures, especially since many of their products never make it to the market [16], which can make it challenging for them to take the time to support ethical inquiry and the kind of multistakeholder engagements needed to design workable guidelines [10,17]. ...
... How often do people need to be reminded? To start answering these questions, we can draw important lessons from research practice [16]. In research studies, institutional review boards guide researchers on appropriate methods to gain informed assent from persons with cognitive impairment and their surrogates. ...
... Furthermore, we suggest that innovative technologies targeting older adults with cognitive impairment should not simulate feelings of affection, in order to avoid misinterpretations due to their impairment. Even though emotional alignment is a powerful tool to enhance the adoption, and the use of innovative technologies, the limited capacity of people with cognitive impairment to discriminate between genuine and simulated affection should be acknowledged in the design of those technologies [16]. And the potential to emotionally manipulate older adults into ongoing expensive services is a serious risk. ...
Due to the high costs of providing long-term care to older adults with cognitive impairment, artificial companions are increasingly considered as a cost-efficient way to provide support. Artificial companions can comfort, entertain, and inform, and even induce a sense of being in a close relationship. Sensors and algorithms are increasingly leading to applications that exude a life-like feel. We focus on a case study of an artificial companion for people with cognitive impairment. This companion is an avatar on an electronic tablet that is displayed as a dog or a cat. Whereas artificial intelligence guides most artificial companions, this application also relies on technicians "behind" the on-screen avatar, who via surveillance, interact with users. This case is notable because it particularly illustrates the tension between the endless opportunities offered by technology and the ethical issues stemming from limited regulations. Reviewing the case through the lens of biomedical ethics, concerns of deception, monitoring and tracking, as well as informed consent and social isolation are raised by the introduction of this technology to users with cognitive impairment. We provide a detailed description of the case, review the main ethical issues and present two theoretical frameworks, the "human-driven technology" platform and the emancipatory gerontology framework, to inform the design of future applications.
... The burden of decision making about care without knowing that person's preferences is also a source of stress for care partners (Horowitz et al., 2004;Whitlatch et al., 2009). For these reasons, researchers have identified the need to educate families and people living with dementia about the technologies' risks and benefits in a way that is accessible, clear, and meaningful to them (Berridge et al., 2021;Lukkien et al., 2021;Meiland et al., 2017;Robillard et al., 2018;Thorstensen, 2018). ...
... There are many reasons families require support to understand various technology options and make person-centered use decisions that meaningfully involve the person living with dementia. Ethical use requires engagement to the extent possible (Mahoney et al., 2007;Robillard et al., 2018;Berridge et al., 2021) and having to make decisions without awareness of a person living with dementia's preferences is a source of stress for care partners (Reamy et al., 2011;Menne et al., 2008). Further, the members of care dyads are likely to have divergent preferences due to the surveilling nature of some technologies used in dementia care. ...
Background and Objective
Care partners of people living with dementia require support to knowledgeably navigate decision making about how and when to use monitoring technologies for care purposes. We conducted a pilot study of a novel self-administered intervention, “Let’s Talk Tech,” for people living with mild dementia and their care partners. This paper presents preliminary efficacy findings of this intervention designed to educate and facilitate dyadic communication about a range of technologies used in dementia care and to document the preferences of the person living with dementia. It is the first-of-its-kind decision-making and planning tool with a specific focus on technology use.
Research Design and Methods
We used a 1-group pretest–post-test design and paired t tests to assess change over 2 time periods in measures of technology comprehension, care partner knowledge of the participant living with mild Alzheimer’s disease’s (AD) preferences, care partner preparedness to make decisions about technology use, and mutual understanding. Thematic analysis was conducted on postintervention interview transcripts to elucidate mechanisms and experiences with Let’s Talk Tech.
Results
Twenty-nine mild AD dementia care dyads who live together completed the study. There was statistically significant improvement with medium and large effect sizes on outcome measures of care partners’ understanding of each technology, care partners’ perceptions of the person living with dementia’s understanding of each technology, knowledge of the person living with dementia’s preferences, decision-making preparedness, and care partners’ feelings of mutual understanding. Participants reported that it helped them have important and meaningful conversations about using technology.
Discussion and Implications
Let’s Talk Tech demonstrated promising preliminary efficacy on targeted measures that can lead to informed, shared decision making about technologies used in dementia care. Future studies should assess efficacy with larger samples and more diverse sample populations in terms of race, ethnicity, and dementia type.
... The synergies of the team helped to translate appropriate game ideas that came from the aging and dementia experts into emotionally and socially stimulating experiences designed with input of the user experience (UX), gaming and technology experts. We gave special consideration to design aspects that would trigger the PwD emotionally and socially, keeping in mind the importance of emotional alignment (Ienca et al., 2017;Robillard et al., 2018). We used the inclusive participatory design method which ensures benefits to end-users, promotes engagement and ensures usability (Robillard et al., 2018). ...
... We gave special consideration to design aspects that would trigger the PwD emotionally and socially, keeping in mind the importance of emotional alignment (Ienca et al., 2017;Robillard et al., 2018). We used the inclusive participatory design method which ensures benefits to end-users, promotes engagement and ensures usability (Robillard et al., 2018). We also considered more personalized aspects of the game screens (i.e., culturally appropriate, clear, welcoming pictures and design choices to enhance PwDs engagement with the SG4D). ...
... Examples of methodologies to embed users in development and evaluation processes and align interventions with their needs, priorities, and expectations are user-centered design, empathetic design, cocreation, participatory design, and participatory action research. 22 In striving for user engagement, intervention developers/researchers must have flexibility to be responsive to users' needs and wishes pertaining to engagement (eg, users may prefer to provide feedback on interventions in an advisory role rather than as a study participant). Transdisciplinary and trans-sectoral collaboration Development and evaluation of interventions requires collaborations across disciplinary and stakeholder groups and sectors to enhance validity, usefulness, usability, translation, and sustainability of interventions in practice and markets. ...
... Recommendations, guidelines, and frameworks have been put forward to guide various stages, application areas, or technology features in development, evaluation, and implementation processes. 22,[24][25][26] Greater alignment to ethical requirements is needed for enhanced feasibility of implementation and adoption. ...
Current approaches for generating “high quality” research evidence for technology-based interventions in the field of disability and rehabilitation are inappropriate. Prevailing approaches often focus on randomized controlled trials as standard and apply clinical trials practices designed for pharmaceuticals; such approaches are unsuitable for technology-based interventions, and counterproductive to the goals of supporting people with disabilities and creating benefit for society. This communication is designed to: (1) Advocate for the use of alternative approaches to generating evidence in the development and evaluation of technology-based interventions; (2) Propose an alternative framework and guiding principles; and (3) Stimulate action by multiple disciplines and sectors to discuss, adopt, and promote alternative approaches. Our Framework for Accelerated and Systematic Technology-based intervention development and Evaluation Research (FASTER) is informed by established innovation design processes, complex intervention development, evaluation, and implementation concepts, and our collective experiences in technology-based interventions research and clinical rehabilitation practice. FASTER is intended to be meaningful, timely, and practical for researchers, technology developers, clinicians, and others who develop these interventions and seek evidence. We incorporate research methods and designs that better align with creating technology-based interventions and evidence for integration into practice. We propose future activities to improve the generation of research evidence, enable the selection of research methods and designs, and standards for evidence evaluation to support rigour and applicability for technology-based interventions. With this communication we aim to improve and advance technology-based intervention integration from conception to use, thus responsibly accelerating innovation to have greater positive benefit for people and society.
... The synergies of the team helped to translate appropriate game ideas that came from the aging and dementia experts into emotionally and socially stimulating experiences designed with input of the user experience (UX), gaming and technology experts. We gave special consideration to design aspects that would trigger the PwD emotionally and socially, keeping in mind the importance of emotional alignment (Ienca et al., 2017;Robillard et al., 2018). We used the inclusive participatory design method which ensures benefits to end-users, promotes engagement and ensures usability (Robillard et al., 2018). ...
... We gave special consideration to design aspects that would trigger the PwD emotionally and socially, keeping in mind the importance of emotional alignment (Ienca et al., 2017;Robillard et al., 2018). We used the inclusive participatory design method which ensures benefits to end-users, promotes engagement and ensures usability (Robillard et al., 2018). We also considered more personalized aspects of the game screens (i.e., culturally appropriate, clear, welcoming pictures and design choices to enhance PwDs engagement with the SG4D). ...
Context: Dementia is one of the top five chronic diseases, which has an overwhelming impact on patients' life quality, family, and caregivers. Currently, research relating to people with dementia (PwD) focuses on the deterioration of cognitive abilities. A more innovative approach, and the one taken by this paper, is focusing on methods to maintain and improve functionality, communication and quality of life of PwD by building on remaining capacities in the yet unexplored domain of emotional and social intelligence (ESI). The use of serious games for PwD (SG4D) aimed at building social and emotional capacity is a budding field of research.
Objectives: Proof of concept that the, low cost, easy to deploy SG4D, called “My Brain Works” (MBW), co-designed with PwD, enhances ESI, based on the Bar-On ESI model.
Methods: 27 PwD, clients at MELABEV dementia day center, participated in a mixed methods 12 weeks pilot, proof of concept study using a tablet SG4D co-designed with PwD. Quantitative performance data was collected automatically by the tablet during game sessions. In this paper we focus on the analysis of the qualitative and quantitative data related to ESI, observed by 10 different researchers, during each game session.
Results: Quantitative data revealed: both the PwD with high and low MoCA scores had similar average ESI scores. Qualitative analysis revealed that the PwD demonstrated 9 sub-components of the Bar-On ESI Model.
Conclusion: While there is no drug to stop cognitive decline associated with dementia, interventions related to ESI, on the other hand, may improve functioning and quality of life. Despite declines in cognitive abilities, our study shows that a tablet based SG4D can stimulate their ESI and evoke responses in self-awareness, empathy, social and communication capacities. Using SG4D to exercise and maintain social skills is an area that may be promising in the future and may help counter the negative effects of social isolation and loneliness. Such games, while not focusing on cognitive improvement, may also impact on cognitive functioning and help bridge the gap between caregiver and PwD. More research is needed with larger sample sizes.
... Although older adults are increasingly adept at using technology, age-related perceptual, language, and cognitive barriers must be considered. 8 In addition, it is important to consider how sociocultural and economic factors influence access to remote care and the interpretation of remote cognitive assessments. 8 Clinician and patient comfort and proficiency with technology, awareness of telehealth limitations, and judgement of when to shift to an in-person encounter are necessary to fulfill competency of care in telehealth. ...
... 8 In addition, it is important to consider how sociocultural and economic factors influence access to remote care and the interpretation of remote cognitive assessments. 8 Clinician and patient comfort and proficiency with technology, awareness of telehealth limitations, and judgement of when to shift to an in-person encounter are necessary to fulfill competency of care in telehealth. 9 Telemedicine should humanize both the provider and patient. ...
Introduction:
Despite the urgent need for remote neurobehavioral assessment of individuals with cognitive impairment, guidance is lacking. Our goal is to provide a multi-dimensional framework for remotely assessing cognitive, functional, behavioral, and physical aspects of people with cognitive impairment, along with ethical and technical considerations.
Methods:
Literature review on remote cognitive assessment and multidisciplinary expert opinion from behavioral neurologists, neuropsychiatrists, neuropsychologists, and geriatricians was integrated under the auspices of the Alzheimer Society of Canada Task Force on Dementia Care Best Practices for COVID-19. Telephone and video approaches to assessments were considered.
Results:
Remote assessment is shown to be acceptable to patients and caregivers. Informed consent, informant history, and attention to privacy and autonomy are paramount. A range of screening and domain-specific instruments are available for telephone or video assessment of cognition, function, and behavior. Some neuropsychological tests administered by videoconferencing show good agreement with in-person assessment but still lack validation and norms. Aspects of the remote dementia-focused neurological examination can be performed reliably.
Discussion:
Despite challenges, current literature and practice support implementation of telemedicine assessments for patients with cognitive impairment. Convergence of data across the clinical interview, reliable and brief remote cognitive tests, and remote neurological exam increase confidence in clinical interpretation and diagnosis.
... Modelling of technology adoption, using statistical and machine learning approaches, is seen as a useful process in gaining an understanding of the factors influencing technology adoption ( Chaurasia et al., 2016a;Robillard, Cleland, Hoey, & Nugent, 2018). The aim of adoption modelling is to predict, from a set of features extracted about the individual and their environment, whether a technology will or will not be adopted by a user in the future. ...
... It is, however, becoming increasingly evident that the likelihood of adoption is much more complex and multifaceted in nature than as described by this simple two-factor model. With increased diversity in the available technology, context, and users' background, it may be relevant to understand other factors that may affect adoption ( Robillard et al., 2018). ...
The number of people with dementia (PwD) is increasing dramatically. PwD exhibit impairments of reasoning, memory, and thought that require some form of self‐management intervention to support the completion of everyday activities while maintaining a level of independence. To address this need, efforts have been directed to the development of assistive technology solutions, which may provide an opportunity to alleviate the burden faced by the PwD and their carers. Nevertheless, uptake of such solutions has been limited. It is therefore necessary to use classifiers to discriminate between adopters and nonadopters of these technologies in order to avoid cost overruns and potential negative effects on quality of life. As multiple classification algorithms have been developed, choosing the most suitable classifier has become a critical step in technology adoption. To select the most appropriate classifier, a set of criteria from various domains need to be taken into account by decision makers. In addition, it is crucial to define the most appropriate multicriteria decision‐making approach for the modelling of technology adoption. Considering the above‐mentioned aspects, this paper presents the integration of a five‐phase methodology based on the Fuzzy Analytic Hierarchy Process and the Technique for Order of Preference by Similarity to Ideal Solution to determine the most suitable classifier for supporting assistive technology adoption studies. Fuzzy Analytic Hierarchy Process is used to determine the relative weights of criteria and subcriteria under uncertainty and Technique for Order of Preference by Similarity to Ideal Solution is applied to rank the classifier alternatives. A case study considering a mobile‐based self‐management and reminding solution for PwD is described to validate the proposed approach. The results revealed that the best classifier was k‐nearest‐neighbour with a closeness coefficient of 0.804, and the most important criterion when selecting classifiers is scalability. The paper also discusses the strengths and weaknesses of each algorithm that should be addressed in future research.
... Helping families navigate the complex technological landscape is a timely goal. Researchers often highlight the core ethical problem of achieving informed consent with an individual living with dementia [14][15][16][17][18]. They have demonstrated the need for tools to support education, awareness, and decision-making about technologies used to support care [16,[19][20][21], including forward-looking consent processes before dementia undermines informed preference formation or expression [22]. ...
Background
Monitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes.
Objective
We designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners.
Methods
We surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention.
Results
The study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others.
Conclusions
This study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.
... 29,30 Affect control theory A focus of the present work is to improve the emotional alignment between older adults and robotic devices, which has been proposed as a major adoption barrier. 11,12,[31][32][33] Emotional alignment is a state where all partners in an interaction have congruent emotional interpretations of the situation. Such congruence is the foundation of social and emotional connectedness. ...
Introduction:
Socially assistive robots are devices designed to aid users through social interaction and companionship. Social robotics promise to support cognitive health and aging in place for older adults with and without dementia, as well as their care partners. However, while new and more advanced social robots are entering the commercial market, there are still major barriers to their adoption, including a lack of emotional alignment between users and their robots. Affect Control Theory (ACT) is a framework that allows for the computational modeling of emotional alignment between two partners.
Methods:
We conducted a Canadian online survey capturing attitudes, emotions, and perspectives surrounding pet-like robots among older adults (n = 171), care partners (n = 28), and persons living with dementia (n = 7).
Results:
We demonstrate the potential of ACT to model the emotional relationship between older adult users and three exemplar robots. We also capture a rich description of participants' robot attitudes through the lens of the Technology Acceptance Model, as well as the most important ethical concerns around social robot use.
Conclusions:
Findings from this work will support the development of emotionally aligned, user-centered robots for older adults, care partners, and people living with dementia.
... As part of this, researchers have called for the need for privacy options throughout the body of work on remote monitoring technologies for older adults. Robillard has developed stepwise guidelines based on 5 pillars for ethical adoption specifically for dementia care technologies, which begin with participatory design to align needs and outcomes [122]. However, the levers to apply each additional ideal condition for ethical use are often missing. ...
Studies find that older adults want control over how technologies are used in their care, but how it can be operationalized through design remains to be clarified. We present findings from a large survey (n=825) of a well-characterized U.S. online cohort that provides actionable evidence of the importance of designing for control over monitoring technologies. This uniquely large, age-diverse sample allows us to compare needs across age and other characteristics with insights about future users and current older adults (n=496 >64), including those concerned about their own memory loss (n=201). All five control options, which are not currently enabled, were very or extremely important to most people across age. Findings indicate that comfort with a range of care technologies is contingent on having privacy- and other control-enabling options. We discuss opportunities for design to meet these user needs that demand course correction through attentive, creative work.
... In light of the findings from the survey, a review of this literature as it applies to existing and emerging forms technology can help ensure that these solutions reach the highest standards for ease of use for people living with dementia. We recommend that researchers continuously review existing products for suitability for the dementia community using established frameworks [35][36][37][38] and provide guidance for the selection for the given applications and platforms. User-friendly guides on using technology and different applications could be developed to provide guidance on how to select suitable platforms and forms of technology for end-users (see example in Supplementary Figure 1). ...
Background:
In the midst of the current global health crisis, it is critical to capture the lived experiences of older adults and their care partners to inform priorities for health care services. The COVID-19 pandemic that surfaced in 2019 impacted the physical and emotional health of older adults living with dementia and their care partners. The goal of this project was to explore the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services provided by the Alzheimer Society of British Columbia in British Columbia, Canada.
Method:
People living with dementia and care partners were recruited from the communication channels of the Alzheimer Society of B.C. Participants completed an online survey that was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada.
Result:
A total of 417 completed surveys were analysed (395 care partners, 22 people living with dementia). Overall, respondents indicated that they were able to access information that was helpful for maintaining their own health and managing a period of social distancing (74% care partners, 86% people living with dementia). Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall (58%, 62%) and that they felt more isolated than they did before the pandemic (74%, 81%). The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week (79%, 75%). Many indicated an interest in learning more about using technology to connect with others (32%, 50%).
Conclusion:
Evaluating the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.
... For robots to be accepted and used, it is essential that HW's are included in the design process of the social robots (Góngora Alonso et al., 2019a), (Moharana, Panduro, Lee, & Riek, 2019), (Robillard, Cleland, Hoey, & Nugent, 2018). Compared to elderly people investigated in different studies, HW's are generally less positive about using social robots in their context, however, after exposing HW's to a social robot, positive attitude towards a social robot seems to be higher (Savela et al., 2018). ...
Social Robotics is becoming more relevant for the healthcare sector as an increasing amount of research and development is invested by researchers and practice. One research area where additional research would help the acceptation and adoption of social robots is intramural care where people with dementia live. The current body of knowledge on this topic can be described as nascent. In this study, we add to the body of knowledge regarding the design and enactment of social robots like the one used in this study, the Tessa robot, with the goal to improve acceptation and adoption of social robots in dementia care. To do so, we conducted a case study at a healthcare organization, featuring semi-structured interviews, observations and talking mats. During this case study, an experiment was carried out in which a Tessa robot was used in intramural care with three clients suffering from dementia. The most important finding of this study is that for the robot to be accepted and effective it must be implemented properly in the existing healthcare processes, otherwise it might serve as a companion, but will not relieve the workload of healthcare workers.
... WT upscaling depends on centralized organizational efforts (2,21,77,82,88) WT upscaling unfolds as a decentralized process in a network of autonomous agents (3,12,18,24,33,45,57,63,66,68,73,91,92) ...
Welfare technologies (WT) such as telecare, service robots, and other digital innovations for public sector service delivery are expected to improve and even radically transform health-and eldercare. However, despite political awareness and financial investments, many studies report promising inventions that fail to become implemented on a larger scale. Current research draws a fragmented and heterogeneous picture of this problem, with divergent implications for practice. This article reviews and discusses the extant literature to identify eight competing concerns central to how WT can become implemented on a large scale. By highlighting and contrasting practical and theoretical positions in this emerging and interdisciplinary research topic , the review contributes to understanding the complexities that managers and policy makers must address to diffuse and sustain WT innovations from small to large scale.
... Since commercially available video conferencing programs like Skype or Facetime were perceived as easy-to-use by caregivers, developing video telehealth with similar design and functional features may promote uptake. On the other hand, prior use of technology should not be a prerequisite to video telehealth, as this will limit equitable distribution to groups facing access challenges (Robillard, Cleland, Hoey, & Nugent, 2018) as outlined above. Initial inperson training and step-by-step, simplified instructions may increase comfort with video telehealth, as might a test session ahead of time to test out the functionality and trouble-shoot potential problems. ...
Objectives: Quality dementia care, which recognizes caregivers as vital care partners, is a scarce resource. Innovative solutions like video telehealth may increase the reach of extant clinicians; however, little is known about perceived barriers and facilitators to in-home video telehealth for dementia management from the perspectives of caregivers.
Methods: Twenty-four caregivers of community-dwelling Veterans with dementia participated in semi-structured interviews. Questions gathered perceived facilitators and barriers to in-home video telehealth for dementia management through experience with related technology. Transcripts were analyzed using directed content analysis which was guided by factors previously identified as influencing older adults’ adoption of technology.
Results: Caregiver experience with related technology was mostly facilitative to video telehealth, which was thought best suited for follow-up care. Increased access and decreased patient-caregiver stress were potential benefits. Barriers included perceived limitations of video and the belief that persons with dementia would have limited ability to manage technological aspects and to engage in video telehealth on their own.
Conclusions: This study improves our understanding of the factors that caregivers perceive as barriers and facilitators to in-home video telehealth for dementia management.
Clinical Implications: Strategies to optimize video telehealth include capitalizing on caregivers’ social network and providing targeted training.
... It is advisable that the various stakeholderspatients, caregivers and healthcare professionalsare involved in the design and application of new technologies from the beginning. What's more, the principle of 'ethical adoption'that is, the deep integration of ethical principles into the design, development, deployment and usage of technologywill be crucial [41]. ...
Dementia is increasingly being recognised as a public health priority and poses one of the largest challenges we face as a society. At the same time, there is a growing awareness that the quest for a cure for Alzheimer's disease and other causes of dementia needs to be complemented by efforts to improve the lives of people with dementia. To gain a better understanding of dementia and of how to organize dementia care, there is a need to bring together insights from many different disciplines. Filling this knowledge gap, this book provides an integrated view on dementia resulting from extensive discussions between world experts from different fields, including medicine, social psychology, nursing, economics and literary studies. Working towards a development of integrative policies focused on social inclusion and quality of life, Dementia and Society reminds the reader that a better future for persons with dementia is a collective responsibility.
... Unlike in the past, it is now considered vital to ask people with dementia about their experience and needs to understand what requirements should be addressed [14]. The most important thing is to develop suitable technologies to ensure success [15], but without ignoring the importance of all target groups' participation. Involving people with dementia in the different phases of technology development could be a reliable strategy to achieve these goals [14,16]. ...
In recent years, technology has been implemented in the field of interventions for older adults. GRADIOR 4.5 is a cognitive software within the wide variety of available multimedia programs that support healthcare professionals in cognitive assessment and neuropsychological rehabilitation. The study aimed to evaluate the new version of GRADIOR (v4.5) based on the experience of people with mild cognitive impairment (MCI), people with dementia (PWD), and healthcare professionals. A qualitative study using the focus group methodology was carried out involving 13 people with MCI, 13 PWD, and 11 healthcare professionals. An analysis of the content and the level of feedback was performed. The study showed that GRADIOR 4.5 might be sufficiently adapted to PWD and people with MCI. Participants were motivated to use GRADIOR 4.5, showed high acceptability of the software, and a positive attitude towards technology. However, healthcare professionals suggested significant improvements to the software. GRADIOR 4.5 appeared to be a promising intervention that, because of its positive experience and acceptability, could be systematically implemented to complement cognitive rehabilitation interventions for older adults with MCI and dementia. Finally, it is advisable to consider the suggestions gathered in this study for future developments.
... In light of the findings from the survey, a review of this literature as it applies to existing and emerging forms technology can help ensure that these solutions reach the highest standards for ease of use for people living with dementia. We recommend that researchers continuously review existing products for suitability for the dementia community using established frameworks [35][36][37][38] and provide guidance for the selection for the given applications and platforms. User-friendly guides on using technology and different applications could be developed to provide guidance on how to select suitable platforms and forms of technology for end-users (see example in Supplementary Figure 1). ...
Background:
The COVID-19 pandemic is impacting the physical and emotional health of older adults living with dementia and their care partners.
Objective:
Using a patient-centered approach, we explored the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services in British Columbia, Canada.
Methods:
A survey instrument was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada.
Results:
A total of 417 surveys were analyzed. Overall, respondents were able to access information that was helpful for maintaining their own health and a period of social distancing. Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic. The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week.
Conclusion:
Looking at the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.
... Often, patients with severe cognitive impairments do not understand what the technology does and what they are consenting to. Informed consent has been the most cited ethical concern when it comes to technology development and people with cognitive decline [11,61,62]. Depending on the patient's diagnosis, family members can become surrogate decision makers [63]. ...
Technology affects almost all aspects of modern eldercare. Ensuring ethical decision-making is essential as eldercare becomes more digital; each decision affects a patient’s life, self-esteem, health and wellness. We conducted a survey and interviews with eldercare professionals to better understand the behavioural ethics and decision making involved in the digital transition of eldercare. Our qualitative analysis showed three recurrent roles among eldercare professionals in regard to digital service transformation; makers, implementers and maintainers. All three encountered challenging and stressful ethical dilemmas due to uncertainty and a lack of control. The matter of power relations, the attempts to standardize digital solutions and the conflict between cost efficiency and if digital care solutions add value for patients, all caused moral dilemmas for eldercare professionals. The findings suggest a need for organizational infrastructure that promotes ethical conduct and behaviour, ethics training and access to related resources.
Implications for rehabilitation
The transition to digital care service is not neutral, but value-laden. Digital transformation affects ethical behaviour and decision-making.
The decision as to which digital services should be developed and deployed must include eldercare professionals and not lay solely in the hands of managers, technologists and economists.
We must move away from attempting to fit standardized solutions to a heterogenous group of older patients; accommodating the pluralism of patients’ needs and wants protects their dignity, autonomy and independence.
As digital care practices evolve, so too must organizational structures that promote ethical conduct.
... 21 Our findings highlight the importance of considering the heterogeneous needs and preferences of both older adults and their caregivers in selecting use cases for video telehealth and optimizing its benefits. [46][47][48] Rates of technology use by older adults have quadrupled in the past 5 years, 16,17 and about a third of older adults now own tablets. 16,17 Some technology barriers can be overcome by providing access to equipment. ...
Objective:
This pilot study assessed feasibility of video-enhanced care management for complex older veterans with suspected mild cognitive impairment (CI) and their care partners, compared with telephone delivery.
Design:
Pilot randomized controlled trial.
Setting:
Durham Veterans Affairs Health Care System.
Participants:
Participants were enrolled as dyads, consisting of veterans aged 65 years or older with complex medical conditions (Care Assessment Need score ≥90) and suspected mild CI (education-adjusted Modified Telephone Interview for Cognitive Status score 20-31) and their care partners.
Intervention:
The 12-week care management intervention consisted of monthly calls from a study nurse covering medication management, cardiovascular disease risk reduction, physical activity, and sleep behaviors, delivered via video compared with telephone.
Measurements:
Dyads completed baseline and follow-up assessments to assess feasibility, acceptability, and usability.
Results:
Forty veterans (mean (standard deviation (SD)) age = 72.4 (6.1) years; 100% male; 37.5% Black) and their care partners (mean (SD) age = 64.7 (10.8) years) were enrolled and randomized to telephone or video-enhanced care management. About a third of veteran participants indicated familiarity with relevant technology (regular tablet use and/or experience with videoconferencing); 53.6% of internet users were comfortable or very comfortable using the internet. Overall, 43 (71.7%) care management calls were completed in the video arm and 52 (86.7%) were completed in the telephone arm. Usability of the video telehealth platform was rated higher for participants already familiar with technology used to deliver the intervention (mean (SD) System Usability Scale scores: 65.0 (17.0) vs 55.6 (19.6)). Veterans, care partners, and study nurses reported greater engagement, communication, and interaction in the video arm.
Conclusion:
Video-delivered care management calls were feasible and preferred over telephone for some complex older adults with mild CI and their care partners. Future research should focus on understanding how to assess and incorporate patient and family preferences related to uptake and maintenance of video telehealth interventions.
... Close and collaborative engagement with end-users can be instrumental in addressing the ethical challenges of emerging technologies. Key insights that can be gathered through engagement include, for example, the determination of how closely the device or application intersects with end-user values, whether stated or implicit -a factor that has been shown to be important for adoption [9]. Consultation with end-users should also inform the dynamic monitoring of the balance between benefits and risks of a given telepresence application over the course of aging and age-associated conditions such as the various dementias. ...
Socially Assistive Robots are promising in their potential to promote and support mental health in children. There is a growing number of studies investigating the feasibility and effectiveness of robot interventions in supporting children’s mental wellbeing. Although preliminary evidence suggests that Socially Assistive Robots may have the potential to help address concerns such as stress and anxiety in children, there is a need for a greater focus in examining the impact of robotic interventions in this population. In order to better understand the current state of the evidence in this field and identify critical gaps, we carried out a scoping review of the available literature examining how social robots are investigated as means to support mental health in children. We identified existing types of robot intervention and measures that are being used to investigate specific mental health outcomes. Overall, our findings suggest that robot interventions for children may positively impact mental health outcomes such as relief of distress and increase positive affect. Results also show that the strength of evidence needs to be improved to determine what types of robotic interventions could be most effective and readily implemented in pediatric mental health care. Based on our findings, we propose a set of recommendations to guide further research in this area.
... Close and collaborative engagement with end-users can be instrumental in addressing the ethical challenges of emerging technologies. Key insights that can be gathered through engagement include, for example, the determination of how closely the device or application intersects with end-user values, whether stated or implicit -a factor that has been shown to be important for adoption [9]. Consultation with end-users should also inform the dynamic monitoring of the balance between benefits and risks of a given telepresence application over the course of aging and age-associated conditions such as the various dementias. ...
Portacolone et al.'s Ethics Review highlights the ethical challenges associated with the implementation of telepresence devices and applications in the context of aging and dementia. In this response, we review ethical considerations as they relate to specific modalities of telepresence, with an emphasis on the continuum of potential interaction agents, from known individuals to fully automated and intelligent interlocutors. We further discuss areas in need of empirical evidence to inform regulatory efforts in telepresence. We close with a call for meaningful end-user engagement at all stages of technology development.
... In the modern era, technology-based interventions have attempted to ease the lives of dementia patients and their caretakers. After performing a comprehensive literature review, the bio-engineering devices could be grouped in seven different categories: physiocognitive aids; body-function monitoring systems; contextualenvironment sensors; location-tracking devices; care-bots; cognitive monitoring systems; and multi-sensor integrated devices [9]. ...
Worldwide, around 50 million people have dementia with symptoms including loss of memory, difficulty in thinking ability, issues with problem-solving and usage of language. About 1.2 million people provide specialised care for dementia patients throughout the world, but the number of trained dementia caretakers are low in India. Traditionally, the focus of medical research has been to find a plausible cure for dementia, while solutions to ease the lives of dementia patients, their caretakers, and their families are often neglected. This paper aims to design and develop a bio-engineering based assistive device- Memhans for patients suffering from the mild and moderate stage of dementia through the help of a case study, intensive design methodologies and prototyping skills. The prototype is an RFID based module integrating a GPS chip (for location tracking) with Bluetooth and a smartwatch app which has the function of relaxing the patient with music. It also provides notifications to the patient, their family, and their caretaker via respective smartphone apps and provides for a contextual understanding by ‘object and person identification’. This device provides the patient with assistance in daily activities, safety, person and object identification, and most importantly helps them live a dignified life. It also gives a sense of security and eases the minds of the caretaker and the patient’s family. This device is cost-effective and is developed for a large number of impoverished patients who reside in developing countries like India.
... What should then be taken into account to overcome these potential barriers? Robillard et al. 22 outlined the following as facilitators for adopting new technologies: (1) perception of convenience and possible benefits, (2) usability (perception of user friendliness and ease of learning), (3) affordability (perception of potential cost savings), (4) accessibility and availability in the market, (5) technical support availability and quality, (6) social support from relatives, friends, peers and community, (7) perception of emotional and psychological benefits, (8) perceptions regarding how technology makes someone look to others, (9) relevance to previous experience and interactions and (10) confidence to use technology without anxiety or intimidation. Previously, Wu et al. 23 suggested that the specific development of gerontechnologies directed to older adults may encompass a stigmatizing symbolism that can stop them from adopting these technologies. ...
As a result of several years of European funding, progressive introduction of assistive technologies in our society has provided many researchers and companies with opportunities to develop new information and communication technologies aimed at overcoming the digital divide of those at a greater risk of being left behind, as can be the case with healthy older people and those developing cognitive decline and dementia. Moreover, in recent years, when considering how information and communication technologies have been integrated into older people’s lives, and how technology has influenced these individuals, doubts remain regarding whether technologies really fulfil older users’ needs and wishes and whether technologies developed specifically for older users necessarily protect and consider main ethical values. In this article, we address the relevance of privacy, vulnerability and preservation of autonomy as key factors when involving older individuals as target users for information and communication technology research and development. We provide explanatory examples on ethical issues involved in the particular case of developing different types of information and communication technology for older people (from robotics to serious games), what previously performed research tells us about older adults’ preferences and wishes for information and communication technology and what steps should be taken into consideration in the near future.
... IATs for people with dementia also raise substantive ethical challenges [12][13][14][15][16]. The reason for that stems from the fact that these technologies are designed for vulnerable older individuals with physical frailty and cognitive disability, who often lack the capacity to consent to their use. ...
Background:
Advances in artificial intelligence (AI), robotics and wearable computing are creating novel technological opportunities for mitigating the global burden of population ageing and improving the quality of care for older adults with dementia and/or age-related disability. Intelligent assistive technology (IAT) is the umbrella term defining this ever-evolving spectrum of intelligent applications for the older and disabled population. However, the implementation of IATs has been observed to be sub-optimal due to a number of barriers in the translation of novel applications from the designing labs to the bedside. Furthermore, since these technologies are designed to be used by vulnerable individuals with age- and multi-morbidity-related frailty and cognitive disability, they are perceived to raise important ethical challenges, especially when they involve machine intelligence, collect sensitive data or operate in close proximity to the human body. Thus, the goal of this paper is to explore and assess the ethical issues that professional stakeholders perceive in the development and use of IATs in elderly and dementia care.
Methods:
We conducted a multi-site study involving semi-structured qualitative interviews with researchers and health professionals. We analyzed the interview data using a descriptive thematic analysis to inductively explore relevant ethical challenges.
Results:
Our findings indicate that professional stakeholders find issues of patient autonomy and informed consent, quality of data management, distributive justice and human contact as ethical priorities. Divergences emerged in relation to how these ethical issues are interpreted, how conflicts between different ethical principles are resolved and what solutions should be implemented to overcome current challenges.
Conclusions:
Our findings indicate a general agreement among professional stakeholders on the ethical promises and challenges raised by the use of IATs among older and disabled users. Yet, notable divergences persist regarding how these ethical challenges can be overcome and what strategies should be implemented for the safe and effective implementation of IATs. These findings provide technology developers with useful information about unmet ethical needs. Study results may guide policy makers with firsthand information from relevant stakeholders about possible solutions for ethically-aligned technology governance.
... Recent reviews and position papers, addressing AT for people with dementia from a broad perspective, generally come to concurrent conclusions regarding a range of topics to be addressed in order to make advances in research and bring to market evidence-based solutions that are usable and effective in everyday lives of people with dementia (Bächle et al., 2018;Holthe et al., 2018;Ienca et al., 2017;Kenigsberg et al., 2017;King and Dwan, 2017;Meiland et al., 2017;Robillard et al., 2018). Among the most recurrent is the recommendation to involve people with dementia in the design and testing of AT, to make sure that their needs, preferences, and capacities are met and also to pursue this end user perspective when developing applicable and effective methods for dissemination and adoption of AT. ...
Background
Assistive technology is advocated as a key solution to the need for support among people living with dementia. There is growing awareness of the benefits of user involvement in the design and test of these technologies and the need to identifying applicable and effective methods for implementation. The aim of this review was to explore and synthesize research addressing assistive technology designed to be used by people with dementia for self-management. Further research aims were to explore if and how user involvement, dissemination, and adoption of assistive technology were addressed.
Method
Electronic databases were searched using specified search terms. Key publications and grey literature sources were hand-searched. Materials published until year end 2018 were included. The results were summarized according to the research aims.
Results
Eleven papers derived from eight studies were included. The studies presented data from prototype design and testing, and the review showed great variation in study scope, design, and methodology. User involvement varied from extensive involvement to no user involvement. Methods for adoption also varied widely and only targeted prototype testing. None of the studies addressed dissemination.
Conclusion
The results of this review underline the need for well-designed high-quality research into all the aspects that are essential to deliver applicable, effective, and sustainable assistive technology to support self-management of people with dementia. There is a need for evidence-based methods to promote and qualify user involvement, dissemination, and adoption. The results also point to the need for standardized outcome measures and standards for conducting and reporting research to improve its quality and impact.
... At the same time, several ethical evaluation models have been presented to evaluate IATs [7][8][9][10]. However, the vast majority of IATs are designed in the absence of explicit ethical values and considerations [11]. ...
Some ethical evaluation models for Intelligent Assistive Technologies (IATs) have been presented in the literature. However, it has been proven that the vast majority of IATs were designed in the absence of explicit ethical values and considerations. In order to shed light on this problem, this paper presents a review of the literature on ethical values and considerations regarding IATs. According to this review, four challenges are identified to facilitate the evaluation of ethical models in IAT design: (i) Rational method, (ii) uncertainty evaluation process, (iii) evaluation results and aggregation process, (iv) software tool. These challenges are analyzed in order to propose an initial ethical model based on linguistic decision analysis.
... One specific example is the development of virtual assistants with adjustable socio-emotional personalities in the effort to construct assistive technologies for persons with cognitive disabilities. Adjusting the emotional delivery of text in subtle ways can have a strong effect on the adoption of the technologies (Robillard et al., 2018). It is challenging to transfer style this subtly due to lack of datasets on specific topics with consistent emotions. ...
In this paper, we present a novel method for measurably adjusting the semantics of text while preserving its sentiment and fluency, a task we call semantic text exchange. This is useful for text data augmentation and the semantic correction of text generated by chatbots and virtual assistants. We introduce a pipeline called SMERTI that combines entity replacement, similarity masking, and text infilling. We measure our pipeline's success by its Semantic Text Exchange Score (STES): the ability to preserve the original text's sentiment and fluency while adjusting semantic content. We propose to use masking (replacement) rate threshold as an adjustable parameter to control the amount of semantic change in the text. Our experiments demonstrate that SMERTI can outperform baseline models on Yelp reviews, Amazon reviews, and news headlines.
... This includes creating direct funding streams for technology, providing maintenance and updating support services, delivering new types of digitally enabled services with tech-savvy staff for people with dementia, harnessing big data to predict patterns of need and proactively identify people at risk, and supporting rapid development, testing and deployment of next-generation technological interventions. Supporting the technology-enabled provision of preventive and care interventions also requires a number of ethical issues to be addressed, including privacy, data ownership, sharing and usage, risk, rights, responsibilities and relationships (including data sharing) between private corporations and statutory bodies [92,93]. ...
Background:
Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place.
Objectives:
To summarise key areas of technology development in dementia and identify future directions and implications.
Method:
Members of the US Alzheimer's Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia.
Results:
The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management.
Conclusions:
The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.
... This includes creating direct funding streams for technology, providing maintenance and updating support services, delivering new types of digitally enabled services with tech-savvy staff for people with dementia, harnessing big data to predict patterns of need and proactively identify people at risk, and supporting rapid development, testing and deployment of next-generation technological interventions. Supporting the technology-enabled provision of preventive and care interventions also requires a number of ethical issues to be addressed, including privacy, data ownership, sharing and usage, risk, rights, responsibilities and relationships (including data sharing) between private corporations and statutory bodies [92,93]. ...
Digital technologies, such as smartphones and wearable technologies, are transforming the way we deliver healthcare. Many studies have demonstrated the potential benefits of digital health, including wider access to care, and improved clinical outcomes. User participation, however, is crucial for these benefits to be seen. The ability to predict participant attrition before it occurs would provide an opportunity to intervene, potentially keeping the participant engaged for a longer period. Additionally, modelling of adoption provides insight into the reasons why a user may or may not engage with a digital solution. This paper utilises data from six digital health evaluation studies to create two classification models: one predicting if users stay in past day 16 and the next predicting if those that do stay past 16 will stay in past day 84. These models returned accuracies of 79.1% and 85.2% and F1- Measures of 0.795 and 0.736 respectively. Six different classifier algorithms were evaluated and the best results for both models came from a Neural Network classifier, with an AdaBoost classifier being the next best. Survival analysis was undertaken on the dataset and indicated that those who engaged in the study from day 16 onward were more likely to stay in the study long term. Survival analysis was undertaken on the dataset and indicated that the majority of participants survive until at least day 16.
So far, we have presented some challenges associated with aging and examples where supportive smart home technologies could provide support to those wishing to age in place. However, we have only considered these in a simple one-dimensional way: here is a health challenge, and here is a technology that may support it. In reality, there are other forces at play in complex environments and our societies, including ethical principles and unique policy issues in different jurisdictions. To illustrate, if we consider that some of these technologies are health-related, let’s think about the health environment in two neighboring countries: Canada and the United States of America (USA). Differences in how these countries view healthcare may impact how health policy includes supportive smart home technology.
While technologies for aging in place are promoted to support care partners and people living with dementia, perspectives of people living with dementia are underrepresented in both use decisions among families and discussions within academia and industry. This mixed-methods study examined the use preferences of twenty-nine people living with mild Alzheimer's disease (AD) for four categories of technologies: location tracking, in-home sensors, web-cameras, and virtual companion robots. Participants completed a novel dyadic intervention, Let's Talk Tech, where they documented their preferences of the four technology categories for care planning purposes. Post-test interviews were thematically analyzed and provide insight into selection processes. Technology preferences varied considerably by and within participant living with mild AD. Excepting location tracking, non-technology and low-technology options were more desirable than the featured technologies. Control over technology use was of great importance to people living with AD. Considerations given to technology preference selection imperfectly fit within the new Health Technology Acceptance Model (H-TAM) developed for older adults. These findings underscore the importance of including people living with dementia in decision making about technologies to support care at home and the need for further personalization and tailorable technological devices to accommodate and align with their preferences.
Despite the benefits of assistive technology (AT), barriers to technology adoption still exist and are uniquely affecting older populations. Improving technology adoption can be achieved by involving end-users in the development and evaluation process. However, existing AT evaluation tools rarely take into account older adults' experiences. The goal of this study was to fill this gap by determining which AT evaluation criteria are important for older adults. We conducted 4 nominal group meetings with 21 participants aged 50+ in Vancouver, Canada. In the meetings, participants generated AT evaluation criteria and organized them in the order of importance. The content from the meetings was analyzed using qualitative content analysis. Final rankings were collated to reveal which criteria were the most important across the groups. We found that promotion of independence, affordability, ease of use and ethics are the most important AT evaluation criteria for older adults. Some aspects of ATs that older adults value, such as reliability, are not featured in AT evaluation tools. This study provides insight into older adults' priorities for AT evaluation criteria, and concerns that older adults have about AT use. The findings are supplemented with a comprehensive analysis of the group discussions that contextualizes the criteria.
This chapter provides an overview of ethics in biomedicine and healthcare while particularly focusing on the digital environments of care and research. An introduction to the four ethical principles of autonomy, nonmaleficence, beneficence, and justice in biomedicine is presented. Ethical questions referring to digitally supported healthcare are discussed along with three perspectives. The first perspective emphasizes the technology investigating ethical issues raised by big data, artificial intelligence and machine learning, smart assistive technologies, and social media. The second perspective pertains to covering informed consent and the risks regarding privacy and confidentiality for the patients. The third and final perspective refers to the healthcare providers and their relationship with the patients.Information technology is neither good nor bad. It is the way how it is intended, implemented, and practically technology is neither good nor bad. It is the way how used by people that makes all the difference. Therefore, assessments and evaluation studies of health IT regarding its ethical impact are required.The case study finally yields an example of what standardized data elements of code status should be implemented in electronic health records in order to improve the current practice of ensuring that the patient’s preferences are respected during their end-of-life situation.KeywordsAutonomyNon-maleficenceBeneficenceJusticeTechnologiesHealthcare providersPatientsPatient-provider relationshipData ethicsData scienceBig dataArtificial intelligenceEthical evaluation
Objectives, Purpose, or Aim
This article seeks to develop a context-based management system focusing on assessing key operational and design problems and affecting wayfinding in dementia residential care homes.
Background
Dementia is multifaceted neurocognitive impairments largely attributed to cognitive deterioration manifested in memory loss and visuospatial deficit which have wider practical implications to both environmental safety and wayfinding and navigation of dementia user. Two key questions were addressed in this context: (1) How can cognitively facilitating assistive technology (AT) be made more user-focused to mitigate the impacts of cognitive impairments on environmental safety and wayfinding? (2) How can design intervention and changes in design topology, colors and texture, and internal finishing aid wayfinding, navigation, and orientation in dementia residential care homes?
Method
A systematic literature review and analysis was undertaken to assess the efficacy of key cognitively-related AT to support activities of daily living and environmental safety of dementia sufferers in a care home and aid wayfinding, navigation, and orientation.
Results
Several key design variables to facilitate wayfinding and spatial orientation were identified which include design topology, floor finishing, signposting, and use of color and texture strengthened by meaning, emotional connection to places and cognitively focused intervention via memory cueing and objects-centered recognition.
Conclusions
Key operational and design guidelines were proposed to assist built environment, care home developers, clinicians and healthcare professionals, and care services providers. There is a need to move toward a dementia-centered design to address the challenges facing people living with dementia in care homes. This should be based on the interrelated behavioral, cognitive, and communication factors.
The incidence of dementia is increasing with increasing life expectancy. Dementia affects quality of life from several perspectives, as it affects higher cognitive functions including memory, thinking, orientation, comprehension, calculation, learning, speech and judgement. Technology can mitigate consequences of cognitive functional decline and is a possible solution that can make life easier for both, people with dementia and their careers. Assistive technology is an enabler that brings improved wellbeing, increased independence and autonomy, and thus prolonged independent living also for people with dementia. Telehealth technology can support careers and have a positive impact on the care of people with dementia living in community, as it encompasses elements of education, consultation, psychosocial therapy, social support and the clinical care itself. It can help with altered and inappropriate behavior. Mobile applications are on the rise and can serve as support services, for example information resources, emotional and psychological support, decision support, information on medication, ect. Their biggest positive aspect is financial and geographical accessibility, which are major barriers in traditional care settings. In the context of healthcare institutions, the use of mobile apps can improve the quality of care and raise the level of caregivers’ working practices. The aim of this study is to review the existing literature in this field and to identify missing gaps.
To successfully create assistive technologies for persons with dementia, product developers must understand the capacity of people with dementia to use these technologies. Capacity assessment is typically done through user experience research. However, the published literature is bereft of guidelines to conduct optimal user experience research in samples of persons with dementia.
We recruited persons with dementia from community-based organizations and private partners to participate in user experience research for an assistive technology platform. After a testing session, we used semi-structured interviews to ask participants about their involvement in the user experience process. We employed an inductive thematic approach to analyze the interview transcripts and draft guidelines to meaningfully engage persons with dementia in user experience research in the future.
Ten participants with mild to moderate dementia (6 females, 4 males) participated in the study. Nine participants had previous experience with mobile devices. Thematic analysis yielded three overarching themes: 1) the techniques, approaches and attributes of the interviewer; 2) participants’ views on being part of the user experience research process; and 3) specific items to optimize the research process. Resulting guidelines were divided into recommendations for the interviewer specifically, and for the broader research process.
Background:
The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act (NAPA), convened a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series. This review article summarizes three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the Summit.
Results:
Dr. Cassel discussed novel ethical considerations that have resulted from scientific advances that have enabled early diagnosis of pre-clinical dementia. Dr. Monin then summarized issues regarding emotional experiences in persons with dementia and their caregivers and care partners, including the protective impact of positive emotion and heterogeneity of differences in emotion by dementia type and individual characteristics that affect emotional processes with disease progression. Finally, Dr. Jared Benge provided an overview of the role of technologies in buffering the impact of cognitive change on real-world functioning and their utility in safety and monitoring of function and treatment adherence, facilitating communication and transportation, and increasing access to specialists in underserved or remote areas.
Conclusions:
National policy initiatives, supported by strong advocacy and increased federal investments, have accelerated the pace of scientific inquiry and innovation related to dementia care and services but have raised some new concerns regarding ethics, disparities, and attending to individual needs, capabilities, and preferences.
This study aims to determine the Information and Communication Technology (ICT) tools utilized by university faculties in East Africa and China, and to explore the connections allying instructors' perceptions over technology use and technology applications. A cross-sectional survey design questionnaire gathering information on the use of and attitudes towards technology applications was sent to five East African universities, and six Chinese universities. Respectively, data from 305 and 268 faculty members were collected, and analyzed using Technology Acceptance Modeling (TAM) combined with empirical and computational statistics. The results analysis found that only 19% of East African faculties taught part or all of an online course as compared to 69% of Chinese faculties. East Africa faculties use western social media much more than China faculties. However, China faculties use local social media more often. Findings from the relationships' path analysis reveal that for East Africa, System is the only variable that establishes a significant relationship with Actual technology Use. Ease of Use is closely related to Perceived Value, while Perceived Value is significantly related to Attitude towards technology. For China, System is the only variable that establishes a significant relationship with the Actual technology Use. Moreover, we find a wider relationship allying System Use and Actual technology tools Use for Chinese faculties indicating that they have more ICT access opportunities, thus their experience of using technology tools is more than that of East African faculties.
Social robots that can interact and communicate with people are growing in popularity for use at home and in customer-service, education, and healthcare settings. While growing evidence suggests that co-operative and emotionally-aligned social robots could benefit users across the lifespan, controversy continues about the ethical implications of these devices and their potential harms. In this perspective, we explore this balance between benefit and risk through the lens of human-robot relationships. We review the definitions and purposes of social robots, explore their philosophical and psychological status, and relate research on human-human and human-animal relationships to the emerging literature on human-robot relationships. Advocating a relational rather than essentialist view, we consider the balance of benefits and harms that can arise from different types of relationship with social robots and conclude by considering the role of researchers in understanding the ethical and societal impacts of social robotics.
Socially assistive robots have the potential to improve aged care by providing assistance through social interaction. While some evidence suggests a positive impact of social robots on measures of well-being, the adoption of robotic technology remains slow. One approach to improve technology adoption is involving all stakeholders in the process of technology development using co-creation methods. To capture relevant stake holders' priorities and perceptions on the ethics of robotic companions, we conducted an interactive co-creation workshop at the 2019 Geriatric Services Conference in Vancouver, BC. The participants were presented with different portrayals of robotic companions in popular culture and answered questions about perceptions, expectations, and ethical concerns about the implementation of robotic technology. Our results reveal that the most pressing ethical concerns with robotic technology, such as issues related to privacy, are critical potential barriers to technology adoption. We also found that most participants agree on the types of tasks that robots should help with, such as domestic chores, communication, and medication reminders. Activities that robots should not help with, according to the stakeholders, included bathing, toileting, and managing finances. The perspectives that were captured contribute to a preliminary outline of the areas of importance for geriatric care stake holders in the process of ethical technology design and development.
Objective:
Assistive technologies (ATs) support independence and well-being in people with cognitive, perceptual, and physical limitations. Given the increasing availability and diversity of ATs, evaluating the usefulness of current and emerging ATs is crucial for informed comparison. We aimed to chart the landscape and development of AT evaluation tools (ETs) across disparate fields in order to improve the process of AT evaluation and development.
Data sources:
We performed a scoping review of AT-ETs through database searching of MEDLINE, Embase, CINAHL, HaPI, PsycINFO, Cochrane Reviews, and Compendex as well as citation mining.
Study selection:
Articles explicitly referencing AT-ETs were retained for screening. We included ETs if they were designed to specifically evaluate ATs.
Data extraction:
We extracted five attributes of AT-ETs: AT-category, construct evaluated, conceptual frameworks, type of end-user input used for AT-ET development, and presence of validity testing.
Data synthesis:
From screening 23 434 records, we included 159 AT-ETs. Specificity of tools ranged from single to general ATs across 40 AT-categories. Satisfaction, functional performance, and usage were the most common constructs of 103 identified. We identified 34 conceptual frameworks across 53 ETs. Finally, 36% incorporated end-user input and 80% showed validation testing.
Conclusions:
We characterized a wide range of AT-categories with diverse approaches to their evaluation based on varied conceptual frameworks. Combining these frameworks in future AT-ETs may provide more holistic views of AT usefulness. AT-ET selection may be improved with guidelines for conceptually reconciling results of disparate AT-ETs. Future AT-ET development may benefit from more integrated approaches to end-user engagement.
Purpose: This study was aimed at assessing a smartphone-based intervention to help 11 individuals with moderate Alzheimer’s disease and ambulation problems to manage goal-directed, walker-assisted ambulation and object use (i.e., to reach specific destinations and put away objects at those destinations independently).
Method: The study was carried out according to a non-concurrent multiple baseline design across participants. Two measures were recorded, that is, the number of target responses performed correctly (with each target response consisting of reaching a destination and putting away an object), and the number of observation intervals with indices of enjoyment/appreciation (e.g., smiles and positive comments). During baseline, the participants were provided with a walker and three objects that were to be transported to and put away at specific destinations. During the intervention, the participants also had the smartphone-based technology that provided them with instructions about the destinations and objects, praise, and preferred stimulation.
Results: During baseline, the mean frequency of correct target responses was virtually zero. The mean frequency of intervals with indices of enjoyment/appreciation ranged from zero to close to one. During the intervention, the mean frequencies for the two measures were slightly below three and just over three, respectively. The maximum frequencies possible were three and four, respectively.
Conclusions: A smartphone-based intervention may be suitable to foster goal-directed, walker-assisted ambulation and object use as well as enjoyment/appreciation in participants like those involved in this study.
• IMPLICATIONS FOR REHABILITATION
• A smartphone-based intervention may be used to promote goal-directed, walker-assisted ambulation and object use as well as indices of enjoyment/appreciation in persons with moderate Alzheimer disease.
• The technology for such intervention might involve (a) a smartphone with Android operating system, light sensor, Bluetooth v4.0, and MacroDroid, (b) Bluetooth headphones or earpieces, and (c) battery-powered light sources.
• The technology may provide the participants with instructions about the destinations to reach and the objects to put away at those destinations, and with praise and brief periods of preferred stimulation at the target destinations.
• The technology may be considered easy to access, friendly for the participants, and suitable for use by staff within daily contexts.
The use of Intelligent Assistive Technology (IAT) in dementia care opens the prospects of reducing the global burden of dementia and enabling novel opportunities to improve the lives of dementia patients. However, with current adoption rates being reportedly low, the potential of IATs might remain under-expressed as long as the reasons for suboptimal adoption remain unaddressed. Among these, ethical and social considerations are critical. This article reviews the spectrum of IATs for dementia and investigates the prevalence of ethical considerations in the design of current IATs. Our screening shows that a significant portion of current IATs is designed in the absence of explicit ethical considerations. These results suggest that the lack of ethical consideration might be a codeterminant of current structural limitations in the translation of IATs from designing labs to bedside. Based on these data, we call for a coordinated effort to proactively incorporate ethical considerations early in the design and development of new products.
Our overall aim is to develop an emotionally intelligent cognitive assistant (ICA) to help older adults with Alzheimer's disease (AD) to complete activities of daily living more independently. For improved adoption, such a system should take into account how individuals feel about who they are. This paper investigates different affective identities found in older care home residents with AD, leading to a computational characterization of these aspects and, thus, tailored prompts to each specific individual's identity in a way that potentially ensures smoother and more effective uptake and response. We report on a set of qualitative interviews with 12 older adult care home residents and caregivers. The interview covered life domains (family, origin, occupation, etc.), and feelings related to the ICA. All interviews were transcribed and analyzed to extract a set of affective identities, coded according to the social–psychological principles of affect control theory (ACT). Preliminary results show that a set of identities can be extracted for each participant (e.g. father, husband). Furthermore, our results provide support for the proposition that, while identities grounded in memories fade as a person loses their memory, habitual aspects of identity that reflect the overall “persona” may persist longer, even without situational context.
Smart homes offer an unprecedented opportunity to unobtrusively monitor human behavior in everyday environments and to determine whether relationships exist between behavior and health changes. Behavior change detection (BCD) can be used to identify changes that accompany health events, which can potentially save lives.
Smart mobile and wearable technology offers exciting opportunities to support people with dementia (PwD). Its ubiquity and popularity could even benefit user adoption – a great challenge for assistive technology (AT) for PwD that calls for user-centred design (UCD) methods. This study describes a user-centred approach to developing and testing AT based on off-the-shelf pervasive technologies. A prototype is created by combining a smartphone, smartwatch and various applications to offer six support features. This is tested among five end-users (PwD) and their caregivers. Controlled usability testing was followed by field testing in a real-world context. Data is gathered from video recordings, interaction logs, system usability scale questionnaires, logbooks, application usage logs and interviews structured on the unified theory of acceptance and use of technology model. The data is analysed to evaluate usability, usefulness and user acceptance. Results show some promise for user adoption, but highlight challenges to be overcome, emphasising personalisation and familiarity as key considerations. The complete findings regarding usability issues, usefulness of support features and four identified adoption profiles are used to provide a set of recommendations for practitioners and further research. These contribute toward UCD practices for improved smart, pervasive AT for dementia.
Background
The population of people with dementia is not homogeneous. People with dementia exhibit a wide range of needs, each characterized by diverse factors including age, sex, ethnicity, and place of residence. These needs and characterizing factors may influence the applicability, and ultimately the acceptance, of assistive technologies developed to support the independence of people with dementia. Accordingly, predicting the needs of users before developing the technologies may increase the applicability and acceptance of assistive technologies. Current methods of prediction rely on the difficult collection of subjective, potentially invasive information. We propose a method of prediction that uses objective, unobtrusive, easy to collect information to help inform the development of assistive technologies.
Methods
We develop a set of models that can predict the level of independence of people with dementia during 20 activities of daily living using simple, objective information. Using data collected from a Canadian survey conducted with caregivers of people with dementia, we create an ordered logistic regression model for each of the twenty daily tasks in the Bristol ADL scale.
Results
Data collected from 430 Canadian caregivers of people with dementia were analyzed to reveal: most care recipients were mothers or husbands, married, living in private housing with their caregivers, English-speaking, Canadian born, clinically diagnosed with dementia 1 to 6 years prior to the study, and were dependent on their caregiver. Next, we developed models that use 13 factors to predict a person with dementia’s ability to complete the 20 Bristol activities of daily living independently. The 13 factors include caregiver relation, age, marital status, place of residence, language, housing type, proximity to caregiver, service use, informal primary caregiver, diagnosis of Alzheimer’s disease or dementia, time since diagnosis, and level of dependence on caregiver. The resulting models predicted the aggregate level of independence correctly for 88 of 100 total responses categories, marginally for nine, and incorrectly for three.
Conclusions
Objective, easy to collect information can predict caregiver-reported level of task independence for a person with dementia. Knowledge of task independence can then inform the development of assistive technologies for people with dementia, improving their applicability and acceptance.
Background Older adults’ acceptability of smart homes that learn their motion patterns and can take an action on their behalf has received little attention. This interdisciplinary study explored the influence of culture on older adults’ adoption of smart home monitoring. Method In-depth email interviews were used with a purposive sample of US older adults (n=21) age 65 and older. Participants were asked to prospectively consider the question of adoption of a smart home that combines artificial intelligence software with sensor monitoring for the purpose of maintaining safety and health of the community-dwelling older adult. Content analysis, consistent with the qualitative descriptive methodology, was used to organize data into low-inference themes. Themes were iteratively evaluated and consensus among the research team was achieved. Results and discussion Themes that emerged from rich text and were supported with participants’ own words were privacy, pride and dignity, family, trust, being watched, human touch, features and functionality, cost, and timing. Participants were asked to self-identify their own culture of socially constructed values, which were found to heavily inform perceptions of privacy, independence, and family. Many participants indicated a prospective openness to smart home interventions, including monitoring. Openness depended on (i) the level and specificity of need and whether the smart home would meet that need, (ii) perceived loss of privacy compensated by a feeling of safety and a receipt of health-assistance, (iii) functionality, and (iv) cost. Findings from this study explicate and illuminate older adults’ perceptions and descriptions of smart home monitoring, the relation to their own socially constructed values, and the influence on a decision to adopt or not adopt smart home monitoring. Findings may be used to inform the design of future smart homes, marketing, clinical practice and education, health policy, interdisciplinary collaboration, and research.
Background:
There is a political drive in the UK to use assistive technologies such as telehealth and telecare as an innovative and efficient approach to healthcare delivery. However, the success of implementation of such services remains dependent on the ability to engage the wider population to adopt these services. It has been widely acknowledged that low acceptance of technology, forms a key barrier to adoption although findings been mixed. Further, it remains unclear what, if any barriers exist between patients and how these compare to those who have declined or withdrawn from using these technologies. This research aims to address this gap focusing on the UK based Cambridgeshire Community Services Assistive Telehealth and Telecare service, an integrated model of telehealth and telecare.
Methods:
Qualitative semi-structured interviews were conducted between 1st February 2014 and 1st December 2014, to explore the views and experiences of 'users' and 'non-users' using this service. 'Users' were defined as patients who used the service (N = 28) with 'non-users' defined as either referred patients who had declined the service before allocation (N = 3) or had withdrawn after using the ATT service (N = 9). Data were analysed using the Framework Method.
Results:
This study revealed that there are a range of barriers and facilitators that impact on the decision to adopt and continue to engage with this type of service. Having a positive attitude and a perceived need that could be met by the ATT equipment were influential factors in the decision to adopt and engage in using the service. Engagement of the service centred on 'usability', 'usefulness of equipment', and 'threat to identity and independence'.
Conclusions:
The paper described the influential role of referrers in decision-making and the need to engage with such agencies on a strategic level. The findings also revealed that reassurance from the onset was paramount to continued engagement, particularly in older patients who appeared to have more negative feelings towards technology. In addition, there is a clear need for continued product development and innovation to not only increase usability and functionality of equipment but also to motivate other sections of the population who could benefit from such services. Uncovering these factors has important policy implications in how services can improve access and patient support through the application of assistive technology which could in turn reduce unnecessary cost and burden on overstretched health services.
Despite continuing debate about the amyloid β-protein (or Aβ hypothesis, new lines of evidence from laboratories and clinics worldwide support the concept that an imbalance between production and clearance of Aβ42 and related Aβ peptides is a very early, often initiating factor in Alzheimer's disease (AD). Confirmation that presenilin is the catalytic site of γ-secretase has provided a linchpin: all dominant mutations causing early-onsetADoccur either in the substrate (amyloid precursor protein,APP) or the protease (presenilin) of the reaction that generates Aβ. Duplication of the wild-typeAPPgene in Down's syndrome leads to Aβ deposits in the teens, followed by microgliosis, astrocytosis, and neurofibrillary tangles typical ofAD Apolipoprotein E4, which predisposes toADin > 40% of cases, has been found to impair Aβ clearance from the brain. Soluble oligomers of Aβ42 isolated fromADpatients' brains can decrease synapse number, inhibit long-term potentiation, and enhance long-term synaptic depression in rodent hippocampus, and injecting them into healthy rats impairs memory. The human oligomers also induce hyperphosphorylation of tau atAD-relevant epitopes and cause neuritic dystrophy in cultured neurons. Crossing humanAPPwith human tau transgenic mice enhances tau-positive neurotoxicity. In humans, new studies show that low cerebrospinal fluid (CSF) Aβ42 and amyloid-PETpositivity precede otherADmanifestations by many years. Most importantly, recent trials of three different Aβ antibodies (solanezumab, crenezumab, and aducanumab) have suggested a slowing of cognitive decline inpost hocanalyses of mildADsubjects. Although many factors contribute toADpathogenesis, Aβ dyshomeostasis has emerged as the most extensively validated and compelling therapeutic target.
Introduction:
Information and communication technology (ICT) is potentially mature enough to empower outdoor and social activities in dementia. However, actual ICT-based devices have limited functionality and impact, mainly limited to safety. What is an ideal operational framework to enhance this field to support outdoor and social activities?
Methods:
Review of literature and cross-disciplinary expert discussion.
Results:
A situation-aware ICT requires a flexible fine-tuning by stakeholders of system usability and complexity of function, and of user safety and autonomy. It should operate by artificial intelligence/machine learning and should reflect harmonized stakeholder values, social context, and user residual cognitive functions. ICT services should be proposed at the prodromal stage of dementia and should be carefully validated within the life space of users in terms of quality of life, social activities, and costs.
Discussion:
The operational framework has the potential to produce ICT and services with high clinical impact but requires substantial investment.
Purpose
– The purpose of this paper is to present the self-described “journey” of a person with dementia (Brian; author 3) in his re-learning of old technologies and learning of new ones and the impact this had on his life.
Design/methodology/approach
– This is a single case study detailing the participant's experiences collaborating with a researcher to co-create methods of facilitating this learning process, which he documented in the form of an online blog and diary entries. These were analysed using NVivo to reveal the key themes.
Findings
– Brian was able to relearn previously used technologies and learn two new ones. This lead to an overarching theme of positive outlook on life supported by person-centredness, identity and technology, which challenged negative perceptions about dementia.
Research limitations/implications
– The paper provides an example of how learning and technology improved the life of one person with dementia. By sharing the approach the authors hope to encourage others to embrace the challenge of designing and developing innovative solutions for people with a dementia diagnosis by leveraging both current mainstream technology and creating novel bespoke interventions for dementia.
Originality/value
– The personal perspective of a person with dementia and his experiences of (re-) learning provide a unique insight into the impact of technology on his life.
Introduction:
Freely accessible online tests for the diagnosis of Alzheimer's disease (AD) are widely available. The objective of this study was to evaluate these tests along three dimensions as follows: (1) scientific validity; (2) human-computer interaction (HCI) features; and (3) ethics features.
Methods:
A sample of 16 online tests was identified through a keyword search. A rating grid for the tests was developed, and all tests were evaluated by two expert panels.
Results:
Expert analysis revealed that (1) the validity of freely accessible online tests for AD is insufficient to provide useful diagnostic information; (2) HCI features of the tests are adequate for target users, and (3) the tests do not adhere to accepted ethical norms for medical interventions.
Discussion:
The most urgent concerns raised center on the ethics of collecting and evaluating responses from users. Physicians and other professionals will benefit from a heightened awareness of these tools and their limitations today.
Background:
Assistive Technology (AT) has been suggested as a means by which people with dementia can be helped to live independently, while also leading to greater efficiencies in care. However little is known about how AT is being used by people with dementia and their carers in their daily routines. This paper reports on a qualitative study exploring the everyday use of AT by people with dementia and their families.
Methods:
The research employed a qualitative methodology. Semi structured interviews took place with 39 participants, 13 people with dementia and 26 carers. Key themes were identified using thematic analysis and the constant comparative method.
Results:
Three categories of AT use in everyday settings were identified; formal AT, accessed via social care services, 'off the shelf AT' purchased privately, and 'do it yourself' AT, everyday household products adapted by families to fulfil individual need in the absence of specific devices. Access to AT was driven by carers, with the majority of benefits being experienced by carers. Barriers to use included perceptions about AT cost; dilemmas about the best time to use AT; and a lack of information and support from formal health and social care services about how to access AT, where to source it and when and how it can be used.
Conclusions:
It has been argued that the 'mixed economy' landscape, with private AT provision supplementing state provision of AT, is a key feature for the mainstreaming of AT services. Our data suggests that such a mixed economy is indeed taking place, with more participants using 'off the shelf' and 'DIY' AT purchased privately rather than via health and social care services. However this system has largely arisen due to an inability of formal care services to meet client needs. Such findings therefore raise questions about just who AT in its current provision is working for and whether a mixed market approach is the most appropriate provider model. Everyday technologies play an important role in supporting families with dementia to continue caring; further research is needed however to determine the most effective and person-centred models for future AT provision.
DemaWare is a Service-Oriented platform that aids in the timely assessment and monitoring of people with dementia in an Ambient Assisted Living context. This work presents in detail the underlying modules integrated in DemaWare, providing both software and hardware services. The system coordinates the retrieval of raw sensor data from a variety of sources, such as ambient and wearable sensors, and their processing into a common knowledge base. The semantic interpretation performed afterwards reasons upon collected knowledge and infers higher level observations. Finally, all knowledge is presented in suitable end-user applications that support various scenarios, e.g. lab assessment trials and monitoring in nursing home environments. Copyright © 2015, IGI Global. Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited.
Traditionally, assessment of functional and cognitive status of individuals with dementia occurs in brief clinic visits during which time clinicians extract a snapshot of recent changes in individuals’ health. Conventionally, this is done using various clinical assessment tools applied at the point of care and relies on patients’ and caregivers’ ability to accurately recall daily activity and trends in personal health. These practices suffer from the infrequency and generally short durations of visits. Since 2004, researchers at the Oregon Center for Aging and Technology (ORCATECH) at the Oregon Health and Science University (OHSU) have been working on developing technologies to transform this model. ORCATECH researchers have developed a system of continuous in-home monitoring using pervasive computing technologies that make it possible to more accurately track activities and behaviors and measure relevant intra-individual changes. We have installed a system of strategically placed sensors in over 480 homes and have been collecting data for up to 8 years. Using this continuous in-home monitoring system ORCATECH researchers have collected data on multiple behaviors such as gait and mobility, sleep and activity patterns, medication adherence and computer use. Patterns of intra-individual variation detected in each of these areas are used to predict outcomes such as low mood, loneliness, and cognitive function. These methods have the potential to improve the quality of patient health data and in turn patient care especially related to cognitive decline. Furthermore, the continuous real-world nature of the data may improve the efficiency and ecological validity of clinical intervention studies.
This review aimed to identify the areas of need that older people have, and the available solutions. In particular, the robotic solutions are explored and critiqued and areas for future development identified. The literature was reviewed for factors that influence admission to nursing home care, and for technological solutions to these factors. The main issues facing older people are physical decline, cognitive decline, health management, and psychosocial issues. Robots exist that may meet some of the identified issues but gaps where robots could be developed include delivering interventions to prevent physical decline occurring and robots with multiple functions, including a range of cognitive stimuli and health education. To reduce barriers to acceptance, robots designed to provide physical and healthcare assistance should have a serious appearance. On the other hand animal-like robots can address psychosocial issues and function like pets. While smart phones and computers can offer some solutions, robots may promote adherence due to a social presence. Robots are being developed to address areas of need in older people, including physical, cognitive, medical and psychosocial issues. However more focus could be placed on developing preventative interventions, multifunctional robots, greater educational content and motivational aspects of appearance and interaction style.
Ambient assisted living (AAL) technologies can provide assistance and support to persons with dementia. They might allow them the possibility of living at home for longer whilst maintaining their comfort and security as well as offering a way towards reducing the huge economic and personal costs forecast as the incidence of dementia increases worldwide over coming decades. However, the development, introduction and use of AAL technologies also trigger serious ethical issues. This paper is a systematic literature review of the on-going scholarly debate about these issues. More specifically, we look at the ethical issues involved in research and development, clinical experimentation, and clinical application of AAL technologies for people with dementia and related stakeholders. In the discussion we focus on: (1) the value of the goals of AAL technologies, (2) the special vulnerability of persons with dementia in their private homes, (3) the complex question of informed consent for the usage of AAL technologies.
Health technology assessment (HTA) is the multidisciplinary study of the implications of the development, diffusion and use of health technologies. It supports health-policy decisions by providing a joint knowledge base for decision-makers. To increase its policy relevance, HTA tries to extend beyond effectiveness and costs to also considering the social, organizational and ethical implications of technologies. However, a commonly accepted method for analysing the ethical aspects of health technologies is lacking. This paper describes a model for ethical analysis of health technology that is easy and flexible to use in different organizational settings and cultures. The model is part of the EUnetHTA project, which focuses on the transferability of HTAs between countries. The EUnetHTA ethics model is based on the insight that the whole HTA process is value laden. It is not sufficient to only analyse the ethical consequences of a technology, but also the ethical issues of the whole HTA process must be considered. Selection of assessment topics, methods and outcomes is essentially a value-laden decision. Health technologies may challenge moral or cultural values and beliefs, and their implementation may also have significant impact on people other than the patient. These are essential considerations for health policy. The ethics model is structured around key ethical questions rather than philosophical theories, to be applicable to different cultures and usable by non-philosophers. Integrating ethical considerations into HTA can improve the relevance of technology assessments for health care and health policy in both developed and developing countries
Purpose
To provide an overview of factors influencing the acceptance of electronic technologies that support aging in place by community-dwelling older adults. Since technology acceptance factors fluctuate over time, a distinction was made between factors in the pre-implementation stage and factors in the post-implementation stage.
Methods
A systematic review of mixed studies. Seven major scientific databases (including MEDLINE, Scopus and CINAHL) were searched. Inclusion criteria were as follows: (1) original and peer-reviewed research, (2) qualitative, quantitative or mixed methods research, (3) research in which participants are community-dwelling older adults aged 60 years or older, and (4) research aimed at investigating factors that influence the intention to use or the actual use of electronic technology for aging in place. Three researchers each read the articles and extracted factors.
Results
Sixteen out of 2,841 articles were included. Most articles investigated acceptance of technology that enhances safety or provides social interaction. The majority of data was based on qualitative research investigating factors in the pre-implementation stage. Acceptance in this stage is influenced by 27 factors, divided into six themes: concerns regarding technology (e.g., high cost, privacy implications and usability factors); expected benefits of technology (e.g., increased safety and perceived usefulness); need for technology (e.g., perceived need and subjective health status); alternatives to technology (e.g., help by family or spouse), social influence (e.g., influence of family, friends and professional caregivers); and characteristics of older adults (e.g., desire to age in place). When comparing these results to qualitative results on post-implementation acceptance, our analysis showed that some factors are persistent while new factors also emerge. Quantitative results showed that a small number of variables have a significant influence in the pre-implementation stage. Fourteen out of the sixteen included articles did not use an existing technology acceptance framework or model.
Conclusions
Acceptance of technology in the pre-implementation stage is influenced by multiple factors. However, post-implementation research on technology acceptance by community-dwelling older adults is scarce and most of the factors in this review have not been tested by using quantitative methods. Further research is needed to determine if and how the factors in this review are interrelated, and how they relate to existing models of technology acceptance.
Telehealth and telecare research has been dominated by efficacy trials. The field lacks a sophisticated theorisation of [a] what matters to older people with assisted living needs; [b] how illness affects people's capacity to use technologies; and [c] the materiality of assistive technologies. We sought to develop a phenomenologically and socio-materially informed theoretical model of assistive technology use. Forty people aged 60-98 (recruited via NHS, social care and third sector) were visited at home several times in 2011-13. Using ethnographic methods, we built a detailed picture of participants' lives, illness experiences and use (or non-use) of technologies. Data were analysed phenomenologically, drawing on the work of Heidegger, and contextualised using a structuration approach with reference to Bourdieu's notions of habitus and field. We found that participants' needs were diverse and unique. Each had multiple, mutually reinforcing impairments (e.g. tremor and visual loss and stiff hands) that were steadily worsening, culturally framed and bound up with the prospect of decline and death. They managed these conditions subjectively and experientially, appropriating or adapting technologies so as to enhance their capacity to sense and act on their world. Installed assistive technologies met few participants' needs; some devices had been abandoned and a few deliberately disabled. Successful technology arrangements were often characterised by 'bricolage' (pragmatic customisation, combining new with legacy devices) by the participant or someone who knew and cared about them. With few exceptions, the current generation of so-called 'assisted living technologies' does not assist people to live with illness. To overcome this irony, technology providers need to move beyond the goal of representing technology users informationally (e.g. as biometric data) to providing flexible components from which individuals and their carers can 'think with things' to improve the situated, lived experience of multi-morbidity. A radical revision of assistive technology design policy may be needed.
Older adults are disproportionately vulnerable to fraud, and federal agencies have speculated that excessive trust explains their greater vulnerability. Two studies, one behavioral and one using neuroimaging methodology, identified age differences in trust and their neural underpinnings. Older and younger adults rated faces high in trust cues similarly, but older adults perceived faces with cues to untrustworthiness to be significantly more trustworthy and approachable than younger adults. This age-related pattern was mirrored in neural activation to cues of trustworthiness. Whereas younger adults showed greater anterior insula activation to untrustworthy versus trustworthy faces, older adults showed muted activation of the anterior insula to untrustworthy faces. The insula has been shown to support interoceptive awareness that forms the basis of "gut feelings," which represent expected risk and predict risk-avoidant behavior. Thus, a diminished "gut" response to cues of untrustworthiness may partially underlie older adults' vulnerability to fraud.
B.I.); dejan.dinevski@uni-mb.si (D.D.) 3 Telekom Slovenije d.d., Abstract: Being familiar with all the benefits of e-Health and the strategic plan for the Slovenian health sector's informatization, Telekom Slovenia and the Faculty of Medicine from the University of Maribor, along with other partners, have initiated an e-Health project. The project group is developing various e-Health services that are based on modern ICT (information and communications technology) solutions and will be available on several screens. In order to meet the users' needs and expectations and, consequently, achieve the high acceptance of e-Health services, the user-centered design (UCD) approach was employed in the e-Health project. However, during the research it was found that conventional UCD methods are not completely appropriate for older adults: the target population of the e-Health services. That is why the selected UCD methods were modified and adapted for older adults. The modified UCD methods used in the research study are presented in this paper. Using the results of the adapted UCD methods, a prototype for a service named MedReminder was developed. The prototype was evaluated by a group of 12 study participants. The study participants evaluated the MedReminder service as acceptable with a good potential for a high adoption rate among its target population, i.e., older adults.
In Europe, telecare is the use of remote monitoring technology to enable vulnerable people to live independently in their own homes. The technology includes electronic tags and sensors that transmit information about the user's location and patterns of behavior in the user's home to an external hub, where it can trigger an intervention in an emergency. Telecare users in the United Kingdom sometimes report their unease about being monitored by a "Big Brother," and the same kind of electronic tags that alert telecare hubs to the movements of someone with dementia who is "wandering" are worn by terrorist suspects who have been placed under house arrest. For these and other reasons, such as ordinary privacy concerns, telecare is sometimes regarded as an objectionable extension of a "surveillance state." In this article, we defend the use of telecare against the charge that it is Orwellian. In the United States, the conception of telecare primarily as telemedicine, and the fact that it is not typically a government responsibility, make a supposed connection with a surveillance state even more doubtful than in Europe. The main objection, we argue, to telecare is not its intrusiveness, but the danger of its deepening the isolation of those who use it. There are ways of organizing telecare so that the independence and privacy of users are enhanced, but personal isolation may be harder to address. As telecare is a means of reducing the cost of publicly provided social and health care, and the need to reduce public spending is growing, the correlative problem of isolation must be addressed alongside the goal of promoting independence.
The aim of this review paper is to summarize recent developments in the field of wearable sensors and systems that are relevant to the field of rehabilitation. The growing body of work focused on the application of wearable technology to monitor older adults and subjects with chronic conditions in the home and community settings justifies the emphasis of this review paper on summarizing clinical applications of wearable technology currently undergoing assessment rather than describing the development of new wearable sensors and systems. A short description of key enabling technologies (i.e. sensor technology, communication technology, and data analysis techniques) that have allowed researchers to implement wearable systems is followed by a detailed description of major areas of application of wearable technology. Applications described in this review paper include those that focus on health and wellness, safety, home rehabilitation, assessment of treatment efficacy, and early detection of disorders. The integration of wearable and ambient sensors is discussed in the context of achieving home monitoring of older adults and subjects with chronic conditions. Future work required to advance the field toward clinical deployment of wearable sensors and systems is discussed.
With the upcoming reform of the healthcare system and the greater emphasis on care in the home and other living environments, geriatric providers will need alternate ways of monitoring disease, activity, response to therapy, and patient safety. Current understanding of the dynamic nature of chronic illnesses, their effects on health over time, and the ability to manage them in the community are limited to measuring a set of variables at discrete points in time, which does not account for the dynamic interactions between physiological systems and the environments of daily life. Recent developments of sensors, data recorders, and communication networks allow the unprecedented measurements of physiological and sociological data for use in geriatrics care. This article identifies and discusses the important issues regarding the use of monitoring technologies in elderly patients. The goals are fourfold. First, some emerging technology that may improve the lives of older adults and improve care are highlighted. Second, the possible applications of technology in geriatrics settings are discussed, with a focus on acute falls, dementia, and cardiac conditions. Third, real and perceived concerns in using monitoring technology are identified and addressed, including technology adoption by elderly people; stigma; and the reduction in social contact; ethical concerns of privacy, autonomy, and consent; concerns of clinicians, including information overload, licensure, and liability; current reimbursement schemes for using technology; and the reliability and infrastructure needed for monitoring technology. Fourth, future approaches to make monitoring technology useful and available in geriatrics are recommended.
'Brain training', or the goal of improved cognitive function through the regular use of computerized tests, is a multimillion-pound industry, yet in our view scientific evidence to support its efficacy is lacking. Modest effects have been reported in some studies of older individuals and preschool children, and video-game players outperform non-players on some tests of visual attention. However, the widely held belief that commercially available computerized brain-training programs improve general cognitive function in the wider population in our opinion lacks empirical support. The central question is not whether performance on cognitive tests can be improved by training, but rather, whether those benefits transfer to other untrained tasks or lead to any general improvement in the level of cognitive functioning. Here we report the results of a six-week online study in which 11,430 participants trained several times each week on cognitive tasks designed to improve reasoning, memory, planning, visuospatial skills and attention. Although improvements were observed in every one of the cognitive tasks that were trained, no evidence was found for transfer effects to untrained tasks, even when those tasks were cognitively closely related.