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http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 1 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al Background: With the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge. Objective: The aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research. Methods: Reviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases. Results: According to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies. Conclusions: Based on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them. (JMIR Rehabil Assist Technol 2017;4(1):e1) doi: 10.2196/rehab.6376 KEYWORDS dementia; technology; evaluation studies; diffusion of innovation; ethics with dementia, as many mainstream technologies can be adapted Introduction to their changing needs. Important need areas in dementia are memory support, information, company, reducing psychological Due to our aging societies, dementia has become a 21st-century distress, and engaging in daytime activities [9,10]. Various global public health concern, placing considerable burden on technologies have been developed to address these needs, such not only the individual and their family but also current and as electronic calendars, Web-based information systems, future service provision [1]. Worldwide prevalence is around video-calling, and electronic activity support systems [11-13]. 46 million, a figure predicted to treble to 131.5 million by 2050, with current care costs recently estimated at US $818 billion Evaluation studies have found that persons with dementia are [2]. Among all chronic diseases, dementia is one of the most positive about using electronic devices to facilitate their important contributors to dependence, disability, and care home independence and reduce family stress [11,14]. Furthermore, placement [3]. Despite a global policy push toward more timely small-scale studies have found that assistive technologies diagnosis and earlier intervention, considerable geographical improve independence [15], behavioral symptoms in persons inequalities in the provision of post-diagnostic care and support with dementia [16], and quality of life [15], and stress in carers services exist [4]. One aspect of postdiagnostic support, which [16]. may enable persons with dementia to remain independent for Despite the promising benefits of technological support systems, a longer time and thus potentially leading to cost savings by several issues remain before they will really make a difference delaying entry into care and nursing homes [2,3], is assistive in the field of dementia care. For example, the predominant use technology. Assistive technology for persons with dementia of technological solutions for safety and security and carer can be defined as “Any item, piece of equipment, product or reassurance rather than for lifestyle in general [17]; the slow system driven by electronics, whether acquired commercially, uptake and implementation of assistive technologies; the lack off-the-shelf, modified or customized, that is used to help of high-quality scientific research into the effectiveness and persons with dementia in dealing with the consequences of cost-effectiveness of assistive technologies in dementia care dementia” (see also Marshall [5]; Assistive Technology Industry [18,19], the lack of successful commercialization of prototype Association [6]; ISO9999 [7]). The technology does not technologies; and the limited attention to aesthetics, which can necessarily need to be “purposely designed” [8] for persons http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 2 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al make many technological support systems feel stigmatizing effectiveness and cost-effectiveness, and ethical issues, separate [20]. Furthermore, professionals and society also seem to lack literature searches were conducted in PubMed, CINAHL, an applied understanding of the potential of assistive technology PsycINFO, and Embase databases. Common search terms were in dementia because it is not being integrated into mainstream used for dementia (“Dementia”[Mesh]) OR (dement* OR dementia care practice [20,21]. alzheimer* OR lewy OR CJD OR JCD OR creutzfeldt OR binswanger OR korsakoff OR frontotemporal OR FTD OR The need to address these issues has been widely acknowledged. “vascular dementia” OR VaD OR “pick disease” OR “picks For example, joint research efforts on assistive technologies in disease”) and technology ((assistiv* OR orthotic* OR supportiv* dementia were identified via a taskforce on Assistive OR electronic*) AND (technolog* OR device*)) OR telecare Technology setup within INTERDEM (an interdisciplinary OR “Self-Help Devices”[Mesh] OR (“information European research network of more than 160 members, communication technology” OR ICT), added with specific terms collaborating to develop and carry out pan-European research for the sections on usability ((usability AND (computer OR on early, timely, and quality psychosocial interventions in technology OR software OR virtual reality)) and ethics (ethic*). dementia [22]). Experts from this taskforce worked together to Inclusion criteria were reviews in English, reporting (partly) on discuss and reach consensus regarding the current state of affairs persons with dementia living in the community, and technologies regarding (assistive) technologies for community-dwelling in 1 or more of the 3 selected areas (daily living, meaningful people with dementia. This resulted in this position paper. and pleasurable activities, and health care technology). There Based on literature and expert opinions, key areas were was no restriction on publication dates, and the searches were considered including development issues, usability, effectiveness finalized in January 2016. and cost-effectiveness, deployment, and ethics of (assistive) All records from the searches were reviewed by at least two technologies for community-dwelling people with dementia. independent researchers in each section to check whether they The term “assistive technology” included a wide range of aids, should be included. Another researcher was involved to reach appliances, and whole-system applications; consequently, consensus in cases of disagreement. Reviews that met the discussions were focused on technologies that addressed the inclusion criteria were included, and the results of the reviews following 3 areas of global need: (or single studies in the reviews if relevant) were summarized. 1. Devices intended to help persons living with dementia to For the section on deployment, searches were conducted in manage their everyday life across the disease journey, such as specific Health Technology Assessment databases, using the electronic calendars and reminders for activities, medication search terms: assistive technology dementia. reminders, aids to perform activities of daily life, robots, and navigation systems. Results 2. Technologies to help people engage in meaningful and Development Issues Regarding Assistive Technologies pleasurable activities such as cognitive stimulation and physical for Daily Living, Meaningful and Pleasurable activities, as well as technologies to improve social participation, Activities, and Health Care Technology contact, and support. In the past, devices for older people were generally created by 3. Health care technologies that aim to support professional technologists with little attention to the specific needs of older organizations and systems within dementia health and social end users, and thus the users’ requirements of devices. care, such as behavior monitoring, shared decision making, and Nowadays, there is wider understanding of the importance of Global Positioning System (GPS) tracking systems. engaging end users at all stages of technology development to ensure their needs are addressed and to promote acceptance of We concluded with a set of recommendations for key technological aids. However, challenges in the development of stakeholders including the research community, technology technological devices were identified as follows: How can developers (industry and business), care commissioners, and technologies address the heterogeneous needs of persons with care providers to better prepare them to ensure the ongoing dementia? Should technologies be designed specifically for delivery of high-quality, efficient care and support to the dementia or adapted from mainstream technology? What growing numbers of persons living with dementia and their methods are more efficacious when developing technologies families. for persons living with dementia? Finally, we addressed what challenges are to be faced regarding developmental issues in Methods the 3 selected application areas of assistive technology. Literature reviews were performed by members of the taskforce Technologies to Address the Heterogeneous Needs of Assistive Technology, who met twice (Ljubljana, September Persons With Dementia 2015; Berlin, October 2015) to discuss the aim and methodology of this study and divide the work. Each subsequent section was To develop technologies that are useful and valuable for persons led by 2 taskforce members and prepared by a subgroup of the with dementia, it is important to know what kind of assistance taskforce Assistive Technology. is needed. This requires a thorough understanding of the different types of dementia and associated impairments, The section on technology development was based on expert individual experiences and coping mechanisms, and the opinion and relevant literature, among other previous reviews continuous changing situation during the dementia “journey.” of taskforce members [23,24]. For the sections on usability, http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 3 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al It is also important to be attentive to needs such as a sense of dementia are emerging [14,33,35-37]. However, people with self-esteem and feeling respected, which are related to higher more severe dementia are less often included in development levels of well-being and quality of life, as highlighted in of assistive technologies. Maslow’s “hierarchy of needs” [25,17]. People with dementia Challenges in the Development of Assistive Technology can express their needs [26] and preferences [27] consistently, Challenges in the development of assistive technology include even in an advanced stage of dementia [28]. Therefore, to really the need for personalized and tailored technologies in dementia. understand what it is to live with dementia and which needs A “one size fits all” is not an optimal solution because of the should be addressed, people with dementia should be asked individual variations in needs and abilities. The development about their needs and experiences and be involved early in the of sustainable assistive technology for persons with more severe process of development of supportive tools and interventions. dementia is a challenge, as is how to develop technologies in a Till now, very few technologies have actually been designed to way that will help to make the world a more “dementia-friendly” meet the specific needs of people living with dementia [29], place [38]. Examples of assistive technologies that can help and only few of these prototypes have been adopted for persons with dementia in their daily life are simple aids such commercial development. as calendars and reminders but also more complicated devices Technologies Designed Purposively for Dementia or such as robots that perform a social role or augment individual Adapted From Mainstream Technology human capabilities through cognitive prosthetics [39]. There are companies who anticipate providing inclusive assistive Technologies can be divided into those designed specifically technology solutions for older people, including those with for persons with dementia as opposed to technologies that have dementia, for example, Alcove [40]. One research challenge is been developed in the mainstream and lend themselves well to how to develop assistive technologies that address the emotional support people with cognitive difficulties. For example, the state of persons with dementia during everyday tasks [41]. One functionality of some forms of telecare technology, such as of the challenges in the field of health care technology, which GPS, webcams, and apps (Joint Improvement Team, 2016), is supports organizational and supportive systems of dementia being superseded by readily accessible off-the-shelf devices care, is to integrate technology into the built environment, such that can successfully assist people to navigate their day. Also, as lighting, floor coverings, and improved way-finding (eg, via recent work has confirmed that persons with dementia can be improved signage), taking into account the varying and changing supported to use touchscreen computing for leisure and needs of the residents [42,43]. Another challenge is to integrate recreation in line with the rest of society [29]. Nevertheless, the technology into the routine health care, using information and complex sensory, perceptual, and cognitive changes caused by communication technology (ICT) in the clinical assessment of dementia can make using mainstream devices problematic for cognitive, behavioral, and physical functioning of persons with some persons with dementia, and therefore for the foreseeable dementia [44]. future, some demand for bespoke devices will continue. Conclusion on State of Affairs Development of (Assistive) Methods of Technology Development in Dementia Technologies in Dementia In developing assistive technologies in health care, there has been a shift from expert- and technology-led design toward a Research has revealed that persons with dementia are user-driven approach, and it is more common to now involve enthusiastic about using assistive technology to remain end users. independent and also about taking part in technology design [23,33]. At the same time, some challenges remain, such as how Examples of methods that support end user involvement and to personalize and tailor technologies to the individual and aim for sustainable eHealth innovations are the holistic changing needs and abilities of persons with dementia. We approaches of the roadmap of the Centre for eHealth Research envisage that the involvement of end users in developing new and Disease Management (CeHRes) [30] and Contextual Design assistive technologies will continue to grow, and that more [31]. Both methods are rooted in human-centered design (HCD) applications of existing technology using mobile phones or apps and emphasize 3 interrelated components: technology, people, will be put to use to benefit persons with dementia. and organization (health care environment). The CeHRes roadmap focuses, in particular, on the health domain and Usability of Assistive and Health Technology in combines HCD principles with business modeling. Dementia For dementia, the drive to ensure engagement at all stages of The International Organization for Standardization defines technology development is underpinned by the principles of usability as “the extent to which a product can be used by person-centered care and, in a broader perspective, by a social specified users to achieve specified goals with effectiveness, inclusive society. This includes the coproduction of new efficiency and satisfaction in a specified context of use” [45]. innovations for research and for practice, with the involvement Thus, usability refers to the capability of the technology to be of end users from the outset [32,33]. In practice, however, understood, learned, and used under specified conditions. The people with dementia have rarely been involved in technology literature review on usability issues in dementia resulted in 89 development, with user acceptability tending to be assessed via papers (Figure 1). The main results are discussed in the family carers and others [11,24,34]. Successful examples of following sections. collaborative working with people with mild-to-moderate http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 4 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al Figure 1. Flowchart of systematic review on usability. were also some unforeseen problems, such as not fully Usability of Technologies to Support Persons With understanding how the device worked. The authors stressed the Dementia in Everyday Life importance of actively involving users in home modifications Little research so far has been conducted in the field of assistive with assistive technologies and providing medium- and technologies in community dementia care and support, with longer-term follow-up of the technological support [48]. only 3 studies exploring usability in supporting everyday life Usability of Technologies to Support Participation in with a Day Navigator [46], a GPS [47] and a timer device [48]. Meaningful and Pleasurable Activities In the study by Meiland et al, 42 participants and carers considered the Day Navigator to be mainly user-friendly, but In research on technology to participate in meaningful and conclusions about usefulness were limited due to insufficient pleasurable activities, for example, cognitive interventions for duration of the testing period [46]. The GPS system was tested persons with dementia, usability issues are often not mentioned. among 33 dyads, with only 1 leaving the study because of Jelcic et al [49] reported a positive perception of technical reasons. Participants with dementia who went outside technology-based cognitive therapy, as participants would unaccompanied took the GPS with them 67% of the time. Also, recommend it to others and were satisfied with the utility and 80% (20/25) of the caregivers said that the use of the technology appeal of this intervention. Zaccarelli et al [50] found that the was not difficult, and almost all of them felt that they were in educational level of users was important, as results of the studies control of the secured website where they could track and trace on people with Alzheimer’s disease, mild cognitive impairment their relatives (92%; 23/25). The study does not provide specific and healthy adults showed that participants with a higher information about usability outcomes apart from ease and education level found it easier to learn how to use the ICT frequency of use and the fact that the participants with dementia platform. Lee et al [51] reported that the usability of their did not seem to mind that they heard a voice from their GPS computer-based cognitive intervention was good. Persons with without notification [47]. The timer device was used for a stove dementia were highly motivated in using it, and their sense of and tested with 9 older adults with cognitive impairment or achievement was enhanced; they took pride in showing others dementia and 5 relatives. The authors found that end users that they could operate the computer [51]. Gillespie et al [52] scarcely participated in the process of choosing and adapting suggested that large-scale studies of assistive technology to the device. Although the device provided increased safety, there improve cognition should also focus on functional areas, for http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 5 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al example, prompting, navigating, and reminding, rather than on terms of cognitive and motor demands, there can also be the specific content of the devices itself. problems with touchscreens in terms of accuracy that may be frustrating for the end user [64]. Computer literacy has an Factors Influencing Usability important role in usability: lack of computer experience was Over time, persons with dementia may have reduced ability for reported to decrease the odds of successful use of technology new learning, which may impact actual use of technology [65]. Thus, pretest, treatment, or intervention training sessions because learning and technology use are inseparable and proceed could be used to enable persons with mild cognitive impairments together [53]. Understanding how persons with dementia access and early dementia to become familiar with novel technologies and embrace technology is vital in order to develop usable and [66-69]. The need for including performance tests to enhance acceptable technological solutions. Technology use by older the ecological validity of assistive technologies has been adults has been criticized for not eliciting and including their highlighted, such as measuring the user’s motivation [54]. interests [54]. Devices should be adjusted to each individual, Although there is a prejudice that assistive technologies are not achieving better tailored interventions, and assistive technologies “elderly friendly,” in fact the evidence points in the opposite should be embedded in a person-centred model [55]. A good direction: when older adults get the opportunity to use example of this is the provision of feedback sessions to ensure computers, they regard them as a “status symbol” often that the person with dementia and carer understand the assistive associated with youth; as a consequence, the use of computers technologies, to answer questions, and to collaboratively discuss could have a positive effect on self-confidence and self-esteem recommendations for improvement [56]. A recent review (not [70]. limited to dementia) on mHealth applications suggested the Regarding the assessment of the usability of assistive adoption of automated evaluation mechanisms to improve the technologies and user satisfaction, various tools were used, for empirical methods to assess usability [57]. example, the usefulness, satisfaction and ease of use Furthermore, a good match between the person and the questionnaire [71]; the Everyday Technology Use Questionnaire technology is required because if this is not achieved well from [72]; the Quebec User Evaluation of Satisfaction with Assistive the end user’s perspective, the technology may be ignored or Technology [51]; and the model of technology acceptance, not be used optimally [58]. Bardram et al [59] emphasized the specifically developed to test the acceptance of assistive social importance of deploying assistive technologies in a real-world agents by older adults [73]. There is a lack of tools to evaluate setting, outside the laboratory, and also the need to perform the usability of assistive technologies in persons with severe longitudinal studies that assess the evolution of the relationship dementia. between the end user and the technology [59]. A person’s To conclude, despite advances in the field of technology-based acceptance of assistive technologies can vary during the course interventions for persons living with dementia, few applications of dementia. For example, acceptance can improve when have been analyzed for their usability. Technologies can be used symptoms start to threaten the independence of the person [60]. by many persons with dementia, but additional support is often The ability to use assistive technology may also vary. Over needed from informal caregivers or professionals. To promote time, a decreasing use of technology is seen in people with better utilization of technologies in dementia care, a better cognitive impairment [61]. understanding is needed of their usability for persons with It has been suggested that usability studies of assistive dementia, people’s preferences for specific interfaces, and their technologies should be designed in several stages: acceptance of different technologies. predeployment (observation sessions, focus groups with people Effectiveness and Cost-Effectiveness of Assistive and with dementia, carers, and professionals); deployment (carrying Health Care Technologies in Dementia out long-term observations and quantitative and qualitative assessments in real settings); and postdeployment (feedback The flowchart in Figure 2 illustrates the literature retrieved on sessions) in close partnership with end users, carers, and effectiveness and cost-effectiveness of assistive and health care specialists [62]. technologies. Eighteen reviews met our inclusion criteria, most of which (n=10) described a combination of the 3 technology Usability in the Area of Computer Technologies domains we focused on in this study. One review focused on In the area of computer technologies, usability of interfaces has technologies to support persons with dementia in everyday life, received special attention. Research on the preferences of 3 on technologies for engagement in pleasant and meaningful persons with dementia has indicated that touchscreen devices activities, and 4 on health care technology to support are preferred over mouse or keyboard input devices [63]. Direct organizational and supportive systems. From the selected response devices using a touchscreen reduce the distance reviews, 55 individual studies described the effects of between the subject (seeing the stimuli) and the causal effect technologies on persons with dementia, the results of which are (providing the answer), which enhances the person´s described in the following sections. None of the empirical involvement in the task. The previous experience of people with studies described the cost-effectiveness of assistive and health dementia with computers affects which type of interface device care technologies for community-dwelling persons with they prefer, with experienced users preferring the mouse. dementia. However, although the mouse is the most demanding device in http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 6 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al Figure 2. Flowchart of systematic review on effectiveness and cost-effectiveness. Assistive Technologies to Support People With Dementia Assistive Technologies to Support Persons With in Meaningful and Pleasurable Activities Dementia in Everyday Life Within the domain of technologies for meaningful or pleasurable Within this domain, many devices have been tested for their activities, computer programs with cognitive training effectiveness. For example, a calendar was positively evaluated applications showed improvements in task performance or by more than half of the 21 participants [74]; a training device cognition in persons with Alzheimer’s dementia [70,91], recall (based on errorless learning) to guide people with dementia in [92], global cognitive functioning, and emotion [93,94]. using a mobile phone was reportedly effective [75]; prompting However, devices with prompts for creative activities were devices to support in activities of daily life or in memory were found to be not effective [95,96], although participants liked found useful [76,77] and effective [76-80]; and prompts were the activities with an ePAD (Engaging Platform for Art found effective for traveling [81-84]. However, another Development) [95]. Social robot therapy for stimulating prompting device found no impact on quality of life [85], which interaction showed an improvement in brain activity in half of might have resulted from the many technological problems the 14 participants [97]. Research into the use of multimedia encountered during the effect pilot study. The NeuroPage [86] tools to support people with dementia has reported was tested in a randomized controlled trial (RCT) and showed improvements in well-being [98,99], mood [100], psychological a significant reduction in memory and planning failures by stability [101], and social interaction and engagement providing prompts; however, this study included patients with [100,102-107]. In another study, a music tool was enjoyed by brain injury, and only a small number had dementia. Although its users, but the prompts proved difficult to understand for the tracking devices are said to be effective [87,88], 1 study showed person with dementia [96]. Telephones or videophones have that only a minority used such devices successfully, and 1 patient been reported as being easy to use for persons with dementia was injured by a passing vehicle [89]. Two studies also and helpful for maintaining social contacts, and they positively identified positive effects of tracking devices for caregivers affected self-esteem [108-110]. (relief or reduction of emotional distress) [87,90]. Health Care Technologies Health care technologies to facilitate health care delivery for people with dementia included sensors to monitor behavior, http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 7 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al virtual reality, and video conferences. Sensors and smart home Deployment Factors: Stakeholders in General technologies are said to provide a good image of performed Stakeholders need trusted and high-quality information from activities [111] and were reportedly successful in preventing HTAs or HSTAs. However, reviewing the current situation of major incidents [48,112,113]. Reported effectiveness of these HTA or HSTA delivers disappointing results in that these data, tools in helping persons with dementia to live longer in the mainly provided by national bodies, are often incomplete, with community varied [114,115]. One large controlled study [15] many variations in definitions, information provided, and quality concluded that smart home technologies helped persons with and reliability of the data [121]. dementia by improving confidence, ability to maintain The users of these data include health care providers, health community living for a longer time, and reducing need for care service researchers, policy makers, funders, consumers, and visits. A single case study found a reduction in required support, information professionals (eg, in United States [122]; United perceived anxiety, and confusion by the person with dementia Kingdom [123]; Germany [124]). Solely searching the HTA [116]. Comparison of the use of video conferences for, for databases that provide English literature with the search term example, clinical assessment showed no differences compared “assistive technology dementia” reveals few results (ie, United with face-to-face assessments [117-119]. Clinical improvements States: 14 books; United Kingdom: 3 items). Two of them were found for almost half of the study sample that received provide facilitators and barriers (expanded upon later) to the telecare, which consisted of telemedicine, tele-education, and deployment of technology: Jimison et al [125] and Finkelstein telecounseling services [120], and this kind of telecare could et al [126]. One is a systematic review on the effectiveness of be promising for rural populations [119]. assistive technology which does identify some of the barriers Conclusion of Effectiveness and Cost-Effectiveness that are also mentioned in Jimison et al [125] and Finkelstein Assistive and Health Technology in Dementia et al [126], and the other is a bibliographic record of an ongoing health technology assessment being undertaken [127]. One To summarize, various benefits of assistive technologies for result was a Cochrane protocol focusing on the efficacy of persons with dementia have been reported. However, the results assistive technology for memory support in dementia [128]. described need to be interpreted with caution because the The other results were either not related to dementia or were majority of the included studies were uncontrolled studies with not focusing on assistive technology. relatively small sample sizes. Reviews on cost-effectiveness studies of assistive and health care technologies in dementia Deployment Factors: Health Care Professionals were not found. A range of constraints limiting deployment and related to the Deployment of Assistive and Health Technology technology and health care sectors were identified at a workshop (2014) involving Ambient Assistive Living (AAL) and Joint Results regarding deployment were based on (1) Programme for Neurodegenerative Diseases (JPND) recommendations for deployment of health technology identified stakeholders; 25% of the projects funded by AAL and JPND by an expert panel and (2) a literature search using databases are about developing ICT-based solutions for support and care regarding health technology assessments (HTAs) and health of older adults with cognitive impairments [129]. These services or technology assessments (HSTAs). These databases constraints came from a range of sectors including health and were chosen because they are specifically designed to give social care and business, covering aspects such as open evidence-based recommendations and are directed at a standards, finance and business models, skills, and simply nonscientific audience, for example, stakeholders who want to knowing what is available and where there are gaps in the deploy health technology. The search resulted in 17 papers, of market. which 5 were relevant for the issues under consideration. When assistive technology is used to enable support and care Deployment Issues processes, barriers include the following: lack of usability; According to the Ambient Assisted Living Association (AALA) problems with access to the health IT application, low computer [121], “the market is growing beyond its traditional boundaries literacy in patients and clinicians, insufficient basic formal and this is attracting a growing interest by potential investors, training in health IT applications; physicians’ concerns about the ICT industry and all service and care providers.” The more work; workflow issues; problems related to new system landscape of the market will be deeply modified by a deployment, including concerns about confidentiality of patient combination of a demand pull (by the rapidly growing information; depersonalization; incompatibility with current population of older persons) and a technology push (through health care practices; lack of standardization; and problems with development of new ICT solutions and services) ([121], p. 76). reimbursement [121]. Facilitators for the utilization of health A key recommendation of the AALA was to develop a European IT included ease of use, perceived usefulness, efficiency of use, observatory with the mission to become the main source of availability of support, comfort in use, and site location [126]. trusted and high-quality information and data on the market to inform all stakeholders. Deployment Factors: Persons Living With Dementia Barriers for deployment of assistive technologies for the end The next 3 paragraphs consider factors that influence user, which might also apply to a wider audience than dementia, deployment related to demand pull of stakeholders in general, include the following: usability problems, unreliable technology, health care professionals, and persons living with dementia. the lack of consumers’ perceived benefit from using the system, inconvenience, data entry being cumbersome, and the http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 8 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al intervention not fitting into the user’s daily routine. Deployment Ethical Considerations appeared to be more successful if the intervention could be The analyses of the literature search regarding ethical delivered by technology that consumers already use daily for considerations resulted in 33 references in which ethical issues other purposes, and that satisfactorily meet their needs [125]. were discussed linked to the use of assistive technology by or for persons with dementia living at home (see flowchart in In conclusion, to promote successful deployment of assistive Figure 3). The documents reviewed all covered at least one of and health technologies in dementia care, it is essential that the the 3 assistive technology domains in the following numbers: technologies are reliable, user friendly, and useful; and that technologies to support people in managing everyday life (13), there is a single centrally funded access point to high-quality to support in pleasurable and meaningful activities (1), health information regarding assistive technology products relating to care technologies (1), and a combination of domains 1 and 2 dementia for all stakeholders. The Assistive Technology (5), domains 1 and 3 (1), and all 3 domains (12). There was Dementia website [130] provides such a platform but is reliant variation in the terminology used to cover ethical issues in on short-term funding (donations and grants), which means that relationship to assistive technology and in the coverage and the optimization of information and sustainability are compromised. depth of consideration of such issues. Table 1 shows 7 categories Furthermore, education and training in the field of technologies of ethical issues resulting from the analysis and the reference in dementia care should be available for all stakeholders. numbers of the articles or studies in which they were addressed. Figure 3. Flow chart of systematic review on ethics. http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 9 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al Table 1. Ethical issues addressed in the articles reviewed. Category of ethical issue Additional topics included Articles or studies that addressed these ethical issues Autonomy, freedom // pater- Informed consent, independence, the Cash [131]; Kang et al [132]; Landau et al [133]; Landau et al [134]; Landau nalism, disempowerment right to take risks, individuality, self-es- et al [135]; Landau and Werner [136]; Lindqvist et al [137]; Mahoney et al teem and identity versus the use of re- [138]; Mao et al [139]; Martin and Cunningham [140]; McCabe and Innes straint and coercive measures, over-pro- [141]; McKinstry and Sheikh [142]; Mehrabian et al [143]; Miskelly [88]; tection Olsson et al [144]; Pino et al [145]; Plastow [146]; Pot et al [47]; Rauhala and Topo [12]; Robinson et al [14]; Robinson et al [147]; Robinson et al [148]; Siotia and Simpson [149]; Sorell and Draper [150]; Van Berlo [151]; Welsh et al [152]; Werner and Landau [134]; White and Montgomery [153]; Zwijsen et al [154] Dignity, personhood // stigma, Devaluation Hughes et al [155]; Kang et al [132]; Landau et al [135]; Landau and discrimination Werner [136]; Mahoney et al [138]; Mao et al [139]; Marshall [156]; Mc- Cabe and Innes [141]; Plastow [146]; Robinson et al [14]; Robinson et al [147]; Robinson et al [148]; Sorell and Draper [150]; Werner and Landau [157]; White and Montgomery [153]; Zwijsen et al [154] Social inclusion // replace- Simulated presence, staffing issues, and Cash [131]; Kang et al [132]; Landau [133]; Landau et al [135]; Mahoney ment or loss of human contact deception et al [138]; Marshall [156]; Martin and Cunningham [140]; Pino et al [145]; Plastow [146]; Robinson et al [147]; Siotia and Simpson [149]; Van Berlo [151]; Welsh et al [152]; Werner and Landau [157]; Zwijsen et al [154] Privacy and data security Confidentiality Frisardi and Imbimbo [158]; Kearns and Fozard [159]; Landau et al [133]; Landau et al [134]; Landau et al [135]; Landau and Werner [136]; Mahoney et al [138]; McCabe and Innes [141]; McKinstry and Sheikh [142]; Mehrabian et al [143]; Rauhala and Topo [12]; Sorell and Draper [150]; White and Montgomery [153]; Zwijsen et al [154] Overreliance on technology, Landau et al [135]; Mao et al [139]; Marshall [156]; Martin and Cunningham new risks, false security [140] Beneficence // nonmalefi- Wellbeing, minimizing distress and harm Cash [131]; Hughes et al [155]) Kang et al [132]; Landau et al [133]; Landau cence (not only for people with dementia), for et al [135]; Landau and Werner [136]; Lindqvist et al [137]; Mahoney et al whose benefit the AT is used [138]; Marshall [156]; McCabe and Innes [141]; Mehrabian et al [143]; Pino et al [145]; Pot et al [47]; Robinson et al [147]; Robinson et al [148]; Siotia and Simpson [149]; Sorell and Draper [150] Equity or justice Issues related to the individual and soci- Cash [131]; Mahoney et al [138]; Martin and Cunningham [140]; Mehrabian ety (including costs) et al [143]; Rauhala and Topo [12]; Siotia and Simpson [149]; Van Berlo [151]; Welsh et al [152]; Werner and Landau [157]; Zwijsen et al [154] A wide range of ethical issues were addressed but with a focus Issues were frequently described in terms of ethical dilemmas primarily on 3 of the 4 biomedical ethical principles (respect of which 2 are notable. The first is about privacy and respect for autonomy, beneficence, and nonmaleficence) as well as on for autonomy versus safety and minimizing risks. The more issues associated with care ethics and human rights (eg, social safety a person with dementia wishes to have, the more it may inclusion, human contact, personhood, dignity, and be necessary for them (or others on their behalf) to accept some discrimination). Most researchers addressed a comprehensive loss of privacy or autonomy and with various possible negative range of ethical issues in the introduction to their article (ie, to consequences (eg, safety at the expense of reduced quality of contextualize their study or argument), but some gave much life, some risk but possibility to delay entry into residential care, less attention to them when reporting their findings. deterioration of carer’s quality of life or health). The second ethical dilemma is about obtaining informed consent from Several researchers (eg, Hughes et al [155]; Landau et al persons with dementia due to possible difficulties understanding [133,135]; and Pino et al [145]) demonstrated a nuanced complex technology and loss of awareness over time of the understanding of various ethical issues associated with the use presence or purpose of assistive technology, or that data is being of assistive technologies specifically for or by persons with collected on them. dementia. This involved, for example, reflection on opposing concepts and concerns, such as social inclusion versus loss of Discussion human contact, or respect for autonomy versus concerns about safety (touching on coercion and paternalism). Some authors Principal Findings (McCabe and Innes [141]; Robinson et al [14]) emphasized that The aim of our study was to describe the state of the art ethical issues are related to the way assistive technologies are regarding development issues, usability, effectiveness and used rather than inherent in particular devices or systems (eg, cost-effectiveness, deployment, and ethics of (assistive) a device is not inherently stigmatizing; tracking devices may, technologies for community-dwelling persons with dementia, depending on the situation and the individual, be experienced and based on that, to recommend a roadmap for development, as either promoting or reducing freedom and autonomy). research, and practice to support and promote the use of assistive http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 10 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al technology, thus preparing society for the growing number of Deployment: Many barriers were identified ranging from a lack people with dementia. of knowledge about technology solutions, lack of usability and training, low computer literacy to incompatibility with current A literature review was performed in the fields of usability, health care practices and reimbursement issues. Future projects effectiveness and cost-effectiveness, and ethics. Most reviews should therefore focus more on the deployment of assistive were found in the field of usability, with the majority of these technology, and appropriate business plans and scenarios need papers evaluating technologies to support daily living. In the to be developed for bringing these technologies to the market. field of effectiveness and cost-effectiveness, most reviews Looking to the future of the implementation of assistive described a combination of the 3 technology domains we technology in general, Peterson et al [161] concluded that future focused on in this study, and in the field of ethics, topics were assistive technologies would be more integrated into the addressed that were less related to the domain of technology, environment, combined with ambient and intelligent but rather to the way technology was used and the consequences technologies, the potential of cloud computing, and the Internet for the user regarding, for example, autonomy and dignity. of Things (a global network of physical objects that contain Based on the results of the literature reviews and expert embedded technology to communicate and sense or interact opinions, the following can be concluded about the state of the with their internal states or the external environment). Assistive art of assistive technology for persons with dementia: technologies will also become more personalized to individual needs and user requirements. These developments, however, Development issues: Research has revealed that people with will bring new challenges (see below). dementia are enthusiastic about using assistive technology to remain independent and also about taking part in technology Ethical issues: Many ethical issues were addressed by authors design [23,33]. It is envisaged that the involvement of end users in the introduction of their papers, but less were described in in the development of new assistive technologies will continue the description of the results. With regard to assistive to grow, and that more applications of existing technology, technologies in dementia, several authors stressed that ethical using, for example, mobile phones and apps, will be put to use issues were not in the first place related to the technologies to benefit persons with dementia. We also anticipate that more themselves but rather to how people use them. Ethical issues companies will show an interest in this market, thus promoting that were often described in this field are the dilemmas between the daily use of assistive technologies in dementia care. However autonomy and risk versus privacy reduction and increased safety there are also challenges such as how to personalize and tailor and difficulties obtaining informed consent when persons with technologies to the individual needs and abilities of the person dementia do not understand or are not aware of the presence of with dementia, how to address the emotional state of persons the technology. with dementia during everyday tasks [41], and how to integrate The Identified Challenges technology into the built environment and routine health care. We identified several challenges for research into the selected Usability issues: Little research so far has been conducted in research topics in the next few years. community dementia care and support, with only a few studies Challenges in the development of assistive technology include exploring the usability of assistive technology in supporting how to develop these technologies in a way that meets individual everyday life [37,47,48]. The results showed that people with variations in needs and abilities of persons with dementia, so dementia were able to use the technology, but that additional that they really help to maintain autonomy, provide meaningful support by informal caregivers or professionals was often activities, and promote social inclusion. Another challenge is needed. Furthermore, research showed that successful use of how to develop assistive technologies that address the emotional technology was related to computer literacy [65], and level of state of persons with dementia during everyday tasks [41]. A education of the users [50]. In the field of meaningful and challenge in the field of health care technology supporting pleasurable technology-based interventions, such as cognitive organizational systems and services in dementia care is to interventions for people with dementia, usability is generally integrate the technology into the built environment, such as not mentioned. However, a recent review showed promising lighting, floor coverings, and improved way-finding [42,43], findings for these activities using touchscreen technologies and into the routine health care, for example, by using ICT in [160]. More research on usability in all areas of assistive the clinical assessment of cognitive, behavioral, and physical technology is needed. functioning of persons with dementia [44]. Effectiveness and cost-effectiveness: Various benefits of A challenge regarding usability lies in identifying those assistive technologies for people with dementia have been applications that have particular relevance for people living reported, such as cognitive and social functioning, mood and with dementia. A reiterated theme out of each of the literature well-being, and reduction in service use. However, these reviews is the essential requirement to involve those with a findings need to be interpreted with caution because the majority diagnosis of dementia in identifying which needs technologies of the included studies were uncontrolled, with half of them should meet, and in the development and usability testing of having included less than 10 persons with dementia. Most of technology that is intended for people with dementia. the controlled studies included between 10 and 30 participants, and there were only 2 RCTs (1 with 46 and 1 with 143 A challenge in effectiveness and cost-effectiveness research is participants of which less than 8% were people with dementia). to conduct methodologically sound scientific research in this No studies were found on the cost-effectiveness of assistive field comparing assistive technology with care as usual. To technologies or health technology interventions. http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 11 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al conduct RCTs with large enough samples may be difficult important topic for researchers to include in their evaluation of because the assistive technologies may be expensive or it may assistive technologies. be invasive to have them implemented in one’s home, for Limitations example, with sensors and cameras installed. Another challenge The interpretation of assistive technologies used for the evidence is to select adequate outcome measures that reflect the results reviews embraced bespoke devices developed to support persons of assistive technology interaction [161]. A third challenge is living with dementia to manage their everyday life and rooted in the fact that technology is an ever-moving target [20]. participate in meaningful and enjoyable activities and health Everyday devices are continually developing with newer care technology. However, these reviews can only provide a technologies coming to market, rendering evaluation of any one retrospective snapshot of what has been researched rather than device obsolete within a short time frame. There is a clear need reflecting the current picture and what the future might hold. for new methods of rapid technology appraisal and evaluation Also, the literature reviews were limited to (systematic) reviews to inform deployment [162]. rather than single studies because we aimed to get a global Regarding deployment, the challenge lies in overcoming the overview of the state of art. Furthermore, we did not consult barriers that will be faced as a result of the expected further persons living with dementia regarding their experiences and integration of technologies within the built environment. These priorities. are challenges concerning, for example, data storage, system Recommendations integrity, privacy and security, networked architecture, and service provision. Furthermore, having a good source of trusted Our work underscored the challenge of determining the current and high-quality information on assistive and health care “state of the art” in technology development and deployment technologies to inform relevant stakeholders who may further given the dynamic definitions and various understandings of implement them will be another challenge. what assistive technologies are. This complexity is magnified when assistive technologies are situated within dementia. As for ethical issues, a challenge will be obtaining informed Nevertheless, based on the current literature, we recommend consent of participants with dementia for research on assistive the following actions for development, usability, effectiveness technologies. This may have to do with difficulties in and cost-effectiveness research, deployment, and ethics of understanding what the technologies encompass and a lack of assistive and health technologies across Europe and suggest awareness over time of the presence and use of technology, or that they are included in national and international calls for with data that are collected on people with dementia. Another funding and assistive technology research programs in the challenge is to ensure that ethical issues are considered an coming decade (Textboxes 1-4). Textbox 1. Actions to improve the development and usability of assistive technologies. Persons with mild-to-moderate dementia or their supporters must be involved in all projects that aim to develop or test technologies for their ultimate benefit; this must be a prerequisite for project funding. Researchers involved in such technology development for persons with dementia must have adequate knowledge of dementia and, if not, receive specific training and support to enable full and meaningful engagement with persons with dementia; this should also be a prerequisite for funding. Steps must be taken to ensure that unnecessary replication of technology development that is proven unhelpful or ineffective does not occur. Textbox 2. Actions regarding research into the effectiveness of assistive technologies. Research into the effectiveness of assistive technologies should move beyond explorative studies and include more and larger RCTs. The focus should be on how technological services succeed in addressing individual needs of persons with dementia, as the population is heterogeneous and many face comorbid conditions. Many different outcome measures are used in effect studies, making it difficult to synthesize the results of individual studies. Consensus on the use of outcome measures in this field is recommended [163]. Also, other designs such as randomized block designs with sufficient power can be considered to study these effects. Research is needed on the cost-effectiveness of assistive technologies. New methods of technology evaluation are required so that the results can be rapidly obtained and translated into practice, such as logging use and electronic ecological momentary assessments. Textbox 3. Actions regarding the deployment of assistive technologies. Persons living with dementia and those involved in providing treatment and support need clear information about what already exists, for whom, and in what situations (eg, via the websites of national Alzheimer associations). They also need examples of how everyday devices can be used effectively by persons with dementia to enable appropriate deployment. The benefits of new forms of technologies for persons with dementia have to be considered before they are brought on the market or disseminated; examples include robots for care and companionship and ubiquitous computing in the home and in society. http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 12 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al Textbox 4. Actions regarding ethics in using assistive technologies. Our review has demonstrated 3 important issues of relevance to researchers in this domain that ask for the following action: There should be greater consistency among researchers regarding the terms used to describe ethical issues. This will facilitate the comparison of findings and recommendations. Guidelines on ethical issues related to assistive technology use by or for people with dementia are available [164,165]. However, they are not widely applied in research exploring the role of assistive technology for community-dwelling persons with dementia. Researchers working in this area are advised to review and engage with these guidelines that provide a structured approach to addressing ethical dilemmas in the context of dementia care [165] rather than simply highlighting such ethical dilemmas. This should ensure that not only the conduct of the research complies with ethical principles but that the future use of devices also promotes ethical practice. Researchers should strive to ensure that emerging reflection and findings on the ethical use of assistive technologies reach the general public, persons with dementia, informal carers, and health care professionals, and that for this wider dissemination, terms and explanations are understandable and meaningful to these targeted groups. technology is expected to improve with the increase in computer Conclusions literacy and level of education, which will be the case in future Although this study shows that further research into the generations of older people. 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Ethical dilemmas faced by carers and people with dementia URL: http://www.alzheimer-europe.org/Publications/Alzheimer-Europe-Reports [accessed 2016-12-28] [WebCite Cache ID 6n7AIGmAe] Abbreviations AALA: Ambient Assisted Living Association CeHRes: Centre for eHealth Research and Disease Management GPS: Global Positioning System HCD: human-centered design HSTA: health services or technology assessment HTA: health technology assessment ICT: information and communication technology RCT: randomized controlled trial Edited by G Eysenbach; submitted 20.07.16; peer-reviewed by R Davies, M Pino; comments to author 25.08.16; revised version received 16.10.16; accepted 24.10.16; published 16.01.17 Please cite as: Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal JA, Gove D, Thyrian JR, Evans S, Dröes RM, Kelly F, Kurz A, Casey D, Szcześniak D, Dening T, Craven MP, Span M, Felzmann H, Tsolaki M, Franco-Martin M Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics JMIR Rehabil Assist Technol 2017;4(1):e1 URL: http://rehab.jmir.org/2017/1/e1/ doi: 10.2196/rehab.6376 PMID: 28582262 ©Franka Meiland, Anthea Innes, Gail Mountain, Louise Robinson, Henriëtte van der Roest, J Antonio García-Casal, Dianne Gove, Jochen René Thyrian, Shirley Evans, Rose-Marie Dröes, Fiona Kelly, Alexander Kurz, Dympna Casey, Dorota Szcześniak, Tom Dening, Michael P Craven, Marijke Span, Heike Felzmann, Magda Tsolaki, Manuel Franco-Martin. Originally published http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 20 (page number not for citation purposes) XSL FO RenderX JMIR REHABILITATION AND ASSISTIVE TECHNOLOGIES Meiland et al in JMIR Rehabilitation and Assistive Technology (http://rehab.jmir.org), 16.01.2017. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Rehabilitation and Assistive Technology, is properly cited. The complete bibliographic information, a link to the original publication on http://rehab.jmir.org/, as well as this copyright and license information must be included. http://rehab.jmir.org/2017/1/e1/ JMIR Rehabil Assist Technol 2017 | vol. 4 | iss. 1 | e1 | p. 21 (page number not for citation purposes) XSL FO RenderX
JMIR Rehabilitation and Assistive Technologies – JMIR Publications
Published: Jan 16, 2017
Keywords: dementia; technology; evaluation studies; diffusion of innovation; ethics
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