In our study, different stakeholders, including people with dementia, their relatives, healthcare professionals, scientists, and IT specialists, discussed ideas of DAT; the needs, benefits as well as the hurdles for implementation of DAT in healthcare practice and support of people with dementia. We focused on DAT in general as well as on DAT to support outdoor mobility of people with dementia. Participants discussed values and preferences affected by the use of DAT, structural hurdles for implementing DAT, and requirements for DAT supporting people with dementia.
Ethical implications
Both discussion groups, the World Café and the online focus group, emphasized the importance of autonomy for people with dementia and the usefulness of DAT to maintain autonomy. Participants reported conflicts between privacy and safety. A systematic review showed that people are willing to trade privacy for autonomy [37]. Our participants recommended a situation-aware assistance to promote users’ abilities when needed. This would also reduce the negative impact of safety on privacy. A systematic review [38] and a qualitative study [9] emphasized the importance of privacy for people with dementia. Unobtrusive sensors, such as GPS or fall sensors, may enable both promoting safety and saving privacy if they only transmit data in case of need to pre-selected persons. In addition, privacy is also a question of protection of personal and medical data. In particular, sensor data could facilitate the establishment of a long-term, location-independent data recording system that extends beyond the confines of scheduled medical appointments [39]. Therefore, we agree with the call of Schicktanz and Schweda [39] for developing practicable data protection concepts that also ensure the privacy of personal, relational, and topological data. The development of these concepts may require a rethinking of aspects of privacy [30].
With respect to autonomy, participants of the World Café (table 2) raised the question of who should be able to turn off the DAT if a person with dementia refuses it. A previous study showed that people with dementia prioritized the value of autonomy, whereas relatives focused on safety [23]. However, relatives mentioned ‘surveillance’ as crucial, but it was not found in the quotes of people with dementia. In line with this, the scoping review of Sundgren, Stolt, and Suhonen [40] reported that relatives would prefer to coerce people with dementia to use an AT in favor of safety. Our participants from all discussion groups emphasized the importance of autonomy for people with dementia which is in contrast with the findings of Kowe et al. [23] and Sundren et al. [40]. Our participants from the World Café raised this question in regard to decision-making capacity and self-determination. Self-determination is a civil right in the United Nations Charter, Article 1 and 55 [41] and the International Covenant on Civil and Political Rights, Article 1 [42] of the United Nations. Both Alzheimer Europe and Kim et al. have synthesized ethical decision-making approaches to AT use, for example from the Nuffield Council on Bioethics, Bjørneby et al., and the American Speech-Language-Hearing Association flowchart [32, 43]. These approaches focus on a joint discussion of ethical dilemmas with each person effected by the use of AT. However, decision-making capacity is context- and situation-specific and fluctuates with the cognitive abilities of people with dementia. It is impaired at the latest stages of the disease [44]. Therefore, in cases of advanced dementia, decision-making capacity can become fluid and tied to specific situations [44]. For example, in case of disorientation, people with dementia experience anxiety and confusion [45] that may affect their ability to make decisions. Given the fluctuating decision-making capacity and disease progression, advance care planning is recommended [44, 46] even in regard to the use of DAT [47]. Advance care planning could also be applied to the use of DAT and help answering the question when to and who can turn off a DAT, also in moments of fear or confusion. However, advance planning assumes people know about the functionality of DAT and their own future situation [48]. Therefore, care advisors should be trained in specification and functionality of DATs to support decision-making and planning the use of DAT. Additionally, it remains unclear whether people would reject a need-oriented, situation-aware DAT if it is unobtrusive and activates only in the situation of need.
Again focusing on autonomy, our participants were critical of the use of technological door locking systems, as these were seen as methods of physical restraint. According to the German Civil Code (BGB), the use of physical restraints requires sufficient justification and a legal decision by the guardianship court [49].
Another discussion point focused on the concept of using gamification and providing incentives (for a definition of gamification and incentives see Text Box 2) or nudging to influence people’s decision making in using DAT. Incentives are benefits that are independent from the care process, such as promising patients to get their favourite food or sweets [50]. Elements of gamification are e.g., high score lists, social competition, unlockable content, and quests or goals [51]. Following the systematic review on gamification for older adults [51], gamification helps improving health related wellbeing, social interaction, motivation, and engagement. In line with this, a systematic review and meta-analysis [52] found that the use of incentives enhanced the adherence of people with dementia or MCI to exercise interventions. Both gamification and incentives might be useful to increase motivation and adherence in people with dementia and dementia care. Nudging is used in healthcare for instance to improve healthy behaviour (e.g. nutrition scores on food). According to Cohen, nudging in healthcare is a form of libertarian paternalism which facilitates an informed consent, preserving patient’s autonomy [53]. As DATs often are complex and their functions difficult to understand, it remains unclear if informed consent can be obtained from people with dementia and their relatives [54]. In contrast to Cohen, our participants feared manipulation and violation of autonomy and free choice of people with dementia through incentives or nudging. These concerns are understandable as marketing interests, personal hardships, or organizational shortcomings of a care facility may lead to the deployment of such a technology without considering the need and well-being of the person with dementia [55]. Nudging and incentives influence decision-making in subtle ways [50, 55], which could help to increase acceptance of DAT by people with advanced dementia. But, the effectiveness of nudging for people with dementia who may have impaired abilities in decision-making remains doubtful [50]. In conclusion, the challenge of incentives or nudging to encourage the use of DAT lies in preserving free choice and avoiding manipulation. Regarding the use of DAT, nudging and incentives could be seen as soft aid in decision-making if default points have been clarified: Who decides which DAT is best for people with dementia? How can we ensure that the decision to use nudging is made in the patient’s best interest and not for personal or economic reasons? Which incentives are effective and desirable for people with dementia? These questions should be addressed in future studies.
|
Text Box 2: Definition of Gamification and Incentive |
|
The Oxford dictionary defines gamification as “the use of elements of game-playing in another activity, usually in order to make that activity more interesting” [56]. |
|
An incentive is a reward, an additional benefit which is independent of the primary caring goal e.g., a massage or a pleasing reaction of the DAT (purring, flashing, applause) [50, 57]. |
Design requirements and image change
As a result of the World Café discussion, we found that participants were undecided about how the DAT should be designed. In order to make the discussion about DATs more concrete and tangible, we focused on outdoor mobility advices for the online discussion. Here, participants seemed to prefer DATs integrated in familiar and portable devices such as a smartwatch for supporting outdoor mobility. Non-wearable devices like robots should only be applied in institutional care to avoid stigmatization. Our participants stated that a gender specific adaptation of the voice of the DAT to the different users would be helpful. This is in agreement with a previous interview study with 20 participants, ten caregiving relatives, and ten healthcare professionals where a socially assistive robot was tested [58]. Our participants highlighted the need for adapting the DAT to the demands of different target groups (people with dementia, family caregiver, or nurse). Also Wu et al. [58] described different needs of nurses and family caregivers regarding DAT. According to Wu and colleagues [58], family caregivers focused more on social aspects of the robot such as accompaniment whereas healthcare professionals emphasized assistive aspects to relief them from workload. Additionally, our participants from all discussion groups discussed different hardware devices for a DAT. While the World Café participants discussed DAT, such as robots, fall detection mats, intercoms, and belts, the focus group participants focused mainly on wearables, such as smartphones or smartwatches. This need for flexibility and variability of features and design underlines the findings of previous studies arguing for highly customizable, personalized DATs to increase the uptake of DATs in healthcare [11, 58, 59]. As a result of our study, we suggest a modular system of different supporting and monitoring opportunities which can be selected in accordance to the user’s needs. This system should run on different devices and be compatible with the usual operating systems such as Android or IOS.
Our participants felt that the image of assisting or supporting devices should change in the future. Currently, from their perspective, assisting devices indicate the need for help. This result stands in line with a systematic review [60] focusing on acceptability and usability of technology in people with cognitive impairment. The authors identified fear of stigmatization as a reason for people with cognitive impairment to not use assistive technology [60]. The authors suggested devices which reflect the user’s identity [60]. In contrast, our participants preferred a mainstream market approach to an individualistic one. They wished that the image of DAT should change so that they are seen more as a life-style-product than as help for the helpless. This suggestion might be comparable to the use of prescription glasses. Some years ago, prescription glasses were unstylish, pragmatically designed visual aids which transformed to fashion accessories even for people without visual impairment. DAT has the potential to be a medical aid with life-style-product character if design, healthcare, and technology experts design DAT collaboratively and integrate future users.
Structural hurdles for DATs’ implementation
The panels identified hurdles to implementing DAT in healthcare practice due to restrictive laws and lack of funding or technological infrastructure. A position paper on assistive technology policy also stated rigid legislative requirements can hamper innovations and investigations due to time and cost intensive processes. [61]. Astell and colleagues [16] raised questions of funding since common devices (e.g., smartphones) miss the classification as medical device and reimbursement by the public healthcare system. In Europe, in particular in Germany, strict regulations of the national German and European Medical Device Law [62] and General Data Protection Regulations [63] are relevant for DAT systems in healthcare. Medical device law aims to protect users from harm, but it also leads to high cost for certification [64]. In addition, companies need to provide detailed information about their technology and go through a time-consuming process which could be a barrier to certification, especially for start-ups. For more details on the certification process see Text Box 3. Our participants reflected this double role of legislation and regulatory requirements both as protection and hurdle for technology use which agrees with the results of Mac Lachlan and colleagues [61]. It was beyond the scope of the panels to discuss concrete changes in legislation or novel technologies that would meet regulatory requirements at affordable costs.
|
Text Box 3: Additional information on the medical device certification process |
|
In the European Economic Area, a medical device must be CE certified by the DQS med institute in order to be placed on the market [64]. Therefore, the DQS med institute requires a comprehensive application form with a detailed description on the technical documentation, the intended proposal, the risk classification, and the quality management system of the medical device [64]. Once the application has passed the initial review process, the DQS med will provide a cost estimate. Costs vary depending on, for example, the size of the company, the number of unannounced or announced audits or travel activities, with hourly rates for certification staff ranging from €300 to €600 per hour [64]. The certification process can take up to five years [64]. After successful certification, annual unannounced audits take place to ensure the quality of the medical device [64]. |
Participants identified the fact that the financing system for long-term care neglects investments in digitalization as a major hurdle. In nursing homes, investment costs that exceed the state subsidy are covered by contributions of the residents [65]. In Germany, the contribution amounts to 2,610 Euros on average [66]. On average, old-age pensioners receive 1,168 Euros [67] which is insufficient to cover the contribution in nursing homes. Therefore, nursing home managers may try to keep investment costs low at the expense of digitalization. As a result, even long standing technologies such as intercoms are missing in nursing homes, although participants identified them as very useful. A qualitative study from Sweden, focusing on digital healthcare communication revealed an improvement of care due to digital communication [68]. The participants recommended a mix of physical and digital communication to realize sufficient interaction with the patient [68].
Our participants regretted that the robotic seal PARO was not used in their nursing home. PARO’s fur is only antibacterial, but cannot be machine washed [36, 69]. As a result, the robot seal does not meet German hygiene standards for nursing homes [70]. Reviews found significant positive effects of PARO use on quality of life, affect, and social interaction [71, 72]. No studies from Germany could be found which supports the participant’s statement that PARO cannot be used in German nursing homes. This dilemma between possible benefits of PARO versus the potential risk of infection, highlights the value and need to involve users in the development of technologies to design marketable products.
In rural areas, the technological infrastructure is insufficient to support the use of web-based DATs. Our findings agree with the position papers from the first global research, innovation, and education on assistive technology (GREAT) on assistive technology policy and assistive technology products which identified rural areas as problem areas for access to DAT [18, 61]. Consistently, the position paper promotes different digital solutions not only for different users, but also for geographical locations [18]. In our view, a digitalization initiative by politicians, municipalities, future users, computer engineers, and healthcare managers is needed to bring healthcare up to the state of the art and provide patient-centered healthcare. In line with this, strengthening the digital competency of healthcare professionals and family caregivers should be taken into account from managers and politicians as well as the expansion of the technological infrastructure. Furthermore, interoperability between different systems and devices should be ensured in favor of devices’ compatibility and ease of use.
Dementia-friendly communities instead of DAT
Besides DATs’ support, our participants saw wayfinding of people with dementia as general task for the society. They suggested that society as a whole (e.g., the baker) should be aware of disoriented people and be a contact person in case of need for help. Social responsibility, social inclusion and participation, remaining in one’s own living environment, sufficient technological infrastructure, and easy access to public transportation are conditions of dementia-friendly communities [73]. Dementia-friendly communities enable people with dementia to remain in their living environment by integrating, supporting, and promoting them [73]. In dementia-friendly communities, people with dementia, their families, organizations, and politicians cooperate to make the community aware of the social and occupational needs and rights of people with dementia by providing education, guidelines, and common activities [73]. However, in the literature of shaping dementia-friendly communities DATs play no or only a negative part [10, 73,74,75,76]. For instance, Shannon, Bail, and Neville [75] argue that online-based service applications such as self-checkout systems in libraries can confuse older people and prevent them from participating. For our participants, there seemed to be only one either-or perspective regarding the use of DAT as a navigational aid. In general, they were in favor of social interaction and dementia-friendly architecture and against the use of DAT. Our study revealed that the participants did not consider the possibility of combining both dimensions of support, technological and personal. However, combing physical and technological support might be useful as several reviews showed the benefit of DAT for people with dementia and their relatives [16, 77]. One illustrative example was provided by a participant with dementia from the online focus group. He proposed the use of Wi-Fi hotspots as an indicator of the life space zone. A DAT could assist the users by informing them when they leave a zone. In the event of disorientation, the DAT could provide a navigation aid with augmented reality, such as the live view in the Google Maps app. During navigation through the smartphone display, preset, well-known landmarks could be highlighted to assist the users in regaining their orientation. Dementia-friendly architecture and technical infrastructure could provide the hotspots as well as prominent landmarks. Therefore, we strongly recommend the integration of DAT as beneficial contributor to dementia-friendly communities.
Strengths and limitations
A strength of our study lies in the multi-perspective view on ethical considerations and requirements for DAT for people with dementia. As people with dementia are often overlooked as stakeholders in AT [61], we provided a framework for discussion in which people with dementia and their relatives could participate on an equal footing and without stigma.
Another strength of our study is the transparent and participatory feedback process. By immediately taking notes of what was said, either on the paper tablecloth or on a digital whiteboard, we ensured congruence between what was said and what was documented. We sent the transcripts to the participants so they had the opportunity to comment. We received feedback from one participant. In the future, we will encourage our participants more intensively and collect feedback more actively, for example by telephone.
The results may be limited because the concept of mobility was very narrowly defined by our World Café participants (mobility as ability to walk independently). We have learned that for broad topics, the terms should be defined at the beginning and the moderator should more actively direct the discussion to other aspects, e.g. outdoor mobility. Although the World Café mainly covered the walking ability and indoor mobility, the results are transferable to other applications as well e.g., regarding the design of DAT and concrete use cases. To minimize this limitation, we discussed outdoor mobility separately in the online focus group as it is also an important aspect of mobility.
Participants discussed hurdles and problems regarding the implementation of DAT, but did not suggest opportunities and solutions. Typical limitations of focus group discussions arise due to insufficient speaking time per participant [35]. Focus groups can give an overview about relevant themes, but lack an in-depth or micro discussion [35]. The identified hurdles may be discussed in workshops to reveal solutions. Some discussed points, for example, political hurdles, focused on national law, are only applicable to the European Union.
In qualitative research, the moderator plays a central role in engaging interviewees to share their perspectives and feelings [35, 78]. It is inevitable that the moderator will influence the interview by bringing his or her character, skills, knowledge, and expectations into the moderation [78]. As we needed two moderators for the World Café discussion, moderator effects may have occurred [35]. In order to minimize this bias, both moderators discussed about difficulties and good practices in moderating a group discussion prior to the event.
Our results may also be limited by the time allowed for discussion. Our discussion took 30 to 40 min, but the participants could have gone beyond that. Following Patton [35], we recommend an extension to at least 60 min since this can lead to a deeper discussion and increase the space for follow-up questions. The time extension should be adapted to the concentration capacity of people with dementia.
Another limitation was the low recruitment rate. Unfortunately, three potential participants of the World Café discussion fell ill with COVID-19 at short notice, so we were unable to recruit additional participants. We also had to keep the number of participants low in order to reduce the risk of COVID-19 infection during the pandemic. Nevertheless, our number of participants is in line with Patton’s [35] recommendations regarding focus group discussions. Patton [35] recommends six to ten participants per group. In addition, other studies involving stakeholders and people with dementia have reported similar numbers of participants [79, 80]. Qualitative research does not claim to be representative. The added value of qualitative research lies in uncovering opinions, understanding processes and contexts, and in comparing and discussing different points of view [35]. Our study was able to achieve these aims despite the small number of participants.
Add Comment