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Computing Technologies For Reflective, Creative Care of People with Dementia


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Credit: Brian Greenberg / Andrij Borys Associates

Dementia is a condition related to aging, with symptoms ranging from memory loss to decreased reasoning and communication skills.8 The number of people with dementia was estimated in 2010 at 35 million worldwide, a figure expected to double by 2030.23 People with dementia in economies where attaining great age is increasingly the norm are cared for in residential homes by professional (though not highly paid) carers, typically women, often mothers and housewives, under pressure to balance care and administrative duties.12 Their work is often viewed as having low social status, contributing to high staff turnover and high numbers of inexperienced carers.24 Improving the quality of care in such an environment is a pressing concern.19

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Key Insights

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In residential homes, digital technology could potentially improve the quality of care, reduce paperwork, and raise the social standing of care work. However, many care homes in the U.K. have at most one or two desktop computers for managing both their finances and their residents' records. Wireless networks are uncommon, and residents themselves only rarely have access to email or social media. Indeed, technology sometimes has been perceived as putting undo pressure on carers.17 Moreover, managers often lack the skills needed to introduce and advocate for digital technology,17 although the situation is changing as Internet access and mobile computing become commonplace. Recent initiatives (such as the U.K.'s Get Connected program, http://www.scie.org.uk/workforce/getconnected/index.asp) have further increased the technological readiness of homes. For the first time, a foundation for the use of digital technology in dementia care in residential homes is available.

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Person-Centered Care

Digital technology has the potential to support the care sector's move to more person-centered care, or an individualized approach recognizing the uniqueness of each resident, seeking to understand the world from the resident's perspective and providing a social environment that supports the psychological needs of each resident.4 The sector recognizes digital technology has the potential to provide the right information about the right resident at the right time, as well as deliver more cost-effective training to new carers.

Digital technology helps people with dementia maintain a sense of self; for example, in 2007, Hanson et al.9 reported positive results with a digital support service for people with early dementia as long as core usability problems could be resolved. In 2012, Wallace et al.21 reported the use of digital devices designed as furniture to provide notions of home, intimacy, and possessions to support a sense of personhood. While evidence suggests the technology yields improved communication between carer and resident, it is designed primarily as support for carers delivering the required person-centered care.

Electronic care systems give carers direct access to resident data, though do not necessarily guarantee carers understand the world from an individual resident's point of view. Indeed, a carer can learn something new about a resident by observing highly personal resident behavior, reflecting on it and looking for possible explanations.18 Carers must often reevaluate the care experience, attend to feelings about it, then generate new perspectives in order to adjust the care to be given. Such behavior is consistent with established general models of reflective learning.3 Although digital technology can support such event-driven reflective learning, little research has been done, at least until recently.

Since 2010, the European Union-funded Mirror Integrated Project13 has investigated new forms of digital technology to enable reflective learning about residents (http://www.mirror-project.eu). Here, we report how it aims to bridge the gap between the increasing volume of available digital data about individual residents and the learning carers need to deliver more person-centered care.

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Care Homes

The successful uptake of digital technology in residential homes is a challenge; for example, in 2012, Muller et al.14 reported that parachuting existing technologies into residential homes is unlikely to be effective. New designs must instead be framed in thoughtful socio-technical themes (such as sociality and trust). To discover the themes relevant to dementia care in residential homes, we observed and interviewed carers, then led co-design activities at pilot homes.


The tablet-based Digital Life History app supports collaborative explorations of past life events by carers and residents, as well as subsequent learning about residents by carers through reflections on that collaboration.


The observations and interviews revealed most dementia care is mobile and physical. Carers traditionally use paper documents to record access information about residents. Indeed, these documents are often used as workarounds to obstacles posed by existing digital technology; for example, carers often supplement their observations with written notes on information sheets located next to desktop computers they would use to enter more detailed notes into the electronic care systems later on. However, the resulting delays recording care notes, exacerbated by queuing with other carers to use the computers, can lead to poor recorded data quality in the homes we studied.

Therefore, as part of the co-design activity, we facilitated carers in one pilot home to role-play care activities with various mobile objects. Outcomes revealed mobile computing has the potential to improve several important aspects of care:

Support. Provide more effective support for carers than for residents whose interactions with mobile devices are often limited by physical and cognitive impairment;

Information source. Deliver a single source of information about residents, as carers often struggle to retrieve and communicate information about residents from disparate paper sources;

Distance. Reduce the distance between personalized care and information, as care work is still generally event-driven and frequently interrupted, and carers often need to update resident information at unpredictable times;

Memory. Reduce memory load on carers, as they often rely on memorized information to deliver individual care, while mobile solutions can reduce the amount of information about residents and care tasks they need to remember;

Collaboration. Coordinate collaborative work through shared external representations; social interactions alone are insufficient, while external representations on mobile technology have the potential to enhance coordination of care; and

Information volume. Reducing the amount of information to be memorized during care could free up the cognitive resources needed for reflective learning, while more immediate access to resident data can trigger and enable this reflection.

As part of the Mirror project, we investigated new mobile digital technology for supporting person-centered care and reflective learning about people with dementia. These solutions are available to carers through the dementia App Sphere (http://www.mirror-project.eu/showroom-a-publications/mirror-apps-status), a collection of interoperable mobile apps supporting dementia care and reflective learning in residential homes (see Figure 1).

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Mobile Solutions

Some of the apps communicate with a digital life history repository that makes all available data on each resident accessible to carers through mobile devices. The history contains data about a resident's past, as well as data (such as about social contact with carers) recorded and captured directly from the other apps in the App Sphere. A separate bespoke Web application enables relatives to upload information about residents' histories from a range of devices, differentiating the Digital Life History app from its equivalents (such as Digital Life Story from http://mylifesoftware.com, as described in Webster et al.22).

During care work, a carer can use two apps on personal mobile devices carried around during a shift. Earlier pilot studies found that, in spite of management concerns, carers were willing to carry and interact with mobile iPod Touch devices to capture and share observations about residents.11 The first app developed for this purpose (in 2010) was an adapted version of the micro-blogging Yammer app client that provides a single source of information on each resident's behavior, health status, and well being, helping reduce a carer's memory load while enabling more personalized care through reflective learning; it interoperates with a second app called Carer. Carers encountering challenging behavior can invoke it to help provide resolution through creative, reflective thinking. Use of the Carer app in two residential homes is covered in more detail later.

During team meetings, carers can use other apps to support reflection on resident reminiscing,6 behavior, and care given; for example, they can reflect on observed behavior through the portable Digital Life History app, the digital equivalent of physical scrapbooks, including photographs and written notes (see Figure 2). While immersing digital content in familiar artifacts (such as televisions,21 shoeboxes, and time-card devices2) have been shown to improve interaction with residents, they do not explicitly support the kind of reflective learning needed by carers to personalize care to individual residents. The tablet-based Digital Life History app supports collaborative explorations of past life events by carers and residents, as well as subsequent learning about residents by carers through reflections on that collaboration.

Carers can use a second app to reflect on their own care patterns based on data from proximity sensors that capture interactions between themselves and residents, as in, say, exploring motivations for unusually long contact sessions with a resident. Using sensors to provide information about dementia care is not new,5 but our residential care sensor design, inspired by the SocioMetric Badge,16 is smaller and consumes less power, allowing routine use. Embedded in the wristwatch worn by residents and carers in Figure 2, it broadcasts a unique ID over a 1.5m radius to capture close carer contact with residents.

Carers can also use a third app we developed called Talk Reflection (described later in more detail) to learn through reflection about distressing conversations that can undermine a carer's emotional state.

Less-experienced carers can train on a desktop-based 3D app called Think Better Care to resolve and reflect on dementia-care scenarios in a virtual and hence safe environment. During a typical session, carers receive tutorial guidance from a virtual learning companion called Maria to help reflect on the strengths, weaknesses, and effectiveness of the care given individual residents. The design of the companion is based on Lev Semyonovich Vygotsky's social learning theory.20

To address ethical constraints on resident data use, the App Sphere enables privacy through anonymity and encryption of important resident information. In some apps (such as Yammer and Carer), identifiers (such as resident room numbers) known only to carers in a residential home are used to document information about individual residents. In others (such as proximity sensors), the source of resident data is not recorded. Effective reflective learning on individual residents necessitates the recording and sharing of resident information; the residential homes that participated in the co-design of App Sphere emphasized information recording and use over privacy of resident information.

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Carer App

Carers regularly encounter challenging behavior from residents, including refusal to eat and take medications, even physical and verbal aggression, which, for carers, is difficult to diagnose and resolve. No two residents are alike, and resolution effective for one is often not effective for another. The resulting need for person-centered care often means an effective resolution is new to both residents and their carers. Carers must exhibit creative, reflective thinking to generate new resolutions. We therefore developed an iOS app called Carer (http://www.mirror-project.eu/showroom-a-publications/mirror-apps-status/86-carer) to support creative thinking based on studies of the effectiveness of such techniques with carers25 and reflective learning based on new approaches to care.

Carers are able to retrieve resolutions of cases involving challenging behavior in dementia care, as well as in analogical domains (such as policing, schooling, and parenting), automatically retrieving the previous cases from a server-side XML database using one of two services in response to natural language entries typed and/or spoken by carers into the app. One supports case-based reasoning with similar cases based on information-retrieval techniques like those applied to people with a chronic disease.10 The other supports analogical reasoning with cases from different domains based on a computational model of analogical matching.7 A third supports the "other worlds" technique, providing less-constrained domains in which to generate ideas, and more generally for resolving the challenging behavior.1 And a fourth service automatically generates creativity prompts from retrieved case content, letting carers record new ideas resulting from creative thinking in audio form, then reflect on them by playing them back, generating further ideas, composing them into a care plan, and sharing the plan with other carers (see Figure 3).

We evaluated the Carer app in two different unconnected U.K. residential homes we called A and B. We gave carers in each an iPod Touch running the Carer app and Yammer, including seven carers in home A who had them for 28 consecutive days and eight carers in home B for 42 consecutive days. We provided personal Carer training, as well as the creativity techniques it supports. We collected evaluation data from two main sources: a data log implemented in the Carer app that automatically records the date and time each app feature on each device is used, and a focus group with carers in each home at the end of the evaluation period, with audio recorded, transcribed, and analyzed through predefined themes.

All seven carers in home A carried their devices throughout their shifts, using Carer to generate plans for new care enhancements. Each used an average of six to 23 separate app features (such as retrieve past cases and request new creativity prompts) over a seven-day period. Most used two app services: case-based reasoning with previous cases of good practice in dementia care and creativity prompts automatically generated from them to create 10 separate new care enhancement plans for their residents. They used at least one of these 10 plans to increase the quality of life of one resident by reducing the resident's violent outbursts during medical treatment based on the novel idea of having two carers present to provide reassurance. We viewed this as a successful outcome of the initial 28-day trial.

Our analysis of app log data found over 70% of app feature use occurred outside shifts. The focus group found most carers had only the time needed to create and reflect on new care ideas outside their shifts. App use in shifts was also reduced due to a short-lived technical network problem that disproportionately affected carer confidence, as the carers incorrectly took responsibility for app errors when the network was unavailable.

Although the carers did not use the Carer app every day, the frequency of app use should be understood in the context of home A, which did not specialize in dementia care but did care for existing residents who developed dementia. As a consequence, challenging dementia-based behavior was occasional and not well understood by carers, and the app's guidance led them to resolve unfamiliar challenging behaviors in new ways in the absence of a prescriptive care strategy. Even so, we found obstacles to such creative, reflective thinking. The home's workflow thus had to be redesigned to allow more in-shift time for creativity and reflection, as well as more systematic support outside carer shifts, and carers needed more effective training in creativity techniques and in the mobile technologies being used.

Meanwhile, home B was an acknowledged quality provider specializing in dementia care. Seven of its eight carers carried their devices throughout their shifts, using the Yammer app, but stopped using the Carer app after just nine days of the trial. A reason we identified during the focus group was the app's support for creative thinking to generate new knowledge about residents did not align with the home's strategy of providing specialist dementia care at different stages of the condition based on carers' in-depth knowledge of the characteristics and needs of individual residents.18 Not only did the app fail to stratify its support along the stages of dementia it did not provide knowledge about individual residents. As a consequence, the carers rejected the app due to lack of perceived benefit, a decision reinforced by a principled stance following the personalization theme pursued at the home. In hindsight, rolling out the Digital Life History app and exchanging data with carers might have yielded greater app acceptance.

Home B's rejection of the Carer app underscored the need for app support for creativity and reflective learning to align with a home's dementia-care strategy, and was not an obstacle to app use in home A. Successful app use also appeared to require more flexible care working practices and training in new techniques and technologies.

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Talk Reflection App

The tablet-based Talk Reflection app helps carers share and reflect on strategies for holding difficult conversations with residents and for managing their emotional responses to them. It can be used in different work settings to allow carers to document, share, and give feedback on conversations during a shift, after work, or in meetings, online or off. The app is connected to a central repository of sharable documented conversations that can be user-commented with notes and outcomes from prior reflection sessions to facilitate sharing. Conversation assessments are presented in several visual forms (such as the spider graph in Figure 4) to enable quick browsing. Moreover, the app offers simple creativity techniques to carers for discovering new ways of managing difficult conversations. Each documented conversation can also be linked to the relevant resident in the digital life history so other carers are made aware of prior difficult conversations associated with that resident.


Care homes not only support residents with and without dementia differently, different and inconsistent care strategies are implemented across homes.


We also tested the Talk Reflection app in another U.K. residential home where the manager and five carers used two iPads for 33 days. Data included log files from app use, pre- and post-questionnaires, and feedback given in a workshop. All six used Talk Reflection on 62 separate occasions to document difficult conversations and situations, view a total of 99 documents, create 19 new ones, and comment on existing ones on 20 occasions, though only five such comments were made on documents previously written by another carer. As documentation of difficult conversations and use of tablet technology were new to the carers, we viewed this amount of app use a success. However, it also triggered reflection by carers, though only three reflective outcomes were documented. The workshop found carers usually communicated and discussed the comments verbally during their shifts, as it was quicker and more immediately beneficial. The obvious downside was insufficient numbers of comments of difficult conversations documented in outcomes in the Talk Reflection app.

Carers reported using the Talk Reflection app improved their own well being and handling of difficult situations; one example involved a conversation with relatives requesting a particular resident go to a hospital, contrary to the view of the carers. The deterioration of the resident's condition in the hospital led them to reflect and agree to changes in similar future conversations.

However, the carers also reported technical and organizational obstacles to app use during their shifts; for example, a wireless network was not available in all resident rooms due to the home's concrete walls. The home's manager restricted the times available for app use so it would not intrude on other care duties, even though the carers explicitly asked for more time to use it to discuss difficult conversations. Some residents' relatives even complained about app use; use of such technologies in residential homes is rare, and the relatives erroneously assumed the carers were playing rather than working.

These obstacles again made clear the need to adapt care workflows, this time to mandate the recording of and reflection on difficult conversations and provide sufficient resources both during and outside shifts. As in home A, they highlighted the need to align the app with a home's prevailing care strategy to motivate app use as an integral aspect of care. Care-home managers also need to do more to gain approval for app use. Simple changes being considered include a poster campaign to inform residents of the roles of new technologies and use of white tablet covers with blue crosses to indicate they are exclusively intended for care work.

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Conclusion

Our development of new types of mobile apps as part of the Mirror program to support reflective, creative thinking needed by carers delivering person-centered care to older people with dementia contrasts with historical use of digital technologies retrieving information for carers and triggering reminiscing by residents. While prior evaluations revealed the potential of such apps, appreciating it necessitates addressing significant obstacles, mainly the need to align app use with the range of care strategies in residential homes. Homes not only support residents with and without dementia differently, different and inconsistent care strategies are implemented across homes; for example, person-centered care that rejects the disease model (such as explored in Stokes18) differs from support for best-practice care themes (such as a positive culture, as in My Home Life Movement15). Rolling out even a single app must be sensitive to these differences, and new technologies must be mixed and adapted to different care models. While the App Sphere provides a baseline for mixing technologies, our next step is to configure them for different care models as a starting point for more effective uptake.

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Acknowledgment

This research is supported by the European Union-funded Mirror Integrated Project grant 257617, 2010-1.

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References

1. Allan, D., Kingdon, M., Murrin, K., and Rudkin D. Sticky Wisdom. Capstone Publishing Company Limited, Chichester, U.K., 2002.

2. Banks, R., Kirk, D., and Sellen A. A design perspective on three technology heirlooms. Human-Computer Interaction 27, 12 (2012), 6391.

3. Boud, D., Keogh, R., and Walker, D. Promoting reflection in learning: A model. In Reflection: Turning Experience Into Learning, D. Boud, R. Keogh, and D. Walker, Eds. Kogan Page, London, 1985, 1840.

4. Brooker, D. Person-centred Dementia Care: Making Services Better, Bradford Dementia Group Good Practice Guides. Jessica Kingsley Publishers, London and Philadelphia, 2007.

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6. Damianakis, T., Crete-Nishihata, M., Smith, K.L., Baecker, R.M., and Marziali, E. The psychosocial impacts of multimedia biographies on persons with cognitive impairments. The Gerontologist 50, 1 (Feb. 2009), 2335.

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20. Vygotsky, L.S. Mind in Society: The Development of Higher Psychological Processes. Harvard University Press, Cambridge, MA, 1978.

21. Wallace, J., Thieme, A., Schofield, G., and Oliver, P. Enabling self, intimacy, and a sense of home in dementia: An enquiry into design in a hospital setting. In Proceedings of the ACM SIGCHI Conference on Human Factors in Computing Systems (Austin, TX, May 510). ACM Press, New York, 2012, 26292638.

22. Webster, G., Fels, D.I., Gowans, G., and Hanson, V.L. Portrait of individuals with dementia: Views of care managers. In Proceedings of the 25th British Computer Society Conference on Human-Computer Interaction (Newcastle, U.K., July 48). British Computer Society, Swindon, U.K., 2011, 331340.

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25. Zachos, K., Maiden, N.A.M., Pitts, K., Jones, S., Turner, I., Rose, M., Pudney, K., and MacManus, J. A software app to support creativity in dementia care. In Proceedings of the Ninth ACM Creativity and Cognition Conference (Sydney, June 1720). ACM Press, New York, 2013, 124131.

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Authors

Neil Maiden (N.A.M.Maiden@city.ac.uk) is a professor of systems engineering and co-founder of the Centre for Creativity in Professional Practice at City University London.

Sonali D'Souza (sonali.dsouza5@gmail.com) is a principal information architect/UX designer at the British Council, London.

Sara Jones (s.v.jones@city.ac.uk) is a senior lecturer in the School of Informatics and co-founder of the Centre for Creativity in Professional Practice at City University London.

Lars Müller (lmueller@fzi.de) is a researcher at the FZI Research Center for Information Technology in Karlsruhe, Germany.

Lucia Pannese (lucia.pannese@i-maginary.it) is managing director of Imaginary Società a Responsabilità Limitata, an Italian enterprise specializing in serious games, virtual worlds, and interactive digital technologies.

Kristine Pitts (Kristine.Pitts.1@city.ac.uk) is a research fellow in the Centre for Creativity in Professional Practice at City University London.

Michael Prilla (michael.prilla@rub.de) is a senior researcher in computer-supported cooperative work and human-computer interaction in the Information and Technology Management work group of the Institute for Work Science at the Ruhr University of Bochum, Germany.

Kevin Pudney (kevin.pudney@ntlworld.com) is a social science researcher and former head of IT of the Nottinghamshire Social Services Department.

Malcolm Rose (mal@clara.net) is an economist and former director of regeneration and head of policy in District and County Councils, Nottinghamshire, U.K.

Ian Turner (ian.turner@virgin.net) is chairman of the U.K.'s Registered Nursing Home Association.

Konstantinos Zachos (kzachos@soi.city.ac.uk) is a research fellow in the Centre for Creativity in Professional Practice at City University London.

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Figures

F1Figure 1. Architecture of the Mirror dementia App Sphere.

F2Figure 2. Apps (left to right): Digital Life History, proximity sensor for capturing care data, and Think Better Care.

F3Figure 3. Features of the Carer app for recording challenging behavior, browsing retrieved cases, viewing creativity prompts, and generating care-plan enhancements.

F4Figure 4. Features of the Talk Reflection app, including carer self-assessment of emotions during talks and documented conversations.

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