Johan E. Bengtsson

A user driven approach to develop a cognitive prosthetic to address the unmet needs of people with mild dementia

This paper aims to provide the details of the approach adopted in the development of a cognitive prosthetic aimed to help address the unmet needs of people with mild dementia. The approach adopted is based on a waterfall style approach consisting of a series of three phases each of which contributes to the progression and improvement of a cognitive prosthetic-based solution. Within each phase, distinct stages of design, development and evaluation of the cognitive solution are conducted. The current paper discusses the distinct stages conducted in the first phase of the project which resulted in the design and development of a user driven solution based on the needs of 17 patient/carer dyads across three trial sites.

Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

Background The doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers. Objective The objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers. Methods For 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence. Results STAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence. Conclusions The STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy.

Usability of a new electronic assistive device for community-dwelling persons with mild dementia

Objective: To evaluate a newly developed integrated digital prosthetic, the COGKNOW Day Navigator (CDN), to support persons with mild dementia in their daily lives, with memory, social contacts, daily activities and safety. Methods: A user participatory method was applied in the development process, which consisted of three iterative 1-year cycles with field tests in Amsterdam, Belfast and Luleå. In the successive cycles 16, 14 and 12 persons with dementia and their carers participated. Data on usability were collected by means of interviews, observations, questionnaires, logging and diaries. The CDN prototype consists of a touch screen, a mobile device, sensors and actuators. Results: The evaluation showed that persons with dementia and carers valued the CDN overall as user-friendly and useful. Conclusions regarding the effectiveness of the system in daily life were limited due to insufficient duration of the testing period caused by delays in development and some instability of the final prototype. Conclusion: With the suggested adaptations, the CDN is expected to be a useful tool for supporting community-dwelling persons with mild dementia and their carers.

Home based assistive technologies for people with mild dementia

Those suffering from mild dementia exhibit impairments of memory, thought and reasoning. It has been recognised that deployment of technological solutions to address such impairments may have a major positive impact on the quality of life and can be used to help perform daily life activities hence maintaining a level of independence. In this paper we present an overview of our current investigations into how technology can be used to improve the quality of life of the ageing person with mild dementia. Specifically, we detail the methodology adopted for our work, outline results attained from a series of workshops to identify user needs and finally present how these user needs have been mapped onto the design of home based assistive technologies.

Building digital life stories for memory support

The number of persons suffering from dementia is increasing, and there is significant human and economic value to gain by enabling them to keep living independently in their homes. The top priority unmet need is for memory support. This paper introduces context-awareness and life-logging in a system using reminiscence therapy methods, embodied as an ICT memory aid for recording past, current and future activities, which can later be recalled. The tool may help build or maintain episodic memories and self-image, although evidence in this area is lacking. It is designed to also give direct and instrumental support in other priority needs areas. A prototype design is described for a system that is by necessity extremely easy to use, with a touch screen computer in the home and mobile devices for data capture and cognitive support. The main life-log entities associated with the logged activities are places, persons, personal items, and recorded media. Privacy, trust and dignity are key ethical issues.

Designing & evaluating a cognitive prosthetic for people with mild dementia

Motivation -- Develop a portable, mobile information and communication device with specific applications that meet the identified needs of people with mild dementia. Research approach -- A qualitative study with a user centred design was applied: Three iterative development cycles of one year each were performed, in which around 15 persons with mild dementia and their carers participated in each cycle of development to attune the functions and form of the cognitive prosthetic to their needs and wishes. A mixed methods approach of qualitative interviews and standardised tools were used for the evaluations that were performed by formulating research questions and assigning appropriate methods for data collection before, during and after the field tests at the end of each development cycle. Findings/Design -- The COGKNOW Day Navigator consists of a touch screen, a mobile device, sensors, a home hub and a central server. Several features such as colours and icons, can be adjusted to personal preferences, which was much appreciated by users. The functions to support people in their daily activities were overall appreciated, though there were individual differences in preferences and abilities to use them. Research limitations/Implications - It was recommended to perform an impact study within the target group for a longer period of time when the system is considered stable and to make use of a randomised controlled design in a larger study population. Originality/Value -- The research built upon previous evidence of needs of people with mild dementia and the findings are valuable in directing further research and innovation. However, it was found that this technology can be complex to implement in a manner that ensures good quality of service delivery during field tests. Take away message -- The work has shown the value of designing an analysis framework for development of assistive technology that gives a strong voice to people with dementia and their carers.

Creating digital life stories through activity recognition with image filtering

This paper presents two algorithms that enables the MemoryLane system to support persons with mild dementia through creation of digital life stories. The MemoryLane system consists of a Logging Kit that captures context and image data, and a Review Client that recognizes activities and enables review of the captured data. The image filtering algorithm is based on image characteristics such as brightness, blurriness and similarity, and is a central component of the Logging Kit. The activity recognition algorithm is based on the captured contextual data together with concepts of persons and places. The initial results indicate that the MemoryLane system is technically feasible and that activity-based creation of digital life stories for persons with mild dementia is possible.

The development of personalised cognitive prosthetics

Persons suffering from mild dementia can benefit from a form of cognitive prosthetic which can be used to assist them with their day to day activities. Within our current work we are aiming to develop a successful user-validated cognitive prosthetic for persons with mild dementia. We have devised a three phased waterfall methodology to support our developments. Based on the evaluation of the first of these phases which involved the processes of user requirements gathering, prototype development and evaluation of in situ deployment of the technology we have been able to guide the technical development within the second phase of our work. Within this paper we provide an overview of the first phase of our methodology and demonstrate how we have used the results from this to guide the second phase of our work, especially with regards to the notion of personalisation.

Assistive Technologies and Issues Relating to Privacy, Ethics and Security

Emerging technologies provide the opportunity to develop innovative sustainable service models, capable of supporting adults with dementia at home. Devices range from simple stand-alone components that can generate a responsive alarm call to complex interoperable systems that even can be remotely controlled. From these complex systems the paradigm of the ubiquitous or ambient smart home has emerged, integrating technology, environmental design and traditional care provision. The service context is often complex, involving a variety of stakeholders and a range of interested agencies. Against this backdrop, as anecdotal evidence and government policies spawn further innovation it is critical that due consideration is given to the potential ethical ramifications at an individual, organisational and societal level. Well-grounded ethical thinking and proactive ethical responses to this innovation are required. Explicit policy and practice should therefore emerge which engenders confidence in existing supported living option schemes for adults with dementia and informs further innovation.

Towards sustainable business models from healthcare technology research

As demographic ageing impacts across the world, health and welfare organisations are seeking new paradigms of care that address peoples needs as well as being inherently more scalable than the incumbent processes and services. The aim of this paper is to describe the current situation in Europe with information on service provision, before signposting some possible new ways to develop sustainable business models that support care models. The paper uses a case study approach to examine the issues in the introduction of such business models, from a perspective of the translation of research proof of concepts into business services and from the perspective of developing innovations from research that address unmet or poorly considered needs of user. The paper shows how several innovative European projects are anticipating the need for service change and are designing their research outcomes to match the needs of service commissioners more fully. The conclusion discusses several different approaches before drawing together strands of the work and providing tentative recommendations on the way forward to develop new inclusive technology-enhanced services in health and social care.