Supporting People with Dementia Using Pervasive Health Technologies

In this chapter, an introduction is provided into pervasive healthcare technology, specifically as the use of information and communications technology in support of European policies, primarily inclusion. The focus of the chapter, and indeed the book, is on how such technologies can support people suffering from debilitating diseases including Alzheimer’s. The work describes a research project called COGKNOW, comprising a multidisciplinary research consortium of scientists from across Europe, and relates some of the early achievements of the group from some very different perspectives, including technical, clinical, ethical, and of course how the needs of people with dementia and their carers can be harnessed in the development process to produce pervasive healthcare technology and services that are valued by all the stakeholders in the process.

Progressive intellectual deterioration is the hallmark of dementia. Decline is normally centred around memory failure initially but virtually all cognitive capabilities are susceptible. Rapid progress in the understanding of the underlying neurobiology is currently taking place. In most instances, prevention strategies remain unclear and treatment methods are based around social and personal support as pharmacological modalities produce only modest effects. Technological means of home assistance offer a potential route towards relief of suffering and minimisation of healthcare costs.

It is estimated by 2050 that one-third of Europe’s population will be over 60. Life expectancy has on average already risen by 2.5 years per decade and the number of old people aged 80+ is expected to grow by 180%. Nowadays, there are 5.5 million cases of Alzheimer-afflicted people in Europe and more new cases being added every year. In fact Alzheimer’s disease has been called the “plague of the twenty-first century”. There is currently no cure for this disease; however, prevention and early diagnosis may play a huge role in delaying the onset of the worst effects of this severe disease. Modern technologies could have an important role to satisfy main needs of people with dementia. Nonetheless, despite recent advancements in information and communication technologies and growing sales numbers, industry has been rather reluctant to standardise access technologies and to implement them in a “Design for All approach”. Because of this, in last years, there have been launched in Europe a great number of initiatives, both public and private, which try to improve the situation of those persons who suffer this ailment and that will be detailed in this chapter.

Some of the needs that people with dementia and their informal carers currently perceive as insufficiently met by regular care and support services might be alleviated, or even be met, using modern Information and Communication Technology (ICT). The study described in this chapter was designed to provide an insight into the state of the art in ICT solutions that could contribute to meet the most frequently mentioned unmet needs by people with dementia and their informal carers. These needs can be summarized as (1) the need for general and personalized information; (2) the need for support with regard to symptoms of dementia; (3) the need for social contact and company; and (4) the need for health monitoring and perceived safety. Databases that were searched include PubMed, Cinahl, Psychinfo, Google (Scholar), INSPEC and IEEE. In total 22 websites and 46 publications were included that satisfied the following criteria: the article reports on people with dementia and/or their informal carers and discusses an ICT device that has been tested within the target group and has proven to be helpful. Within the first need area 18 relevant websites and three studies were included; within the second need area 4 websites and 20 publications were included. Within the third and fourth need area 11 and 12 publications were included, respectively. Most articles reported on uncontrolled studies. It is concluded that the informational websites offer helpful information for carers but seem less attuned to the person with dementia and do not offer personalized information. ICT solutions aimed at compensating for disabilities, such as memory problems and daily activities, demonstrate that people with mild to moderate dementia are capable of handling simple electronic equipment and can benefit from it in terms of more confidence and enhanced positive affect. Instrumental ICT support for coping with behavioural and psychological changes in dementia is relatively disregarded as yet, while support for social contact can be effectively realized through, for example, simplified (mobile) phones or videophones or (entertainment) robots. GPS technology and monitoring systems are proven to result in enhanced feelings of safety and less fear and anxiety. Though these results are promising, more controlled studies in which the developed ICT solutions are tested in real-life situations are needed before implementing them in the care for people with dementia. It is recommended that future studies also focus on the integration of the current techniques and solutions.

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.

In this chapter the management of the process that bridges the large step between user studies and the design of the system is described. This process consists of two substeps: the transition from user requirements to functional requirements and from the latter to the technical specification. The chapter begins by describing the concepts of functional requirements and technical specifications. Following this the two subprocesses are described and the lessons that are learned are outlined. At the end of the chapter the work carried out is summarised using a list of recommendations for future design projects that may be of a similar nature within this domain.

When developing assistive technology for people with dementia it is important to take into account their needs and wishes as well as their cognitive abilities and disabilities. In this chapter we describe how the disabilities accompanying dementia can be taken into account when developing assistive technological devices for this target group. As a case example, we used the COGKNOW project, which specifically focuses on developing ICT support for people with mild dementia in the areas of memory, social contact, daily activities and feelings of safety. Before device development in the first year of the project, workshops and interviews involving 17 persons with dementia and their carers were held to discuss their needs, wishes and disabilities and some background and environmental information were obtained. The main dementia-related disabilities that emerged from this cohort and that proved relevant for the development of an assistive technological device were memory and orientation problems, poor understanding of verbal instruction, difficulty with instrumental daily activities and recognizing/understanding the meaning of pictures. Relevant personal and environmental features were living alone or with a carer, the need for company and social contact, the need for support in doing things for fun, using aids like a walking cane, possessing technological appliances that could not be easily used anymore, living in a house with multiple rooms and levels and feeling insecure when being alone. Taken into account these disabilities, background and environmental features, functional requirements were specified and a device was developed, the COGKNOW Day Navigator Version 1 (CDNv-1). The aim of the CDN was to support people with dementia in reminding, social contact, daily activities and safety in a simple manner. After a development period, the user friendliness and usefulness of this device were assessed via a field test in which the CDNv-1 was tested with 16 people with mild dementia and their carers in their own home. By means of semi-structured interviews and observations, experiences of the persons with dementia and carers with the CDN were inventoried. It was concluded that though most functions were judged as user friendly and useful, further personalization of the CDN would improve the perceived user friendliness and usefulness. This study showed that detailed information on the person with dementia’s functioning and living environment is necessary to attune assistive technology to their needs. The group of persons with dementia that participated in this project also showed that people with mild dementia are very capable of giving their opinion on the user friendliness and usefulness of assistive technology.

There is a strong motivation, in particular in the domain of healthcare, for new perspectives on context-driven research and computing in order to provide next-generation services to people that are tailored to individual needs rather than generalised assumptions that could potentially endanger human life. For that, context awareness is a key requirement in order to reach a better understanding of human-centric computing systems and environments, and subsequently, the deployment of dedicated services that are specifically adapted to the context to which they are applied. Such context-driven services would be able to provide the means of delivering situation-aware and person-centric services that ultimately may even anticipate future behaviour and problems of the user itself and the context in which the user finds themselves. However, the perpetual provision of contextual data in pervasive environments is far from being easy and includes major challenges that vary between environments. The reason for this is not only the sensor diversity within the environments themselves but also the contextual scope to be analysed and the amount of data to be collected and correlated to actually reach a minimum degree of contextual understanding. For that reason, in this chapter, contextual environments have been categorised as well as their interaction into different groups that reflect individual contextual levels of interest of which contextual understanding is required and consequently to which services can be applied.

In the COGKNOW project, a cognitive prosthetic has been developed through the application of Information and Communication Technology (ICT)-based services to address the unmet needs and demands of persons with dementia. The primary aim of the developed solution was to offer guidance with conducting everyday activities for persons with dementia. To encourage a user-centred design process, a three-phased methodology was introduced to facilitate cyclical prototype development. At each phase, user input was used to guide the future development. As a prerequisite to the first phase of development, user requirements were gathered to identify a small set of functional requirements from which a number of services were identified. Following implementation of these initial services, the prototype was evaluated on a cohort of users and, through observing their experiences and recording their feedback, the design was refined and the prototype redeveloped to include a number of additional services in the second phase. The current chapter provides an overview of the services designed and developed in the first two phases.

Ageing population trends, rising healthcare costs and social and digital inclusion are all factors in the background to the problem of older adults interacting with technology. Approaches to address “physical accessibility” and “access to technology” issues, as well as training for existing systems are evident, yet a usability issue still prevails. The primary aim of this chapter is to provide an overview of the research and literature and discuss the differing contexts in which older people and people with dementia interact with computerised systems and their associated issues.

This chapter is written from a test site leader perspective and describes the role of planning and timing of field trials when testing technical solutions, which could enable people with dementia to live a more independent life. The chapter is based on experiences from setting up the first and second field trials in the three test sites of the COGKNOW project. The intention is to point out some key issues that are important in preparation and planning of a field trial. The chapter addresses issues in the preparatory, the actual and the post-test phase of the field trial in order to help achieve a high level of success both from a general perspective and with a special focus on people with dementia.

An important aspect when developing assistive technical services for persons with dementia is the assessment of usability and usefulness from the perspective of the user. The COGKNOW project aims at developing an assistive device for persons with mild dementia and the evaluation of the first pilot device was based on a multiple case study design using mainly a qualitative approach in data collection. The design of the evaluation used a mix method approach using semi-structured interviews, combining structured and open questions, and semi-structured observations. Persons with dementia provide special challenges in assessing usefulness and user friendliness due to their cognitive impairments. The experiences from the first test of the COGKNOW device showed that the use of a mix method approach provides a comprehensive understanding of the usefulness and user friendliness that overcome some of the challenges.

Assistive technologies to support persons with dementia and their carers are used increasingly often. However, little is known about the effectiveness of most assistive devices. Much technology is put on the market without having been properly tested with potential end-users. To increase the chance that an assistive device is well accepted and useful for the target group, it is important, especially in the case of disabled persons, to involve potential users in the development process and to evaluate the impact of using the device on them before implementing it in the daily care and support. When evaluating the impact, decisions have to be made regarding the selection of measuring instruments. Important considerations in the selection process are the underlying domains to be addressed by the assistive technology, the target group and the availability of standardized instruments with good psychometric properties. In this chapter the COGKNOW project is used as a case example to explain how the impact of cognitive prosthetics on the daily lives of people with dementia and their carers can be measured. In COGKNOW a cognitive prosthetic device is being developed to improve the quality of life and autonomy of persons with dementia and to help them to remember and remind, to have social contact, to perform daily activities and to enhance feelings of safety. For all these areas, potential measuring instruments are described. Besides (standardized) measuring instruments, other data collection methods are used as well, such as semi-structured interviews and observations, diaries and in situ measurement. Within the COGKNOW project a first uncontrolled small-scale impact measurement takes place during the development process of the assistive device. However, it is recommended to perform a larger randomized controlled study as soon as the final product is ready to evaluate the impact of the device on persons with dementia and carers before it is released on the market.

This chapter is an overview of the future state of the art in using technology to help people remain functionally independent and in their residence of choice. This is perceived to be the direction and ultimate goal of dementia treatment and prevention. Of course methods and new approaches gained in striving toward an era of prevention may be immediately applicable to those who unfortunately nevertheless may succumb to dementing illnesses as well. This chapter describes first what current and then prospective generations of senior’s experiences and interactions can tell us about how technologies may be shaped and used in the future. This is followed by a vision of the future based on the view that the multiple technologies now available will continually undergo mixing and hybridization such that increasingly the home will become the basic unit of assessment and care provision in an environment of multifunctional ambient technology monitoring and health maintenance. Finally, key challenges to achieving this environment are described at the person level as well as the technical and systems level. Ultimately, these are perceived as challenges that can be surmounted ushering in an era of personalized health maintenance and care that also provides better population-based policy and management.