Developing Ethical Web- and Mobile-Based Technologies for Dementia

The availability of web- and mobile-based technologies (WMBTs) for dementia prevention and care has grown exponentially over the last decade. These include computer-based resources such as online self-diagnostic tools, mobile-based resources such as applications (“apps”) that track lifestyle metrics or provide interactive platforms for cognitive engagement, and cross-platform resources such as websites providing health information. Despite their potential benefits, key ethical challenges have been identified in WMBTs for dementia both at the individual and societal levels, including issues of privacy, quality, and accessibility. This chapter explores the ethical challenges surrounding the use of WMBTs for dementia and highlights recent evidence on the positive and negative impacts of WMBT solutions. The chapter reviews development and design recommendations that have been put forward to maximize the benefits and minimize the harms of using WMBTs for dementia. It closes by looking to the future and proposing development considerations for future WMBT development.

Developing Assistive Technologies for Persons with Alzheimer’s Disease and Their Carers

This chapter examines the ethical principles applicable to gerontechnology research and development for in-home monitoring of persons with neurocognitive impairments. Principles addressed include respect for persons, autonomy, beneficence, justice, nonabandonment, nonmalfeasance, and privacy. Key issues for designers, developers, end-users, and reviewers are highlighted by uniquely drawing from real-world research examples. Studies indicate that among stakeholders there remains an emotional tension between “high tech” and “high touch” interventions for older adults with dementia. At the extremes, technophobic humanists dismiss technology as universally inferior to human assistance, while techno-proponents view it as the solution to care problems resulting from human limitations. “Benevolent” geriatric protectionism from technology is paternalistic and stifles innovation, while pushing technology without input from geriatric end-users results in products mismatched to their needs. Society will be better served if both viewpoints thoughtfully consider the ethical foundation of their beliefs informed by research findings to foster approaches that do good, not harm.

Augmented Reality–Assisted Dementia Care

With the increasing aging population, the number of people suffering from dementia continues to grow at a high rate. Emerging technologies have been applied to support the independence of patients with dementia. Among these technologies, augmented reality (AR) technology augments computer-generated virtual content on the real-world environment. There is an increasing interest in the use of AR tools and applications for dementia care as these tools and applications are capable of providing intuitive interaction and reducing the workload of caregivers. This chapter presents a state-of-the-art overview of AR-assisted applications for dementia care. An AR-assisted healthcare exercising system that enhances the user’s motor skills and cognition capability is presented to illustrate the use of AR in dementia care. Furthermore, an outlook of the future of AR-assisted dementia care applications is presented.

Introduction

Dementia and especially Alzheimer’s disease (AD) are among the most expensive and burdensome diseases in Western societies. It is estimated that the number of older adults being diagnosed and living with dementia reached 35.6 million worldwide in 2010 and it is expected to increase up to 135.5 million in 2050. The increased incidence of the disease poses a major challenge for public health systems and health care services in terms of financial management and provision of specialized care to this patient population. The development and implementation of smart assistive tools (Intelligent Assistive Technologies - IATs) to compensate for the specific physical and cognitive deficits of older adults with dementia have been recognized by many as one of the most promising approaches to this emerging financial and caregiving burden. This volume aims at providing an up-to-date overview of the current state of the art of IATs for dementia care, determining their current taxonomy, and defining their functionality, capability, and level of implementation. In addition, this collection of essays examines the implications of the use of IATs at the medical level, including psychological and clinical issues and the ethical and legal challenges such as problems related to their long-term effects (psychological and physiological), questions related to privacy, and the values and norms guiding the development of regulatory frameworks at the national and international stage.

Epilogue

Alzheimer’s disease (AD) and other dementias afflict millions of older adults worldwide. The global prevalence of dementia is placing a high financial and caregiving burden on both individual families and the healthcare systems. The silent global epidemic of dementia calls for urgent measures to alleviate this global burden and for improving the delivery of effective care services for patients in need and their families. Achieving this goal will require a coordinated multilevel effort involving (a) advances in basic science aimed at cracking the pathological conundrum of AD and casting light on its etiology, (b) generating innovative pharmacological solutions aimed at mitigating—and possibly reversing—its symptoms, and (c) developing technological solutions that can assist people with dementia and their families, improve their quality of life, and facilitate and ameliorate the delivery of healthcare services. This book shows, however, that the future of dementia care in the digital era will be dependent not only on technology development but also on fundamental ethical considerations, unavoidable societal discussions, well-calibrated regulatory interventions, and adaptive governance frameworks.

Privacy and Security Issues in Assistive Technologies for Dementia

The collection of a large volume and variety of physiological and behavioral data is critical for the effective development, deployment, and implementation of intelligent assistive technologies (IATs) and for the subsequent effective support of older adults with dementia. Yet it raises privacy and security issues. This chapter reviews the major privacy and security implications associated with the use of three major families of IATs for dementia: ambient assisted living systems, wearable devices, and service robotics, especially telepresence robots. After exploring a number of both category-specific and cross-categorical ethical and legal implications, the chapter proposes a list of policy recommendations with the purpose of maximizing the uptake of IATs while minimizing possible adverse effects on the privacy and security of end-users.

Issues of Informed Consent from Persons with Dementia When Employing Assistive Technologies

The use of assistive technologies (ATs) in the provision of healthcare promises to provide novel opportunities to protect, empower, and extend the autonomy of persons with dementia (PwDs). However, it also poses autonomy-related challenges, especially regarding informed consent. Traditional informed consent procedures, aimed at the protection of the autonomy of research participants and patients undergoing treatment, are not readily applicable to PwDs when it comes to deciding about ATs. This chapter analyzes the ethical challenges of obtaining informed consent from PwDs for research and development, and the use of ATs. The analysis reviews both traditional informed consent procedures and more innovative ones. The chapter will conclude with a list of recommendations, based on the findings of the ethical analysis.

Shaping the Development and Use of Intelligent Assistive Technologies in Dementia

This chapter aims to offer some general thoughts on the development and use of intelligent assistive technologies in dementia. Based on an analysis of ethical principles and concepts, guidelines, recommendations, and codes of conduct in the field broadly construed, the text argues for an approach that takes the user perspective, in particular the users’ abilities, wishes, and goals, more clearly into consideration in intelligent assistive technology development and use. Although the reflections may have implications for caregivers, family members, and others involved in the care of persons with dementia, they are not so much intended to guide individual, patient-directed decision making as to address future directions for technology development and use in a more general way.

Caring for Older Adults with Dementia

In light of increasing life expectancy and population aging, healthcare systems today face the challenge of addressing the care-related needs of an increasingly aging population. Aging compounded with physical and neurological deteriorations means greater caregiving demands for both the formal healthcare sector and informal care from family members and friends. Unpaid informal caregiving is cost effective for the healthcare system as a whole; however, providing care for a family member with dementia can negatively impact the health of the caregiver. The increasing development and deployment of assistive technology is predicted to alleviate caregiving burden and allow the older person with dementia to remain independent and continue to live at home for as long as possible. This chapter presents the landscape of information on informal caregiving for patients with dementia and its associated caregiving burden. It also discusses the evidence available on the potential of assistive technology for alleviating informal caregiving burden. The chapter concludes with some considerations about the governance of assistive technology. It argues that assistive technologies that are proven to be clinically effective should be made fairly and ubiquitously available to improve the quality of life of the person with dementia and his or her family caregiver. This is important to ensure the sustainability of the overall healthcare system.

Dementia in an Aging World

Both developed and developing countries are facing economic and social challenges posed by an aging population. Dementia is one of the most common diseases in old age and has major consequences for society. In 2013, an estimated 44.4 million people worldwide suffered from dementia, and this number is expected to increase to 135.5 million by 2050. The current worldwide costs of dementia have been estimated at $604 billion, primarily due to the high demand for care. There is no known cure for dementia; however, positive developments with respect to lifestyle and recognizing risk factors in young and middle ages might have positive long-term effects on the risk of dementia in old age. Prevention and adequate medical treatment of these risk factors might help postpone dementia into higher ages. In addition, assistive technologies may help to mitigate the family and caregiver burden.