Our knowledge of dementia stigma is still fairly limited, especially in comparison to stigma relating to mental illnesses. This chapter surveys existing scholarship and explores the historical roots of the concept of stigma and of the way different conceptions (biomedical, biopsychosocial, sociocultural and relational) of dementia generate and/or address stigma. It further identifies language, media and sociocultural structures as mechanisms that perpetuate public dementia stigma, before it turns to a number of domains in which dementia stigma can be addressed. In the domain of literature, destigmatizing efforts have attempted to generate empathy, an appreciation of complexity and insight into the condition of people living with dementia. Apart from contact-based and educational interventions, the chapter asserts that it is especially the development of 'counter-frames' that has the potential to unsettle negative perceptions of dementia. The chapter concludes by recognizing a number of methodological, conceptual and strategic challenges that complicate our evaluation of such strategies, or indeed our understanding of the complex phenomenon of dementia stigma itself.

Most people with early-stage dementia lead relatively independent lives and many remain active drivers for several years after diagnosis. Independent mobility and driving are important features of their quality of life and enable the individual to continue living at home, thus reducing the financial burden on society. However, dementia-associated cognitive impairment can impact the ability to drive safely. This leads to a potential conflict between the individual’s autonomy and the safety of other road users. Regulations concerning drivers with dementia differ across countries, and clinical assessment procedures to determine fitness to drive differ within and across countries. No single examination method can classify a driver as safe or unsafe with complete certainty. Once a person with dementia has been cleared for driving, regular follow-up is necessary to determine when driving should cease. Clinical experience shows that the issue of driving is sensitive for cognitively impaired people and caregivers. Even a severely impaired person may react strongly when learning that driving is no longer permitted, as this represents a threat to his or her self-esteem as well as a practical challenge. This needs to be recognized and dealt with appropriately in the healthcare context, presenting and discussing alternative modes of transportation.

Most people in contemporary western societies do not die suddenly, but from organ failure or dementia after a period with declining health due to chronic-progressive disease. With increasing options for care and treatment, decisions about useful or desirable treatment and care are made in the last phase of life of most people. In this chapter, we report on three categories of end-of-life decisions that are made in dementia care. First, decisions primarily aimed at alleviating pain and other symptoms or improving quality of life in other ways, while possible effects on length of life are deemed irrelevant compared to that aim. Second, decisions around life-sustaining treatments or treatments to cure acute or co-morbid conditions which may or may not affect length and quality of life. Examples of such treatments are cardiopulmonary resuscitation, use of antibiotics, and artificial nutrition and hydration. Third, decisions around terminating life, e.g. euthanasia. For all these decisions, we focus on clinical as well as on some societal and ethical perspectives.

A life-course approach to enhance tolerance to and prevent dementia and senescence is increasingly embraced by scientists, clinicians and policy makers to promote healthy ageing. Tolerance enhancement and prevention remain the most sensible courses of action given the lack of effective dementia treatment. We discuss the modifiable risk factors of dementia, and address social isolation and loneliness in view of their importance from a psychological and societal perspective. The effectiveness of prevention strategies and non-pharmacological intervention is increasingly supported by scientific evidence. They support an actionable model of dementia and senescence prevention that is cost effective and converges with established public health programmes (diet, exercise, mental health). They also relate to central societal issues (social inequality, pollution, healthcare), and translate to multidisciplinary professional interventions that are tailored to the individual. Changing lifestyle might be an effective way to address the challenges of dementia and senescence in our ageing populations, but also represents one of the most formidable psychosocial and societal challenges.

A beneficial environment is of utmost importance for the well-being of people with dementia. This environment comprises different aspects and levels. We start the chapter with a discussion on the importance of relationship-centred care, as a more holistic alternative to person-centred care. One way to put this concept into practice, is by using the ‘Senses Framework’. We continue with a description of how architecture can be favourable for people with dementia by taking them into account as social beings within their cultural context. In this way architecture is more about creating a proper environment for continuing daily activities and social interaction. We subsequently elaborate on dementia-friendly communities, where persons with dementia can navigate, feel safe and maintain their social networks. Singapore is used as a case study. Importantly, technology and the “virtual” environment is taking up more and more place in our existence, and expands our natural environment. This provides us with a whole new range of possibilities for assessment and assistance in dementia. We conclude with the example of nighttime agitation, where different aspects of the social and physical environment (architecture, care, technology) interrelate with this core symptom of dementia.

There is a (r)evolution in decision-making with dementia. The traditionally applied cognitive approach based on mental capacity is radically questioned by the UN Convention on the Rights of Persons with Disabilities. Although there are still gaps in the alternative they suggest, the UN Convention should be applauded for doing justice to what a person living with dementia really wants. After setting out the puzzle raised by the UN Convention, this contribution aims to explore to what extent two already known ways of dealing with dementia could be part of the quest to uncover what a person who lives with dementia really wants. First, we look at advance care planning. As a process that foreshadows future choices, it has a major potential. Second, we shift to a less self-evident practice; existing dementia care literature that explores holistic hermeneutics and ‘in the moment’ frameworks to better understand the subjective experience of living with dementia. By looking at both a holistic hermeneutic approach and an ‘in the moment’ frame, we question whether these frameworks currently applied for understanding lived experiences of persons living dementia could be applied to disclose a person’s real will and can therewith be a footing for decision-making.

Words don't mean what we want them to mean. Concepts can be used in an improper way. In this chapter we examine how concepts such as 'self', 'identity', 'person', 'autonomy' and 'respect' are used in the context of discussions about what happens to a person with dementia. What emerges from this concept clarification is that we are more often tempted by unwarranted dualistic presuppositions than we realize; that the context in which a person can be an autonomous person presupposes intersubjective involvement; that when an individual can no longer participate in an intersubjective common understanding it has pernicious consequences for their autonomy, but that respect for the dignity of a human individual transcends this kind of participation. The exposition is complemented by an analysis of the legal handling of the concepts discussed.

Cognitive failure and the fear of losing control over one’s life has occupied mankind for centuries. In our chapter we describe the conceptual history of dementia starting with the first written traces from the twenty-fourth century BCE, relating the story of an Egyptian officer who not only developed the inability to remember yesterday but also became more and more childish. Subsequently, we summarize medical discoveries that have allowed cognitive, psychological and behavioral symptoms of dementia to be viewed as a result of brain disease rather than, for instance, witchcraft or ill will. In the context of growing awareness of neuro-pathophysiological mechanisms underlying dementia, associated with postmortem brain research in the late ninettenth century, Alzheimer’s disease became the ‘face’ of dementia for some time. We discuss further developments in the discovery and in the treatment of different types of dementia, also focusing on psychosocial aspects of the disease. These became an important topic of research as pharmacological treatments aimed at curing the neurodegenerative causes of dementia as yet do not exist. AWe compare how different cultures and societies deal with dementia. Finally, the political and societal attempts to promote social inclusion and empowerment of individuals with dementia are summarized.

At the time of writing this book, the world was in the grips of the COVID-19 pandemic. Many countries have experienced two lengthy lockdowns where contact with others was significantly curtailed. In this chapter, based on first studies done in and outside Europe, and more specifically in the United Kingdom and the Netherlands, we reflect more in depth on the consequences of the COVID-19 pandemic for people living with dementia, their families and professional caregivers in different care settings: at home, day care facilities and nursing homes.

We give an overview of the huge and increasing economic costs of dementia, both for the persons with dementia and for society as a whole. Public intervention is needed if we want to provide affordable and high-quality care to all persons with dementia. First, although an effective pharmaceutical cure for dementia would undoubtedly be a blockbuster drug for private companies, economic features of the production process of dementia medicines explain the relative underinvestment in private research. Second, there are no well-functioning private insurance markets for long-term care expenditures. Public intervention is needed to stimulate research, to finance care, to reduce inequalities in health and well-being, and address barriers to access to effective treatment and supportive care.

To evaluate psychological and psychosocial interventions or to decide whether it is cost-effective to reimburse specific therapies or medicines, one needs a measure of the quality of life of the persons with dementia. A large battery of specific dementia scales is available that can be used to evaluate psychological and psychosocial interventions, while cost-effectiveness is usually analysed with generic QALY-type health measures. The choice between these various measures cannot be made only on statistical or technical grounds because it has crucial ethical implications. Different measures of QoL reflect different fundamental perspectives on what makes a good life.

A vast majority of persons with dementia receive help and support from family members, friends and neighbours. Research shows a high reliance on informal long-term care for persons with dementia. In this chapter we discuss the role of informal care in dementia care and the sustainability of that role. Societal changes have an impact on the availability of informal carers and on the division of tasks between formal and informal care. Taking care of a family member can be rewarding as well as challenging. Depending upon the stage of the dementia process the challenges have differing characteristics and the burden changes. Evidence-based interventions have been developed to support either the person with dementia and their informal carer or the family network of the person with dementia. These interventions can alleviate challenges and support informal carers in their role.

Meaning in life has recently grown into an important study domain within psychology, with accumulating evidence pointing to the experience of meaning as an important aspect of human functioning and a psychological strength in challenging times. It may therefore be a prime candidate for supporting the functioning of adults with dementia, but there is room for improvement in the integration of meaning in life into dementia research and practice. To facilitate progress in this area, the current chapter provides a broad introduction on meaning in life and dementia. We first discuss the state-of-the-art in meaning in life research - its conceptualization and important correlates. Next we discuss the available empirical work on the experience of meaning for people with dementia. This is followed by a reflection on how meaning in life can be understood in terms of a felt sense and a relational construction, demonstrating our societal responsibility in supporting a meaningful life for people with dementia. We end with some suggestions on how we may seek to do this.

Couples confronted with a diagnosis of dementia face many relational changes, including changes in their intimate and sexual lives. Dementia often requires a renegotiation of the roles between partners and creativity to find new ways to keep their sexuality alive. Although family members and healthcare providers are often concerned about (inappropriate and risky) sexual behaviour of persons with dementia, patients (and partners) may experience sexuality as a human need rather than a problem. This chapter covers the impact of dementia on partner relationships from a patient’s and partner’s perspective and describes different stages of change in their sexual relation during both the phase of home care as well as after admission to a residential care facility. After focussing on (the management of) inappropriate sexual behaviour from the perspective of the family and healthcare system, the chapter elaborates on ethical issues including sexual consent, capacity, privacy and sexual rights. The chapter ends with a plea for a better understanding of the relational and sexual consequences of dementia that enables to provide tailored care to persons with dementia, their partners and their broader network.