The arguments of this book are intended to tackle the social injustices faced by people living with dementia, yet reflecting on the author’s social position reveals a tension. As the author is not a member of the social group this book concerns, they are engaging in an act of speaking for others: a practice that has received significant criticism, given the risks of contributing to oppression and stigma through misrepresentation. With this concern in mind, this chapter engages in a reflective exercise about the content of the book, highlighting ways in which the author’s social position may have negatively influenced its content and setting out the steps the author has taken to try to address this.

In both philosophical research and public discourse around dementia, issues of power and social status receive insufficient attention. The Introduction sets out how this book is aimed at filling this gap.

In medical ethics, there is a well-established debate about the authority of advance directives over people living with dementia, a dispute often cast as a clash between two principles: respecting autonomy and beneficence toward patients. This chapter, in highlighting underexplored issues of power and social status, argues that there need be only one principle in substitute decision-making: determining authenticity. This principle favours a substituted judgment standard in all cases and instructs decision-makers to determine what the patient would authentically prefer to happen – based not merely on the patient’s decisions but also on their present settled dispositions. Adhering to this principle entails that, in a significant range of cases, an advance directive can (and indeed ought to) be overruled.

This book makes a number of theoretical contributions to the legal and political philosophy of dementia care, which have important public policy implications. This conclusion serves as both a summary of the book and a final statement of the urgency of addressing the issues raised. It must be appreciated that contemporary Western societies, including the UK, face funding and legislative barriers to achieving the just, dementia-inclusive society. Nevertheless, by identifying an ideal to aspire to, it is hoped that this book can play some role in rectifying the severe injustices people living with dementia face.

Despite negative effects on their health and social lives, many informal carers of people living with dementia claim to be acting in accordance with a moral obligation. Indeed, feelings of failure and shame are commonly reported by those who later give up their caring responsibilities, suggesting a widespread belief that professional dementia care, whether delivered in the person’s own home or in an institutional setting, ought always to be a last resort. This chapter, however, suggests that this common intuition gets things the wrong way around. The most serious injustices engendered by present-day dementia care services are contingent on broader societal structures – they can thus be ameliorated relatively easily (if resource intensively). Informal dementia care, on the other hand, carries similar risks of injustice and is much more resistant to structural reform. While there may be moral obligations to provide informal dementia care in present-day societies, then, they arise because of the deficiencies of professional care, not the virtues of its informal counterpart.

Carers often interfere with the choices of people living with dementia. On neo-republican and (most) relational egalitarian views, interference can be justified if it tracks a person’s interests: if it does not lead to a relationship of domination. The kind of environment-shaping interventions carers often choose to pursue, however, would be considered infantilising or objectionably paternalistic in other cases. This chapter defends what it calls the indirect-first approach to dementia care, arguing that it offers the best prospects of avoiding domination.

The framework set out in this book reconceptualises the problem of dementia care as a problem of power and social exclusion. At every stage, the goal should be to empower recipients of care to meet their own needs and participate fully in social life as equals, necessitating restrictions on the power of carers and radical changes to our cultural assumptions about and depictions of dementia. Though few would disagree that Western dementia care services are in need of reform, the book’s emphasis on social equality means that the depth and character of the proposed reforms differ significantly from many of those under public discussion. Indeed, as demonstrated in this chapter, significant changes would be needed to the way the UK treats people living with dementia under the law in order to support the reforms recommended in this book.

Secure dementia units (SDUs) rely on a degree of coercive control that might strike many of us as intuitively unjust. This chapter, however, cautions against the idea that justice demands their elimination. Setting out the limits of community care models, it makes the case for the limited use of suitably reformed SDUs. While they ought not to be the first choice for meeting the care needs of people living with dementia, the chapter defends the view that these institutions are essential to the social care infrastructure of a just society.

On a standard relational egalitarian framework, social justice is achieved through eliminating intolerable inequalities of power and social status. From this point of view, injustice is not simply a matter of what institutions or individuals do but of how they do it. If they fail to challenge, reinforce, or create paradigm social injustices such as domination, stigma, and oppression, citizens remain socially unequal whatever their distributive positions. As this chapter demonstrates, the case of dementia clearly illustrates the value of this approach, as purely distributive views cannot fully capture the severity nor the character of the injustices those that live with this condition face.

To use Ronald Dworkin’s well-known phrase, moral equality is usually taken to be the ‘egalitarian plateau’ on which theories of social justice (including theories of social equality) are built. If this is right, then people living with dementia must be our moral equals, in the sense of possessing the same basic moral standing, if we are to have duties of social justice towards them. Yet there are a number of influential moral philosophers who hold that severe cognitive disability, including advanced dementia, can strip a person of this status. This chapter defends the moral equality of people living with dementia, at all stages of progression, and thereby also defends the weight of their claims to social justice.

Delirium is an acute disturbance in mental status characterized by fluctuations in cognition and attention that affects more than 2.6 million hospitalized older adults in the United States annually, a rate that is expected to increase with the aging population. Delirium is associated with a myriad of poor outcomes, including prolonged hospital stay and readmission, loss of independence, new or accelerated cognitive impairment, and death. The relationship between delirium and dementia is complex, as dementia is one of the most significant risk factors for delirium, and delirium is independently associated with an increased risk of subsequent cognitive decline. Here, we provide a current review on the epidemiology, evaluation and management of older adults with delirium, focusing on those instances where it can be mistaken for a dementing illness.

The behavioral variant of frontotemporal dementia (bvFTD) is a clinical syndrome characterized by progressive deterioration of social behavior and cognitive functions. It is one of the most common causes of early-onset dementia and is associated with frontotemporal lobar degeneration (FTLD). The diagnosis of bvFTD can be challenging due to its overlap with other psychiatric disorders, but obtaining a detailed clinical history from a reliable informant is essential. Diagnostic criteria for bvFTD include behavioral and cognitive features such as loss of motivation, social disinhibition, lack of empathy, repetitive behaviors, changes in eating habits, and executive dysfunction. Biomarkers such as brain imaging and genetic testing can help increase diagnostic certainty. Disease progression in bvFTD leads to disability and functional deterioration. Future research aims to improve early recognition, diagnostic accuracy, and the development of disease-modifying treatments.

Diagnosing, treating, and caring for individuals with dementia-related syndroms raises unique legal and ethical questions. Individuals with dementia may be more likely to lack decision-making capacity. Additionally, along with their families, individuals with dementia will face complicated health care related decisions – complicated by limited therapy options. This chapter identifies key legal and ethical questions that come up in the clinical and non-clinical setting relevant to dementia-related syndromes.

Alzheimer’s disease (AD) is the most common type of dementia, accounting for approximately 60% of dementia cases (either alone or in combination); vascular dementia (VaD) accounts for another 10–20%. Most epidemiologic research on dementia has examined prevalence, incidence, and risk factors for either all-cause dementia or AD. This chapter discusses the epidemiology of all-cause dementia and AD, as well as advancement in VaD-related risk factors. Numerous prospective, observational studies have identified a variety of factors that may prevent or delay dementia onset. To better understand the epidemiology of dementia and the potential benefits of implementing interventions, future studies need to address the life course and long preclinical aspects of this disorder. More work is needed to understand the epidemiology and risk factors for non-AD or VaD dementias.

Biomarkers are objectively measured characteristics of a biologic or pathogenic process, which can have a variety of applications, including diagnosing disease and measuring response to therapeutic interventions. Historically, the diagnosis of dementing neurodegenerative diseases has relied on clinical characterization of patients during life, using established clinical diagnostic criteria to assign the diagnosis that best matches the patient’s phenotype, and later performing postmortem brain autopsy to make a definitive diagnosis. Biomarkers have been developed to measure pathophysiological changes that are hallmarks of different neurodegenerative diseases. For example, in Alzheimer’s disease (AD), biomarkers can detect and measure the two pathological hallmarks, amyloid plaques and tau tangles, in living people, using PET, CSF, or plasma testing. Biomarkers have the potential to redefine the diagnosis of AD and neurodegenerative diseases as biological processes rather than as clinical entities. Biomarkers will transform our ability to evaluate and treat neurodegenerative diseases by improving diagnostic accuracy.

Cognitive assessment is used to detect, characterize, and monitor the degree of cognitive impairment in dementia and its earlier stages. Brief cognitive assessments are frequently used across diverse clinical settings and offer scalability as a frontline marker aimed at enhancing the clinical efficiency of diagnostic work-up. These tools have a potential to facilitate early detection and diagnosis of symptomatic cognitive impairment, which is a crucial first step to providing medical and supportive care that benefits people with cognitive impairment and their care partners and for identifying pre-surgical or hospitalized patients who may benefit from delirium prevention interventions. This chapter provides an overview of the most commonly used brief cognitive measures in clinical practice, recent developments and novel measures, and future directions for use of brief cognitive tools across clinical settings including primary, dementia specialist, preoperative, and inpatient care. Recommendations for cultural considerations and optimal implementation paradigms are also discussed.

Alzheimer’s disease typically manifests age 65 or older with a predominant memory dysfunction followed by a progressive impairment of other cognitive domains. Aging is the main risk factor for AD development. However, up to 10% of patients present an early onset (under 65), manifesting more frequently with atypical phenotypes. Amyloid plaques and neurofibrillary tangles due to tau deposition are the main hallmarks of the disease. Despite sharing the same neuropathological features, AD phenotypes present differential tau distribution patterns in cortical areas, being tau-pathology topographically related to the clinical syndrome. In addition to aging, several other factors may contribute to AD pathology and its clinical expression. AD is currently understood as a disease continuum starting with a preclinical phase, progressively leading to mild cognitive impairment and dementia. The development of biological and neuroimaging biomarkers detecting in vivo the defining features of AD has remarkably improved the accuracy and early diagnosis of AD in the last decades.