Abstract
The goal of this edited book, titled Ageing, Dementia, and the Social Mind, is to provide “an overview of developments and directions in the sociology of dementia” (p. 1). To achieve this goal, the editors present a series of current essays on dementia ranging from creative interventions, models of dementia care, social class and social representations of persons with dementia, and re-envisioning our conceptualization of persons with dementia. As the reader quickly realizes, the book is more of a collection of related essays than a primer on the current state of dementia care. This appears to be the intention of the book and it largely succeeds in providing readers with cutting-edge models and approaches to better understand and treat dementia in the 21st century. Throughout the book, the tone is respectful of people with dementia (PWD) and the authors present a central and firm belief that personhood remains in dementia and should be supported both in theory and in practice.
The chapters of the book are organized around four themes: (a) “the construction of personhood in relation to dementia,” (b) “the issue of care,” (c) “social representations of dementia,” and (d) “social contextualization of dementia” (pp. 2-3). Chapters 2 and 3 focus on this first theme of personhood. In Chapter 2, Kontos, Miller, and Kontos present a useful summary of person-centered care and introduce a model of “relational citizenship.” This model includes concepts that support and value personhood in dementia, such as interdependence, reciprocity, personal agency, inclusiveness. Somewhat surprisingly, the authors then present the findings from a mixed-methods study on an “elder clown” intervention. While creative and thought-provoking, we feel that a more in-depth discussion of the intriguing “relational citizenship” model may have been more informative to readers. Chapter 3 builds upon the strength perspective presented in Chapter 2 and strongly suggests that society re-evaluate views of PWD that cast and stigmatize them as passive and/or restricted citizens. As the authors state, “by too-readily positioning the oldest old and those with dementia in this place of deficit we risk ignoring the distinction between being and feeling frail” (p. 29). This view perpetuates the stigmatization of PWD and veils the reality that these individuals can and do actively participate in their lives and in the societies in which they live.
Chapters 4, 5, and 6 focus on issues of care that range from individual experiences of PWD and their caregivers to a broader historical context of 19th-century Britain. In Chapter 4, the authors present a dyadic case study of a man diagnosed with early-onset dementia and his wife who serves as his caregiver. This case study captures the anachronistic nature of early-onset dementia, the needs and challenges faced by this special subset, and the complex impact of this disease on relationships. One of the more interesting points raised is that “the well-intentioned attempt to elevate the status of people with dementia has thereby introduced new imbalances” and this can diminish the “vantage point of the carer” (p. 48). Chapter 5 presents the findings from two qualitative studies of health care assistants (similar to nursing assistants in the United States). Although not necessarily groundbreaking, the findings from these studies reinforce the importance of these frontline workers in promoting personhood in institutional dementia care. Chapter 6 focuses on institutionalization in the 19th Century in Britain. Although certainly an interesting read, the historical perspective of this chapter seems out of place with the current, forward-leaning intention of this book.
Chapters 7, 8, and 9 explore the social representations of persons with dementia. Chapter 7 continues with the strength-based perspective and queries whether society can move from a “tragedy discourse” to a “living well” discourse in our views of PWD. This view challenges the “successful aging” paradigm which has been at the center of discussion since formally presented in 1997 (Rowe & Kahn) and reflects the notion of “harmonious ageing” (Liang & Luo, 2012). Chapter 8 presents two qualitative studies aimed at differentiating wandering from walking. This is an interesting topic but one that does not seem to fit well with the primary thrust of this specific theme for this overall book. Chapter 9 seems to follow a similar path by analyzing the writings of Nobel-prize winning author Alice Munro. These analyses are both deep and evocative; yet, this chapter may be better suited to a text on the representation of aging and dementia specifically in the arts and literature.
The final two chapters address the fourth theme of the book, the social contextualization of dementia. These chapters seem to regain the original aim of the book. Chapter 10 examines the role that social class can play in epidemiological studies of PWD, diagnosis and treatment, and access to care. Given the health disparities related to social class, this is an important discussion of how culture affects health-seeking behaviors and the responses of health care providers. The author makes the astute conclusion, however, that “research on occupational differences in health can only get us so far” (p. 136). This suggests that culture may play an equally or more important role than social class in understanding the lives of PWD (Hillman & Latimer, 2017). In the final chapter, the authors ask readers to reconsider (and, indeed, reject) views of dementia as a frailed old age and introduce the concept of precarity in later life. Precarity is defined as “uncertainty, insecurity, and vulnerability” that is influenced by “shifting global, economic, and cultural relations, as well as choices and decisions made in such contexts” (p. 145). This approach echoes the life course perspective in understanding dementia and the role that accumulated structural inequalities play, as well as the universality of concepts such as vulnerability and precarity in relation to dementia. The authors suggest that approaches that aim to alleviate suffering on a societal level “would create responses to older people with dementia not because they are pitied or sick, but because they are valued, and because a clearer understanding of their experiences prevail” (p. 151).
In thinking about the applications and audiences for this book, we feel that it would be useful as a secondary or complimentary text in upper level undergraduate and graduate-level course focused on the psychology and sociology of aging. Many of such courses exist in gerontology minor and major programs which are growing in number both internationally and in the United States. Consumers of this book would perhaps benefit from an additional chapter that more explicitly addresses challenges and critiques of the social constructionist approach to personhood in dementia. The chapters in the book are well written and thought-provoking and expand our understanding of the intersection of dementia and society. The primary strength of this book is the unified belief that older adults with dementia continue to maintain personhood and societal relevance and that our approaches and models of care should reflect this progressive view. The authors of this book ask societies to re-envision our views of and approaches to helping PWD and “help to draw attention to a deeper problem whereby notions of dementia as ‘frailed’ old age risk being read and interpreted as a ‘failed’ old age” (p. 143).