Broadening the Dementia Debate is part of a growing effort to understand dementia beyond the biomedical model and its premise that the neurodegenerative changes associated with this disease inevitably result in the loss of personhood. In surveying the evolution of Western medical thinking about dementia, Bartlett and O’Connor draw attention to the implications of representing the disease exclusively in terms of decline and impairment. The authors explain that biomedicine, with its focus on psychopathology, misrepresents what occurs with personhood in dementia. For Bartlett and O’Connor, the loss of personhood is neither linear nor completely predictable; rather, it is deeply biographical because it unfolds at the convergence of interpersonal, social, and institutional circumstances unique to each affected individual.
The authors succinctly map out current debates on what occurs with personhood when the dementia symptoms inevitably progress and offer much-needed clarity in sorting out the contributions of psychology, nursing, social work, philosophy, and sociology on this issue. Bartlett and O’Connor lucidly trace the idea of sustained personhood in dementia to the symbolic interactionist notion of the self as consisting of a stable biographical core and a situated identity which is fluid and adaptive to the varied circumstances of everyday life. From this perspective, the availability of a social environment where others meaningfully interact with the person with dementia, despite their diminished abilities, becomes a crucial aspect of sustaining personhood in dementia.
Bartlett and O’Connor critically appraise the contributions of key personhood scholars and note their unwillingness or inability to grasp how broader social discourses can dehumanize and objectify people with dementia. The authors acknowledge recent efforts in this field of inquiry that more deliberately situate the experiences of people with dementia within social and cultural contexts. Building on this analysis, they offer a multidimensional model of dementia that intersects several levels of analysis – starting with the subjective and intersubjective experiences of people with dementia all the way to the discursive practices which define dementia in the social sphere. A discussion of the strengths and limitations of this model acts as a preamble for Bartlett and O’Connor to introduce social citizenship as a platform for examining dementia as a sociopolitical issue.
Chapter 3 explores the usefulness of social citizenship as a framework for dementia care and advocacy. The authors define citizenship as a status which protects people with dementia from discrimination and allows them “to grow and participate in life to the fullest extent possible” (p. 37). They reaffirm the right for people with dementia to remain active participants in their social destiny and articulate the need for sustained advocacy centered on the themes of growth, empowerment and social justice.
In chapter 4, Bartlett and O’Connor reflect on how the language care providers use in representing and interacting with people with dementia can become an instrument of oppression and discrimination. A more strategic use of language is advocated as a vital step in caring for people with dementia beyond the narrow confines of their diagnosis and disability. They also call for care providers to interrogate their personal assumptions, values, and beliefs to avoid unintentionally diminishing the status of the individuals who are entrusted to their care. This chapter echoes Tom Kitwood’s (Reference Kitwood1997) denunciation of disempowering care practices which, he argues, aggravate the symptoms of dementia. These practices include patronizing the person with dementia, failing to acknowledge the value of their subjective experiences, and dismissing their efforts to communicate with others. The authors recommend that all care practices be amended to “reflect assumptions, values and beliefs that are conducive to a social citizenship understanding” of dementia (p. 68). The strength of this chapter lies with its extensive use of field notes on the varied circumstances of selected research participants. The authors carefully analyze these notes to demonstrate how language can “inadvertently sabotage the realization of a critical social citizenship in people with dementia” (p. 51). Chapters 5 extends this analysis to professional practice and community care.
In chapter 6, Bartlett and O’Connor advocate for researchers to involve people with dementia in the research process. Specific approaches are discussed, including institutional ethnography and critical research methodologies, while the applicability of Foucauldian and Bourdieuian sociology is touched on but insufficiently explored. Chapter 7 examines social citizenship as a tool to enhance the status of people with dementia in broader sociopolitical and cultural contexts.
Bartlett and O’Connor offer a timely framework for conceptualising dementia beyond existing debates over its nefarious effects on personhood. By bridging micro-level analyses of dementia interactions and contributions from selected macro-level theories, they challenge health care providers to consider how social, cultural, and political contexts exert powerful influences on the experiences of people with dementia. The book also features a helpful discussion on how to make dementia care practices more person-centered. However, the book’s applied focus also means that it somewhat underplays the political economy of dementia care. A full understanding of social citizenship arguably should take into account how class asymmetries and other markers of inequality such as gender, education, race, and ethnicity exert a powerful deleterious influence on access to adequate dementia care. Unless urgently addressed by political action, these disparities will continue to undermine the dignity of people with dementia and any efforts made to strengthen their status as active and engaged members of society.
