An Agenda for Improving Communication in the Dementia Context

This final chapter draws together the ideas from the book to consider what the priorities should be for improving communication by and with people living with a dementia. The main ideas from the book are summarized. Desirable features for effective and humane communication in the dementia context are suggested, including: opportunities for ‘real’ communication; practical support, flexibility, and empowerment; and respect, dignity, and kindness. The importance of building and sustaining social and emotional reserve is reiterated. These ideas are linked to existing practices to help shed light on what is most likely to work and why. Kindness is identified as the lynchpin for intuitively embracing these approaches.

The Experience of Dementia Communication

Communication is an early casualty of dementia symptoms on account of the loss of confidence and agency arising from reduced expressive ability, plus the challenges to identity associated with memory impairment. Drawing on first-hand accounts, this chapter explores how people living with a dementia and their carers perceive the role of communication problems in shaping their experiences, and what they say they need for their lives to be easier. The emotional experience of being a family or professional carer is considered. The concept of emotional reserve is introduced, as a means of accounting for individual differences in personal resilience to the many challenges associated with living with a dementia or caring for someone who is.

Drivers of Disrupted Communication

This chapter opens part 3, within which the focus is a new understanding of why communication is challenging in the dementia context and how improvements could be made to practice. The Communicative Impact model is used to shed light on how the various ‘hard’ and ‘soft’ causes of dementia interact with the generation of messages, and why failing to achieve the intended change in one’s world negatively affects one’s confidence and self-esteem. Attention is paid to the high risk of a mismatch of contextual information between people living with a dementia and their interlocutors (communication partners). The many ways in which either party can attempt to fix communication problems is then considered, noting that such solutions can create additional problems, one of which is awkward pragmatic gaps, where the speaker is not sure why an issue has arisen and, thus, how to respond. Finally, brief consideration is given to similarities between communicating with people living with a dementia and people using a second language in which they are not fully proficient.

Conceptualizing Communication

This chapter provides theoretical justification for the model described in the previous chapter. The evolutionary drive to create and sustain a comfortable personal world is first explored, giving consideration not only to the imperatives of physical survival and procreation but also social ‘survival.’ Altruism is discussed, as a potential countercase to the model’s claim that interaction always pursues outcomes beneficial to the speaker. The model’s concept of ‘context’ is considered in relation to pragmatic theory and theories of persuasion and formulaic language, before various issues directly relating to the Context, Resources, and Processing components are explored, including the management of explicitness.

The Challenges of Communication in the Dementia Context

Much has been learned about how to provide good-quality care for dementia. While specific methods and approaches may come and go, some core underpinning principles—respect for personhood, empathy, quality engagement, identity, and sense of purpose and worth—have become well established, are consistently focal, and are recognized as vital for the well-being of not only people living with a dementia but also those caring for them. This chapter poses the question that shapes the book: Why is it so difficult to sustain effective communication practices in dementia interaction? Preliminary explanations are considered, and the book’s approach to finding more in-depth answers is outlined. The terms dementia and communication are defined, and the core orientation of care, personhood, is described, along with consideration of how ego-centrism shapes cultural expectations about dementia care.

Approaches to Effective Communication in Care

In many ways, communication problems are the most debilitating feature of dementia. While deficits of memory and information processing are challenging in their own right, it is their impact on communication that undermines a person’s social functioning, relationships and identity. This chapter asks how existing approaches to care attempt to address challenges in communication. Person-centred and relationship-centred care are defined, and an extensive list of such approaches is described with reference to their approaches to communication. Typical recommendations for communication, including content, delivery, environment and the speaker’s attitude are critically examined. It is argued that while all approaches may improve communication, there are some potential unintended consequences of certain recommended approaches.

The Role of Memory in Communication

This chapter explores the nature of memory and the impact on communication of the memory deficits associated with dementia. The main types of memory are described (long-term, short-term, working, declarative, implicit, emotional, episodic). The process of recalling information is discussed, and the natural changes associated with ageing are considered. The general impact on communication of impaired event memory is explored before a deeper look is taken at why disruption to episodic memory has such a significant impact on communication. Specifically, the role of autonoesis (knowing one was present at an event) is explored. Without autonoesis, it is harder to speak with authority and confidence about what happened. People living with a dementia are vulnerable to being doubted, out-argued, and shouted down by those able to produce a stronger case for their own claims. Not being believed is a significant assault on the sense of self.

The Biological Determinants of Dementia Communication

This chapter asks, how do the brain changes associated with diseases of dementia affect communication? The biological diseases leading to dementia are termed ‘hard’ causes. The main types of dementia (Alzheimer’s, vascular, frontotemporal including semantic, and Lewy body) are reviewed, with a focus on their impact on language and communication capabilities. Differences in people’s susceptibility to developing dementia-causing diseases are considered (e.g., genetic and environmental factors). For instance, individuals’ brains may differ in the level of physical resilience to damage (brain reserve). Individuals may also have greater or lesser resilience to the effects of damage on their cognitive function (cognitive reserve). Rementia (symptom reversal) and temporary lucidity are also discussed.

Different in Degree or Kind?

This chapter asks, what impact does the conceptual positioning of people living with a dementia have on communication? Exploring some of the effects of low social and emotional reserve, it shows how treating a person as fundamentally different in kind from oneself, rather than only different in degree, offers scope to remain emotionally separate but also risks a loss of empathy, even inhumane treatment. This conflict is developed as the carers’ paradox. An extended consideration is made of the rationales and problems associated with deliberately deceiving people living with a dementia, albeit with their well-being at heart. In this context, Specialized Early Care for Alzheimer’s (SPECAL) is examined in depth because of its unique approach to using deception as a means of facilitating contentment. These discussions lead to a more finely calibrated conceptualization of the degree–kind continuum.

Communication Processes

This chapter begins part 2 of the book, in which a new model of communication is developed. The chapter asks how impact is achieved through communication and proposes that the core driver of communication with others is the desire to enlist their cooperation in making beneficial change to our experiential world. The Communicative Impact model has three components: Context, Resources, and Processing, with Context, including shared knowledge, playing the central role in enabling speakers to pitch their communication appropriately for the intended effect. The role of the hearer is also considered, and discussion commences on why hearers tolerate being used by speakers in this way.