The Sound of Silence—Dementia, Language Loss,
and Being Heard¹

Abstract: Language usually implies and embodies communication, but this paper explores the silence created when people living with dementia revert to their first language. I explore the connotations and denotations of the word “silence”, and the cultural dimensions affected by its imposition or adoption. When communication and entire languages are lost, either by attrition or hegemonic pressure, culture is lost, stories are no longer told, experience no longer valued, and our very humanity silenced.

Keywords: Silence, dementia, listening, minority language, bilingualism

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It is not difference which immobilizes us, but silence. And there are so many silences to be broken. (Lorde 2019, 32)

We generally think of silence as an absence of sound, but here I want to look at it as an absence of communication, a figurative silence paradoxically spoken into being when no one understands what is being said. I will explore this idea through the progressive silencing of bilingual speakers as they traverse dementia in a monolingual, second-language environment. Though still able to speak their native tongue, they become linguistic exiles, prefiguring what happens to all who progress through dementia in any setting, losing their memories, their language, and, ultimately, their very selves, at first lost in language and then to it as it retreats.

This piece owes its existence to an intriguing conversation I had with Alex Macdonald, a Gaelic speaker from the Isle of Lewis in northwest Scotland, who perceptively observed that dementia-related second language loss is creating monoglot adult speakers of Gaelic, when it has long been agreed that there are none, due to the complete saturation of Scottish life by the English language (Macaulay 1992, 141).² The same situation pertains in the North-East of Scotland, where native-speakers of Doric (the region’s dialect of the Scots language) are losing their later-acquired English through dementia and becoming, in effect, monoglot Scots speakers,³ a phenomenon my colleague, Simon Gall, has observed within his own family. Fieldwork profoundly shapes projects in Folklore studies⁴ and my thanks go to Alex Macdonald and Simon Gall for sharing their experiences in recorded interviews. The result is this reflection, intended to explore some intellectual and social ideas that relate to how we interact with our elderly citizens.⁵

An individual speaker’s language attrition is almost invariably discussed in relation to a bilingual speaker’s loss of their lesser-used native tongue in a majority-language environment, usually a “minority” language no longer necessary for community interaction. The “minority” language’s loss of functionality can be due to gradual cultural shifts but can also result from hegemonic social or political pressures, sometimes backed by colonial(izing) power, which often sees bilingualism as a threat or at least an opportunity to exercise control.⁶ An individual losing the majority language, as in the contexts that Macdonald and Gall discuss, raises a completely different set of issues. Such loss is not about the loss of linguistic heritage and identity, or about dementia, but rather about how its consequences impact communication, understanding, listening, and, ultimately, caring.⁷

Oftentimes in our society, we valorize silence: “silence is golden,” “can you keep a secret?”, “don’t tell,” children should be “seen and not heard.” These are positives, something to aspire to. We attend quiet, contemplative retreats; we admire monks and others who live in silence as a contemplative tool. Even sound itself, and language carried by it, requires silence “which does not cease to surround it and without which it would say nothing” (Merleau-Ponty 1964, 46).

But we are confused, and equally celebrate speaking out, when required: “speak up for yourself,” “be a whistle-blower,” or, at a wedding, “speak now or forever hold your peace” (though we usually hope that nobody will). We also decry silence as indicating complicity, for example, in the widespread use of “Silence is Violence” in protest movements. Here, we hope to end a silence that has allowed oppressors and their regimes to perpetuate themselves and the status quo (see Marching 2017). Silence is thus complicated by a diverse set of subtexts.

Imagine yourself listening to someone on a train who is speaking a language from a different linguistic family than your own. You listen for a minute, straining for lexical meaning, for the smallest unit of understanding, but there is none. The speaker’s voice is thus, in effect, silenced. Intonation and tone can, of course, convey aspects of meaning and, sometimes, a sound can evoke a range of meta-meanings, though not necessarily the correct ones, precisely because you do not understand it.

Incidents like this are likely to happen every day around the world when bilingual speakers lose their second language minority-language native speakers find themselves losing their second language to dementia in majority language care settings and are left with their mother tongue as the sole means of communication. The speaker is left adrift, like you on the train, hearing but not understanding.

It is well known that many living with dementia tend to lose their more recent memories first, falling further and further back into the remembered, hard-wired past and their native tongue.⁸ Thus, native speakers of Scots or Gaelic living with dementia leave behind English and revert to their mother tongue. Individual language attrition can also happen from disease or injury destroying parts of the brain or the connections that make them useful. People living with dementia, however, following patterns of memory loss, regress through their acquired languages in reverse order of familiarity and embeddedness, sometimes rediscovering one that they had “forgotten.” Alex Macdonald told me of a woman from the Netherlands who reverted to speaking Dutch, a language her children thought had been “taught out” of her many decades before when she was evacuated from Holland to New Zealand during the Second World War. “Birth languages do not simply disappear from memory” (Macdonald 2019), but are instead silenced through teaching, immersion, hegemonic language replacement, and sometimes active suppression, whether from outside forces or the person themselves as they jettison their native language to “get ahead,” a common enough scenario internationally.

A regression to native language is, of course, perfectly unproblematic if it is the majority tongue, but when the mother tongue has been supplanted in the community by another, the speaker is effectively silenced. Simon Gall has noticed such a situation developing in his grandmother’s home in Aberdeen. She is losing her English language skills as dementia takes hold, a change particularly noticeable when she talks to a non-Scots speaker like Simon’s Venezuelan wife, Sol.

I’ll tell you when it started: when Sol spoke to her.

Sol obviously doesn’t speak Doric, being Venezuelan, although she tries, and she does well sometimes.

She would say stuff to her. And Sol speaks great English and is easy to understand, I think, for most folk, and ma grama, every time she’d say anything, ma grama would look at me and say, “Fit? Fit’s she sayin?” [What? What is she saying?] An she’s sittin right there in front of her.

And it started to dawn on me that maybe it’s not just because of Sol. […]

So then I started doing my own wee experiments. I’d say something to her, as I would in Standard English, and say, you know, “Have you seen Margaret today?” She’d look at me an go, “Eh?” “His Margaret been roon theday?” “Oh no, I hinna seen her.” [Oh no, I haven’t seen her.] So, I started tae realize she’s […] hardly comprehending English now.

It’s really weird.

(Gall 2019)

In recent months, the situation has become acute, “When the doctor visits, my mum has to be there to translate, and the doctor is Scottish. She wouldn’t get the medical care she needs otherwise” (Gall 2020). The communications affected are no longer simply phatic speech, social visiting, or even practical interactions about quotidian needs, but about vital health care.

In a home setting like this, a regression to the mother tongue is not a problem, but Gaelic and Scots speakers can grow increasingly isolated as they find themselves in the predominantly English-language settings of care homes, institutions, and even whole communities, towns, and cities. The voiced become voiceless, losing their ability to communicate their story, their experience, and, at times, even their most basic needs, as Alex Macdonald recounts of a care home in the Isle of Lewis,

There was an incident with a man who had been asking for a glass of water all day and hadn’t got it, because there was nobody understood what he was saying. He was asking in Gaelic. And his relatives were very angry, quite rightly, and pointed out that, actually, there needed to be a lot more thought in a place like this where there were patients, who were only speaking Gaelic now, that there would be Gaelic-speaking staff. (Macdonald 2019)

The man had spent most of his life bilingual, with Gaelic as his native language and English learned when he attended school from the age of about six. He lived his life in an English-dominated world, but with the onset of dementia, began to lose his second language, leaving the deeply embedded Gaelic still usable. Usable but ineffective. This phenomenon is the sound of silence; he was capable of speech, of making sounds, but was silenced for all intents and purposes in the very act of speaking.

Dementia-related silencing can also be brought about by a physical journey into a different linguistic realm rather than shifting language patterns. One of Alex’s relatives, who had moved away, “regressed, only spoke Gaelic the latter year of her life, which you would think isn’t unusual, apart from the fact that she lived in Detroit.” The woman had left in the 1920s, existed in a monoglot English environment all her days, until, with dementia-induced language loss, she found herself effectively silenced though still able to produce sound. “There must have been other people who left here who found themselves in nursing homes across the world and unable, really, to communicate. Her children don’t speak it.” Even the woman’s own family was unable to help directly, though “they tried to access people in Detroit who could speak it and it was very sad for Lewis relatives, who understood, but could do little from four thousand miles away” (Macdonald 2019).

While such distances are dramatic, there is no necessity for an international journey for a similar silencing to take place, as Alex recounts,

The worst scenario, I think, was the one where a man from here told me that his mother was no longer speaking English and had no understanding of it now. […] And his father didn’t speak any Gaelic, so they weren’t able to speak to each other.

That is something that happened here, but I can equally see that happening in any other community where people are speaking minority languages and perhaps are in a situation where they’ve got a partner who’s not from the same background as them, or whatever. His father had never learned Gaelic, so they weren’t able to speak to each other. So that’s an extreme example, but it shows the importance of language. ⁹

Sometimes, the arrival of new populations creates new language environments. While English has long been a lingua franca for many Scottish communities, including care homes, the last few decades have seen an influx of carers from overseas. Some learn Scots or Gaelic, like the woman from India who assists Simon’s grandmother. She has “been living in Scotland for a long time. […] And she finds that she has to speak Doric to her to be understood” (Gall 2019). Without this kind of linguistic adaptation, silence is easily created, here by omission or a lack of knowledge.

Organizers in very local settings, however, sometimes have a better sense of the need for cross-linguistic awareness. A care home in Lewis, for example, says Alex Macdonald, “advertises which languages are spoken there, which I think is a fantastic thing, because you can then look for a home where […] there’s somebody who can converse with your relative” (Macdonald 2019).¹⁰

Aside from such apparent exceptions, people living with dementia in non-domestic settings, while still having voices, often lose their ability to communicate their story, experience, and even most basic needs, as the example of the man asking for water shows, becoming effectively voiceless. There is widespread acknowledgment of the need for linguistic accessibility within hospital medical settings, but while various regional branches of Scotland’s National Health Service offer interpreters for more than forty languages, neither Gaelic nor Scots is among them.¹¹ Granted, new monoglot speakers are small in number, and they are usually found in the home or in care settings rather than hospitals, but it might be valuable and rewarding for carers to learn and perhaps even be formally taught these local languages for the sake of our growing elderly population.¹²

We often tend to think of those with dementia losing their ability to communicate, but the disease reaches far beyond the individual. While someone is losing their second language, a carer who cannot speak the first becomes an equal partner in the creation of silence. Meaning, typically created in the communal space between speaker and listener, is left inchoate because the dementia dynamic militates against it, creating a vacuum notable for its absence of lexical communicative engagement. It may, at some level, be a communicative act, but one defined by negation—the lack of reciprocal exchange and understanding. Thus, dementia enforces silence on both sides, quieting both by progressively deleting their shared language and experience. Thus carers, too, are silenced.

Through the inaction of passively allowing such linguistic isolation to develop, silence becomes a verb. To “silence” something is to end its communicative activity, neuter its power. Sometimes we do this to ourselves, consciously or subconsciously suppressing memories to create a desired “reality.” Often, we mean it metaphorically, as with “cancel culture” on social media, not paying attention to what some individual, group, or culture is saying, often as a result of a power dynamic that allows, or makes us not listen to a certain individual or perspective. More aggressively, silencing includes history being written (voiced) by the winner, the pervasive, unremarked control of women by (white) men’s domestic, political, social, and religious practices, and prison regimes that disproportionately affect people of color, those in poverty, or those who threaten the status quo in some way. Silence, the verb, can also be violent, in extremis taking explicit physical form, as in the “Colombian necktie,” a form of execution in which the perpetrator draws the victim’s tongue out through a slash in the throat, a physical silencing and an aggressive warning to others to keep silent, but also symbolic in that it embodies overt external control over the instrument of speech itself.

Preventing people from being heard is the first step to retaining power. Thus, regimes aim to silence dissent, suppressing discourse that undermines their perspective or authority: protestors who disagree, women campaigning for the vote, or voters simply trying to exercise their democratic right, for example. ¹³ This can even extend to the visual, most famously in Stalin’s habit of altering photographic images to eliminate troublesome evidence.

In the Scottish context, the repression of Gaelic as a means of politico-social control has been deliberate and explicit for a long time, as seen in the Scottish Education Act of 1616, which explicitly calls for Gaelic to be “abolisheit and removit,” abolished and removed (Donaldson 1970, 178–179). For the Scots language, attrition and disempowerment were the results of hegemonic power methodically applied since the seventeenth century by a confluence of political, religious, and social forces.¹⁴

For the last few centuries, Scottish children have been taught English as their lingua franca, often completely leaving behind their native tongues, which were often beaten out of them from the age five or six—figuratively by a politically motivated education system, and literally through corporal punishment meted out to pupils for using of their native language in a school setting. Following on, Gaelic and Scots have been devalued and ghettoized into the realms of home and rural life. Today, they are thus often seen as best suited to self-deprecating humor, characterized by those in power (and wishing to stay there) as unsophisticated and uneducated.¹⁵ Our governmental systems have, moreover, institutionalized a dismissive attitude to “minority languages,” ¹⁶ as all the civic institutions of education, law, and government use the medium of English. So, Scots and Gaelic as languages of authority and learning have become silenced through deliberate action. Even today, a “cultural cringe” exists, leading many to recoil when they hear their native tongue—Scots or Gaelic—used in formal settings such as a university, the workplace, in the media, or “high culture.”

Many Scots spend a lifetime, it is commonly said, thinking in English, but feeling in Gaelic or Scots, reflecting a commonly held belief that our native tongues remain the languages of emotion and childhood, even in later life. ¹⁷ In our day-to-day lives, of course, we pay little attention to what language we are speaking. Simon Gall had “absolutely no idea” that he and his family were speaking Doric (North-East Scots) in his youth; it was the language of home and family and, as such, was the norm. For Alex, there seems to be a clear distinction between speaking our native tongue(s) and the effort required to speak a second or third language: “I’ve always felt it was an effort to speak the poshest of English, the proper English, at school. ”Indeed, most Gaelic and Scots speakers feel more comfortable using their native tongue in the home setting as they have been raised from the earliest of times to think of their native tongues as inferior, in the case of Scots as a broken-down, bastardized relation of English (the use of which is often tellingly referred to as “talking” as opposed to spikkin, “speaking posh,” or speaking “properly.”

Conversely, hearing our language in a non-native environment puts us at ease immediately, surrounded by the deep foundations of earliest (hopefully positive) memory.

Well, it’s the “tuigsinn,” “tuigsinn”—understanding. There’s an understanding straight away that, if […] I meet a native somewhere, that they understand my culture as well as my language. (Macdonald 2019)

Our native tongue elicits visceral feelings of connection even before we consider the content of what is being said.

To me, as a Gael, I’ll make a connection with somebody instantly if they speak to me in my own language. So even the fact that they can do that connects you in a way that you can’t…

You know, you can obviously connect to people speaking in English, as we are now, but if somebody comes through the door and speaks to me in my own language, then instantly […] there’s an extra connection between you. (Macdonald 2019)

Simon, raised in a Scots-speaking environment but schooled, like most Scottish children, through the medium of English, is now able to use it in a work setting:

I’ve had this feeling of a weight being lifted off when I can speak it, if you know what I mean. […] I always felt that it was an effort to always speak the poshest of English, or the “proper” English, at school and afterwards, etc. An there’s a feelin of relief, almost, recently over the last wee while when I can use it [Scots]. […]

I’m not able to put ma finger on it, but I certainly felt a bit of relief. I think that’s the only emotion that I can describe easily. I’ll spik the wey I spik at hame, I canna be arsed haein tae think o fit it is I’m sayin. (Gall 2019)

Part of this sense of ease derives from the domestic setting, in which conversation is generally far less formal, linguistically, and topically.

Many older Scots and Gaelic speakers have not had this opportunity and exclusively use English, their second language, in the formal settings of education, work, and civic life, able to switch with inconspicuous proficiency when the social context calls for it. Nevertheless, this subtle dexterity is the crux of language loss, being precarious and particularly vulnerable to changes in the brain, whether through injury or disease. Our mother tongue is so closely tied to identity that we do not think of it as a separate entity, as Alex suggests,

People could be taken halfway across the world, but, actually, their birth identity remains somewhere hidden deep in their head and it […] came out when they developed dementia. It just never went away, is what I’m saying. You never lose your key identity. (Macdonald 2019)

Nevertheless, when you lose your communicative language, that “key identity,” while not lost, lies unheard.

Silence can derive from the active suppression of a voice or a lack of linguistic understanding, but, equally, from the absence of a simple but crucial bridging step: listening. A wave of sonic energy released is effectively not a sound until it is heard. Creating meaning requires that we hear, and that we pay attention, so that we may understand.

In the context of those with dementia-related language loss, one kind of paying attention is an awareness that “their silence may be triggered by a failure in our methods of communication” (Macdonald n.d., 9, my emphasis). So, we must be alert to non-linguistic entryways. Sometimes a sensory experience, smell, taste, seeing or touching an object, can release language, bringing silence to an end: “A fisherman recently demonstrated mending nets in one of the hospital wards and a patient, who hadn’t spoken in over two months, informed a care worker that he used to do that task too, and assisted with the demonstration” (Macdonald n.d., 6). Dementia can bring about an age of enforced silence which traps people in an internal world, but even before that a lack of contextual understanding and effective triggers can bring an end to communication. Thus, while we often think of silence as an absence, it can become manifest, something we bring into existence by our actions or just plain neglect.

Though there is technically sound in the case of Gaelic and Scots speakers adrift in an anglicized sea, silence reigns supreme when there is no one to listen or to understand. Entire languages are lost, stories no longer told, experience no longer understood or valued, and culture no longer passed on. We lose the interaction and communication that define us as homo narrans and, with that, our humanity itself.

It is easy to conflate silence with quiet and connotations of peace and serenity. Those used to city dwelling, for example, often remark on how quiet the countryside is but immediately describe it in terms of sound: “the silence/ Of the wind through the trees” (Gibbard 2020). A listening ear soon picks up on many sounds: that very wind through the trees, a breeze over the grasses, water flowing, birdsong. The unpractised ear may experience a kind of silence, however, because these rural sounds can be experientially devoid of meaning, empty of the understood vocabulary of cars, crosswalk indicators, piped music, overheard telephone conversations, and media. “Silence,” in everyday parlance, is, therefore, relative. It is not acoustic silence but instead an absence of meaning parsable to the individual experiencing it. So, we might better conceive of “silence” as an absence of communication.

What if the world around us really was silent, truly quiet? That would equate to death, in our imaginations, Hamlet’s “quietus” (to discharge, release, or end in death). Quiet might be the end of all things, connecting to a visceral fear deep within, but even in a silent, anechoic chamber, we hear things: the sounds of our blood moving around the body, the heart beating, the sound, by contrast, evoking life and living. Thus, our embodied selves are our best insurance against the desolation of quiet, death, silence, and silencing.

The Gaelic for dementia is “gad do chall fhèin”, literally, losing yourself, says Alex.

They would explain away, you know, an older person maybe, ‘Th’ad air call’, they’re lost. It’s this whole thing of losing themselves as a person. […]

This is the thing that’s most interesting to me. It’s the fact that there’s a drawer somewhere in your head where English no longer makes sense. You go right back to the beginning. (Macdonald 2019)

Language is a vital weapon in defying silence and silencing of every kind, making the rapid global trend of language loss nothing short of a tragedy. ¹⁸ When we lose a language, we lose a particular ontology of the world and the capability to listen to voices and perspectives other than our own. When communicative language is lost to neurodegeneration, we lose a crucial mechanism for making sense of the world and, concomitantly, the world loses its means of making sense of us.

Ultimately, we must develop a deeper understanding of silence and what it means to be heard. It behoves us today, then, as we care for people living with dementia in a context of hegemonic world languages, to pay attention to the sounds of silence, to see if we might hear, and listen carefully, to the still, small voice of one crying out in a linguistic wilderness, in a language we do not understand.

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Notes

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Works Cited