Re-establishing the Sense of Self: Outsourcing Memory to Cognitive Wideware by Patients with Alzheimer’s Disease

This was my final paper written for one of my favourite modules offered by the University Scholars Programme at NUS: Multidisciplinary Inquiries Into the Mystery of “Minds”.

I wrote my paper on Alzheimer's Disease because it had always been such a heartbreakingly debilitating disease. Not only do you progressively lose bodily functions, you forget your loved ones- and most importantly, the person you thought you were.  What if we could rely on the tools around us to delay the loss of our sense of self, even if it were just for a short while?

Introduction

Alzheimer's Disease (AD) is a neurological condition that results in dementia, which refers to a group of various cognitive impairments. Some of such impairments include disruptions in memory, information processing and linguistic ability (Sabat and Harré 448). As AD progresses to its severe stages, it results in impairments in carrying out activities of daily living. However, beyond mere reduction in quality of life, AD patients also experience something potentially even more debilitating: a loss of sense of self.

In Surviving Manifestations Of Selfhood In Alzheimer’s Disease: A Case Study (2002), neuropsychologist and social constructionist Steven Sabat puts forth that AD patients lose their sense of self not because of the neuropathology of the disease, but rather because of "dysfunctional social interactions" (6). Sabat supports this view by building on an earlier work co-authored with philosopher and psychologist Rom Harré (1992), which explored how AD patients are often unintentionally, perceived and treated as "helpless and confused,” (Sabat and Harré 454), or "defective" and "burdensome" (Sabat 28). As a result of such perceptions by their loved ones, patients experience depersonalisation or invalidation, resulting in a feeling of loss (Sabat 28). Given that this loss of sense of self is associated with anxiety and a reduced quality of life for AD patients (35), might there be a way to help them alleviate it?

Philosopher and cognitive scientist Andy Clark thinks there might be an answer. In Natural-Born Cyborgs: Minds, Technologies, and the Future of Human Intelligence (2004), Clark points to groups of AD patients who, despite experiencing progressive cognitive decline, continue to function at high levels (4). Clark attributes their high functionality to the utilisation of what he calls ‘wideware’ (3). In their own homes, these patients are found to extensively exploit the use of wideware such as labels, memory books, photos of loved ones, reminders and diaries, which serve as external memory aids that supplement impaired memory functions (4). Clark proposes that humans are able to integrate aspects of the external world (wideware) as part of their minds to supplement cognitive functions. The human mind, he argues, arises out of "looping interactions between material brains, material bodies, and the cognitive wideware of our cultural and technological environments" (9). Simply put, human minds are created and continually co-created by the joint interactions of the brain, body and its external environment. For these AD patients, their wideware has become so intrinsic to their cognitive functioning that their very removal is arguably tantamount to causing "harm to the person[s]" (5).

With Clark’s argument in mind, I seek to answer the question: how might AD patients be able to outsource certain memory functions to wideware in order to re-establish their sense of self? I will use Clark’s definition of wideware to examine qualitative interviews with AD patients in a five-minute film by the UK Alzheimer’s Society, as well as the results from a study evaluating the use of technological device SenseCam among AD patients. Ultimately, I argue that AD patients in the early stages of their disease can indeed utilise wideware to enhance autobiographical memory in order to re-establish their sense of self. However, as patients progress into the later stages of AD, it becomes harder for them to rely on tools as wideware to do so. What patients become increasingly reliant on becomes their loved ones in order to sustain their sense of self. The minds of AD patients hence increasingly rely on the minds of others as wideware in the later stages of their disease.

Why AD Patients Lose their Sense of Self

Before understanding the loss of the self, we must first ask, where does the self arise from? Neurophilosopher Patricia Churchland argues in her book Brain-wise: Studies in Neurophilosophy (2002), that the self is a non-physical thing, a concept that the brain constructs to help process one’s experiences as a “unit[ed] and coheren[t]” whole (61). She puts forth that since the act of ‘thinking’ is a function of the brain, the brain must be responsible for conjuring the construct of the self (61).

After establishing that the self arises from the brain, we examine the social constructionist view of the self. According to social constructionists, the ‘self’ can be broken down into two types.  The first, called Self 1, is the "self of personal identity", where the individual can refer to himself in first person using “I”, “me” or “mine”  (Sabat and Harré 447). Self 2 then refers to the collection of selves that arise not just from the individual’s brain, but also from other individuals’ brains (446). In order for Self 2 to come into being, it requires the cooperation and affirmation of and by others within the same social setting  (446). For example, an individual can identify as teacher only when he perceives himself as such and when his colleagues and students recognise and treat him accordingly in the school setting. Without cooperation between the individual and others, Self 2 will be impaired and fail to come into being, thereby profoundly influencing the way the individual's actions are perceived and subsequently treated (446). This paper focuses on Self 2 and will henceforth refer to Self 2 as the ‘self’.

AD patients often find themselves positioned as being helpless, confused or burdensome by the people around them (Sabat 26). To provide an example, in an interview with early-onset AD patient Richard Bozanich, he was asked to describe his experience living with the disease. When he read that the first Alzheimer’s patient said to her doctor, ‘I have lost myself,’ he “felt chills up and down my spine because that is what it feels like” (Strobel, online). He attributes this loss not just to how “other people perceive me, as if they don’t quite trust me on my own” (Strobel, online). He says, “I have been very independent all my life, and the thought of not being able to ‘do it all myself’ is hard” (Strobel, online). From Bozanich, we see how AD patients can experience a loss in their sense of self. Once such negative perceptions have been established by others, it becomes difficult for AD patients’ subsequent behaviour to be perceived otherwise (Sabat and Harré 445).

Utilising Tools As Wideware To Enhance Episodic Memory

“Wideware” is a term coined by Clark that refers “to states, structures, or processes” that meet two requirements. First, “the item in question must be in some intuitive sense environmental; it must not, at any rate, be realized within the biological brain or the central nervous system per se.” Second, “the item or procedure must play a functional role as part of an extended cognitive process: a process geared to the promotion of adaptive success via the gathering and use of knowledge and information, and one that loops out into the external environment some nontrivial way, so as to include and exploit aspects of the local bodily and environmental setting” (3). Clark provided the calculator and the notebook as examples of wideware (3). Examples of cognitive processes include those that “manipulate, store, or modify the knowledge and information that the organism uses to reach its goals” (3).

Much of the self depends on the brain’s ability to store autobiographical memory, which refers to information about one’s personal experiences and facts about the person (El Haj et al. 1). A key component of autobiographical memory is episodic memory, which aids the recall of  contextual details such as “locations, time, perceptions and thoughts” (El Haj et al. 4). An example would be “that day I got lost by the street because my phone ran out of power”. Episodic memories are key to daily functioning because they establish coherence between one’s past memories and present goals. However, the neuropathology of AD results in the formation of senile plaques and neurofibrillary tangles in medial temporal lobes in the brain, the very region responsible for retrieving episodic memory (Pennanen et al. 307).

Clark only briefly described how AD patients relied on labels and memory books to supplement their memories. I will explain how certain tools had been used as wideware to supplement episodic memory, and how they can help re-establish the sense of self. The Alzheimer’s Society’s five-minute film The Many Voices of Dementia Advocacy (2019) is a short film of seven AD patients sharing their tips and motivations for taking on dementia advocacy work. One uses her phone to send her reminders (01:11), another individual mentioned the use of the calendar to track dates and times (01:05), while another relies on pen and paper to “make notes on things” he wants to raise during his meetings (01:18). One individual had created a specific document specifying her unique needs, such as her need for rest days in between conference proceedings or for unique travel arrangements (01:44). This is a document she keeps close and shares with those she will engage with during a meeting or event (01:44). While the tools shared are quite obviously the same tools that people without AD also depend on, these tools are arguably those that healthy individuals take for granted and intuitively leave out in preference for more sophisticated tools, such as indie phone applications or computer software that has been optimised for efficiency.

In line with Clark’s criteria, the calendar, the notebook, the set of documents, are indeed structures or processes that “play a functional role as part of an extended cognitive process” (Clark 3). These tools constitute forms of wideware that are able to externally store information such as addresses, telephone numbers, reminders of specific dates, locations and times, as well as “specific needs”. The use of wideware in this case reflects an outsourcing of episodic memory, a function that the brain of an AD patient is no longer able to fully realise. Through outsourcing of their episodic memory, these tools have become an extension of these AD patients’ cognitive machinery. Further, since the mind arises out of brain-body-wideware interactions, the newly-reinforced mind has enabled patients to break free of conventional expectations of AD patients to take on the role of dementia advocates. One patient says that, “self-advocacy has given me my voice, it’s given me back my life…I’m so much more productive than I was told to expect after dementia” (Alzheimer’s Society, 03:46) while another shared that “I’ve gained my autonomy, my independence, my voice” (04:13). In being enabled to assume a new role as dementia advocates, the AD patients managed to re-establish their previous sense of self, from one that is helpless and defective to one that is independent and capable.

Episodic memory is also key to providing visual details that serve as important cues to trigger recall by the mediotemporal brain regions, which is necessary to update one’s conceptions of one’s own capabilities (Morris and Mograbi 1557). AD patients are only able to retrieve fragmented memories lacking the contextual detail necessary to update self-knowledge (Morris and Mograbi 1558). As a result, AD patients may turn to Reminiscence Therapy (RT) to stimulate recall of significant life events that were crucial to their conception of self (El Haj et al. 6).

RT uses music, items from the past, photos or videos to provide a reminiscence “bump” and stimulate the retrieval of the past (El Haj et al. 6). SenseCam, a wearable camera (typically worn around the neck) that takes photos automatically every thirty seconds, is one technology that can be used in RT. In a study conducted by Woodberry et al in 2015, SenseCam has been found to elicit vivid remembering of original events that individuals have experienced (340). During the study, six patients with mild to moderate AD had used SenseCam to record their daily lives. Throughout the two weeks of experimentation, participants were to retrieve their most recent memories every two days (342). Following the patients’ acts of retrieval was a review of the images taken by SenseCam together with their spouses or experimenters (342). During the review, the pictures are played in rapidly in a continuous manner, as though watching a movie of one’s day (343). After three months, patients were tested on longer-term recall ability of those same events without reference to any SenseCam images (343). The study found that SenseCam was better at helping five out of six patients remember events over a three-month period compared to reviewing a written diary (345).

Similar studies on SenseCam argue that it enables recall so effectively because it captures short time slices in a visual manner- thereby mimicking the qualities of autobiographical memory (Conway 1382). Further, these pictures are taken from the first person’s point of view, which triggers contextual cues necessary for recollection, making up for the deficit in the brain (Conway 1382). AD patients are hence utilising SenseCam to capture and store contextual cues to supplement neurological deficits in the brain regions responsible for episodic memory retrieval. SenseCam and the pictures captured are akin to extensions of patients’ recall machineries and hence, constitute as wideware. In the brain’s coupling with these two pieces of wideware, patients’ autobiographical memories are boosted, enabling them to remember self-defining memories that they would “normally…just forget” (Woodberry et al. 346). The use of SenseCam and its pictures as wideware has hence resulted helped patients re-establish their sense of self and in so doing, increased self-confidence and well-being (Browne et al. 713; Woodberry et al. 348).

In addition to SenseCam, much research is ongoing to develop more seamless use of advanced technologies such as other assistive technologies (AT) and virtual reality to construct highly realistic and immersive experiences for use in RT (Chapoulie et al. 6; Lindqvist et al. 393). Hence, technologies like SenseCam, once made more ubiquitous, have the potential to become a mainstay of RT to help AD patients re-establish their sense of self. This field is promising because conventional methods of recall such as a written dairy had been described by the study’s participants as “boring” and “unhelpful”, even decreasing confidence because doing so often drew attention to patients’ own failure to recall the event (Woodberry et al. 346).

Utilising Other Minds As Wideware

However, as AD patients approach the severe stages of their disease, the progressive beta-amyloid deposition and neurodegeneration in the brain reduces the functional connectivity within the default mode network responsible for autobiographical memory (El Haj et al. 9). Hence, as brain capacity declines, it becomes increasingly difficult for patients to outsource memory to tools as wideware in order to re-establish their sense of self. In the film, a patient says that “there is so much I want to do and share…I want to do as much as I can, because the day will come when I can’t” (Alzheimer’s Society 00:42). Another patient echoes his sentiments, stating that, “after being diagnosed, you're left with virtually no supports, go home, get your affairs in order, basically, get ready to die” (00:36), reflecting the acceptance of an eventual cognitive decline so severe that mere reliance on tools as wideware will not suffice in sustaining their sense of self. In Woodberry et al.’s study, it was found that three months after the experiment, some patients’ disease condition had progressed such that some forgot that the use of SenseCam was the reason for their improved memories, with some failing to remember even being involved in the research to begin with (346).

I argue that AD patients hence increasingly rely on the minds of others as wideware in the later stages of their disease. We start to see this from how patients still in the mild-moderate disease stages are best supported by loved ones without the disease. Agnes Houston, the patient who had prepared an A4 document outlining her needs in the film, had indicated that her personal assistant would be the main point of contact. The person responsible for coordinating the events Houston attends and making her travel plans is not her but her personal assistant (Alzheimer’s Society 01:44). Houston has outsourced larger volumes of episodic memory to someone more mentally capable in order to continue performing her role as an advocate. Similarly, the spouses of four out of six patients in the Woodberry et al. study were responsible for operating SenseCam, uploading the images onto a computer and reviewing them with the patient (346). Beyond adopting SenseCam and its pictures as wideware, the patients had outsourced to the minds of their spouses the memory functions required to operate SenseCam and review the photos taken with them.

Studies have also found that receiving support from loved ones greatly enhances the acceptability and adoption of AT such as SenseCam (Lindqvist et al. 394; Nygård and Johansson 90). For example, in a study that evaluated how AD patients remembered event times, most participants relied on significant others to “book train tickets” and “write down appointments in their dairies”, with one saying that “If I have to be punctual, my wife is present on nine out of ten occasions” (Nygård and Johansson 90). Outsourcing memory to loved ones is most obvious in advanced AD where patients may develop anosognosia (where patients become ignorant of their disease condition) and hence do not wish to seek external aid, particularly from technological sources (Morris and Mograbi 1554). Even then, regardless of extreme reliance on loved ones, patients cannot outrun the neuropathology of the disease (El Haj et al. 7). Since the mind arises from brain-body-wideware interactions, the inadvertent decline of the brain will eventually result in a mind so impaired that wideware can no longer support. When that occurs, the sense of self will eventually cease to exist.

In conclusion, AD patients in the early stages of their disease can indeed utilise tools such as notebooks, calendars and technologies such as SenseCam as wideware to enhance autobiographical memory in order to re-establish their sense of self. However, following disease progression, it becomes harder for patients to rely on tools as wideware to do so. As a result, AD patients increasingly rely on the minds of others as wideware in the later stages of their disease, who in turn help patients sustain their sense of self-- until the patient can no longer outrun the neuropathology of AD.  

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Works Cited:

Alzheimer’s Society. “The Many Voices of Dementia Advocacy.” Youtube, 16 Ju. 2019, At: https://www.youtube.com/watch?v=CE9TVGS-Jww

Churchland, Patricia. Brain-Wise: Studies in Neurophilosophy. Cambridge: MIT Press, 2002.

Clark, Andy. Natural-Born Cyborgs: Minds, Technologies, and the Future of Human Intelligence. Oxford: Oxford University Press, 2004.

Conway, M. A. ‘Sensory-Perceptual Episodic Memory and Its Context: Autobiographical Memory.’ Philosophical Transactions of the Royal Society of London. Series B 356 (2001): pp. 1375–84.

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Strobel, Gabrielle. “Early onset familial AD: Q&A with Richard Bozanich.” Alzforum, n.d., At: https://www.alzforum.org/early-onset-familial-ad/profiles/qa-richard-bozanich