Dementia and the Social Scaffold of Memory

By Jonathan Pugh

 

The number of individuals suffering with dementia is steadily increasing; as such, the moral issues raised by the neurodegenerative diseases that bring about the symptoms typifying dementia are of pressing practical concern. In this context, Richard Holton’s topic for the first of his three 2018 Uehiro lectures (on the theme “Illness and the Social Self”) is a timely one: What are the ethical implications of the progressive and pervasive loss of memory that is a central feature of dementia?

I shall be blogging a synopsis of each lecture in the series on the Practical Ethics blog – You can find a recording of the lecture here

 

Introduction

According to what Holton describes as the standard view of the progress of dementia, initial symptoms result from damage to the hippocampus, which then spreads to other areas of the brain. In accordance with this view, the onset of dementia might typically involve the development of anterograde amnesia (that is, impairments to one’s ability to form new memories), followed by increasing retrograde amnesia (that is, impairments to remember past events) for episodic memory (pertaining to events), then semantic memory (pertaining to our general knowledge of words and ordinary facts), and finally loss of procedural memory (how to do things).

Although Holton indicates that the standard view is only a partial, and perhaps problematic view of dementia’s progress, he suggests that it is sufficient to understand why philosophers might be interested in dementia.

First, philosophers have typically claimed that memory plays a central role in personal identity. This is a view that Holton also endorses, although he rejects the Neo-Lockean view that memory is constitutive of identity; memory plays an important role, but it is not the whole story of personal identity. In particular, he notes that memory can be an important aspect of forming the sort of narrative that enable us to forge our identities, in a broadly socio-cultural rather than strictly metaphorical sense. One question in this area that is particularly apposite in the context of dementia is what kinds of narrative are sufficient to forge the sort of identities that we want to have as persons. After all, I can form a narrative about my pet cat, but it is clear that my cat does not have a the same sort of personal identity that I might partially construct by forming a narrative about a close relative. This is a question to which Holton shall return later.

Second, dementia raises complex questions about the nature of autonomous agency. To illustrate, suppose that as a competent 60-year-old, Smith signs an advance directive stating that doctors should withhold a life-saving medical intervention if Smith should develop severe dementia. Suppose now that Smith is 85, and has developed severe dementia to the extent that he is in a significant sense no longer the same person who issued the advance directive, and is now living a happy albeit very simple life. Should the advance directive be respected?

 

Memory Research and Dementia

 

In order to begin his investigation of these implications, Holton draws on recent research suggesting that memory impairments in dementia are failures of retrieval rather than failures of initial memory encoding. At the outset, it should be acknowledged that he concluded this section of the lecture with the caveat that this is a somewhat partial and not universally accepted account of the empirical state of play in memory research.

With that in mind however, we may begin with the uncontroversial observation that the hippocampus plays a central role in the initial encoding of memories of new experiences. These memories are detailed, and when we retrieve them we are activating the same pathways that were employed in initially forming the memory. Hippocampal processing thus facilitates our experience of recollecting detailed, salient, specific memories. Historically, the predominant school of thought was that the hippocampus was the seat of memory, acting also as a storage unit for the memories it formed. However, recent research has suggested that hippocampal memories may be consolidated in the neocortex in sleep, into far more associational memories, capturing the gist of the memories initially encoded in the hippocampus.

What does this mean for dementia? If dementia begins with damage to the hippocampus, then we might suppose that episodic memories are not encoded following the damage. However, this view has been challenged by research in mice suggesting that there may be different pathways for memory formation and recall. In any case, whether or not the hippocampus is able to encode new memories in dementia, these memories do not appear to be consolidated.

What about old memories? In accordance with the standard view of the progress of dementia (where initial damage in the hippocampus ‘spreads’ to other regions), we might expect neo-cortical memories to remain largely unaffected in the very early stages of dementia. Furthermore, as dementia progresses, patients can have moments of lucidity, and be primed to retrieve certain memories. Accordingly, Holton suggests that for a considerable period in dementia, the progressive retrograde amnesia experienced by patients is a failure of retrieval rather than a degradation of the neural circuitry underlying memory. The memories are still ‘there’ – it is just more difficult to access them; however, access to these associational memories may be facilitated if the patient is presented with the right stimulus.

 

Ethical Implications

 

i) The Everyday

One upshot of this view of the failures of memory in dementia is that third parties now take on a central role in the maintenance of the patient’s identity (in so far as this relies on the patient sustaining significant memories). They can become the buttresses of identity (rather that the eponymous scaffolds of the lecture – unlike scaffolds, buttresses cannot be taken away without compromising the existing structure; they are ‘built into’ a structure, whilst scaffolding is merely appended to one).

In a sense then, this view might appear like a social development of the extended mind hypothesis. Holton seems sympathetic to this view, on the proviso (analogous to Clark and Chalmers’ requirement for immediacy of uptake in the extended mind view) that stimulating memory can help sustain the patient’s identity if this resonates with her. Similarly, this is what may distinguish the personal narrative of a human being from the narrative we might develop for a pet; as Holton explained further in the Q & A, the former sort of narrative can partly constitute identity in a deeper sense than the cat’s narrative because the person can resonate with the content of the story being told, and the idea that the narrative is maintaining identity.

Practically, this means that third parties take on new obligations to sustain the patient’s identity – Holton stresses that the correct approach to take here is to talk through familiar themes to present the correct cues for the patient’s associational memories, rather than to attempt to instil new memories. Holton suggests that this should be made clearer to carers, and that carers have an obligation to present the right sort of stimuli to their loved ones, given the possibility of manipulation. More specifically, he suggests that if patients have been evaluatively committed in certain ways in their life, third parties should not undermine that in seeking to sustain the patient’s identity in dementia.

 

ii) Advance Directives

Consider now the implications for honouring valid advance directives of patients who now suffer from severe dementia. A number of philosophers have argued that we should honour such directives; for instance, Ronald Dworkin has argued that we should prioritise the critical interests evidenced in the directive over the merely experiential interests that the patient is now solely able to hold. Alternatively Agnieszka Jaworska has maintained that patients with dementia still have a sense of something being good for them, and can thus be said to maintain values, and thereby autonomy.

Holton is sceptical of Jaworska’s claim; whilst we should concede that patients with dementia are capable of exhibiting positive responses, they lack insight and the deeper evaluational concepts to make judgements between competing goods. However, he also raises doubts about the value of life ‘having a shape’ that we can have a critical interest in fulfilling in the sense that Dworkin’s arguments require.

Holton’s own tentative view is that carers can help maintain a structure of values that can help to provide a bridge from the past to the present self. In turn, this could enable the past Advance Directive to have authority now. On this approach to the problem, it is no longer the case that honouring the past directive now would be making a decision for a different person; identity is sufficiently maintained.

Nonetheless, Holton acknowledges that the reactions of the patient still have moral significance. A different case makes this clear – suppose that whilst competent was a staunch believer in the sanctity of life had signed an advance directive instructing doctors to take every reasonable means to sustain life. However, he is now living a miserable life as a severely demented patient, whose days are filled with fear and anguish. Should consistency demand that we should treat the cases in the same way by honouring the advance directive? Holton concludes by suggesting that there could a difference between the cases; perhaps this is grounded in the epistemological differences concerning what can be learned from the experience of dementia, or a reflection of different conceptions of the good.

 

Discussion

Holton’s first lecture was a fantastic example of practical ethics that offers concrete guidance, and draws on relevant cutting edge empirical work. It also raises a number of new questions. Interestingly, there was not much further discussion of the consistency question regarding the two advance directives cases; I wonder if there may have been some in the audience who did not share Holton’s view that we need not treat the cases alike.

A common theme in the Q & A was the extent of third party obligations to maintain identity – should families be punished for failing to fulfil these obligations? Holton suggested that people should be persuaded to help their loved ones, but should clearly not be subject to criminal sanctions for failure to do so. Other questions concerned the obligation to present the right sort of stimuli to patients; for instance, there could be cases in which considerations of identity come up against something like Dworkin’s experiential interests, but carers may not have an advance directive on the particular matter to provide even partial guidance.

To illustrate, imagine I go to visit an elderly woman with dementia. Every visit, she asks when her husband will be coming to visit. In reality, her husband died 15 years ago. At the time, her husband’s death led the woman to significantly develop aspects of her narrative identity. She developed new interests and admirable independence. As a carer, should I seek to now maintain those aspects of her identity, even if that might require that I cause her to suffer bereavement anew at every visit?

Of course, carers will often be able to use strategies to avoid this somewhat artificial dichotomous choice; perhaps the patient can be moved to a new topic of conversation, or one can choose to omit certain truths rather than outright lie to the patient. However, like the question of honouring advance directives, the example suggests that considerations of identity, autonomy, and experiential well-being will often have to be carefully balanced when we think about dementia care. This is of course before we get to the thornier, wider social issue concerning resource allocation and dementia care, an issue raised by Prof. Julian Savulescu last night.

 

The lecture series continues with “Addiction, Desire, And The Polluted Environment” on Tuesday 22^nd May at 17:00 in the Oxford Martin School.

 

It concludes on Thursday at 17:00 in the Magdalen College, Grove Auditorium with “Illness and Attitude”