JULIAN C. HUGUES
Julian C. HUGUES is a consultant in old age psychiatry in Northumbria Healthcare NHS Foundation Trust and honorary professor of philosophy of ageing in the Institute for Ageing and Health, Newcastle University, UK. His research focuses on ethics and philosophy in connection with ageing and dementia. He is a member of the Nuffield Council on Bioethics.
Introduction: two-way traffic
One of the inspiring things for me when I entered psychiatric
practice, having previously studied philosophy, was the thought that there is, or should be, two-way traffic between philosophy and psychiatry 1 (Fulford 1991). I shall go on to argue that one of the ways in which philosophy is practically relevant to dementia care is that it can help with ethical thinking. At
first blush, it is very easy to imagine the moral philosopher coming along to practitioners in dementia care and helping them to solve some of their practical difficulties. It is helpful to consider the ways in which we might do this. The inspiring thing for me, however, was the thought that the traffic goes
in the other direction too: clinicians have something to teach philosophers. There are experiences understood in clinical practice that need to be grasped
by philosophers, which might be helpful in shaping thought and reasoning. The traffic in this direction ranges from large-scale conceptual concerns in
the philosophy of psychiatry, for example about how thought insertion
affects our view of consciousness (Bayne 2013) 2 , to nuanced issues about the
relevance of certain facial grimaces in terms of our understanding of a
particular person with dementia and, therefore, our appreciation of the role of
grimaces (or embodiment) in our understanding of personhood generally
(Hughes 2013a) 3 .
One of the reasons I think this second direction of travel has been
inspiring for me is that, although on the one hand I believe it to be true, on the
other hand, I find myself wondering in what sense it really is true. Clinical
practice and philosophy inspire me to ponder this uncertainty. It is towards
explication of this uncertainty that I think I shall be moving in this paper, so let
1 K.W.M. Fulford, “The Potential of Medicine as a Resource for Philosophy”, Theoretical
Medicine, 12 (1991) 81-85.
2 T. Bayne, “The Disunity of Consciousness in psychiatric Disorders”, in: K.W.M. Fulford,
M. Davies, R.G.T. Gipps, G. Graham, J.Z. Sadler, G. Stanghellini, & T. Thornton (eds.), Oxford
Handbook of Philosophy and Psychiatry, Oxford: Oxford University Press, 2013, p.673-688.
3 J.C. Hughes, “‘Y’ Feel Me?’ How do we Understand the Person with Dementia?”, Dementia,
(2013), 12/3 (2013) 348–358.
20
me say a little more about it in anticipation. Of course, as a practitioner, I can
say to the philosopher: ‘You see that grimace, which might have been a smile,
we take it that this is a sign that he no longer wishes to eat’. It is a sign,
therefore, of agency, even in circumstances when rationality is not obvious,
when language is absent, when we have no reason to believe that there is any
significant cognitive function of the sort that might be taken to underpin
personhood, in one sense of that word. But there still seems to be bodily
autonomy or agency (Dekkers 2010) 4 . My uncertainty here is not about all of
this being true. It is simply that I guess most philosophers would grasp this
pretty quickly. If there is this sort of traffic going from practice to
philosophy, it does not seem to be very laden down. It is light traffic.
Still, I want to say, there is something else about practice that should
speak to philosophy, which we know, but which can be hard to enunciate. It
seems to me it is about the spaces that we create in therapeutic work, the
meanings which are co-created between human beings. There may be various
ways to put this, various avenues down which we might travel, from a
discussion of tacit knowledge (Thornton 2013) 5 to talk of the similarities between
aesthetic and clinical judgments (Hughes 2014) 6 . Important things happen in
these spaces – everything from practical and clinical to ethical and
metaphysical – and these realities, known by practitioners, might constitute
weightier traffic for the philosophers to consider.
But, since I am meant to be considering the practical relevance of
philosophy to dementia care (rather than the other way around), is this to the
point? Part of what I want to conclude is that philosophy can heighten our
awareness of, or prime us to, the significance of what we are doing. The
inspiring thing about the two-way traffic, perhaps, is that it flows in both
directions simultaneously. Philosophical reflection, simply put, makes me
more reflective as a practitioner and, as such, I am likely to be prone to
understanding meanings, or significances, which are of philosophical
importance. None of this is guaranteed, of course, but it is possible.
I shall move on to discuss ethics and, in particular, the notion of
personhood. This will lead me to consider the importance of the human person
perspective. Then I shall set out an argument, albeit in a summary fashion,
4 W. Dekkers, “Persons with Severe Dementia ad the Notion of Bodily Autonomy”, in:
J.C. Hughes, M. Lloyd-Williams, and G.A. Sachs (eds.), Supportive Care for the Person with
Dementia, Oxford, Oxford University Press, 2010, p.253-261.
5 T. Thornton, “Clinical Judgment, Tacit Knowledge, and Recognition in Psychiatric Diagnosis”, in:
K.W.M. Fulford, M. Davies, R.G.T. Gipps, G. Graham, J.Z. Sadler, G. Stanghellini, & T. Thornton
(eds.), Oxford Handbook of Philosophy and Psychiatry, Oxford, Oxford University Press, 2013,
p.1047-1062.
6 J.C. Hughes, “Editorial: The aesthetic approach to people with dementia”. International
Psychogeriatrics. (2014).
20
about normativity as an example of a more philosophical topic in order to
show its relevance to practice, which will culminate in the idea of dementia-in-
the-world.
Just ethics?
So, it seems clear that the philosopher, especially the moral philosopher,
can help those who are engaged in dementia care. Take the issue of artificial
feeding for people with severe dementia. It is common that people with severe
dementia start to lose control of their ability to swallow safely; and some of
them also just seem to stop wanting to eat or drink. One response to this is
to consider some form of artificial feeding, perhaps a naso-gastric tube (NGT)
or a percutaneaous endoscopic gastrostomy (PEG) tube; the first goes via the
nose into the stomach, the second goes directly through the abdominal wall. In
a person with severe dementia, should these types of artificial feeding be
used? Ethicists or moral philosophers can point to the doctrine of ordinary
and extraordinary means as a way to decide. This doctrine suggests that
there is a moral obligation to provide ordinary but not to provide
extraordinary treatments (or investigations). One way to understand this is to
consider “extraordinary” those treatments which are both unlikely to be
effective (i.e. they are likely to be futile) and which are also burdensome to
the person and to the family. Empirical evidence suggests that artificial feeding
is not efficacious (Sampson et al., 2009) 7 and it is likely to be burdensome,
therefore we are not morally obliged to provide artificial nutrition. We might
do so under particular circumstances, but we are not morally obliged to do
so under normal circumstances. Instructing those involved in dementia care
about this doctrine can be useful and is a way in which philosophy might be
relevant to dementia care. It is helpful purely in terms of setting out clearly a
coherent way in which to think through such issues. The doctrine would
also be relevant to the use of cardiopulmonary resuscitation in severe
dementia or to the use of intravenous, as opposed to oral, antibiotics in the
same circumstances.
The doctrine of ordinary and extraordinary means is not, of course, a
panacea for such moral problems. Clinicians still have to be sure that they
have appropriate empirical data upon which to decide that the treatment is
likely to be futile for this individual. They still have to make a further
evaluative judgment about the extent to which the treatment might be
burdensome. And, even if they are sure the treatment would be regarded as
“extraordinary”, they still have to decide whether or not they will give it,
because the doctrine does not say they must not give it, only that it is not
morally obligatory to do so. Furthermore, not everyone accepts the doctrine and
7 E.L. Sampson, B. Candy & L. Jones, “Enteral Tube Feeding for Older People with Advanced
Dementia”, Cochrane Database of Systematic Reviews, 2 (2009). Art. No.: CD007209. doi:
10.1002/14651858.CD007209.pub2.
20
there are arguments about its standing (John 2007) 8 .
Well, but at this point some doubts might start to creep in: how useful
are these extra layers of thought to the practitioner? Practitioners are, after all,
looking for practical solutions. They do not have the time or inclination, it might
be said, to embark on a process of complicated quasi-conceptual reasoning.
I still think that clarification is one way in which philosophy is relevant to
dementia care. In a recent systematic qualitative review, Strech et al.
(2013) 9 identified a spectrum of 56 ethical issues in clinical dementia care.
Clarity of thought will be important in dealing with each of these issues, whether
this involves using a well-established doctrine or whether it involves figuring
out an approach which accords with our moral principles and intuitions.
For example, in the UK the Nuffield Council on Bioethics produced a
report entitled Dementia: Ethical Issues (Nuffield Council 2009) 10 . This starts
by setting out a six-part ethical framework intended to help those who face
day-to-day dilemmas in the care of people with dementia. The framework is a
means to help practitioners to order their approach to any given problem. It
is based on established ethical principles, but also on philosophical ideas
which reflect socio- cultural norms and expectations. The framework is
philosophical in that it is to do with concepts and seeks to reflect
underpinning ideas and values rather than empirical facts. The first
component, nevertheless, starts by stressing the importance of facts. It is a
case-based approach to ethical decisions in which, having identified the
particular facts relevant to the case, they require interpretation in the light of
the relevant values and the case needs to be compared to other similar cases
to look for ethically relevant similarities and differences. The second
component stresses that the nature of dementia is that it is a brain disorder,
which is harmful to the individual. The third suggests that, none the less, with
good care and support, people with dementia should be able to live their
lives well, with a good quality of life. The fourth component stresses the
person’s autonomy and well- being. The emphasis is on autonomy in the
context of relationships, i.e. it is relational autonomy that counts. Autonomy
is promoted through our relationships. Well-being is to be thought of in terms
of the person’s moment-to-moment well-being, as well as in terms of longer-
term factors such as mental ability. Autonomy and well-being are both to be
8 S.D. John, “Ordinary and Extraordinary Means”, in: R. E. Ashcroft, A. Dawson, H. Draper and J.
R. McMillan (eds.), Principles of Health Care Ethics (2nd), Chichester, John Wiley & Sons, 2007,
p.269-272.
9 D. Strech, M. Mertz, H. Knüppel, G. Neitzke & M. Schmidhuber, “The Full Spectrum of Ethical
Issues in Dementia Care: Systematic Qualitative Review”, British Journal of Psychiatry, 202
(2013) 400–406.
10 Nuffield Council (2009). Dementia: Ethical Issues. London: Nuffield Council on Bioethics.
Available at http://www.nuffieldbioethics.org/dementia [last accessed 24th May 2014].
20
understood in connection with the interests of family and other close carers.
The fifth component emphasizes the importance of acting in accordance with
the ideals of solidarity: that is, seeing that we are all inter- dependent and
that people with dementia are fellow citizens. Finally, the last component is
about recognizing personhood, identity and value, which are held to persist
even into severe dementia.
If we take just one possible area where there can be dilemmas in care,
to do with the use of assistive technology to help care for people with
dementia (e.g. the use of electronic tags or tracking systems to find people
who might get lost if out walking alone), the report sets out factors which will
need to be considered. These include: the person’s own views and concerns,
for example about privacy; the actual benefits likely to be achieved; the extent to
which carers’ interests might be affected; and the concern that loss of human
contact might result from the use of certain technologies (Nuffield
Council 2009, paragraph 6.12) 11 . Both in its overall framework, then, and in
connection with particular issues, we see philosophical work being done
which is relevant to dementia care. Ways of thinking, issues and concepts are
being set out for the practitioner to consider and these are, in turn, based on
values, intuitions, principles and moral theories.
This might, therefore, seem to put to bed my creeping doubts about
the extent to which these ethical reflections could be seen as just more
words to be added to the complexity of clinical, practical decision-making in
dementia care. Indeed, both clarification of arguments and setting out
coherently ways to proceed are things that philosophers can do usefully. But
because ethicists do not seem able always to agree and because, even when
there is an agreed framework, further evaluative decisions are required, it
might still be questioned whether ethics is of much relevance to practitioners
once we get beyond guidelines or simple doctrines that can easily be put into
effect. If it is just ethics (in the sense of some sort of contribution to codes of
practice) that might seem fair enough. Practitioners can put up with the so-
called four principles of medical ethics: we should do good and avoid harm; we
should respect the wishes of the patient and consider resources (Beauchamp
and Childress 2001) 12 . Ethics presented thus can give us a framework for our
thinking and can help to determine what we do, as long as there are no
awkward conflicts between the principles. But isn’t it actually the case that
ethical issues seem to raise broader issues so that it is never just ethics?
We are always straying into more philosophical territory. To what extent is this
straying relevant to practitioners?
11 Nuffield Council (2009). Dementia: Ethical Issues. London: Nuffield Council on Bioethics.
Paragraph 6.12. Available at http://www.nuffieldbioethics.org/dementia [last accessed 24th May
2014].
12 T.L. Beauchamp & J.F. Childress, Principles of Biomedical Ethics, 5 th edition, Oxford, Oxford
University Press, 2001.
20
Personhood
We have already seen evidence of this straying into philosophical fields
in Dementia: Ethical Issues (Nuffield Council 2009) 13 . The ethical framework
presented in that report was not some simple guideline, but instead it touched
upon some complex and profound concepts such as solidarity; and it also
talked of personhood, to which I now turn. I want to consider it specifically
in relation to ethics and dementia care.
Of course, personhood raises all sorts of metaphysical questions, for
instance about the nature of personal identity (Hughes et al. 2006) 14 . But our
understanding of personhood can also be regarded as the foundation of
ethics. In human society, what is right and wrong is right and wrong in
connection with human persons. Even if the right or wrong is done to
something non-human, an animal say or to the environment, it is right or
wrong because it is the action of a human person as such. If a tiger kills the pig
of a peasant, it has not done anything morally wrong. In fact, this is (in a sense)
what tigers should do. The actions of persons, however, even if performed
alone without involving any other persons, are still actions which can be
described as good or bad, right or wrong. This is a normative claim, but it is
one I wish to regard as foundational. Human actions are significant, not solely
because of any actual or potential effects, but also because they influence
what we become. Moreover, they have significance in the context of the human
world.
It is the notion of personhood that picks out the moral and legal
significance of our standing as human beings in the world. To deny me
personhood means to undermine my status as a bearer of those rights which
are constitutively human. There has been a trend to regard personhood in
terms of a narrow account based on cognitive function, which is then a threat
(because of declining cognitive function) to the standing of people with
dementia as persons (Hughes 2001) 15 . But a broader account can be given
which characterizes the person as a situated embodied agent (Hughes 2011) 16 .
The agentive nature of human persons, coupled with the fact that all clinical
decisions are at one and the same time ethical decisions
(Hughes 2013b) 17 , means that those working in clinical practice are prone to
13 Nuffield Council (2009). Dementia: Ethical Issues. London: Nuffield Council on Bioethics.
Paragraph 6.12 Available at http://www.nuffieldbioethics.org/dementia [last accessed 24th May
2014.
14 J.C. Hughes, S.J. Louw & S.R. Sabat, S. R. (eds.), Dementia: Mind, Meaning, and the Person.
Oxford, Oxford University Press, 2006.
15 J.C. Hughes, “Views of the Person with Dementia”, Journal of Medical Ethics, 27/2 (2001) 86-
91.
16 J.C. Hughes, Thinking Through Dementia, 2011.
17 J.C. Hughes, “Ethics and Old Age Psychiatry”. in: eds. T. Dening & A. Thomas (eds.), Oxford
20
be faced by ethical dilemmas in their decision-making. But the situatedness of
persons means, moreover, that our actions as agents must inevitably have
significance, precisely because they are the actions of human beings in the
world (even if I am the sole human being in my world). Personhood is
fundamental to ethics because our sense of right and wrong and good or bad
comes from our being in the world as beings of this type with these instinctive
and natural concerns, which constitute our being as beings of this type.
Ethics, then, is not just ethics, because it points towards a view of the
world which is inevitably imbued with normative concerns on account of the
viewpoint, which is the human person perspective (Hughes 2011, pp. 223-
250) 18 . The human person perspective is one which is inherently ethical, which
is imbued with meaning and which is uncircumscribable, because the
possibilities for human beings cannot be shut down: there is always another
facet of human life to be explored or discovered. But the key things I
wish to highlight here are both that ethics is characteristic of human persons
as such and that ethics springs forth from persons as such. To understand our
ethical concerns, therefore, is to understand what it is to be a person. The
human person perspective just is an ethical perspective with normative
entailments and commitments. And a corollary is that ethics is never just
ethics, because to do the right thing, to act in a good way, means to be right-
minded as a person, it entails being a good person. To be moral is to be a
good sort of person. We might say that it is to flourish as a person, which
takes us into the territory of virtue theory. But I think this is right, because to
pursue moral actions and to make ethical decisions is not just to be able to
apply a framework or follow principles or guidelines, it is to be a certain sort of
person. It requires the dispositions and type of character defined by the virtues,
which are the dispositions and character that allow persons to flourish or to do
well humanly.
Ethics is practically relevant to dementia care for obvious reasons.
Moral philosophy is helpful inasmuch as it contributes to clarity of thought and
argument. But beyond the principles, rules and doctrines of ethics is the
inevitability of the human person perspective. Ethical obligations flow from our
nature as persons as such. Hence, our thoughts about personhood are also
relevant to dementia care, because a whole set of assumptions follow. If, for
instance, we do not regard people with dementia as persons, we may not
feel the need to treat them in particular ways. More than this, however, it
should be clear that, on my view, the relevance of ethics to dementia care is
that it inevitably involves consideration by one human being of the needs and
standing of another human being as a person. It highlights the relevance to
ethical thinking of that person-to-person encounter, which is the bedrock of
clinical work. Nowhere, I am inclined to say, is the meeting of persons more
Textbook of Old Age Psychiatry (2 nd edition), Oxford, Oxford University Press, 2013, p.725-743.
18 J.C. Hughes, Thinking Through Dementia, p.223-250.
20
important or more difficult than in severe dementia. We are led, nevertheless, to
the importance of the individual human encounter by thinking philosophically.
We are back to the simultaneous two-way traffic. Clinical or social care
practice throw up dilemmas and issues for the philosopher to ponder,
amongst the most profound of which concern the ways that persons relate to
each other and co-create the possibility of therapeutic spaces even in the midst
of physical and mental frailty. The philosopher’s answer to these dilemmas, in
terms of an account of the nature of personhood and the inevitability of the
human person perspective, is already realized in the actual encounters of
clinicians and others in the health and social care fields, so that philosophy
and practice are simultaneous. There’s no dementia care without philosophical
relevance and there’s no philosophical relevance in the absence of embodied
dementia care. The philosophical relevance is implicit in the acts of dementia
care.
I shall now turn to consider a particular philosophical argument to show
its relevance to dementia care. I have chosen a somewhat abstract
argument about normativity, an argument that stems from the philosophy of
thought and language, in order to show how even idiosyncratic arguments
about meaning turn out to be relevant to practice and to dementia care.
Normativity and psychological states
I shall present here an adumbrative account of the nature of the normativity
of intentional psychological states, which I have discussed in more detail
elsewhere (Hughes 2011, pp.81-116) 19 , but which also draws upon
arguments set out by Thornton (2007, pp.123-164) 20 . The argument has four
steps:
Intentional psychological states are normative;
Normativity can be thought of as rule-following;
Rules and rule-following involve practices and customs;
Practices and customs are embedded in the world.
Normativity and intentional psychological states
Wittgenstein’s famous account of rule-following seems to be motivated
by concerns around the problem of intentionality as it relates to understanding
(Wittgenstein 1968, §138-242) 21 . Intentional mental states are about
something. When I understand, my understanding is about or of something.
19 J.C. Hughes, Thinking Through Dementia, p.81-116.
20 T. Thornton, Essential Philosophy of Psychiatry, Oxford, Oxford University Press, 2007, p.123-
164.
21 L. Wittgenstein, Philosophical Investigations, §138-242 (eds. G.E.M. Anscombe and R. Rhees,
trans. G. E. M. Anscombe), Oxford, Blackwell, 1968. (First edition 1953; second edition 1958;
third edition 1967).
20
Hence, when I say ‘Now I understand’ I am committed to certain things being
the case, both now and in the future. I grasp something ‘in a flash’ that will
constrain the future (Wittgenstein 1968, § 138) 22 . Wittgenstein asks how can all
future uses come before my mind when I understand the meaning of a word
or phrase? There is a trivial sense in which the use of concepts is always
normative. It is trivially true that “table” refers to the table and not to the
chair. Intentional psychological states, however, such as my understanding
the meaning of a word, involve further commitments. If I say ‘I understanding
arithmetic’, for instance, the mental state of understanding determines
something, namely what must be the case when I am faced by an arithmetical
problem. Uniquely, intentional psychological states connect with and
constrain the actual instances that justify my saying I understand, intend or
mean something, even when the instantiations of these claims are in the
future. What, therefore, are the standards of correctness or incorrectness
that allow us to say that someone has or has not understood X correctly,
given that we do not yet know (short of being able to see into the future)
whether or not the person has understood? Of course, it is not all about the
future: the temporal relationship is not crucial. But being in a mental state
normatively constrains the world because, ‘in a flash’, (when I grasp the
meaning of a word or understand the arithmetic) something extended over
time, my grasp of the meaning or my understanding of arithmetic, comes into
being. Intentional psychological concepts, which stand for mental states, set
up normative links between both the mental states and the circumstances in
which the normal expression of the concepts occurs.
It is a crucial point that the normativity relevant to intentional psychological
states is constitutive. Luntley puts the point this way:
The normativity of content means that understanding the meaning of an
expression requires that you grasp certain patterns of use. These are
patterns of use that you have to grasp if you understand the concept…
Understanding the concept places certain obligations upon the speaker to
use the concept in a patterned manner (Luntley 1999, 16) 23 .
Intentional psychological states, therefore, involve normativity as a
constitutive feature. A particular mental state (e.g. understanding, intending or
remembering) involves the norms that govern whether or not the mental state
can be assessed as correct or incorrect, even if those norms will be realized in
the future.
The rule-governed nature of normativity
Wittgenstein highlights the suggestion that intentional psychological states are
constitutively normative by an analogy with rules. Rules constrain: it is
22 L. Wittgenstein, Philosophical Investigations, § 138.
23 M. Luntley, Contemporary Philosophy of Thought: Truth, World, Content. Oxford UK and
Malden USA, Blackwell Publishers, 1999.
20
constitutive that they should do so by establishing norms. We can think in
much the same way, according to Wittgenstein, of psychological phenomena.
Thus, understanding how to complete an arithmetical series just is the ability
to apply the arithmetical rule. Moreover, this feature of intentional
psychological phenomena is generalizable. Wittgenstein famously says:
A wish seems already to know what will or would satisfy it; a proposition, a
thought, what makes it true – even when that thing is not there at all!
Whence this determining of what is not yet there? This despotic demand?
(Wittgenstein 1968, § 437) 24 .
To summarize, intentional psychological states are normative. It is constitutive
that they constrain how the world will be. They constrain things in the way
that rules do. To understand normativity, therefore, requires an understanding
of the nature of rule-following.
Wittgenstein’s account then turns to consider various ways in which
we might try to grasp something in a flash (a rule say) which then
constrains the future. But, in negative mode, he rejects a number of
possibilities. He rejects the metaphysical claim that there could be platonic
rails to guide our meanings, understandings and so forth. He rejects the idea
that there are mental or causal processes going on to underlie the mental
phenomena. Wittgenstein also rejects a deeply sceptical challenge to the idea
that rules will be helpful. Summerfield (1990) summed up the challenge in this
way: ‘various interpretations of a linguistic sign are always possible’. The
worry is that there will be a regression which cannot be stopped:
… if rules are to guide our actions, and so on, the linguistic expressions by
which we represent them to ourselves need to be interpreted, and we cannot
fix the interpretation merely by producing more linguistic signs that
themselves require interpretation, or we launch the regress
(Summerfield 1990) 25 .
What is required, therefore, is a way to meet the sceptical challenge. The
answer is to see rules as practices.
Rules and practices
The rule-following considerations in Wittgenstein recognize the normativity
of intentional psychological concepts. Wittgenstein asked:
… what kind of super-strong connexion exists between the act of intending
and the thing intended? – Where is the connexion effected between the sense
of the expression “Let’s play a game of chess” and all the rules of the game?
(Wittgenstein 1968, § 197) 26 .
24 L. Wittgenstein, Philosophical Investigations, § 437.
25 D.M. Summerfield, “On Taking the Rabbit of Rule-Following out of the Hat of Representation: A
Response to Pettit’s "The Reality of Rule-Following"”, Mind, 99 (1990) 425-31.
26 L. Wittgenstein, Philosophical Investigations, § 197.
20
He responded:
Well, in the list of rules of the game, in the teaching of it, in the day-to-day
practice of playing (Wittgenstein 1968, § 197) 27 .
If I intend to play chess then I must be familiar with the whole enterprise
of chess-playing. We have to consider the full context of chess-playing to
understand the connection between intending to play and actual playing.
This inevitably involves the use of rules. The answer to the problem raised by
intentionality is to be found in the day-to-day practices, which are part and
parcel of our use of these concepts. As Wittgenstein said, ‘the meaning of a
word is its use in the language (Wittgenstein 1968, § 43) 28 . And another way to
put this is to say that, as in playing chess, in order to understand meaning
we must be able to participate in the particular practice. To understand is
precisely to be able to do this thing and to know that it is this and not that
which counts; this is constitutive of the understanding. Wittgenstein puts it this
way:
…there is a way of grasping a rule which… is exhibited in what we call
“obeying the rule” and “going against it” in actual cases (Wittgenstein 1968,
§ 201) 29 .
To be able to follow a rule or to understand something, therefore, involves
grasping practices. The next step in the argument is to understand something
further about practices, which have to be characterized in such a way as to
prevent a slide into scepticism.
The embedding of practices
It was Kripke (1982) 30 who highlighted the ‘sceptical paradox’
described above by Summerfield (1990) 31 . He then provided a ‘sceptical
solution’ which was firmly based on a communitarian view. It is, on this view,
communal practices that set a standard of rightness or wrongness, that is,
which establish the normativity of intentional psychological states. One
possible response to the community view is to say that it is just as easy to be
sceptical about the community as it is about the individual.
An alternative account of practices is the constructivist view, according
to which practices involve people deciding as they go along. This gives us a
different picture of normativity as akin to a disposition. Wright, who put forward
this view, says in connection with when it might or might not be licit to use the
27 L. Wittgenstein, Philosophical Investigations, § 197.
28 L. Wittgenstein, Philosophical Investigations, § 43.
29 L. Wittgenstein, Philosophical Investigations, § 201.
30 S. Kripke, Wittgenstein on Rules and Private Language: An Elementary Exposition, Oxford, Basil
Backwell, 1982.
31 D.M. Summerfield, “On Taking the Rabbit of Rule-Following out of the Hat of Representation: A
Response to Pettit’s ‘The Reality of Rule-Following’”, 425-31.
20
word “green”:
All that I can effectively intend to do is to apply “green” only when it seems
to me that things are relevantly similar; but that is not a commitment to any
regularity – it is merely an undertaking to apply “green” only when I am
disposed to apply “green” (Wright 1981, p.37) 32 .
Elsewhere, Wright suggests that we are, ‘the perennial creators of our concepts,
not in the style of conscious architects but just by doing what comes naturally’
(Wright 1986, p.294) 33 . The emphasis here is on natural dispositions to
respond in certain ways. One worry about this view of how practices supply
normativity is that it seems to get rid of the possibility of correction by others.
We can simply point to our natural dispositions without the possibility that they
might have led us astray. For McDowell this is unacceptable:
… the denial of ratification-independence… yields a picture of the relation
between the communal language and the world in which norms are
obliterated (McDowell 1984) 34 .
Elsewhere I have summarized the problems of these accounts of practices in
this way:
The community view makes normativity a consequence of practice and
constructivism makes it a matter of on-going practice constrained by human
nature. Both accounts link normativity to practice, but a problem remains:
from how we actually do act, it may seem that we cannot derive how we
ought to act. From the fact that, when I say I understand the formula, I
intend 1004 to follow 1002, it does not follow that this must be so for me the
next time, nor for someone else who understands the formula. Practice in
itself does not provide the forceful account of normativity required to
understand intentional psychological states. Something more is required to
make practice sufficiently robust to carry the normative commitments of
intentional psychological phenomena’ (Hughes 2011, pp.102-103) 35 .
If practices were only a matter of human agreement or human disposition,
then normativity seems either contingent upon practices or a consequence of
them. The embedding of practices in the world is a means to secure their
normativity. Practices have to be seen as part of the world. They just are
features of the world with which we must live. This is not to say that they
cannot be modified, but they are held in place by other features of the world,
which will be more or less open to modification. Some things will not shift.
Normativity must already reside in the practices for them to have
the features that we require, namely that these norms of practice are not open to
human disposition or convention, and so on. This normativity is a condition for
32 C. Wright, Wittgenstein on the Foundations of Mathematics, London, Duckworth, 1981, p.37.
33 C. Wright, “Rule Following, Meaning and Constructivism”, in: C. Travis (ed.), Meaning and
Interpretation, Oxford, Blackwell, 1986, p.294.
34 J. McDowell, “Wittgenstein on Following a Rule”, Synthese, 58 (1984) 325-363.
35 J.C. Hughes, Thinking Through Dementia, p.102-103.
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the possibility of there being the concepts that we use and the meanings
which we convey. Without it our concepts and meanings are open to the
sort of sceptical challenge we discussed above. Normativity, on this view, is a
transcendental feature of intentional mental states: it is constitutive of such
states that they should normatively constrain what will and will not be in
accord with them. The normativity is also immanent. It does not come from
elsewhere. It is a feature of the world of human beings who understand
mental states in this way. It is also something that cannot be reduced or
explained further.
In coming to understand intentional psychological states, therefore, we
see that normativity is to be understood transcendentally as a condition for the
possibility of these states being the states that they are; but we also see that it
is constitutive, immanent and irreducible. These practices are deeply embedded
in the world. The normativity that results from this understanding in terms of
practices is just a feature of the world that cannot be analysed further. It sits
there as part of the fabric of our world. It reflects a form of life in which words
are used in this way because the world is as it is for us as human beings.
Dementia-in-the-world
Where does this take us? It means that when we try to give an
account of dementia, which must include an account of how cognitive
functions are affected, we must give an account that allows room for these
features of intentional psychological states: that they are normative in a
manner that is constitutive, immanent and irreducible. In Thinking Through
Dementia (Hughes 2011) 36 I argued that the current models used to understand
dementia, whether biomedical, cognitive or social constructionist, did not give
an adequate account of intentional mental states. Indeed, I went further and
suggested that no models will be good enough, because they will always be
only approximations. We need a world of real human engagement, one
without models, where people meet in flesh and blood. Dementia is deeply
embedded in the world on this view: it is part and parcel of the world that our
brains age and that our cognitive functions change. Evaluative judgments
are required to determine where normality ends and pathology begins. But
any account of memory that does not allow it to be regarded as something for
which there are criteria of correctness, that is, norms governing its correct
usage, which must be independent of personal fiat or community
agreement, will be insufficient. Remembering is a matter where there can
be correct and incorrect accounts and this is not governed by biomedical
concerns, nor is it decided on the basis of cognitive neuropsychology, nor
even by a process of social construction. To remember is to be able to
participate in a practice of correct and incorrect instances of remembering, but
these instances and the criteria of correctness are deeply tied into the world.
36 J.C. Hughes, Thinking Through Dementia.
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The normativity around remembering is constitutive, immanent and irreducible –
it is not a matter of anything else. It is simply part of the fabric of the world.
Dementia, then, has to be seen as deeply embedded in the world. But
we must understand the world – our human world – as being very broad.
Understanding dementia, therefore, is always to understand dementia-in-the-
world. It is to understand a particular person within a particular context,
where that context ranges from the person’s genetic endowment to the setting
of his or her family, to the immediate environmental factors and cultural issues
that might be of concern, and on to spiritual dimensions of care. Dementia-in-
the-world is always about individuals in relationship with their own histories
and with the bio-psycho- social and spiritual aspects of their lives, as well as
with the cultural, moral and legal surroundings and so forth, which govern
their relationships with others and with the world.
Heidegger’s notion of being-in-the-world (Heidegger 1962) 37 conveys
both the manner in which we find ourselves in the world – it is not something we
have a choice over – and the manner in which we relate to other things: they
are part of our world; we stand in relation to them. In particular, we stand in
relation to other human beings in the world in a unique manner. Whereas we
have concern about other things in the world, so that our being-in-the-world is
characterized by a type of “care”, our relationships with other human beings is
one of solicitude. The notion of dementia-in-the-world is similarly meant to
convey how dementia must be viewed. It can be viewed as something we
must conquer; but it can also be viewed as something we must live with. It is
and is not part of our being inasmuch as it is and is not part of ageing or, quite
simply, living.
It all depends on what we mean by “dementia” in the first place. As
an organic disease of the brain it is something we do well to try to prevent and
treat if we can. As forgetfulness and mild cognitive impairment it is maybe
something we should live with. There is a significant tension between these two
thoughts, but that is a manifestation of the standing of these phenomena in
the warp and woof of human life. Dementia-in-the-world has to be seen
broadly, where biological changes are seen alongside evaluative judgments
and psychosocial determinants of disease.
Dementia-in-the-world, therefore, should elicit our deep solicitude. We
are interconnected. The dementia of the Other is my dementia too: if I am
to live authentically I cannot ignore it. Indeed, this is no different from any other
condition that affects humankind, except that dementia affects aspects of
the self in a particular way. Nevertheless, the ubiquitous threat and
challenge posed by dementia means that compassion – the ability to suffer
37 M. Heidegger, Being and Time (trans. J. Macquarrie & E. Robinson), Malden MA, Oxford and
Carlton (Australia): Blackwell, 1962). First published as Sein und Zeit in 1927.
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with – should be a natural reaction. Our solicitude should bind us together in
a type of solidarity (Nuffield Council 2009) 38 . Dementia affects us all in one
way or another. Solidarity requires a societal response. People with dementia
are still citizens who should enjoy the rights and respect inherent to
citizenship. Dementia-in-the-world is a device to emphasize the complexity of
the standing of people with dementia as beings of this human type thrown into
the multifarious ways of existing qua human beings. And, in addition,
dementia-in-the-world suggests the importance of our interactions on the
basis of our inherent interconnectedness and interdependency, which must
reflect both our sense of solidarity and our natural solicitude for other
human beings.
The view of dementia encouraged by the notion of dementia-in-the-world is
a broadening one: it refuses to be reductive; it looks to the thing in itself,
acknowledging the impossibility of fully encompassing that which it is, but
in the hope of shedding light on it; it embraces the world as a constitutive
feature of dementia; it gives a perspective on the surround, on the notion of
Being-with, on the need for solidarity… (Hughes 2011, p.218) 39 .
Conclusion
The relevance of ethics and moral philosophy to dementia care is quite
clear. But in pursuing this I think I have shown how ethics cannot simply rest at
the level of principles and guidance. Ethical reflection raises philosophical
concerns. In addressing such concerns we get a feel for the simultaneous two-
way traffic between philosophy and practice. For, the reality of practice, in which
we co-create spaces of meaning, is deeply philosophical. And it is deeply
philosophical because of the nature of personhood, which underpins many of
our ethical concerns.
When we turn to a subject that seems more abstract and abstruse,
such as the normativity of intentional mental states, there is a similar
conclusion. It transpires that normativity is maintained in the world as a
constitutive, immanent and irreducible feature of the practices that make up the
world, that is the human world. Seeing our mental states as deeply embedded
in the world demonstrates to us that mental problems are not to be viewed too
narrowly, but must be understood broadly in the context of a broad
understanding of what it is to be a person. The human person perspective on
the world is one that is not circumscribed: it brings in everything that might be
relevant for the individual.
Philosophical reflection is relevant, therefore, because it broadens our view of
the world. As a consequence, from the human person perspective, dementia
38 Nuffield Council (2009). Dementia: Ethical Issues. London: Nuffield Council on Bioethics.
Available at http://www.nuffieldbioethics.org/dementia [last accessed 24th May 2014].
39 J.C. Hughes, Thinking Through Dementia, p.218.
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becomes dementia-in-the-world, where nothing is ruled out as irrelevant,
where the biological approach is taken seriously, but so too are the
neurocognitive, social, spiritual and aesthetic approaches. In dementia, our
being as human beings is critical. Philosophy can lead us to consider our
being-in-the-world and the implications of this for clinical practice. In a sense,
the relevance of philosophy is that it can reveal to us afresh the relevance of
clinical practice as a humane and human endeavor.