Dementia patients not 'empty shells'

Section: Opinion
By: ANDY HO
Publication: The Straits Times 11/04/2013
Page: A28
No. of words: 924

BY ANDY HO
SENIOR WRITER

ABOUT 28,000 Singaporeans aged 60 and over have dementia. That number is projected to rise to
80,000 by 2030.

This scourge involving an irreversible degeneration of the brain robs the patient of his cognitive capacity,
memory and personality so he becomes unable to care for himself. Over time, he may no longer
recognise loved ones.

Recently, Health Minister Gan Kim Yong highlighted initiatives such as raising the capacity of clinics for
the psychological testing of memory by at least 60 per cent by 2016.

While such policy moves are needed, we also need to change the callous way in which dementia
patients are widely regarded and pictured as "empty shells". Kin, caregivers and health-care workers
alike tend to describe the patient as losing his mind as the disease progresses.

We ignore not-so-nice shells on the beach. So dementia patients conceived as empty shells won't be
taken seriously either.

Why this tendency to view dementia patients as mere shells?

Perhaps some believe that "I think, therefore I am". These folks assume we have a body and a separate
mind, so that when the mind fails, there is just the body left as a shell.

Still others think that the making of all meaning occurs inside the brain only. They say that when the
brain can no longer make meaning, the self has dissipated, leaving behind a mere shell.

But the patron saint of the empty shell myth is English philosopher John Locke. In his 1690 treatise, An
Essay Concerning Human Understanding, Locke defined a person as a "thinking intelligent being" who
"can consider itself as itself, the same thinking thing, in different times and places".

For him, self-awareness was the essence of personhood. Since at different times and in different places,
the dementia patient is no longer self-aware, the Lockean would say he has ceased to be a person, with
just a shell that remains.

But if you parse the Lockean view, you would notice that the self is solely the product of one's reflection.
But for there to be a self to reflect upon, the self must pre-exist any such reflection.

So you could argue that Locke was sorely mistaken. The self existed before the capacity for self-
reflection: that is why the infant who is not yet capable of self-reflection is already a person.

One prevailing school of thought says that the infant is already a person, because he can already
interact with the external world, especially his caregivers. So the self is not just something housed inside
the head but is, at least in part, formed in interaction with the external world.

If we accept that interactions with people are critical in the formation of the self, then the personhood
and identity of the dementia patient is not necessarily lost even as his capacities diminish and his
autonomy becomes impaired. Instead, his selfhood remains intact when embedded in those
relationships.

My self-identity as a person is found not only in solitary self-reflection, but also in the interlocution I have
with significant others at home, at work and in social microworlds. My life narrative is inextricably
intertwined with theirs. That's why human beings aren't atomistic individuals but relational beings.

So if a patient loses more of his cognitive capacity to remember and retell his own life story, kin and
caregivers can continue to give utterance to it through their second-person perspectives.

He continues to be the main character in his own life story, which the rest of us can continue to tell, so
his identity will still go on in the world. It is true his identity may be altered: He is no longer a fully self-
autonomous person, but he remains a person of worth, struggling to sustain self-dignity and self-esteem.

But he remains no less or more a person than before dementia affected his brain.

Those of us who care for people with dementia have a special responsibility to engage and interact with
the patient, and to tell and retell the story of his life, to continue to embed and anchor his life within our
own life narratives.

This can be painful but when the patient is lucid, it can be joyful, emotional and meaningful because
the patient is grounded in a shared past history with us.

For too many years, whether in psychiatric care or public discourse, we have marginalised the
personhood of those with dementia. While dementia tragically causes brain function to fail, it is just as
tragic when "we" the patient's significant others come to regard him as a mere bundle of disease
and deficits, a mere shell of what he used to be.

When we view him as mere pathology, we trivialise the patient's life. But if we view him as the same
human we have always known who has simply begun to lose his memory for some things, we put him
back where he always was, in the embrace of our web of relationships.

His capacity to laugh and enjoy us is not completely cut off. In lucid moments, he can still express his
thoughts and memories meaningfully. There are other moments also when he may be able to
communicate with us non-verbally by reaching out to touch us, say.

These moments remind us of his humanity and the sanctity of life, that he is no empty shell.

We need to treat him as such.

andyho@sph.com.sg

When we view him as mere pathology, we trivialise the patient's life. But if we view him as the same
human we have always known who has simply begun to lose his memory for some things, we put him
back where he always was, in the embrace of our web of relationships.