Saving Face: Preserving the Person in Alzheimer’s disease

The most clearly-recognizable human part.  That screen through which we project to the world.  The canvas of flesh onto which colors of heart and mind are displayed.  A malleable mask which portrays the full range and depth of human feeling.  That flag unfurled which bears our identity to those who seek to see and know.

The face.

Such importance was given the face in human neurologic development that large portions of the brain are functionally involved in facial recognition and interpretation.  The mere image of a familiar face upon the retina awakens extensive networks of neural pathways stretching from occipital to frontal lobes, deep portions of the temporal lobes, thalamus and brainstem.  Emotions are aroused, sensory memories awakened, self is distinguished from “other,” constraints of time and space are lifted, and we suddenly find ourselves in places we have been before.  Time travelers in the capsules of our minds, we pass through clouds of childhood excitement, mists of mature relationships, aromas of mealtime gatherings; we absorb the fading phrases of conversation, stir once-shared affections, and grieve losses…all because our minds perceive a face.  A face that speaks passionately without a uttering a sound.

Faces change with age, but are still recognizable.  Though furrows and age spots camouflage, light behind the eyes still casts patterns seen before.  Something innate tells us we will always know those faces known well, no matter how life may make them over.

But what do we do when the face no longer speaks, when the mask becomes detached, when no amount of effort can discern patterns from the “eye beams,” patterns that mean what they have always meant to us?

Many of us who have personally encountered Alzheimer’s disease have asked such questions.  We have stared into the face once-known, now silenced by a muting hand.  We have trained all senses to perceive familiarity’s faintest trace, to glimpse some fleeting flame of the one we knew (in the way we knew them before).  Rejoicing in each momentary return, we resolve to try even harder tomorrow.  We can bring back more of them if we strive hard enough.

But the harsh reality is that we can’t do what we long to do, no matter how much effort we extend.  The person with Alzheimer’s disease can’t be brought back in the same way we have been accustomed to knowing them.  That face, now lacking the spark which kindled torchlight in the caverns of our mind, cannot through efforts of our own be ignited again with a familiar luminescence in which we have been used to basking.  So we adjust our expectations and make peace with reality so that some unnecessary suffering may be avoided.

Does this mean the light behind the eyes has gone out?

Emphatically, no!

At this juncture it becomes critical for us to broaden our concept of “face.”  Face, still being that most familiar of human parts, that fleshy flagship first encountered when we seek to know another, must become for us “façade,” connoting a more superficial significance.  Recognizing façade as a mask over what lies beneath, a “persona” as in classic theatre, we must peer beneath this covering to the true “face” of the one we have known, and still know.  “Face,” considered thusly, becomes a cognitive construct, an abstraction created by our minds.  Then there can be a disconnect between the face that projects to our retinas when we look upon a person with Alzheimer’s disease and the “face” our mind creates when we think of this one.  When we visualize this familiar face internally, we stimulate those neural circuits afore-to alluded, producing the collective experiences through which we know this person.  And this happens despite the new façade, created by Alzheimer’s disease and laid upon the true face of the one we know and love.

In truth, we help this person “save face” through making a gesture in our minds by which we intend to preserve their dignity and honor.

But how do we translate our cognitive constructs in such a way as to make this person aware we are trying to build them up?  How do we promote their dignity and life quality through such intangible actions as the creation/preservation of a mental image?

We do this through strengthening our relationship with them; through entering into their world of experience as totally as we can; through validating them there, and through bearing to them the banner of their true “face” in the mirror of ourselves.  Only this image in the mirror they recognize as their own.

We must hold their hand ever more tightly as they appear to grow more distant from us in their existence.

Persons afflicted with Alzheimer’s disease, having developed some of their mature pre-disease identity through vocational accomplishment and cognitive-empowered sociocultural advancement, now must seek self-preservation in relationship with others…others who care, who remember, and who have their best interests at heart.  In short, they must now find identity through relationship.

It is within this relationship that what I will call “translational life enrichment” must occur.  Because we know them, because they have left an indelible imprint on our minds, because we still see clearly internally who they are to us, because we can train our eyes to peer past the unspeaking façade of Alzheimer’s and follow the inner warmth we have felt before and know to be present inside, we must bring about the translation of our mental constructs into actions which build up the personhood of those with Alzheimer’s disease.  We who are professional caregivers must do this even for those we don’t know but to whom we are providing assistance.  First, we must care enough to learn their life stories.  Then we must validate the good, essential and true of what we learn, so that the end result is the promotion of dignity and quality of life.  Even those who have known us only briefly can find an element of their identity through relationship with us, provided the experience is a positive one for them.

We have to construct their “face” within our consciousness through exerting the effort to know them as completely as we can, then show that face back to them, in all its complexity and depth, so that they may recognize it as their own.

In no way do I mean we should be nostalgic in our appreciation of them.  Though we must focus a portion of our affections on the person we discover or know them to have been before the illness began, it is essential that we validate the person they are in the present.  We have to learn to love and appreciate what they are in their now.  Otherwise our efforts to up build will have the unintended consequence of abasing who they are now through validating only who they were in the past.  I believe most people with Alzheimer’s disease are aware, at least partially and intermittently, of their losses.  Remember, they cannot return, and we cannot make them do so.

We must determine to partner with them in their present reality, to appreciate what they are there, and to identify and preserve enough of their core and historical identity in which to dip a brush and paint their colors across the canvas of current life.

It falls on us, then, to discover, appreciate, and display for their edification the very characteristics that make them who they are in the present time.  We must help them preserve personhood.  We must help them save face.

Because they can no longer speak in “native” language, and because our new cognitive constructs of “face” depend to a certain degree upon our understanding of who they have been and who we know them to be at present, we have the obligation to find a language through which to understand, as truly and deeply as possible, their essence.  Alzheimer’s disease affects linguistic expression, thereby laying a communication blockade. But, to which we have alluded already, the person with Alzheimer’s still has much to say.  I assert that the heart of the individual, rich in elemental composition, lies minimally affected by the disease.  The fundamental energies of the core seek channels for expression; collaterals, to invoke a cardiovascular analogy.  And when these enduring self-elements are liberated, the person’s “face” becomes enlivened; if not literally, then within our own mental constructs. We caregivers, through whom those with Alzheimer’s may discover more and more of their identity as the disease advances, are obliged to help them find their most natural expressive avenues. By doing so, we imbue the banner of their “face” with its most characteristic and recognizable hues.

As an essential element of compassionate, person-centered care, the expressive arts represent an effective means of self-expression in those with Alzheimer’s disease.  By these I refer to art, music, poetry and other literature, dance and drama therapies.  These expressive arts therapies, often combined with reminiscence, have numerous benefits including improved communication, the fostering of relationships, elevation of mood and sense of wellbeing, reducing agitation and adverse behaviors, and respite for caregivers.  Overall, they promote dignity and improve quality of life.  They are but one of many means by which to foster personhood.

My father, Lester Potts, became an acclaimed watercolor artist in the throes of Alzheimer’s disease at a time when he was rapidly losing verbal abilities. Those who view his art marvel at a depth and richness present even in his late-stage creations.  His abstract depictions of home and family even at this late stage convince me that he was indeed “still there,” and was vibrantly attempting to make his story known to the world.  In the supportive person-centered milieu provided by the dementia daycare he was attending, Lester was handed the tools to bypass expressive roadblocks laid by Alzheimer’s disease.  Someone cared enough to try and create, in their mind’s eye, Lester’s “face.”  They laid down the essential elements of his story, gathered by peering past the façade into the center of the person…a person worthy of attention, of validation, and of meaningful and supportive relationships.  And based on what they were to know of him in his here and now, they deemed him a worthy soul with a brimming heart.  And they provided him a means of communication, a release for inner creative content.  This promoted dignity, improved quality of life, and helped to shore up his sense of self (which was becoming increasingly relational, as previously discussed).  And, low and behold, the unpredictable happened. The face shrouded in dementia’s veil quickened through new-found creativity, and brought light and color and hue and home to those all around who took the time to look…to see the authentic “face.” Lester was once again made his own standard-bearer, his own banner-carrier.  And the image lavished out was the very content of his heart and soul.

To what greater goal could we as caregivers possibly aspire than to love enough to seek the truest colors of another, no matter how deeply buried in the rags of affliction, raise them high for the wounded to see and know as their own, and pass them back to the very one defending their identity against the onslaught of Alzheimer’s disease?  I know of none.

I am reminded of the powerful photograph of the hoisting of the flag over Iwo Jima by those soldiers in World War II, tattered by the conquest, but fortified through what they knew their America to be.  We caregivers, the walking wounded, can do the same for persons fighting the battle for their minds against Alzheimer’s disease.  And just as every American whose eye perceived that poignant image symbolically clamored up to lend a hand, so the ones with Alzheimer’s disease, drawn by their own raised banner of personhood-preserved, find courage to be themselves again.

Helping them find the courage to be themselves again.  Enabling them to speak passionately without having to utter a sound. Making a gesture in our minds by which we intend to preserve their dignity and honor. Helping them find their identity through our relationship with them.  Learning to love them in their “now.”  Affirming that personhood still exists, even in the presence of Alzheimer’s disease.

Bearing the banner.  Saving face.

And, with wounded hand clutching wounded hand, we lift each other’s banners to the skies.

One thought on “Saving Face: Preserving the Person in Alzheimer’s disease

  1. As the daughter and primary caregiver of a mother who suffered Alzheimer’s I applaud and appreciate the opinions and truths shared in this post. My beloved mother has been gone over five years now and though I miss her terribly I have a great sense of peace knowing she was shown and maintained dignity throughout her life up to her last breath. She was a consummate lady..and yes treating her as such was not only the right thing to do but a true honor.

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