Dec 12, 2017

A Spiritual Cultural Evolution Dementia in the 21st Century

Imagine a world in which caring for the deeply forgetful is deemed a privilege and a trust.

Imagine a world in which caring for the deeply forgetful is deemed a privilege and a trust.

By Stephen Post
Alzheimer's Reading Room

I do believe that we will see a spiritual-cultural shift away from the ideology of “hyper-cognitive values” that has regrettably blinded us to the enduring selves underlying the deeply forgetful.

How can we encounter the deeply forgetful outside of hyper-cognitive ideologies?

How can we bear witness to the reality that persons with this cognitive disability possess inherent qualities, and create a culture where all are welcomed and celebrated regardless of cognitive limits and vulnerability?
It is ethically important that the person with dementia not be judged by “hyper-cognitive” values.

The self is not cognition alone, but is rather a complex entity with emotional and relational aspects that should be deemed morally significant and worthy of affirmation.

Rationality is too severe a ground for moral standing, allowing if not requiring the relational and emotional deaths of many individuals who may, in fact, continue to enjoy simple pleasures despite their lack of rationality.

The fitting moral response to people with dementia, according to classical western ethical thought and related conceptions of common human decency, is to enlarge our sense of human worth to counter an exclusionary emphasis on rationality, efficient use of time and energy, ability to control distracting impulses, thrift, economic success, self-reliance, self-control, "language advantage," and the like.

The perils of forgetfulness are especially evident in our culture of independence and economic productivity, that so values intellect, memory, and self-control.

Yet emotional, relational, aesthetic, and symbolic well-being are possible to varying degrees in people with progressive dementia.

In general, quality of life is a self-fulfilling prophesy. If those around the person with dementia see the glass as half empty and make no efforts to relate to the person in ways that enhance his or her experience, then quality of life is minimal.

An adequate ethical theory or moral life requires us to include everyone within the moral domain of care and respect.

This universalism asserts that all human lives have equal moral standing with the exception of those who are dead by brain death criteria. There is a troubling tendency, however, to exclude human beings from moral concern while they are still among the living. This occurs most frequently when we differentiate “them” from “us,” depersonalizing and dehumanizing others for reasons of race, class, gender, age, culture, or cognitive disabilities, including forgetfulness.

Some years ago I coined the term “hypercognitive values” in arguing against so-called ethicists who diminish the moral status of the cognitively impaired. The cognitively limited fall outside of the protective range of “do no harm,” they argue, although their deaths should be painless.

We make too much of cognitive dexterity. The great Stoic philosophers achieved much for universal human moral standing by emphasizing the spark of reason (logos) in us all. This is, however, an arrogant view in the sense that it makes the worth of a human being entirely dependent on rationality, and then gives too much power to the reasonable. Reinhold Niebuhr wrote of the tradition from the Stoics that has proceeded without interruption into Kant, Locke, and modern bioethics that “since the divine principle is reason, the logic of Stoicism tends to include only the intelligent in the divine community. An aristocratic condescension, therefore, corrupts Stoic universalism”.

We easily demean those whose memory has dissipated by treating them with indifference or even with cruelty. We act as if they aren’t there.

Once (less than seven decades ago), the step between psychological and physical elimination proved notoriously short. As part of the Nazi extermination program, known as T-4, persons with dementia, selected for hypothermia experiments, were taken out of German mental asylums and left to freeze in the cold overnight air. Memory is a form of power. We sometimes mock and ignore those who have lost such power, sending the message that their very existence rests on a mistake. What of voluntary pre-emptive assisted suicide? Here I am unwilling to be too critical, though I am no advocate.

The rationality that philosophers select for moral considerability is generally limited to one property. They define rationality procedurally as an ability to do certain things, such as act consistently based on clear thinking, arrive at decisions by deliberation, envisage a future for oneself, and so forth. But, in fact, rather few of us go through life with consistent rationality.

We act on emotion, intuition, impulse, and the like. We go through periods of considerable irrationality due to variation in mood. Rationality as a decisional capacity is not morally important. It is rationality as a source of self-identity that matters – i.e., “who” we are rather than “how” we proceed.

Our task as moral agents is to remind persons with dementia of their continuing self-identity, of who they are.

We must serve as a prosthesis, filling in the gaps and expecting that now and again the cues we provide will connect with the person and perhaps even elicit a surprising verbal or affective response. In other words, our task is to preserve identity.

It is for this reason that many units for the deeply forgetful in nursing homes will post biographical sketches on the doors of residents, or family members will remind a loved one of events and people who have been meaningful along life’s journey. 

We must see the glass of self-identity as half-full rather than as half-empty, and understand that metaphors such as “gone” or “husk” are dehumanizing and empirically suspect.

Imagine a world in which we all recognize the most forgetful, vulnerable, weak, unpresentable and dependent as indispensable to our living good lives.

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Imagine a world in which gentleness, patience, and calming care triumph over hostility and violence.

Imagine a world in which caring for the deeply forgetful is deemed a privilege and a trust. 

Imagine that we human beings can really live together in unity, peace and acceptance, and in which the walls between the rememberers and the deeply forgetful fall. Imagine a world where busyness gives way to presence, hyper-cognitive arrogance to hospitality.

In his classic work, Dementia Reconsidered: the Person Comes First, Tom Kitwood’s definition of love within the context of dementia care includes comfort in the original sense of tenderness, closeness, the calming of anxiety, and bonding.

Kitwood defined the main psychological needs of persons with dementia in terms of care or love.

He drew on the narratives of caregivers to assert that persons with dementia want love, “a generous, forgiving and unconditional acceptance, a wholehearted emotional giving, without any expectation of direct reward.” 

The first component of love is comfort, which includes tenderness, calming of anxiety, and feelings of security based on affective closeness. It is especially important for the person with dementia who retains a sense of his or her lost capacities.

Attachment, the second component of love, includes the formation of specific bonds that enhance a feeling of security. Inclusion in social experiences, occupation in activities that draw on a person’s abilities and powers, and, finally, identity are important components of love.

Love is a resurrection-of-a-sort for the disabled, and it is equally so for ourselves. We shed grace on the lives of those who receive as well as on those who give.


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Best-selling author of The Hidden Gifts of Helping (2011), Stephen Post is Director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University. His book
The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying was selected as a “Medical Classic of the Century” by the British Medical Journal (2009). He received the Distinguished Service Award from the National Board of the Alzheimer’s Association “In recognition of personal and professional outreach to the Alzheimer’s Association Chapters on ethics issues important to people with Alzheimer’s and their families” (1998).

Original content Stephen Post, the Alzheimer's Reading Room

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