Feb 13, 2012

Compassionate Care, Dementia in the 21st Century

Each time we approach a deeply forgetful person with a kindly tone of voice, a reassuring facial expression, and call them by name with a smile we are participating in an intervention that is as significant as any biotechnical one of which I am aware.

By Stephen Post
Dementia in the 21st Century
It is the compassionate carers who remain the best hope, and who serve as antidote to violence and Machiavellian values.

Carers are the beacons of hope to be acknowledged and celebrated in their depth of commitment. They sway the social balance toward goodness not with single great acts of love but rather with daily small actions done in great love. They model for the human capacity to accept, affirm, and connect with the deeply forgetful.

Note: Compassionate Care is one section of a larger article, Five Sources of Hope for the Deeply Forgetful: Dementia the 21st Century. We will publish the aritcle in full later this week.

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The dehumanization of medical care is everywhere.

Can we have the unflinching self-awareness, empathic skills, and gratitude for the privilege of caring for the deeply forgetful that exemplifies the healing art? The goal of every encounter with a person who is deeply forgetful should be primarily these three things, worth of repeating: accept, affirm, connect. And this is basic to all healthcare under all conditions, however much we may tend to forget about the nature of a healing relationship.

It is our dignity that is at stake.

We should question the increasing powers of biotechnology with regard to the modification and supposed “enhancement” of human nature itself, for such does not by any means ensure the kind of self-improvement of heart that rests at the very center of human dignity. Botox, anabolic steroids, genetic modification to make us faster and stronger, human growth hormone to make our children a little taller (after daily injections over several years), and the promise of a fountain of youth do not strike me as contributing to our human dignity. Rather, our dignity as human beings is already ours to claim when we treat another person with love as expressed in celebration and attentive listening, creativity and helping, loyalty and respect.

Etymologically, the English word derives from the Latin dignitas, meaning honor, elevation, and worthiness. We need to preserve our own dignity and can only do so as we conserve the dignity of the deeply forgetful.

The first principle of love for persons with cognitive disability is to reveal to them their value by providing attention, concern and tenderness. Any experienced carer knows that the person with dementia, however advanced, will usually respond better to someone whose affect is affirming in tone.

Emotional, relational, aesthetic, and spiritual forms of well-being are possible to varying degrees in people with cognitive deficits.

There is a "culture of dementia" that is useful in appreciating the emotional and relational aspects of quality of life. There are indicators of well-being in people with severe dementia: the assertion of will or desire, usually in the form of dissent despite various coaxings; the ability to express a range of emotions; initiation of social contact (for instance, a person with dementia has a small toy dog that he treasures and places it before another person with dementia to attract attention); affectional warmth (for instance, a woman wanders back and forth in the facility without much socializing, but when people say hello to her she gives them a kiss on the cheek and continues her wandering).

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Jean Vanier, founder of L’Arche, provided me with two stories about the power of love in the lives of the cognitively disabled, and the transformations that those around them sometimes undergo:
“The wife of a friend who was a wealthy, prosperous business man, developed Alzheimer disease. He decided not to put her in an institution but to care for her at home. He feeds her, gives her a bath and looks after all her everyday needs. Not long ago he confided to me: ‘I am becoming more human.’ His heart has been awoken. His grandson told a friend of mine: ‘Yes, my grandfather has changed totally. He used to be so rigid and difficult. We always had to watch how we behaved at meals. Now, during the meals, his wife says all kinds of funny things that don’t make much sense. And Grandpa is so gentle and kind with her and with us all.’”
And another story from Carol Sifton Bowlby of Canada:
“We can choose to lament, to be lost and lonely, or we can choose to seek out the joy in what we do and let it renew our resolve. Sometimes joy finds us. It may take the form of a fleeting look of recognition and warm embrace from the loved one with dementia. It may take the form of shared laughter from a silly mistake, shared words from a familiar prayer, or shared lyrics from an old song sung just off key. Sometimes joy is present but we are too busy to recognize it. (4).
These are stories about people drawing closer to those with cognitive disabilities and, in the process, being reawakened to a life of greater love.

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