We know a lot about Alzheimer’s disease.
We know that it is the sixth-leading cause of death in the United States.
We know that one in three seniors dies with some form of dementia.
And we know that more than five million Americans are currently living with Alzheimer’s. But there are some important things we don’t know.
I recently spoke with Theresa Klein, an occupational therapist at Augustana Emerald Crest Assisted Living in Minneapolis, who has been caring for people with dementia for 23 years. Theresa’s most important insight into dementia care concerns the power of ritual, and it came from the care of her own grandfather. As his dementia progressed, he became less alert and more confused. A devout Catholic, however, he kept attending weekly Mass.
Though Theresa’s grandfather was nearly mute much of the time, at services he happily recited familiar prayers and joined in the hymns. Each time the service began, he would become calmer and less agitated, less confused and more focused. Not only did the ritual evoke special memories and feelings—it brought him back, as well.
Theresa and her colleagues now invite patients to participate in such rituals on a regular basis. One of the key words here is “participate.” They do not passively sit back and watch or listen as someone else recites prayers and sings hymns. They are invited and encouraged to join in the service. Some, typically those in the early stages of their disease, are able to participate fully, even engaging in discussions about the meaning of what they are doing. For others at later stages, participation may mean singing, ringing bells, or simply tapping feet and clapping hands.
One recent case demonstrated the power of such rituals. Martha was a silver-haired, 82-year-old dementia patient whose adult daughter visited her in her memory care facility every day. Usually, Martha spent most of her day asleep in bed, and when she sat in a chair, she tended to slump to one side, seemingly oblivious of her surroundings. But within a few minutes of the start of a service, she would sit straight up, look at her daughter, and join enthusiastically in the prayers and hymns.
On more than one occasion she even told her daughter that she loved her.
The implicit expectation that dementia patients will somehow withdraw and shrivel up can become a self-fulfilling prophecy. Martha had been in and out of hospice three times. Three times her daughter had prepared to say goodbye to her for the last time. The key in such cases is to avoid the mentality that the most anyone can hope is that patients will simply keep quiet and leave everyone alone. As Theresa says, “We need to avoid treating the Marthas of the world as just patients we do things to. We must never forget that they are also human beings we can do things with.”
A physician friend recently told me a similar story. He and a colleague had just emerged from a very difficult conversation with a young cancer patient whose disease had progressed so far that she understood very little of their conversation. They had gone out into the nursing station to write notes in her chart when he noticed an elderly gentleman sitting in the hall in a wheelchair. Clearly in the advanced stages of dementia, he slumped to his side, oblivious to what was going on around him, held upright only by a restraining belt clutching him to the chair.
To everyone’s amazement, just as they were sitting down, the old man burst forth in song. Everyone immediately stopped what they were doing, transfixed. Inexplicably, he was intoning in a clear, sonorous tenor voice two verses of an old Baptist hymn. Every eye within earshot welled with tears each time he launched into the refrain:
God will take care of you,
Through every day, o’er all the way;
He will take care of you,
God will take care of you.
Ritual—in this case a familiar hymn—had transformed an otherwise hopeless recipient of care into someone quite different. At least for those few minutes, he had become a human being capable of reaching out and caring for others, a beacon of light and joy to everyone.
Reprinted from The Atlantic with permission.
Dr. Richard Gunderman is Chancellor’s Professor of Radiology, Pediatrics, Medical Education, Philosophy, Liberal Arts, and Philanthropy at Indiana University.