Caregivers Overwhelmed By Alzheimer’s Disease

We know a lot about Alzheimer’s disease. For example, 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 over 5 million Americans are currently living with Alzheimer’s. But there are some important things we don’t know—and I am not referring simply to the still-elusive cure for the disease. I am also talking about new insights familiar to experts in dementia care, which have not yet reached many of the 15 million Americans caring for a loved one with the disease.

In dementia care, what we don’t know can hurt us.

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 and her colleagues have known and cared for hundreds of patients, and this wealth of experience has provided insight on how to craft a better life for both patients and caregivers. First and foremost is the realization that a dementia diagnosis is not the medical equivalent of falling off a cliff. If we stay hopeful and focus on what matters most, she says, we can do a lot to help patients reach their peak every day.

To provide the best possible care for dementia patients, we need to get past some important misconceptions about the disease. One is that Alzheimer’s, which accounts for about 80 percent of dementias, is strictly a disorder of memory. In fact, it usually involves many mental processes, including the abilities to focus attention, organize thoughts, and make sound judgments. Another is the notion that Alzheimer’s is strictly a disease of cognition. In reality, it can affect emotions and personality, as well. But perhaps the biggest misconceptions Theresa encounters regards a dementia diagnosis as the end.

Naturally, being diagnosed with dementia represents an important change in life, but it is certainly not a death sentence. Some patients diagnosed with Alzheimer’s disease will live another 15 and even 20 more years, though others will progress more quickly. Nor does it represent the end of all that is good in life. Theresa and her colleagues have learned a crucial lesson that needs to be disseminated to caregivers everywhere: “We should dwell less on lamenting what dementia patients are incapable of and focus more on bringing out and celebrating what they are capable of doing.”

Like anything else in medicine, helping someone suffering from dementia requires understanding, compassion, and dedication. Care needs to be tailored to each patient’s personality, life history, and stage in the development of the disease. When this is done well, new possibilities open up. What might have been an atmosphere of regret and hopelessness centered on the disease’s relentless progress can be transformed into an upbeat outlook that celebrates abilities, rejoices in moments of recognition, and looks to the future with hope.

Perhaps 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 father 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. The ritual seemed not only to 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 to bring out the best in a person. 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, amazed and transfixed. Inexplicably, he was intoning in a clear, sonorous tenor voice two verses of an old Baptist hymn, “God Will Take Care of You.” Every eye within earshot welled with tears each time he launched into the refrain.

Ritual–in this case, as in others, 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.

We simply do not know what is transpiring in the mind of another person. It is all too easy to place all the blame on the dementia patient, lamenting and even despising their disability. But were we to do so, we would be letting ourselves off the hook a bit too soon. Awareness, understanding, and affection are not merely the outputs of some inner dynamo. They also emerge in response to what others do, say, and feel. In some cases, unresponsiveness may say less about a patient’s disability than a failure on our part to offer something worth responding to.

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Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease.