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 really 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.