Communicating about Alzheimer's Disease
Roughly 5.3 million United States citizens live with Alzheimer's disease, and diagnoses of the illness are expected to double in the next 20 years. As Alzheimer's statistics grow at alarming rates, family members and other caregivers often struggle to effectively communicate with and about Alzheimer's patients. Many of the metaphors used to describe the illness, its patients, and communication between patients and caregivers dehumanize people living with what is now the most common form of dementia. Effective Alzheimer's disease communication may significantly improve the quality of life for both Alzheimer's patients and the men and women who provide them with care.
Dr. Ragan Fox, a Communication professor at California State University, Long Beach, investigated how metaphors may inhibit and promote communication about Alzheimer's disease. Some metaphors that dominate conversations about Alzheimer's disease misrepresent Alzheimer's patients and how the disease functions. When discussing Alzheimer's, many people compare the sickness to a dense fog and circuit breakers that turn off brain activity, and its sufferers as missing people and living ghosts. These one-size-fits-all metaphors focus on death and destruction, and fail to accurately describe and represent many emergent forms of Alzheimer's disease. Alzheimer's characterizes any combination of a long list of symptoms. One patient, for example, might hallucinate but remain communicatively active and relatively cheerful, while another may be catatonic and uncommunicative. The disease, therefore, requires a more fluid metaphor that highlights its variations and nuances.
After 10 years of interaction with Alzheimer's patients and their caregivers, Fox relies on a mosaic metaphor to promote clearer understandings of the illness and its sufferers. In the art world, mosaics are decorative images made from small pieces of glass, rock, and other materials. At-home artists tend to make mosaics out of broken plates and other ceramic materials. One might place numerous yellow fragments in a circular shape to construct a sun, and various shades and shards of blue to build the fractured image of a sea. Standing in close proximity to a mosaic reveals cracks and imperfections; but a little bit of distance transforms the seemingly disjointed materials into a bigger, recognizable, and unified picture.
Thinking of Alzheimer's as a mosaic illness acknowledges the numerous component parts, or symptoms, that comprise the illness' bigger picture. Family members and caregivers may use this metaphor to better comprehend why different patients may display radically different symptoms, or why individual sufferers have their own unique Alzheimer's mosaic.
Mosaic metaphors may also be used as an interpretive strategy to enrich interpersonal communication between Alzheimer's patients and their caregivers. Fox suggests that people with Alzheimer's rely on conversational mosaics in their day-to-day interactions. A person with Alzheimer's depends on numerous bits of conversational expectations to communicate. These component pieces of interaction include memories that can be accessed at any given moment, the ability to accurately read emotional cues, and adherence to the structural norms of conversational behavior, like turn-taking and asking questions. Like artists who construct mosaics, people with Alzheimer's pull together pieces of typical interaction, place them together, and assemble a larger conversational picture.
Many people with the illness are quite adept at engaging in socially polite conversation and may repeatedly ask about the current events of a caregiver's life. One patient featured in Fox's study repeatedly asked his family caregivers about the “new and exciting” events in their lives. The man's adult children claimed that the question served as their cue to end conversations, because, from one moment to the next, he was not able to retain the new and exciting events they shared. Because Alzheimer's disease typically restricts a person's ability to recall short-term memories, discussing current events in the life of a caregiver ultimately hinders communication between conversational participants. When a person with Alzheimer's disease struggles with a particular memory or begins to myopically focus on the current events of his or her communication partner, caregivers can redirect the conversation, allowing the patient to access more pieces of an alternate discussion topic, or new conversational mosaic.
Mosaic metaphors can also help family caregivers reconcile competing images and memories of loved ones who have been diagnosed with Alzheimer's disease. Who is an Alzheimer's patient? Once patients are in the mid-to-late stages of the illness, are they the same person they were before their dementia? Competing notions of patient identity are made all the more confusing for family caregivers when a person with Alzheimer's has sudden, inexplicable moments of lucidity. This back-and-forth—between senile and lucid—may prove particularly unnerving for family members, who must then reconcile the past and present identities of Alzheimer's sufferers.
Competing memories also emerge when family members communicate with one another about caregiving decisions. Fox found that some family caregivers reference competing memories of a patient to justify their respective caregiving stances. Because Alzheimer's patients are frequently incapable of making healthcare decisions, family members are placed in the difficult position of determining the best course of action. Communication among family caregivers may break down as they try to determine what the patient would have wanted and what forms of care are realistic given economic constraints. Family members then pull from different memories, or constituent parts of a mosaic memory, to justify their respective points of view. Understanding a patient's identity and memory in terms of a mosaic may help caregivers as they attempt to reconcile competing conceptualizations of their loved one's identity, personality, personal history, and healthcare wishes. Talking to a loved one in the earlier stages of the illness about future care decisions, or advanced directives, provides an opportunity for families to collect an important piece of their loved one's caregiving mosaic. Retroactive sense making diminishes a patient's agency and contributes to breakdowns in communication among family caregivers. Pro-active communication meets these challenges head-on.
The metaphors we utilize to discuss Alzheimer's disease influence how we come to know, treat, and talk about people who have the illness. Alzheimer's patients are not lost people or the walking dead; and Alzheimer's disease is much more complex than a light switch that turns off in a person's brain. As medical technologies and pharmaceutical advancements continue to extend the duration of human life, finding productive and healthy ways to discuss aging and dementia become increasingly important.