It can be devastating to provide dementia care to a loved one who is slowly losing the ability to express thoughts and feelings or to exercise free will and unencumbered movement. With dementia, the ability to learn new things diminishes; judgement falters; and logic eludes the best efforts. As a result, frustration, denial, avoidance, outbursts, and depression may occur.
Caring for someone living with dementia calls for a great deal of patience and sensitivity. There may be unfounded jealousy, unjust accusations, a refusal to bathe or take medications, and other ways of acting out. To caregivers, these behaviors—often inappropriate and self-defeating—are frustrating. We might find ourselves trying to argue a point or correct a behavior, but all to no avail. Inevitably, being around a person living with dementia can itself be emotionally overhwhelming.
Recognize that the Brain Changes with Dementia
When caring for someone living with dementia, compassion is key. There is no way for dementia caregivers to understand the perplexity experienced by a person affected by dementia. We can only imagine how frightening it must be to lose the thread of conversations, be confounded with simple math, or struggle with routine tasks. It is no surprise that growing difficulties in communicating, computing, and problem-solving can create tremendous frustration and anger.
The fact is, a person living with dementia cannot “try harder”. Overcoming the neurological damage is not a matter of will. Consequently, caregivers must accommodate themselves to a new version of the person they used to know. It is wise to take the view that the individual with dementia is doing the best he or she can. It falls to the caregiver to exercise come clinical objectivity, to decode clues and signals, observe mood shifts, and detect irritants. Look for “triggers” of unsuitable behaviors and seek conditions that soothe and pacify to develop strategies to minimize frustration and make the most of each day.
How to Communicate During Earlier Stages of Dementia
It is useful to think of dementia behaviors are coping mechanisms. In the early and moderate stages of the disease, a person may be aware that he or she is supposed to understand and will try to maintain a façade that “all is well”. She may answer questions with a casual dismissal, vague noncommittal response, aggression, rudeness, or outright fabrication. Certainly, underlying this behavior is the fear, embarrassment, and anxiety that “all is not well”.
The logical reaction is to remind, correct, and cajole. However, asking questions such as “don’t you remember…” or “don’t you recognize…” assumes the ability to learn or to reliably retrieve memories. Efforts to keep a person from “slipping away” are ultimately futile. A person with dementia cannot master new concepts, relearn, apply logic, or change behaviors.
How to Provide Dementia Care During Later Stages
As brain functioning deteriorates, caregivers must adjust their behaviors. Rather than warning of a hazard (“The stairs are steep!”) or chiding (“You haven’t eaten all day.”) caregivers have to exercise more vigilance, provide gentle guidance and keep questions simple. Understand that responses will not necessarily be reliable and that even a “yes” or “no” answer may not indicate true understanding.
Again, alter expectations as cognitive functions further decline. A friendly tone of voice and upbeat facial expressions may still exert a calming influence, but eventually even “go slow” strategies—making eye contact before speaking, repeating simple phrases, and using gestures—fail to produce a meaningful reaction.
Fortunately, the power of music remains, and, even in the final months, music that was familiar in earlier years can stir emotions, decrease undesirable behaviors, and even stimulate conversation. It is the final consolation that when words and lucid thoughts fail, music can still stimulate primal joy.