Caring for someone who has dementia is a uniquely stressful experience. The person may be forgetful, engage in bizarre behavior, have trouble speaking, become incontinent, fall, and have trouble eating, dressing, or bathing. He or she may even forget who you are — which can be particularly distressing for family members.
Caregivers and family members can experience various frustrations and pains along the way to the profound and obvious decline and deficit that often comes with a diagnosis of dementia, with quite a lot of trial and error while figuring out how to adjust to the constantly-changing “new normal” of dementia.
While caregivers have both practical and emotional work to do to fully prepare to care for others who have dementia, one common question underscores their most basic concern: “How do I communicate?”
Dementia as a Communication Disorder
Dementia is a disease of the brain that can profoundly affect its ability to both produce and understand language.
One of the earliest symptoms of Alzheimer’s Disease, which one of the most common forms of dementia, is having difficulty finding words, which is a sign of anomia—literally, “without a name.” This glitch in self-expression is a lot like the experience we all have — the “tip of the tongue” phenomenon — when we know what we’re trying to say, but, frustratingly, are unable to say it. The word often leaps into our brains a few minutes later when we’ve moved on from the conversation to something completely different.
One psychological screening tool often used to test for dementia is called the Boston Naming Test. In it, subjects are shown a number of line drawings, then asked to provide the common names for them. For example, when shown a sketch of an igloo, most Native English speakers can normally name it accurately in short order. However, people with dementia have different responses, such as: “Eskimo house” or “that thing those natives in Alaska live in” or “house made of ice.” When shown a line drawing of an accordion, notable responses may be: “Oh, it’s one of those oom-pah-pah band things,” or the person being tested may make hand gestures pantomiming playing an accordion.
Dementia can also affect people’s abilities to express themselves in other ways, including the related phenomena of circumstantial and tangential speech. In circumstantial speech, the speaker tends to use a lot more words when fewer will do and veers off the topic and into unnecessary detail and embellishment, but eventually gets back to the point. In tangential speech, the speaker never gets back on point. This happens a lot in dementia.
People with dementia often also lose the ability to write — which is a complex skill that involves synchrony between motor cortex, frontal lobes, visual areas, and the expressive language areas of the brain.
Dementia may also affect receptive speech, or the ability to take in and organize and understand what others say. If a nurse or a family member gives a person with dementia an instruction — for example, to take a medication, or to get dressed, or to use an assistive device — and the person fails to follow the instruction precisely, it may signal that receptive speech abilities have been affected by the disease.
Interpreting the Cues
Those who don’t understand that people with dementia have a major, disabling neurological illness that affects how they think, react, and understand the world around them may mistake their behavior as deliberate acts of defiance, or stubborn “selective listening.” The disconnect can be because the caregiver has not been educated about the realities of dementia, or it can be due to outright denial because it is certainly not easy dealing with the fact that a parent or spouse may be significantly impaired.
It is also important to realize that the more intelligent, educated, and socially polished people were before they got dementia, the more likely they will be able to cover their deficits, which adds an additional level of difficulty to the business of trying to communicate with them. For example, when communicating with a person with a sixth grade education who worked in menial jobs for a lifetime and has dementia, the level of deficit is usually obvious: the word-finding difficulties will be prominent and their confusion profound. A person with a doctorate who ran a fortune 500 company might be much more likely to appear intact upon casual conversation, but yet still suffer from the same ongoing issues—such as Sundowning, personality changes, and bizarre behavior—as their less educated and less polished counterparts.
Dos and Don’ts for Communicating
As a practical matter, it can help immeasurably to keep a few dos and don’ts in mind when interacting with people who have dementia.
- Do communicate in the way they were accustomed to being addressed in the past. Remember that they are grown adults and have in many cases led highly accomplished lives, held jobs, raised children and grandchildren.
- Do offer simplified choices, such as: “Would you like juice or milk?”
- Do break down instructions into parts, and pause after each instruction so the person has time to process what’s said. It can also be helpful to offer “backup communication” by using hand signals as well as words. You might also offer written instructions to those who can read.
- Do practice things like yoga, meditation, deep breathing, positive thinking, and self-care as a caregiver — as this will help you to deliver pleasant, calming nonverbal communication even when you’re experiencing frustration.
- Don’t attempt to communicate using “baby talk” or condescending speech.
- Don’t give complex choices, such as: “What would you like to drink?”
- Don’t use complex sentences with multiple subjects and objects, as in: “Please take off your jacket, hang it up in the closet, and make sure you close the door on the way in.”
- Don’t say one thing with your words, and another thing with your body. Be aware that because many people have great difficulty understanding verbal communication, they are much more attuned to body language.
For more tips on communicating with people who have dementia, see the Alzheimer’s Association’s post on Communication and Alzheimer’s.