Communication is vital to everything that individuals do. The accomplishment of tasks, the way in which individuals teach and learn, how the world is discovered, how relationships are formed and maintained, and individuals know what they know. All of this depends on the ability to for individuals to communicate to others and to understand what others are communicating to them. Alzheimer’s disease (AD) and other progressive dementias slowly but surely deteriorates the fundamental skills of communication—not only does the individual lose verbal communication abilities so that expressing personal needs and feelings becomes difficult but also the ability to understand verbal communication directed towards the individual also diminishes. This breakdown in communication is an incredibly difficult and emotionally painful loss to accept and to manage. It leads to frustration not only for the person with this awful disease but also for caregivers. This chapter lays out some specific and concrete strategies that facilitate communication across all stages of decline—from stage 4 on the FAST scale through the end of stage 7 which marks the end of the disease and death.

Words make up only a portion of communication with nonverbal communication making up the rest of what is “said” to others. Body language, tone of voice, gestures, facial expressions, touch, and eye contact or lack thereof all communicate. The implication of this is that when verbal communication deteriorates as a result of dementia, the caregiver needs to be increasingly aware not only of his or her own nonverbal communication but must also be equally tuned into the nonverbal communication of the person being cared for.

The skills of validating the meaning of both verbal and nonverbal communication are essential in providing care. Without validation, both the person with dementia as well as the caregiver will experience frustration, anger, and may withdraw. When verbal communication is diminished, validation allows effective communication to continue. The caregiver needs to put into words what he or she is sensing from the cared for person, while at the same time the caregiver must control his or her nonverbal messages so as not to communicate impatience, anger, disgust or other negative emotions. This is indeed a tall order. For example, a caregiver might validate in the following ways:

Mom you get frustrated when you are not able to let me know what you need. I am sorry, let’s try again.

Honey you are tense, you are not smiling, and I notice your face looks sad to me when you get out of a chair. I wonder if you are in pain.

Dad it must be frustrating to you that you need me to help bathe you. I understand and will try to make this the best experience I can for you.

The caregiver has the ability to validate; the person with dementia does not have this ability. Lacking this ability, the person will internally experience the tension in the caregiver and begin to feel the caregiver is unhappy and/or angry with them. This puts a great deal of responsibility on caregivers to provide not only gentle physical care but also care that is matched with kind and understanding words.

Just as the disease of Alzheimer’s produces slow but steady declines in all abilities that we associate with being an adult, the decline in communication skills follows a similar pattern of slow but steady deterioration. In stage 4 of the FAST scale, when people with dementia are seen as the “great foolers” and functioning between the cognitive age of 8 and 12 years, they have ability to act as if verbal messages are heard and correctly interpreted. When it becomes clear that the message was not heard or was misinterpreted, they have the ability to “cover up” their lack of understanding.

During stage 5 on the FAST scale, cognitive and functional abilities deteriorate from the level of a 7-year-old to that of a 5-year-old. The person can still make their needs known but their communication skills are simpler. They tend to use shorter words and they generally do not engage in long and involved conversations. During this stage, the person experiences word-finding problems and may engage in confabulation, that is, “filling in the blanks” with an answer when her or his memory fails. Confabulation, an unconscious response, is not to be confused with lying, a conscious attempt to deceive. During this stage, individuals with dementia neither use complex sentences nor understand complex messages. Communication, then, must be concrete and simple.

In stage 6, when the cognitive and functional level is that of a toddler from 4 deteriorating to 2 years of age, short-term memory has deteriorated to about 5 min so that messages spoken to the person literally go “in one ear and out the other.” Messages must be straightforward and may need to be repeated before the individual can understand and respond.

During stage 7, the last stage, when functional and cognitive level is somewhere between that of an 18-month-old baby and a newborn, communication is initially limited to six or seven words and deteriorates until the person can no longer speak. Communication is accomplished through simple verbal messages, i.e., “I love you.”; “Do you hurt?”, “I hope this makes you feel good,” and nonverbally through the senses. The person in the end stage responds to gentle touch, singing, soft music, wonderful smells wafting through the air, massage, and the presence of loving caregivers. These are the same expressions of love that we use with very young toddlers and infants.

Many caregivers are unaware that those with dementia can still read. The ability to read is another powerful and effective way to communicate. Unless the person is illiterate, reading is not only a very old memory, dating back to about 6 years of age or even younger, it is an “overlearned” skill. Those with Alzheimer’s or other dementia may have started reading in the first grade of elementary school and every additional year of schooling required more reading—not only more in volume but the reading became more challenging, harder and required more thought to understand, remember, and apply. As an “overlearned” skill, reading is slow to be erased by the ravages of dementia. The person may only have 5 min of short-term memory but written instructions, labeled drawers, and written cues regarding activities of daily living allow the person to be more independent—not because he or she remembers what is to be done next but because they can read the labels on drawers that might say, “Put Underwear on First; Socks Second, Shirt Third and Pants Fourth.”

Michelle Bourgeois, Ph.D., a speech therapist who is currently a professor at Florida State University, conducted ground-breaking research regarding the value of using the written word with those who have AD or related dementias. Bourgeois’ work grew out of her Ph.D. research in the 1980s, when she developed some of the first memory books, which use pictures and sentences to help people with memory problems—including those with dementia—recall past events. Bourgeois contends that even when dementia is so advanced that people cannot speak, they can read if the words are large enough. She states that we know that they can read because they smile, make pleasant sounds, and stroke photos of loved ones with captions . A woman who attended one of Bourgeois’ lectures reported that her father would repeatedly ask, “Where are we going?” during their weekly drives to the doctor. Bourgeois advised her to answer his question—and also write it down on a notepad and give it to him. When he asked again, she should say gently, “The answer is on that notepad.” When the woman tried this out, she said that her dad looked at the notepad, out the window, and back at the notepad. After that, he stopped asking, “Where are we going?”

Similar techniques have been used to deal with anger and anxiety in people with dementia. When a patient refused to shower, Bourgeois told her nursing aide to make a card that read, “Showers make me feel fresh and clean” and give it to her after saying it was time to shower. The technique worked .

With a grant from the Alzheimer’s Association, Bourgeois is working to dispel the belief that Alzheimer’s makes people miserable. Using pictures with captions, she is asking patients about their quality of life. “We find that if caregivers aren’t stressed and in a hurry, if the patient is well cared for, and if they feel safe and in a good environment, they think their lives are good,” she says.

http://​www.​alz.​org/​research/​alzheimers_​grants/​for_​researchers/​overview-2008.​asp?​grants=​2008bourgeois Bourgeois has taught thousands of caregivers her methods, and they have taught thousands more. When she discovered over 20 years ago that memory could be reclaimed with simple tools, she set herself a high goal—one she still holds: “I want families to remember these as happy times in their lives” (Wicker 2010).

When communicating with those with Alzheimer’s or other progressive dementias there are a number of effective communication strategies to guide the caregiver including: