A quote in a 2018 research study by Fox and colleagues (2018) illustrates the paradigm of communication in severe dementia.  “If a need is not recognized by others, it will never be addressed.” An individual with dementia’s (IWD) message must be received accurately or communication does not occur and the need expressed remains unmet.  This is a conundrum in late-stage dementia.  If a message is unclear, encoded, or cannot be heard or clearly understood, other clues must be heeded for the message to be conveyed.  We encounter this problem daily in a society that communicates frequently through text and email.  Without the context, inflection, tone, body language and facial expression, written snippets lose the continuity of dialogue as well as the details of the script’s setting.   Messages without this information are vulnerable to misinterpretation.  We must consider all manifestations of information being conveyed.

 

Messages have both motive and purpose. They relay information. Messages may reflect an inner, emotional or physical need, or a combination of such.   Messages related to basic needs are clearest (Langs, 1993).  This is because these types of messages are rarely encoded.  They are direct and come straight from the messenger as an automatic declaration of what is required or desired.  These needs include hunger, discomfort, etc. 

 

Most messages can be deciphered based on the antecedent or experience that set it off.  Freud called this trigger decoding (Langs, 1993).  Intrapsychical communication is based on private thoughts, fantasies, and dreams.  In this example, we do not know why dad kicked at the repeated mention of the upcoming visit from the podiatrist, but we do know his foot was cut once in the past when the doctor was trying to groom his toenails.  This scenario has both intrapsychically and interactionally based messages. The reason for kicking could be an association with the pain at a deeper (intrapsychic) level with getting his toenails trimmed.  Interactional communication is based on interpersonal interactions and the environment itself.  Maybe dad just did not like having his routine interrupted or simply disliked the doctor personally.  According to Robert Langs, healthy minds may switch back and forth between these two forms of messaging which results in two levels of meaning—one literal and on the surface (conscious) and the other symbolic and encoded (unconscious).  To understand behavior accurately, one must have access to both surface and encoded meanings.  Humans might not communicate their deepest desires directly (without encoding) as it may be dangerous to give open, raw messages.  Encoding our messages can give us a sense of safety or relieve anxiety.  An example would be with personal attraction and encoded messages in the dance of dating.  We attempt to protect ourselves and others by not stating exactly what we need or want and instead use nuance and inference.  Encoding also occurs unconsciously – more on this later.

 

Individuals with dementia typically do not encode multiple messages, so it might appear easier to decode their communication.  Due to damage in their brains, their messages do not tend to reflect concern for others and are self-centered.  They are unable to decipher multiple levels of meaning but may unconsciously encode messages.  When an inner need is not met, it can be expressed through repetitious tasks or vocalization.  Pacing, wandering, rocking, and asking the same question repeatedly is the message of anxiety.   This message is encoded in the repetitious behavior, which should be allowed if possible.  Singing the same song, coloring, folding, sorting, painting, or hugging and rocking a doll are all ways the client is attempting to resolve an inner issue.  When these messages are not encoded, we may hear blunt and offensive statements like “I want a divorce!” or outbursts of profanity that are not in proportion to the antecedent event.  The surface meaning enshrouds the underlying message of fear, frustration, pain, or other distress.  This is because unconscious encoding may not address the current threat, or the need continues to be unmet.  Delusions can also result in unconscious encoding, as can a disturbing affect or image. 

 

How can we be sure we have decoded a message accurately?  One way is to watch for patterns.  When is this behavior repeated?  In what context does it occur?  When is it most likely to start?  It also helps to know how unconscious messages are encoded.  Langs (1993) suggests there are three ways this happens –condensation, displacement, and symbolism.  Condensation refers to a single image or thought standing for several images or concepts.  An example of this might be a context or setting that triggers a similar response but in entirely different situations.  I might fear streams because I slipped and fell into one in my youth.  Now all bodies of water are dangerous and suspect. 

 

Another encoding process is displacement.  This is a substitution of one person, situation, or object used to represent another.  A dementia client may see a caregiver as their best friend from high school.  The client is spared anxiety for the new caregiver because he/she is perceived as someone remarkably familiar from the past.  The third encoding mechanism is symbolism.  One item signifies another through its attributes.  The blanket or stuffed animal is so soft and fuzzy, the IWD may think it is a pet rabbit from earlier in life.  Regardless of the process utilized, the purpose of all forms of encoding is to reduce discomfort.

 

What about nonsensical speech?  This can also be referred to as language scrambling. We can respond with “I see” or “Ok” or nod an affirmation.  The IWD should be allowed this expression, of course.   If we cannot decipher key words or the type of encoding being used, we must dig further into unspoken territory.   There is an underlying tone to the words being expressed.  Is it one of agitation or pain? Or is it conversational communication?  Where does gaze shift?  Is there a change in breathing, volume, or inflection?  Observe body movements.  If discomfort is the underlying message, how does the person convey this in restricted movement, gestures, or facial expression?  These are times when we need to be a dementia detective. 

 

How do we handle repetitious questioning?  When we visited my mother-in-law in a nursing home some years ago, there was a client who would call out the question “What did I do?” incessantly.  Staff had learned to ignore his verbalizations.  A technique called vanishing cues might have helped him decrease anxiety.  If I had to guess, I would say he was anxious about something he did, right?  Or maybe it was something he was supposed to do.  Regardless, there is usually a pattern to such utterances.  They may have increased frequency prior to mealtime or when he needed to be changed.  Another behavioral (and trigger decoding) approach would be to time the intervals between his questions to get an average, or baseline.  For example, let’s say his questions occurred at an average of every three minutes.  After two minutes, tell him what he did previously.  “You went to breakfast.”  “You did some exercises” before he even asks the question.  Wait another two minutes and state what he did again.  “We sat and talked”, etc.  The purpose is to interrupt his questioning and provide reassurance before anxiety increases again. 

 

We should validate the meaning of any message by gathering other information to reinforce our hypothesis.  Does the body language, facial expression, affect, and movement provide us with evidence to support our theory?  Did these responses also occur at the same time yesterday when the client was hungry/needed changing/tired/bored? 

 

Sources:

Fox S, Fitzgerald C, Dening K, Irving K, Kemohan W, et al.  Better palliative care for people with dementia:  Summary of interdisciplinary workshop highlighting current gaps and recommendations for future research.  BMC Palliative Care, 2018;17:9.

 

Langs, R. (1993) Unconscious communication in everyday life. Northvale, NJ:  Jason Aronson Inc.