In the late stages of dementia, or in severe Alzheimer’s, communication is significantly impacted.  By this stage, both speech and language can be affected. The person with advanced dementia is not aware of their communication deficits; they may not be able to think beyond their own needs to notice the perception challenges of the family caregiver with whom they are communicating.

 

 

Understanding the limitations of late-stage dementia is critical to communication.  Knowing the challenges that will exist and the ability level of your loved one makes all the difference for successful communication. 

 

Here are 7 elements of communication that will have become difficult, directly impacting the expectations we should set for late-stage dementia communication:

 

1. Highly Variable

 

Your loved one is going to fluctuate in ability level—by the day, by the hour, even within a minute.  Just because a person with dementia can clearly articulate a concept one minute, does not mean that she is able to do so the next minute.  There can be islands of fluent and coherent language where she can express herself with impressive clarity.  Understand that her ability to express herself will fluctuate drastically, and a moment of inability is not laziness or faking, or manipulation.

 

2. Perseveration

 

Perseveration is a focus or preoccupation with a particular concept. It is often expressed as worry or concern.  In the later stages of dementia, perseveration is quite common and is often expressed through repeated questions or a repeated focus on certain words/topics.

 

3. Reduced Vocabulary

 

The mental dictionary of vocabulary is not only shuffled as it is in the early stages, but there are also now entire sections of the dictionary that are missing.  Vocabulary may be reduced to simple words, or your loved one may surprise you with complex words in one moment and lack of simple words the next moment.

 

4. Unrelated Utterances

 

Late-stage dementia causes disorganized thinking, resulting in a conversation that jumps around frequently. Where there might be some linkage between concepts in the mid-stages, in the late stages, words or ideas may be expressed that are entirely unrelated.  The reduced vocabulary causes your loved one to grasp at other, unrelated words to fill the gap.

 

5. Word order and Agreement

 

 

One of the hallmarks of language is the correct arrangement of words—words need to be used in the correct order and in agreement with each other. In the later stages of dementia, words become easily entangled, sentences are mixed up, and correct grammar may be lost. 

 

6. Speech Disturbances

 

Throughout the earlier stages of dementia or milder Alzheimer’s, language is affected.  In the late stages of dementia, speech may also be affected. Someone may have trouble pronouncing words, forget how to pronounce certain syllables, or begin to stutter.  In the very late stages, speech may be significantly impacted so that words are no longer discernable.

 

7. Non-Verbal Cues Paramount

 

When your loved one can no longer understand the meaning of the words you are saying, he/she will rely upon understanding your intonation, your body language, the tone of your voice, and your approach. 

 

Your words could be pleasant and clear, but if you appear to be upset or hurried, your words will be lost.  Only your upset nature or hurried and flustered sense is being conveyed to your loved one. The person with dementia may then respond to your perceived emotion, completely separate from the words that you are saying.

 

As someone with dementia progresses through the illness, their ability to analyze their own communication dwindles.  By the late stages, they are not able to self-assess their communication at all. 

 

As a family caregiver communicating with your loved one, or as a health care professional communicating with clients, it is our responsibility to anticipate the aove 7 challenges and acccomodate accordingly. 

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Exploring Responsive Behaviours

Someone who is experiencing dementia may exhibit behaviours that we do not understand.  These behaviours have been labelled ‘difficult’ or ‘disruptive’ or ‘challenging’, but is that really a fair assessment of these behaviours?

 

In caring for people with dementia, the focus often ends up being on the disease itself, rather than on the person who is experiencing the disease.  Thus, their behaviours are often automatically assumed to be associated with the disease. 

 

Sharon Stap, a Psychogeriatric Resource Consultant, contrasts older understandings of dementia with more updated approaches.  In the past, it was understood that dementia was altering someone’s brain, resulting in different behaviour. All behaviour was assumed to be a result of the disease. 

 

 

The newer understanding of dementia is that the changes in someone’s brain result in a different perception of the world around them, creating anxiety, fear and other emotions which then lead to different behaviours.  Understanding that someone with dementia is experiencing a change in perception which causes behaviour should fundamentally alter how we interact with those who have dementia.

 

Dr. Sherry Dupuis, former director of MAREP (the Murray Alzheimer Research Education Project), feels that we need to reframe our view of

these behaviours.  Instead of merely seeing the ‘challenge’ or ‘difficulty’ that these behaviours cause for us, or assuming that all behaviour is attributed to disease, we need to reframe these behaviours as a form of communication.  Dr. Dupuis views behaviours as a form of personal expression, a unique way of communicating needs.  We should then seek to understand the meaning behind the personal expression.


We must remember that people who have dementia were all unique individuals prior to the onset of their illness. They continue to be unique individuals with different personalities, communication styles, interests, life histories, etc.  Dr. Dupuis charges us to never lose sight of the fact that a person with dementia is first and foremost a person who requires love, care, and understanding, not just a disease or a ‘case’ that needs to be managed.

 

One of the greatest gifts that we can offer to someone with dementia is the gift of truly relating to that person—validating their personal experiences and feelings.  Someone with dementia is experiencing the world around them differently than they previously experienced the world, and differently than you might be experiencing the world around you. 

 

This experience may be frightening, overwhelming, or worrisome, and the feelings that are generated and their emotional response is fully valid. We cannot be dismissive of someone’s feelings or emotional responses just because we do not deem a situation to be frightening to ourselves.  The kindest thing we can do is try to understand the emotional response and validate the feelings that someone else is experiencing.  Only then can we attempt to change someone’s experience into something more positive.

 

If someone is distressed or having a negative experience, distraction can be helpful, but it is not the first step in the process.  Stap emphasizes that you cannot jump immediately to distraction, otherwise you risk being dismissive of someone’s feelings. Stap proposes a four-step process where distraction is the final step, not the first option. 

The Four Steps

 

1. Show you care

 

2. Show you want to help

 

3. Redirect

 

4. Distract

 

For example, Agnes has dementia, and she is upset and focused on wanting to return home. The first step is to acknowledge how Agnes is feeling.  You might say: “You need to get home, Agnes? I can understand why you’re so upset.”  Attempting to inform Agnes that she is already at home—known as reality orientation—is not helpful and only causes more distress; Dupuis and Stap agree that there is rarely if ever, a good time for reality orientation.

 

 

After acknowledging and validating Agnes’ feelings, you want to show that you want to help.  You might suggest: “let’s go see if we can find someone who can help us, Agnes”.  While on the hunt for someone who can help, you have the opportunity to redirect, the third step.  You could say, “I’m tired. Before we look for someone else who can help, do you mind if we rest here by the piano?”.  After this, you have the opportunity for distraction, the fourth step.  You could then say: “You play the piano, don’t you, Agnes?  Would you play me a tune?” 

 

If you had jumped immediately to distraction via the piano when Agnes first approached you, she likely would have felt even more frustrated that her needs were not being addressed. Acknowledging Agnes’ feelings and needs, then assisting her to focus on something that is more comforting, allows for a positive experience overall.

 

Interpreting all behaviour as a form of personal expression shifts the focus off of the disease of dementia, and refocuses attention on the individual person.  Suddenly, behaviours are imbued with meaning and purpose, a form of communication. It is then our responsibility to enable the best possible form of communication and understanding, setting people up for success, regardless of dementia or other illnesses.

 

If you have questions about dementia or dementia care, contact our office today to speak to one of our experts. 

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