How we care for individuals with Alzheimer’s disease and other dementias as the disease progresses, and the management of the behaviors associated with this progression, are issues of growing concern.
All too often, the behaviors exhibited are characterized merely based on the diagnosis and associated sequelae of symptoms. This results in the use of antipsychotic medication as the preferred line of intervention.
If we consider the possible underlying causes for the presenting behavior with the concomitant communication aspects of the decline in function, however, then we can develop alternative methods of management that can produce desirable behaviors without the use of antipsychotic drugs. This article will consider the underlying causes of the behaviors presented and alternative methods of management.
An April 2018 article by Lois Bowers in McKnight’s Senior Living titled “Antipsychotic drug use increasing in assisted living, AARP says” cited the growing off-label use of antipsychotic medications for individuals with Alzheimer’s disease and dementia who reside in assisted living communities or in the greater community. The percentage of people aged 65 or more years who were prescribed antipsychotic drugs increased by more than 6%, from 12.6% to 13.4%, between 2012 and 2015.
This growth is in direct conflict with the National Center for Assisted Living’s goal to reduce off-label antipsychotic use by 15% between 2012 and 2013 as well as between 2015 and 2018.
Understanding the individual’s frustration
As we know, Alzheimer’s disease is progressive and manifests itself in decline in several areas: behavior, communication and physical abilities. We may be able to view it on a kind of bell curve in which the decline in function begins with the last-learned, highest-level behaviors or abilities and regresses to those that are first learned.
It may help us understand the frustration an individual may be experiencing with decline or loss of communication ability in Alzheimer’s disease and dementia if we draw an analogy to any person experiencing a paucity or loss of language, whether it be developmental or the result of a disease process or sudden onset. The stroke or brain-injured resident who is at a loss for words due to aphasia, the child who has not developed sufficient language to express himself or herself or is unable to interpret his or her own behaviors sufficiently to put them into words.
In this latter example, a child’s “cranky” behavior often is interpreted as the child feeling hungry, tired, pain or another form of physical discomfort. Alternatively, this behavior could be an expression of fear; boredom; loneliness; or wanting attention, comfort or affection. Many who are parents may have seen that a crying child pulling on his or her ear without any other recognizable symptoms ultimately was found to have an ear infection.
Communication strategies
Continuing this way of thinking, the same communication strategies we apply to those children or other populations experiencing loss of language may benefit the adult who is exhibiting behavioral or communication issues associated with Alzheimer’s disease or dementia. We should be responding to what we think is the need or emotion behind the behavior, rather than the behavior or the words that we are seeing or hearing. In doing so, we could adjust our response to meet the person at his or her level. This may include a combination of physical, gestural and verbal strategies.
As with any other person, child or adult, with reduced language, it may take several attempts to determine the underlying cause(s) of the behavior being exhibited.
Areas for consideration:
- What are the antecedents of those behaviors?
- What environmental or social factors are reinforcing or prompting the behavior?
- How is the environment structured, and what role is that playing in the behavior?
- What are the consequences to that behavior, or what effect might they have on perpetuating or continuing the behavior?
Strategies that may be needed to address behaviors, depending on the behavior and the person’s cognitive level of functioning:
Communication: This may include adjusting the tone of voice, volume or intensity of voice. In addition, explanations or questions are best understood if they are short and simple. This actually serves a twofold purpose. Firstly, too much information and long sentences can be overwhelming and add to the person’s sense of confusion and frustration. Secondly, in the event the information has to be repeated, it can save the caregiver time and energy. Repeating the same information over and over can be exhausting. Save yourself, and the listener. Redirecting attention to another activity or idea can also be helpful. The use of music can be a great tool for the individual to facilitate communication, engage with the environment and calm behaviors. Consider contacting musicandmemory.org which is a non-profit organization that provides training for using the Music and Memory program.
Physical: Physical comfort, a tender touch of the hand or hug, a gentle smile or kiss, looking a person in the eye and reassuring them you love or care about them can go a long way in helping an individual feel more calm or relaxed. Sometimes something as basic as providing something to eat or drink goes a long way in quieting or soothing behaviors. Note that as the disease process progresses, in many cases there is a preference for sweeter food items. Behaviors may also be a signal that a person is cold or hot; consider offering a sweater or blanket or removing particular articles of clothing.
Environmental: Changing the individual’s immediate surrounding. For example, going for a walk down a corridor, looking at the trees, birds or the weather outside may have a calming effect. It is also important to observe the environment for sudden changes: disruptive or intrusive behaviors from others, a sudden loud noise, etc. A feeling of boredom can be addressed by engaging the person in a familiar every day chore or activity that they used to do to give them a sense of purpose or usefulness. Music also plays a large role here. Too much, too loud, or music not suited to an individual’s interest or cognitive level can be jarring.
Setting expectations
What is the standard of behavior that we are expecting? If we continue to provide the same environments for individuals with Alzheimer’s disease or dementia, then why would we expect to get a different result?
Consider the example of many workplace environments that are designed to maximize the desired level of productivity or behavior while creating a happy and satisfied workforce. Thus, the physical environment is an essential ingredient to attempting to determine the underlying causes of particular behaviors.
Memory books
Memory books can serve an important purpose. Spending time with the person’s family and friends, as well as the individual, in finding out what is relevant to the person, and then spending time creating it, can be a valuable tool for the individual to reminisce and find comfort in familiar at those times when the person feels uneasy or confused in the surroundings. It helps him or her connect with the friends, family members, activities, places, accomplishments, he or she used to enjoy.
Memory books can be created by speech-language pathologists or recreation specialists or in consult with family members. Doing so can be especially valuable to those who no longer are in the comfortable surroundings of their own home environment.
Finally, the need to understand the causes that trigger behaviors and to provide the appropriate environment and training, including empathy and communication strategies, should be considered essential as we continue to care for individuals with Alzheimer’s disease or dementia in any setting. These could be enormously helpful in reducing the use of antipsychotic drugs whether in assisted living communities or skilled nursing facilities or the greater community.
