Agitated or Challenging Behavior in People with Down Syndrome and Alzheimer's Disease

Agitated or challenging behavior can be a symptom that people with Down syndrome (DS) who have Alzheimer’s disease (AD) can have. When it occurs, careful assessment is important. An evaluation for medical problems and physical sources of pain may find a cause that is not directly related to AD. Because of the person’s reduced ability to understand or inform others of her discomfort, she may be using behavioral changes to communicate the discomfort.

In addition, depression, increasing obsessive tendencies or compulsivity, anxiety, and sleep disturbance may cause agitated behavior. A variety of environmental factors can contribute to agitation, too. Treatment for the appropriate condition or addressing the environmental issues may reduce or eliminate the agitated behavior. However, sometimes, no other underlying cause is found, and the treatment will need to address the agitation directly (rather than an underlying cause).

 

Approach to agitated or challenging behaviors

If the person is displaying agitated or challenging behaviors or there is a change in behavior, the first step is to assess what problems the behaviors are causing or what discomfort they are causing. Is the behavior disturbing to the individual, is it causing challenging situations for those around him, or is there a safety concern? For example, if a person develops a compulsive need to go into his room at 3 PM sharp to watch a certain program, it is unlikely it would be a behavior that needed to be addressed or changed. However, if the person is getting aggressive with people he lives with, that will need some form of intervention.

 

Possible contributing causes

The second step is to assess for possible contributing causes. 

Caregiver triggers

Caregivers, even with the best intentions, can be a trigger to a behavioral change. For example, reasoning with the person who has a declining ability to reason often results in little if any success in the interaction and can cause upset behavior. Short of an immediate safety issue (the person is doing or about to do something dangerous), in most situations, backing off, waiting a few minutes, and trying again is more likely to be successful.

Environmental triggers

Environmental factors like too much noise, cold or hot temperatures, too much or too little activity, bad smells, too much or too little light, and other factors can be stressful and result in a change in behavior. Also, going to a new environment can be challenging. Are we expecting that an individual can successfully participate in a gathering at a new setting in the presence of many relatives she hasn’t seen for years? These events and even much less hectic events or settings can be challenging.

For individuals who don’t live with family, sometimes even going back to the family home is too overwhelming. Their present home/residence is now familiar, and the family home - no matter how long the person lived there - may no longer be “familiar” due to memory loss. Visiting the family home may become too stressful. The family may need to visit the person in his or her setting rather than bring the person out of their setting. Leaving their environment, going into the community, or visiting with less familiar people, especially in larger groups, may be frightening, upsetting, or even agitation-promoting.

There are ways to use the environment in positive ways. Highlighting and using things in the environment that the individual didn’t find stressful prior to developing AD can be comforting and beneficial. Adding things that make the environment more manageable can also be very helpful. Putting the person’s picture on their bedroom door, putting a picture of a toilet on the bathroom door, and similar interventions can help the individual feel less confused and reduce behavioral changes.

Wandering can sometimes be a problem that requires environmental changes to prevent the person from wandering unsafely. If he is just wandering around the house, no intervention may be needed, but if he is wandering outside, some means of preventing that will be important for safety. A good resource is available from Down’s Syndrome Scotland: Living with Dementia .

Physical triggers

Pain is a common contributor to challenging behaviors. The person may have a bladder infection, a sore throat, or other causes for pain. It is important to assess for possible painful conditions that may be contributing to a change in behavior. A variety of medical conditions can contribute to behavioral changes. A few examples include infections, metabolic conditions (e.g., diabetes, thyroid conditions), dehydration, and inadequate sleep.

Mental health triggers

Alzheimer’s disease is often accompanied by mental health changes in people with DS. Depression, anxiety, obsessive-compulsive disorder, and others can lead to behavioral changes including agitation. Often these can be treated with the non-medicinal approaches. However, if these approaches don’t adequately address the problems, additional therapies can be considered. Further information follows.  

 

Treatment

Review of the “need to treat” criteria outlined above is important as treatment is considered. Once it is clear intervention is needed, the next step is to recognize that the treatment may require multiple approaches. Careful assessment, addressing caregiver and environmental triggers as well as using techniques to make the environment more “friendly” to the individual should be reviewed and used appropriately in all individuals. This is true even when other underlying physical and mental health conditions are found.

In those with contributing physical health issues including pain, these factors need to be addressed to optimize the person’s comfort as well as reduce the impact of their behavior on those around them. 

For mental health conditions and symptoms, a similar approach is recommended. The primary purpose is to reduce the person’s suffering and to optimize their enjoyment and participation in life activities. Various therapies may be considered. Pet therapy, music therapy, or art therapy may be helpful. Sometimes it is also necessary to consider medication. If medication is being considered, review of the mental illness diagnosis is key as well as choosing medications that will optimize the person’s comfort and safety, reduce the negative impact of the behaviors on others, and minimize potential side effects. 

There are a variety of medications available to treat conditions that are common in people with DS and AD including depression, anxiety, and obsessive-compulsive disorder. For more information on these conditions, please see the Mental Health section of our Resource Library.

In addition, AD may be associated with hallucinatory behavior or paranoia. If this is disturbing to the person or is a safety issue, medications can be considered. Atypical anti-psychotics are sometimes prescribed. However, these medications have a “black box warning” from the Food and Drug Administration and are not approved for dementia-associated psychoses. These medications are associated with increased mortality mostly related to cardiovascular or infectious events when used in people with dementia. If they are considered, a careful discussion about the risks and possible benefits should be undertaken. More common side effects include unsteadiness, sedation, confusion, and incontinence. If used, starting with very tiny doses can reduce the incidence of side effects.

Agitation may also respond to seizure (anti-epileptic) medications. Since many people with DS who have AD develop seizures, these medications may treat both seizures and agitated behavior. We have found valproic acid (Depakote), carbamazepine (Tegretol) or lamotrigine (Lamictal) to be effective in some individuals. Levetiracetam (Keppra) works well for seizures in many individuals with DS and AD. Unfortunately, an occasional side effect is agitated behavior. If agitated behavior occurs while on levetiracetam, we consider changing to a different anti-epileptic medication.

More information on agitation in AD can be found in this Anxiety and Agitation article  from the Alzheimer's Association. 

More information on AD in people with DS can be found in the Alzheimer's Disease and Dementia section of our Resource Library.