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Section 9
Addressing Behavior Problems Common in Dementia

Question 9 | Test | Table of Contents

Agitation
A large percentage of patients with dementia exhibit agitation in one form or another. Agitation can stem from the underlying disease itself or from other factors, such as anxiety, frustration, discomfort, pain, or medication side effects. Many caregivers visit physicians with the hope of finding a magic pill that will make all of the symptoms disappear. It is imperative to convey to them that although medications can be effective, changing the environment to suit the needs of the patient is often a more successful strategy. These adjustments include avoiding confrontation; identifying triggers for disruptive behavior and removing them; addressing pain and discomfort; maintaining a structured daily routine in a calm, quiet environment; and encouraging independence to the extent that the patient is able to tolerate it.

Many times, patients with dementia are unable to express their emotions through conventional means, and their behavioral disturbance is a sign that something else is wrong. If the patient's needs have been addressed and agitation continues, other types of treatment are available. A recent study showed that aromatherapy with lemon balm can reduce agitation in patients with severe dementia. Medications should be considered when the symptoms cause significant distress to the patient or pose a danger to the patient or others. For instance, cholinesterase inhibitors, generally prescribed to slow the cognitive decline of Alzheimer's disease, may also be effective in reducing agitation.

Sundowning is a specific type of agitation in which the patient becomes more confused and agitated in the late afternoon or evening. It may result from fatigue or loss of the visual cues associated with daytime. Environmental changes can be useful. Caregivers need to learn to avoid activities that are stressful for the patient, such as bathing, during these hours.
Catastrophic reactions are another subtype of agitated behavior. These occur when a patient becomes extremely upset over what others may perceive as a trivial matter. Catastrophic reactions are thought to be precipitated by such things as task failure, perceived threat, or paranoia. Prevention is the key to avoiding catastrophic reactions. When one does occur, the caregiver should try to remain calm and avoid getting caught up in an already emotionally charged situation.

Delusions
Delusions are fixed, false beliefs that occur in up to 73% of patients with dementia. They can range from vague to elaborate and are often paranoid and accusatory in nature. Sometimes they are due to "living in the past." Other times, they are the result of misidentification or misinterpretation of the environment, such as believing that someone in a portrait painting is actually a person living in the home. Although the mere thought of psychotic symptoms often leads to prescription of antipsychotics, in many cases these are not necessary. It is imperative to remember that the potential side effects of these medications can lead to significant functional decline. Furthermore, in cases of Lewy body dementia, even small doses of the older drugs in this class can have disastrous behavioral and medical consequences, sometimes leading to death.

Successful nonpharmacologic interventions include reassurance, distraction, and validation therapy, in which the reality of the patient's experience is acknowledged and accepted. However, when delusions are distressing to the patient, treatment with antipsychotic medications should be considered.

Hallucinations
Occurring less often than delusions, false visions are the most common type of hallucination seen in dementia. However, other senses can also be affected. Hallucinations can occur throughout the course of Alzheimer's disease and are generally prominent and early in Lewy body dementia. They are part of a triad of symptoms that also includes parkinsonism and cognitive impairment.

As with delusions, hallucinations can often be managed with a combination of reassurance, distraction, and benign neglect. When they become disturbing, medication may be considered.

Resistiveness to care
Caregivers become particularly distressed when faced with a task they know will lead to conflict. For example, some patients become resistive to care activities such as bathing, toileting, or changing dressings. This behavior is most common in patients with more advanced Alzheimer's disease or with frontal-subcortical dementia. The most useful treatment of resistiveness to care is to teach the caregiver to limit goals (eg, a sponge bath in place of a shower). It is important to use a slow, gentle approach and avoid giving too many directions at once. Some patients can be tempted with a reward. For some, that means ice cream in the bathtub; others settle for an approach of "As soon as we finish, I'll leave you alone."

Disinhibition
Often seen in frontal-subcortical types of dementia, disinhibition can also occur in Alzheimer's disease. Most commonly, patients say or do things that they would not have done before, and this is often a great source of embarrassment for caregivers. Other, more specific behaviors include disinhibited aggression and behavior of a sexual nature. In cases of disinhibition, it is imperative to examine environmental triggers and avoid situations in which the patient is likely to act out. Caregivers and physicians should keep a safe distance from patients who are known to hit. With a sexually disinhibited patient, they should avoid unnecessary physical contact or opportunities for arousal. The caregiver might want to consider the use of restrictive clothing, such as a jumpsuit that zips in the back, if the patient is prone to self-stimulation or disrobing. Restrictive clothing should absolutely not be confused with restraints; such garments simply increase the effort needed to partake in self-stimulation and thus are sometimes sufficient to extinguish the behavior. Though it may seem obvious, prevention is fundamental in avoiding these unpleasant circumstances. Because prevention does not always work, however, there are other interventions that can be useful. Caregivers can carry a business card that states, "My loved one has memory problems. Please be patient and overlook behaviors that may be out of the ordinary." This is a subtle measure that allows caregivers to explain what is happening without the added discomfort of talking about it in front of the patient. If medication becomes necessary, a number of drug classes have been shown to be effective.

Wandering
The most potentially dangerous behavior among patients with dementia is the tendency to wander. It occurs in over half of patients with Alzheimer's disease and can lead to serious injury or death. There are a variety of reasons why patients wander: some patients are restless, some are seeking a way out, some reflexively try to open a door because it is there, and some just blindly follow others. Whatever the reason, several measures can be taken to decrease wandering. It is very important to provide daytime exercise and stimulation, including time outdoors. If patients feel that they are not missing something, they may be less inclined to go exploring. Sleep disturbances should be managed to prevent nighttime wandering. Door locks and security systems should be used when appropriate. Another measure that can be useful is placing dark tape across the floor of a doorway; many patients will not cross an imagined threshold. Medications are generally ineffective in treating wandering. Anytime a patient has a tendency to wander, he or she should be enrolled in a wander alert program. The Safe Return project is a national program run by the Alzheimer's Association. Many local law enforcement agencies also participate in similar programs.

Sleep disturbance
As dementia progresses, patients have more difficulty in reacting to the normal cues that help keep the circadian clock running smoothly. Caregivers often seek help for sleep disturbances in patients with dementia. Some patients sleep much of the day and night; some rarely sleep at all. Caregivers should be encouraged to help patients maintain good sleep hygiene by providing exercise and social activities during the day, restricting caffeine and alcohol, limiting naps, and addressing incontinence and pain. It helps to make sure there is a distinct difference between day and night by opening shades and turning on lights during the day and making the room dark and quiet at night. Night-lights are recommended for patients who need to use the restroom during the night and might become disoriented trying to find their way.
Physicians should evaluate the patient's medications and remove unnecessary agents that could cause sleep disturbance. These interventions are often enough to restore some normalcy to the sleep cycle. Some patients require medication to help with sleep. Unfortunately, the wrong agents are often recommended or prescribed.

Apathy and depression
A different kind of behavioral problem that often occurs in dementia is apathy. Caregivers often believe that their loved ones are depressed because of their lack of interest in their surroundings, decreased activity level, and lack of personal hygiene. In some cases apathy presents as an even more profound abulia, or lack of will. It is imperative that physicians differentiate apathy from depression, because they often share similar features. One quarter of patients with dementia have significant depression, which often goes unrecognized but generally responds to treatment. One way to determine whether patients have apathy or depression is to consider their self-reported level of contentment with doing nothing. Despite their cognitive impairment, patients with mild to moderate dementia are often able to accurately convey this assessment on questioning.

Once depression has been ruled out, there is often little that can be done to treat apathy, although sometimes cholinesterase inhibitors can provide some degree of improvement. Caregivers may need to lower their expectations of what patients are able to do. Patients should be encouraged to participate in activities if they are willing to do so. Some passively do what they are told; in these cases, physicians should encourage caregivers to maintain a daily routine and schedule planned events. Patients who are resistant should not be pushed, as this can lead to agitation and other behavioral problems.
- Smith, Amanda G.; Behavioral problems in dementia; Postgraduate Medicine; Jun2004; Vol. 115 Issue 6

Personal Reflection Exercise #2
The preceding section contained information about addressing behavior problems common in dementia.  Write three case study examples regarding how you might use the content of this section in your practice.
Reviewed 2023

Update
Management of Agitation in Behaviours That Challenge in Dementia Care:
Multidisciplinary Perspectives on Non-Pharmacological Strategies

James, I. A., Reichelt, K., Shirley, L., & Moniz-Cook, E. (2023). Management of Agitation in Behaviours That Challenge in Dementia Care: Multidisciplinary Perspectives on Non-Pharmacological Strategies. Clinical interventions in aging, 18, 219–230. https://doi.org/10.2147/CIA.S399697


Peer-Reviewed Journal Article References:
Martin, K., Lang, F. R., Rupprecht, R., & Nömer, J. (2021). Dementia worry and the perception of personal risk: A longitudinal study. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 23–30.

Maxfield, M., Cui, R., Roberts, J. R., & Fiske, A. (2021). Interest in dementia testing: Family history, dementia-related anxiety, and coping. GeroPsych: The Journal of Gerontopsychology and Geriatric Psychiatry, 34(1), 5–11.

Wilson, R. S., Barnes, L. L., Rajan, K. B., Boyle, P. A., Sytsma, J., Weuve, J., & Evans, D. A. (2018). Antecedents and consequences of unawareness of memory impairment in dementia. Neuropsychology, 32(8), 931–940. 

QUESTION 9
 What are the eight most common behavioral problems in dementia? To select and enter your answer go to Test.

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