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Caring for someone with dementia presents unique challenges, especially when it comes to managing specific problematic behaviors that may arise. These behaviors can range from aggression and wandering to resistance to care and sleep disturbances. Understanding these behaviors, their causes, and how to effectively address them is crucial for caregivers. This guide aims to offer practical tips and insights to help caregivers manage these behaviors compassionately and effectively, ultimately improving the quality of life for both the individual with dementia and the caregiver.
Individuals with dementia frequently become restless, anxious, or upset (when filling out a behavior chart, it is helpful to use specific, concrete words that clearly describe what your loved one is doing so you can truly track whether your changes work to decrease the behavior). To decrease agitation, listen to the person as he or she expresses her frustration to get a clue about what kind of antecedent is a trigger; try to eliminate and/or decrease triggers as much as possible.
Pain, discomfort (being too hot, too cold, hungry, needing to use the bathroom, etc.), frustration, and overstimulation are all common triggers of agitation. It is also very important to examine your behavior in response to the person. If you are not already doing so, reassure the person that you are there to provide assistance and comfort. If it seems like the person needs something to do, try redirection to an enjoyable activity.
Aggressive behavior can include shouting, cornering someone, raising a hand to someone, or actually pushing or hitting. Unfortunately, aggression among people with dementia can happen suddenly and seemingly without warning. Try to identify what triggered the aggression so that the antecedent can be eliminated or modified as soon as possible. As difficult as it may be, react in a calm, reassuring way and focus on the person's feelings. Reduce environmental distractions as much as possible, such as loud noises or potentially frightening shadows or movements. Redirecting an aggressive person to an enjoyable activity can be remarkably effective.
People with dementia often repeat a word, question, or action over and over again (e.g., saying "What are we doing today?" repeatedly). This behavior is usually harmless, but it can be unnerving and annoying for those who are caring for the person. Repetitive behavior is usually a sign of insecurity, since people with dementia are often looking for something comfortable and familiar - something over which they have some degree of control.
To address repetition, look for a specific antecedent or reason for the repetition as well as for the emotion behind it. This can reduce your chances of responding impatiently with the person. If the repetition is an action, try turning it into an activity that makes the person feel useful. For example, if the person is constantly fidgeting with his hands, try giving him some socks to sort or some knick knacks to clean.
Hallucinations are sensory experiences that seem real, but are not. The most common hallucinations are visual (i.e., seeing something that is not really there) and auditory (i.e., hearing something that is not really there), but hallucinations can also occur in regard to taste, smell, and touch. Because hallucinations seem real to those with dementia, it is not helpful to try to convince the person that she is imagining things. Instead, recognize the person's feelings, reassure the person that you are there to help, and redirect her to a pleasant activity. Also consider whether the hallucination is actually bothersome. If it is a "nice" hallucination (e.g., seeing a pretty orchard outside that is not really there), there may be no benefit in trying to discourage the behavior.
Memory loss and disorientation can cause individuals with dementia to perceive situations inaccurately. They may become suspicious of others - even those close to them - and accuse them of theft, infidelity, or other offenses. As hurtful as it may be to be accused of something you did not do, try not to become offended. Remember that the behavior is caused by a disease that is affecting the person's brain. Try to imagine what it would be like to continuously think your possessions are being taken or hidden (because you cannot remember where you put them).
Do not try to argue with the person or convince him or her of your innocence. Instead, share a simple response with the person (e.g., "I see that you're upset that your purse is missing; I'll do my best to find it for you.") and avoid giving complicated explanations. Redirection to another activity can also be effective in these situations. Another option is to store "back-ups" of commonly misplaced items (e.g., hats, wallets).
Apathy is a lack of interest in or motivation to engage in activities. While apathy may not seem like a serious behavior problem, it is not healthy for someone with dementia to simply sit around passively. Try to find out what may be triggering the apathy (e.g., being ignored or becoming overwhelmed with a task) as well as what kinds of consequences may be reinforcing it (again, being ignored, not having appropriate choices of pleasant activities). Even though the person is ill, it is important to keep him or her moving and as active as possible in order to maintain physical health and to prevent depression. Try adapting previously pleasurable activities so the person can participate at a level that is comfortable and not overwhelming. Even a small amount of activity is better than none at all.
Dementia often causes confusion about person, place, and time. In other words, the person may still know who he or she is, but may not recognize others and/or the current location, time, date, or year. An individual with dementia may also become confused about the purpose of objects, such as forks or pens.
As frustrating as this can be for caregivers, the best way to respond is to stay calm and provide simple, clear, positive answers when the person asks for help. For example, if the person seems confused about the purpose of a spoon, simply say, "Here's your spoon for eating your soup." You could also calmly show the person how to use the utensil (e.g., by saying "watch me"). Never scold the person or talk to him or her in a belittling way for becoming confused.
Sundowning is a term used to describe behaviors that intensify (e.g., increased confusion and agitation) in the late afternoon and early evening, and is most common with Alzheimer's disease. There are several theories about why sundowning occurs, such as increased fatigue (and as a result, a reduced ability to tolerate stressful situations, such as a chaotic dinnertime or a rushed bedtime routine) or increasing confusion due to darkness and shadows.
The best way to approach sundowning is to make late afternoons and evenings as simple and relaxing as possible. Reduce distractions, unscheduled activities, and behaviors that could be done at a different time of the day (e.g., switch to bathing in the morning) and keep rooms well-lit until bedtime.
One of the more dangerous behaviors among individuals with dementia, wandering may be goal-directed (e.g., the person thinks that he or she is going to a job or going "home" to a childhood residence) or non-goal-directed (i.e., the person wanders aimlessly). To reduce the frequency of wandering, make sure the person has plenty of supervised activity to channel his or her energy. Redirecting the person to another activity can also work.
Interestingly, dementia sometimes affects perception in such a way that environmental approaches can help reduce wandering. For instance, a black square painted on the floor in front of a doorway - or simply a black doormat - may be perceived as a hole, which can prevent the person from leaving the home.
Individuals with dementia may exhibit fixation, which is a behavior that involves obsessively focusing on an object, topic, or activity for a prolonged period. This can manifest as repeated questions about a specific subject, clinging to a particular object for comfort, or insisting on performing a task or routine repeatedly, despite it having been completed. These behaviors can be challenging for caregivers, causing frustration and potentially disrupting daily routines. To manage fixation, it's helpful to acknowledge the person's feelings and provide reassurance.
Offering alternatives that gently shift focus can be effective, such as introducing a new activity closely related to the fixation but different enough to engage their attention afresh. Keeping a regular schedule can also aid in reducing anxiety, which may underlie some fixation behaviors. Understanding and patience are key, as is maintaining a calm, supportive environment that meets the individual's needs while encouraging flexibility and adaptation to new activities.
Caring for someone with dementia presents unique challenges that require patience, understanding, and resilience. Strategies such as avoiding confrontation over misperceptions, adapting activities to maintain engagement and autonomy, providing clear and positive guidance amidst confusion, managing sundowning with a calm and structured environment, safeguarding against wandering, and addressing fixation with flexibility, are essential. Empathy towards the individual’s experience and maintaining a supportive environment can significantly improve their quality of life and ease the caregiving process. Remember, each person with dementia is unique; thus, caregiving strategies should be tailored to meet their specific needs and preferences. Above all, the well-being of both the caregiver and the person with dementia should be prioritized, with appropriate support and resources sought when needed.
