As we know, people who have dementia become increasingly unable to understand or explain to others what they are thinking or feeling. This happens because of the damage to their brain caused by the disease. Earlier in the illness, people are usually able to tell us when they are in pain or distress, but this becomes less and less likely as the disease progresses. Later in the disease, it is more likely to be someone’s actions, rather than their words, which communicate to us that they are in distress.
Unfortunately, all too often these behavioral expressions are not understood as distress; rather, they are often assumed to be the inevitable consequences of dementia, as part of the disease itself. Sadly, this assumption has frequently led to the overuse of anti-anxiety and anti-psychotic medications, which means that the actual underlying cause of the distress is never addressed, and the person with dementia is left to suffer.
As caregivers, our job is to understand what the person with dementia is trying to tell us, through their actions, sounds, facial expressions, and body language rather than their words. The important thing to realize is that their actions ALWAYS mean something, even if it is not always obvious to us. If someone is pushing us away, there is a reason. If someone spits out their food, there is a reason. If someone constantly rubs their knee, there is a reason. If someone rejects care, it means they are in distress, possibly in pain, and in order to help them, we need to find out what is causing their distress. If someone is moaning, or pushing us away, it is not “the dementia,” it is not “just the way they are,” it is the ONLY way they have to tell us that they are uncomfortable. By rejecting our care, they are telling us that something is the matter. The following are typical situations where residents may experience distress:
Slow down, you’re moving too fast. As someone’s dementia advances, it gets harder and harder to understand what is happening in the world around them. One of the most helpful things a caregiver can do is slow down when providing care. If the person with dementia is sitting, on their bed, or in a chair, try to get on eye level with them. Make sure they can see you, speak slowly, and explain what you are doing as you go along. If someone is resisting, it is often because they don’t grasp what you are doing, and things are going too fast for them to follow. As you progress, if they start to get upset, stop. You may even need to leave the room and come back later.
When something hurts. How does the person with dementia convey that they are in pain? Sometimes they can tell us, sometimes the look on their faces or their behavior makes it obvious. However, especially as their dementia progresses, they may not be able to tell us because of their confusion and lack of insight. They may call out, moan, or become very agitated, sometimes even striking out at caregivers. Rejecting care in this way is especially common first thing in the morning. Too often in the past, we have assumed this behavior was an inevitable consequence of having dementia, and only anti-psychotic medications would alter the behavior. Frequently, however, the person is acting that way because they are in pain, which anti-psychotic medications do not help; in fact, anti-psychotics can even impede solving the problem, because if they sedate the person, we may never find out that the person is actually in pain. If they were treated for the pain instead, often the behavior goes away, because the person is no longer suffering. Using a behavior-based pain assessment tool (such as the PAINAD, see the sidebar) for people with advanced dementia can be a huge help.
Making the most of meals. In addition to any physical problems or medication issues that may affect appetite and eating ability, people with advanced dementia may forget whether they have eaten, be unable to recognize some foods or to use cutlery, have difficulty chewing or swallowing, be easily distracted and/or be unable to communicate their food likes and dislikes--- resulting in a mealtime which can be frustrating, confusing and extremely stressful, with residents sometimes refusing to eat or spitting food out. It is essential that residents never be forced to eat, and that they be given plenty of time. Making finger food available can be helpful, as being fed is often an unpleasant experience. Finally, food we enjoy when we are actually hungry is food we are more likely to eat. Making appealing food available around the clock, in small, manageable amounts greatly increases the likelihood that someone with dementia will eat.
Calming the Waters. For many people with dementia, bathing can become painful, confusing, invasive, even terrifying…with behaviors ranging from distress (crying, moaning, shaking) and avoidance (pulling away or trying to leave) to verbal and physical aggression (cursing, striking and biting). What could be a pleasurable activity instead becomes something to be dreaded by both residents and their caregivers. Sometimes it is the water that is disturbing, other times it is the lack of privacy, the bathing environment, the confusing sequence of tasks (undressing, washing, hair washing, drying, dressing, etc.), or perhaps they are in pain. There are many strategies to make this experience more pleasant, including changes in the bathing environment, bed and towel baths, no-rinse or dry soaps and shampoos, and even bathing less frequently.
What’s going on?! Over-stimulation is a common source of distress for people with dementia, especially in the later stages. Noises in the environment---such as overhead pagers, background music, TVs and radios, bed/chair alarms, cleaning equipment, and call bell systems--can be upsetting because of the person’s loss of ability to understand or distinguish among sounds or to locate them. Noise can get in the way of everyday communication by blocking, distorting or changing what someone hears. Large group activities may become increasingly difficult for some residents, and televisions in the day room may also be disruptive. The surge in activity at shift time can be disturbing. Eliminating some of these stimuli can be very helpful, as can assisting people back to bed if rest is what they need. Rest is very important, and waking someone up from a deep sleep to provide care or bring a meal, or for any other reason, is rarely a good idea.
Share what you know! When you learn something about what helps make a resident comfortable, be sure to share the information with other members of your team, as well as staff on other shifts. Small details can make a big difference, for the resident, and for you!
The important thing to keep in mind is that resisting may be the only way a resident can communicate their distress---they really and truly don’t have the words. Discovering the reason may be a relatively fast process, or it may take a lot of effort on your part and your teammates’, but there is always a reason, and when you find the reason, you are on the way to finding a solution.