How to Communicate with Someone Who Has Dementia
By Alison McIntosh,
Once you know that a senior in your care is suffering from dementia, life will likely get a little harder over time. Dementia is the result of parts of the brain dying, often causing memory loss, speech difficulties, confusion, and even oppositional behavior that can make caregiving very difficult. Since dementia worsens over time, caregivers face an uphill battle when trying to take good care of seniors suffering from dementia.
One of the keys to successful caregiving of a person with dementia is how to communicate effectively. The following tips will help caregivers seeking to aid a dementia-suffering elderly loved one.
Start with a Positive Attitude
Many dementia patients will become nervous, frightened, defensive, or downright angry if confronted about their behavior in a negative way. This is an uncontrollable result of their health situation. Presenting yourself as smiling, open, and comfortable in both body and tone of voice immediately helps set a dementia sufferer at ease.
Leave your personal feelings at the door whenever possible. If, for example, the senior in your care has wandered during an episode of confusion and this frightens you, when you find the person, try to remember that he or she probably does not understand what has happened or why it has happened.
…a quiet moment to yourself before speaking…
You can say, “This frightened me because I worry for your safety,” but becoming accusatory, frustrated, or angry will only put the person into fighting mode. Remove your personal feelings from the situation as much as possible and look at it from the dementia patient’s perspective. He or she may have somehow come out of confusion in an unfamiliar or dangerous place, or with police cars flashing lights in his or her face, or any number of alarming scenarios. As a caregiver, you may find it easier to leave self out of the equation until such time as you have a moment to yourself. This may also mean taking a quiet moment to yourself before speaking in order to give your own feelings of stress or anxiety time to settle and relax. If you approach the person serenely, you are more likely to get a calm, productive response.
Care for yourself when you need it. If your senior needs to be placed in a facility for a few weeks for respite care while you attend to personal needs, find a way to explore that option. If you need another friend or family member to assist you, or to hire a professional for part of the day, it is worth doing if it increases the quality of your care when you are present. If you cannot separate your life from this care, you are more likely to burn out and potentially harm your communication with a senior with dementia out of your own frustration and stress. Caring for yourself is not a selfish act; in this case, it is the only way to continue to provide good care for the years dementia may last.
Show respect. This may go without saying for many caregivers, especially when they first begin, but it is easy to become desensitized to a person with dementia over time. Do not discuss the person as if he or she is not present. Despite not seeming to be aware of their surroundings all the time, many people with dementia are still listening and can understand tone of voice, if nothing else. Treat the person as you would any other adult with an illness, such as cancer or diabetes; be kind, sensitive, and careful not to condescend. Just because the person has trouble communicating verbally or living independently does not mean that he or she has lost the ability to reason or respond with emotions.
As stated above, many dementia patients become confused or experience memory loss. By asking short, simple questions, clearly stating your message in simple language and steps, and by removing distractions, you can cut down on this confusion.
Ask questions, if possible, that require simple yes or no responses. This gives the person’s brain less legwork to do as far as remembering words, describing feelings, or recalling details. Make these questions short, too—this takes a burden off the person’s brain and allows him or her to focus more effectively on answering the question. Model questions on this simple model: “Do you need this?” “Do you feel all right?” “Is this okay?” “Can you understand me?” “Do you know what happened?” etc.
…put things into steps and create routines.
Turn communication into a step-by-step process. Without making the senior in your care feel like a child, put things into steps and create routines. Make things like getting dressed, general hygiene such as bathing, and eating food into a series of understandable, simple steps. This will help the person suffering with dementia to remember. Standing nearby and giving gentle reminders when the person appears confused, rather than doing things for him or her, may help the person feel more independent. Using the same language and tone of voice when describing and reminding about these tasks will help the person’s brain remember more effectively. Visual reminders can also help, such as certain colors or labels on objects. This lightens the load of the brain in remembering each step of the process.
Turn off any noisemakers—television, radio, other people’s conversations—and go to a quiet place, preferably somewhere comfortable and familiar to the senior in your care. By limiting distractions, the senior’s brain will literally be noticing less about the surroundings (since the new stimuli are gone) and will be able to focus more effort on listening and processing.
How to Avoid a Meltdown
Put yourself in the shoes of a senior with dementia. You are less independent than you have been since early childhood; your memory is slipping, causing you to forget people and places you have known for decades; your senses are somewhat dulled and confused; you may “wake up” suddenly in a different and unfamiliar place, not sure how you got there. This can mean that dementia patients are confused, angry, sad, scared, or all of these. These kinds of emotions are inevitable.
Respond to emotions with tenderness. It may be the second or third time a memory has surfaced or an episode has occurred in a day, but, for the person with dementia, these feelings are fresh and can be hurtful. If you listen closely and with affection, allowing the person the space to express him- or herself, you can make the person feel reassured and comforted, knowing that someone will listen, no matter how upset he or she is.
Redirect if you have no other option. If the place or time is not a safe or appropriate one to listen to a dementia sufferer describe emotions and be vulnerable, offer something pleasurable. A walk, a film, a meal, an activity with someone they love (like friends, family, or a pet), a book you both enjoy reading aloud—all of these may postpone emotions for a while. This will need to be tailored based on the person in your care, but finding what triggers happiness (as opposed to sadness, anger, or confusion) can mean a smoother time visiting the doctor or relatives, running errands, or moving to a new home.
Remind the person of happy memories. Reminiscence therapy is a great and often informal way to remind even someone with memory loss of good times. Did the person have an especially loving home as a child? Find photograph albums and ask him or her to tell you stories of riding a bike for the first time or attending a school dance. Did the person have a good friend for decades? Ask questions about how the two of them met, or the first time the person knew the friend cared. By recalling happy memories, you can soothe and comfort the dementia patient, and also become closer, learning more about him or her. Even if you are a family caregiver and have known this person for years, you can learn the most surprising things through these kinds of nostalgic reminiscences.
Use physicality to express concern and make the person feel empowered. It is important not to stand too close or stand above someone, instead choosing to sit beside him or her or kneel down below the person’s eye level. This helps the person feel some modicum of control and that there is no need to feel intimidated by your presence. Also, using small physical gestures to indicate interest or compassion, such as patting a shoulder or holding a hand, can be a nonverbal way to communicate comfort and care to a dementia patient. Use these small changes to make sure the person feels understood and respected, and you may find that he or she feels more comfortable in your presence and becomes more verbally lucid.
People with dementia can become agitated and paranoid
Feel free to be protective. If you are a caregiver, you know that older people are somewhat more vulnerable than other types of people and can easily become victims of fraud or crime. If you suspect that someone is using the confusion or sadness of a patient with dementia to harm the person, step in and calmly remove your charge from the person’s presence. People with dementia can become agitated and paranoid as well, feeling certain that others may be out to get them or steal from them; if your sufferer sees that you will protect him or her, the patient will be more likely to remain calm and have fewer feelings of isolation and fear. Verbal reassurance and physical comfort are two excellent ways to indicate this protectiveness.
Promote independence whenever possible, and encourage it verbally. Mealtimes are a great way to do this; cut up food if your senior struggles with this, and have some spare napkins, since independent eating is more important than eating neatly. Giving enough time as well as small verbal signs of encouragement—“Take all the time you need,” or “I’m in no rush. Just let me know if you need help with something”—can go a long way toward making the person retain his or her dignity. If you feel yourself becoming restless or anxious because of a slower pace or messiness, try to introduce a new topic of conversation, put some flowers on the table, or play soft music to pass the time a little more pleasantly. Always remember that someone with dementia is often well aware that they require help, and it can severely impact self-esteem. Your small encouragements and patience mean a great deal.
Wandering and Confusion Episodes: How to Come Down
Many people with dementia will wander or be confused. This is a normal, if scary, part of the process. When the brain becomes lost in memory—lives in its past self, as Dr. Jeanne Murray Walker puts it in Psychology Today—the senior in your life may take small mental vacations and end up in another, long-gone reality. This may cause the senior to seek old haunts or try to find places of comfort from the past, or just to wander seemingly aimlessly in search of something he or she cannot find.
Betty Robison, Gerontology Educator at the Aging Institute at University of Pittsburgh’s Medical College, told SeniorsMatter that “individuals with dementia many times are restless… they are thinking about things from the past or they are out somewhere unfamiliar,” which can lead to wandering. She gives an example from her own personal life: “When my mother had Alzheimer’s, my brother left her in the car at the grocery store. She decided, for some reason, that she wanted to go to the furniture store, so she got out of the car and just walked away, with no thought about telling him or anything.” The ability to reason through these decisions, weigh the consequences, and consider all possible outcomes was something her brain had lost, and so she did not understand why her son was concerned for her safety.
“That capacity to reason things out is gone, so it can be very dangerous,” Robison says, even claiming lives. Of the people with Alzheimer’s, a frequent cause of dementia, six out of ten will wander in some capacity. Three out of ten will be lost. Robison’s neighbor was one of those three; he used to wander outside locally to feed the horses, he claimed, although he had not had horses for many years. His wife and neighbors did not seem to take the wandering seriously. One time, though, “He left and they didn’t find him– in fact, they found his body a month later,” says Robison. In fact, she says, out of the three of ten who wander, “if they are not found within 24 hours, 46% will die.” It’s up to caregivers to put safety measures in place and develop routines that reduce the risk of wandering.
It is important to understand that people who are wandering due to dementia will very rarely remember why they left or what happened. Becoming frustrated and angry at them is useless, since they can no more control the wandering than they can control how quickly their hair grows. It is now a part of their biology, and the way a caregiver responds will determine how dangerous it is.
Robison says, “It’s hard to know why they do this. Something they heard on TV or something they’re thinking about from the past… Something can trigger another situation where they leave, and they don’t have the capacity to find their way back.” Therefore, taking precautions to ensure safety is paramount.
She cautions against treating a person with dementia as a sedentary person.
Focusing specifically on communication, Robison suggests keeping dementia patients’ minds and bodies busy during the day. “We all want to be up and moving, so taking them for a walk, going with them, just activity throughout the day,” can prevent wandering, since they will be less restless and more likely to sleep well. She cautions against treating a person with dementia as a sedentary person. “Sometimes we have a tendency to wait on people too much,” she says, which can prevent them from taking part in physical and mental activities such as household chores or puzzles, so people with dementia become bored and wander. Communicating through body language and verbal communication that they can still participate in activities will encourage them to continue to be active, which may prevent wandering.
It is also important to find ways to communicate about pain. Robison notes that “this population isn’t always treated well for pain because they aren’t always able to say it,” so it is a priority to manage pain effectively. Effective pain management means better sleep, regular eating habits, regular exercise, and less wandering.
It is also wise to go along to get along, especially when it comes to benign delusions or lapses in memory. It is not harmful to the minds of dementia sufferers to believe the false realities their brain may create for them. They may seem to be revisiting their childhoods and confuse a caregiver with a teacher or a sibling. Going along with it and being positive and calming will not make their brain less able to contemplate reality and denying or becoming negative can make them sad or aggressive. Remember that their brains are sending signals to them, so, for their purposes, they are not remembering, they are reliving a past moment. It is still reality to them.
The Beatitudes Campus in Phoenix, Arizona cares for adults with moderate to severe dementia and uses this strategy rather than medicating or arguing with residents in response to these lapses in time and memory. The Campus has had many good results, according to an article published in The New Yorker. Playing along cheerfully can help keep dementia sufferers calm down and stay in an upbeat mood until the episode passes, say the doctors there, and it results in a much more pleasant mood around the entire building.
Communication with dementia sufferers is far from impossible, as long as the caregiver remains cheerful, positive, upbeat, and considerate of the person’s state of mind as well as his or her needs. Trying as it may be for a caregiver, it is equally if not more trying for the elderly one, for whom memories of the past may be more vivid than the realities of today and for whom a life of independence has been swapped for a life of needing help with the most basic tasks. Caregivers do well to remember the person inside the fog who must be gently led, carefully monitored, and protected during this vulnerable time of life.