Lifestyle Trends Reaching Out to People with Dementia
Many of us have parents, spouses or friends who are living with dementia. Although it’s often difficult to communicate with them, experts say they need respect and attention. What is the best way to reach out? Click here to view article.
As we get older, many of us have someone in our lives who has dementia. Maybe it’s your aging father in the nursing home, or your spouse who is showing early signs of Alzheimer’s, or even a neighbor. Maybe they’re not making sense or don’t respond when we say something. What’s the best approach to people whose minds may be debilitated?
Causes of Dementia
Dementia, including Alzheimer’s, is a progressive brain disorder that makes it increasingly difficult to remember things, think clearly, communicate with others or take care of yourself. Dementia can cause mood swings and even change personality and behavior. Yet, experts say, it’s important to remember that the person with dementia still has feelings and wants to communicate.
Richard Taylor, a retired psychologist, was diagnosed with Alzheimer’s-type dementia in 2001. Since then, he’s advocated for individuals with Alzheimer’s disease. In his blog, one of his goals is to show that people living with dementia are complete human beings “still possessing all the needs and wants” of every human, not “damaged goods.”
Because Alzheimer’s damages pathways in the brain, it’s difficult to find the right words and to understand what others are saying. Your loved one may incorrectly substitute one word for another or invent an entirely new word to describe a familiar object. He or she may get stuck in a groove—like a skipping record—and repeat the same word or question over and over. They may curse or use offensive language.
Some of the greatest challenges of caring for someone with dementia are the personality and behavior changes that often occur. Understanding what makes a person with dementia behave the way they do can help caregivers cope with the strange behaviors.
“I can’t begin to describe the relief my father felt (he actually broke down in tears) when I was able to explain to him that when Mom doesn’t recognize him but keeps asking for him by name, she is looking for her ‘young’ husband. He has found great comfort in starting to better understand her condition.” That comment is from the website for Creating Moments of Joy for the Person with Alzheimer’s or Dementia: A Journal for Caregivers, by Jolene Brackey.
The effects of dementia not only change over time but also may be better on some days and worse on others, so caregivers need to be flexible and open to whatever is happening. As the dementia gets worse, the person may not be able to communicate at all, but that doesn’t mean they don’t want to engage with others or don’t have needs or feelings.
Every Behavior Has a Purpose
If the person with dementia can’t tell us what they need, they may do something that seems inexplicable to us, like taking all the clothes out of the closet on a daily basis. Perhaps the person is fulfilling a need to be busy and productive.
Agitation may be triggered by a variety of things, including environmental factors, fear and fatigue. Most often, agitation, which includes irritability, sleeplessness and verbal or physical aggression, is triggered when the person feels that “control” is being taken away. Sometimes this can be handled in small ways, such as allowing someone who believes money is missing to keep small amount in a handbag or pocket.
People with dementia who wander, seemingly aimlessly, may be bored or looking for something. They also may be trying to fulfill a physical need—thirst or hunger, or a need for exercise. Discovering the triggers for wandering can provide solutions for dealing with this behavior.
Another characteristic of people with dementia is “sundowning”—a restlessness, disorientation and other troubling behavior that gets worse at the end of the day. Experts believe this behavior is caused by a combination of factors, such as exhaustion from the day’s events and changes in the person’s biological clock that confuse day and night. To alleviate this, you can increase daytime activities, particularly physical exercise.
“When someone is screaming from their room, what are they seeking?” Brackey writes. “Attention. When someone falls out of their wheelchair, what are they seeking? Attention. When someone is depressed in their room, what are they seeking? Attention.”
Connecting With Your Loved One
Many people might decide to stop visiting a parent or spouse, for example, because the person with dementia doesn’t seem to recognize them or doesn’t react to them. Yet new research shows that even when the person with dementia doesn’t remember a visit, the feelings will stay with them. A new study suggests that even if people with the mind-robbing illness quickly forget a visit or other event, the emotions tied to the experience may linger. The study included 17 Alzheimer’s patients who watched 20-minute clips of either happy or sad movies. Even though their memories of the films quickly faded, the patients’ feelings of happiness and sadness associated with the movies lingered for up to 30 minutes, the researchers reported (from “Emotional Life Lingers for Alzheimer’s Patients, Even as Memory Fades,” September 29, 2014,Medline Plus).
A website for caregivers (Dementia Care Notes) suggests a relaxed approach with people with dementia. “Sitting with a patient and talking can be a relaxing activity for both the patient and the caregiver. Patients often spend a large part of their days struggling to understand the world around them and doing what is necessary. . . . If we forget our helplessness and anxiety about the way the patients struggle, they will also feel less pressure and relax.” As an example, a son listened to his mother tell a long story about her brother running away from home and listed the cities he had visited and things he had done. “None of what she said was correct. By just sitting with her and letting her talk . . . the son experienced the strange world that was real to his mother, and just stayed with her for company. The mother, feeling happy that she had been heard, was more relaxed the whole day.”
Despite their problems, people with dementia often retain their ability to feel emotions and to sense emotions of others. A daughter, tired because of caregiving for her mother, one day sat near her mother and started talking about how tired and sad she was. Her mother reached out her hand and squeezed the daughter’s hand in sympathy. The shocked daughter realized that her mother, despite her dementia, retained her ability to feel love and sympathy, and had sensed the daughter’s sorrow and responded to it. . . . After this incident, the daughter started spending time with her mother just holding her hand, or talking of simple things, not asking questions or expecting answers, and found that she was able to connect back to the affectionate mother for at least some time every day.”
For other suggestions on how to communicate with people with dementia, see sidebar, “How to Communicate.”
Sources
“10 Tips for Connecting to Someone With Dementia,” May 2012, Next Avenue
“Communicating with people with dementia,” NHS
“Communication,” Dementia Care Notes
“Alzheimer’s: Tips for effective communication,” Mayo Clinic
“Changes in communication,” Alzheimer’s Association
How to Communicate
The Alzheimer’s Association offers suggestions for ways to approach and help someone with dementia that make it easier for both parties.
Experts say that it’s important to remember to respect people with dementia and avoid talking down to them or around them, instead of to them. You can best meet these challenges by using creativity, flexibility, patience and compassion. It also helps to not take things personally and maintain your sense of humor.
When first approaching a person with dementia:
- Identify yourself. Approach the person from the front and keep good eye contact; if the person is seated or reclined, go down to that level.
- Call the person by name. It helps orient the person and gets his or her attention.
- Use short, simple words and sentences. Lengthy requests or stories can be overwhelming. Ask one question at a time.
- Speak slowly and distinctively. Use a gentle and relaxed tone—a lower pitch is more calming.
- Patiently wait for a response. The person may need extra time to process what you said.
- Repeat information or questions as needed. If the person doesn’t respond, wait a moment. Then ask again.
- Turn questions into answers. For example, say “The bathroom is right here,” instead of asking, “Do you need to use the bathroom?”
- Avoid confusing and vague statements. Instead, describe the action directly: “Please come here. Your shower is ready.” Instead of using “it” or “that,” name the object or place.
- Encourage unspoken communication. If you don’t understand what is being said, ask the person to point or gesture. You may need to be more aware of nonverbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking.
- Be patient and supportive. Let the person know you’re listening and trying to understand. Show the person that you care about what he or she is saying and be careful not to interrupt.
- Avoid criticizing or correcting. Don’t tell the person what he or she is saying is incorrect. Instead, listen and try to find the meaning in what is being said. Repeat what was said if it helps to clarify the thought.
- Offer a guess. If the person uses the wrong word or cannot find a word, try guessing the right one.
- Focus on feelings, not facts. Sometimes the emotions being expressed are more important than what is being said. Look for the feelings behind the words. At times, tone of voice and other actions may provide clues.
- Turn negatives into positives. Instead of saying, “Don’t go there,” say, “Let’s go
