How to Engage with Someone Who Has Dementia
Engaging with someone who has dementia can be a challenging yet incredibly rewarding experience. Dementia is a group of diseases that affect several areas of the brain. Specifically, dementia affects parts of the brain associated with language.
There are about five million people with age-related dementia in the United States, according to the Institute for Dementia Research and Prevention. Accounting for up to 70% of all cases of dementia, Alzheimer’s disease is the most common form of the disease. All types of dementia can affect communication skills.
Dementia is a progressive condition, which means the symptoms get worse over time. As dementia progresses, meaningful engagements become increasingly fleeting. If you know how to engage with someone who has dementia, though, you can increase the number of meaningful engagements you share and the duration of those visits.
Understanding the progressive brain changes associated with dementia and learning how these changes can affect communication, can help prepare you for engaging with a friend or family member with dementia.
How Dementia Affects Communication
Dementia gradually reduces a person’s ability to communicate. How and when language problems develop depends on the individual, the type of dementia and what stage it’s in.
There are several types of dementia, and each affects the brain differently. Frontotemporal dementia (FTD) affects the frontal and temporal lobes of the brain, for example, and these areas of the brain are associated with speech, remembering the names of objects and meaning of words and recognizing familiar faces and objects. People with FTD may show signs of language problems earlier than will those with other forms of dementia.
Another type of dementia, known as Lewy body dementia, affects the cerebral cortex in addition to other parts of the brain. The cerebral cortex, which is the outer layer of the brain, is responsible for controlling information processing, perception, thought and language.
Communication problems can vary from day to day and vary by time of day. Some people with Alzheimer’s and other types of dementia experience “sundowner’s syndrome,” in which their symptoms worsen in the late afternoon and evening.
In the early stages of dementia, a person will have trouble coming up with the right words or names. In time, they will have memory problems and difficulty understanding basic everyday facts. Eventually, it becomes a struggle to express thoughts and emotions. In the last stages of dementia, he or she will not be able to tell you about pain, hunger, fear or joy; he or she may not understand you when you try to express your thoughts or feelings, or when you try to explain something. This progressive deterioration of communication can be frustrating and frightening, both for the person with dementia and for caregivers.
As dementia progresses, you may notice that your family member struggles to come up with a word or name, uses a familiar word repeatedly and describes a familiar object rather than calling it by its name. Your family member might also lose a train of thought easily and have trouble organizing words in a logical order. If your family member speaks English as a second language, he or she might revert to a native language. People with dementia frequently speak less often than they did before developing the disease, and many people with dementia rely on gestures more than spoken words.
Dementia can also affect cognitive abilities, which means the disease can affect how the brain processes information. In other words, his or her thought processes may be slower than before, and he or she may not be able to understand complex ideas. Cognitive decline can also affect communication, in that it may take longer for your friend or family member to understand what you are saying, process the information and work out how to respond.
Other factors, such as pain, discomfort, illness or the side effects of medication can affect the communication skills of someone with dementia. If you suspect this is the case, speak with your friend or family member’s doctor or care provider.
Communication Throughout the Stages of Dementia
Communication is how a person expresses needs, desires, feelings, perceptions and knowledge. Because it is how humans relate to one another, communication is an essential part of relationships. Engaging with other people involves more than words – communication also incorporates facial expressions, body language and tone of voice.
Because of the brain changes caused by dementia, communicating with someone with the condition takes understanding, empathy, good listening skills and a great deal of patience at each stage. At every stage of dementia, it is important to speak clearly, calmly, slowly and with respect. Avoid yelling or talking to your friend or family member as you would speak to a child.
Communication in the Early Stage of Dementia
During the early stages of dementia, a person is still able to participate in meaningful conversations and engage in social activities. He or she might repeat stories, though, or have difficulty coming up with the right word. In some cases, the stimulation of social interactions can overwhelm a person with dementia as he or she struggles to keep up with the conversations.
Tips for successful communication during the early stages of dementia:
- Try to avoid making assumptions about someone’s ability to communicate simply because he or she has dementia, as dementia affects each person differently
- Do not exclude someone with dementia from conversations, especially from conversations that pertain to that person. Instead, give them an opportunity to speak.
- Speak directly to the individual rather than speaking about the person to his or her caregiver or companion
- Give the person time to respond. Take time to listen carefully as your friend or family member expresses his or her thoughts, feelings and needs. Do not interrupt unless he or she requests your help.
- Ask your family member or friend what they activities they still feel comfortable doing. Ask about things you could do to help make them feel more comfortable during interactions.
- Find out which methods of communication are most comfortable for your family member or friend. While some people prefer face-to-face conversations, others may find such encounters to be too confusing and prefer a different form of communication. Your friend or family member might have an easier time engaging through email or phone calls, for example.
- Sundowner’s syndrome tends to develop in the early to middle stages of dementia. If your friend or family member shows signs of sundowning, such as becoming agitated or wandering as the sun goes down, plan your communications accordingly. For example, discuss the most recent trip to the doctor during the morning hours and plan on a sing-along later in the day.
- Don’t be afraid to laugh. Humor can lighten the mood and facilitate communication, and a smile can brighten almost every room.
- Stay engaged and don’t pull away, especially when things get difficult. Early stages of dementia are scary for everyone, including you. Chances are that your friend or family member cherishes your honesty, friendship and support, even if he or she cannot always express it properly.
Communication in the Middle Stages of Dementia
The middle stages of dementia can last for many years. Progression of the disease causes your friend or family member to have an increasing difficulty communicating. The individual will also require greater amount of direct care, which means he or she will have to engage with you or other caretakers more often.
Tips for successful engagement during the middle stages of dementia:
- Whenever possible, engage your family member or friend in a one-on-one conversation. Talking with large groups of people can be stressful, especially for someone who already has trouble with communication. Choose a quiet location to minimize distractions.
- Speak slowly and clearly. Keep conversations simple to reduce confusion. If your friend or family member tires quickly or becomes confused easily, keep conversations short. Confusion and fatigue can make poor communication worse.
- Make sure your body language and facial expressions match the conversation and your mood
- Maintain eye contact while speaking and while listening. It shows that what your friend or family member is saying is important, and that you care about his or her thoughts and opinions.
- Be patient. Give your friend or family member plenty of time to respond. It may take a few moments for him or her to think about what to say and then to find the right words to say it.
- In some cases, a person with dementia becomes confused as to what is true and what is not. If your friend or family member says something you know is not true, try to determine if there is a deeper meaning to what he or she says. For example, if your friend or family member insists that it is time to go to work, it may be because they don’t feel involved or they want to feel useful. If there is no deeper reason, try to steer the conversation in a new direction.
- Offer reassurance and encourage the person to explain his or her thoughts. This helps your friend or family member understand that their thoughts, feelings and experiences are still important.
- Ask one question at a time then wait for an answer. If you do not get an answer, try again later, but ask it in a slightly different way. Sometimes you need to take a different approach to make a connection.
- Ask yes or no questions, as they are easier to answer. Instead of asking what he or she would like to drink, ask specific questions, such as “Would you like some coffee?”
- Avoid correcting or criticizing the person’s attempts at communicating or engaging with others. Instead, listen closely to what he or she is saying and watch their body language and facial expressions, which can help you find meaning in what they are trying to express.
- Repeat what the individual says to clarify important points, especially if you are confused. Sometimes a person with dementia choose the wrong word or phrase without realizing it; hearing you repeat it back can help them find the right words.
- Avoid arguments. Disagreements can happen at any stage in life, but they can get out of hand when they involve someone with dementia. Try to overlook those instances in which your friend or family member with dementia says something disagreeable.
- When disagreements happen, distract and redirect attention to something the individual enjoys. Go for a walk, for example, or put on some music. Prior to redirection, though, connect with your friend or family member on a personal level. You can say something along the lines of, “I am sorry you are upset. Would you like something to eat?” This shows that you take his or her feelings seriously, and that you are willing to help them feel better.
- Provide clear step-by-step instructions when undertaking tasks that require your guidance. Avoid complex or lengthy instructions, as they may overwhelm your friend or family member.
- Offer visual cues – giving a “thumbs up” or a smile encourages the person to keep going. Demonstrate the task then give the individual an opportunity to try it.
- Write notes. Written words are often easier to understand than spoken words. Use a label maker to label cabinets and drawers; put a sticky note on the bathroom mirror as a reminder to brush teeth.
Communication in the Late Stage of Dementia
The last stages of dementia may last for several weeks, months or even years. The progressive damage done by dementia may prevent someone from speaking, so your friend or family member may eventually rely on facial expressions, vocal sounds and other forms of nonverbal communication to express needs and wants. In these late stages, around-the-clock care is typically required.
Tips for successful engagement during the middle stages of dementia:
- Approach your friend or family member from the front. Approaching from the rear may startle him or her.
- If your friend or family member has trouble remembering who people are, identify yourself every time you meet him or her. Struggling to remember someone’s name is stressful, even for people without dementia.
- Position yourself so that your friend or family member can see your face clearly. Sit or stand close enough for him or her to hear and see you but not so close as to cause discomfort. Make sure your body language is open and relaxed.
- Encourage nonverbal communication and use it yourself in addition to verbal communication. If you do not understand the request or information the person is trying to convey, ask him or her to point or gesture. Use nonverbal communication by pointing, gesturing, nodding and guiding the individual.
- Enlist all the senses to facilitate communication. Use touch, sights, sounds, smells and tastes to engage with your friend or family member. Give him or her hugs, hold hands, listen to music, share a delicious meal and take in the relaxing aromas of a flower garden.
- Make the most of the good days and provide extra compassion and support on the bad days
- Consider the emotions and needs behind the words, sounds or gestures your friend or family member uses, as verbal and nonverbal forms of communication can fail someone in the advanced stages of dementia. Look for other cues, such as an uncomfortable environment or scary situation, to add context. This is especially helpful when your friend or family member is in a state of extreme discomfort or anxiety and unable to identify or articulate his or her feelings.
- Always treat your friend or family member with respect. Avoid talking down to the individual or speaking as if he or she isn’t there. Dementia can rob a person of his or her memories and ability to communicate – it is up to you to maintain his or her honor.
- It is okay if you do not know what to say – your presence, smile and friendship and the most important things you can bring to any relationship
For more information on how to engage with someone who has dementia, consult with the memory care professionals at Tudor Heights. The highly trained team in our secure Valeo™ memory care neighborhood at Tudor Heights focuses on safely maximizing the abilities and well-being of residents with dementia, Alzheimer’s disease and other types of memory impairments. Contact our friendly team to learn more about our wellness philosophy and memory care programs in Baltimore, MD, today.