Family Member’s Guide To Understanding Dementia
Ten Tips for Communicating with a Person with Dementia
Below are ten tips to help you, your family and your friends build bridges of communication with those with dementia.
Caring for a loved one with Alzheimer’s Disease, Parkinson’s, or other dementias can create a significant burden for families and volunteer caregivers. While in-home care from Loving Homecare and other providers can play a major role in alleviating this weight, we never completely remove a family’s responsibility and relationship with their loved one.
Just as it isn’t natural for adults to know how to communicate effectively with children, we aren’t born knowing how to build bridges with a person with dementia. While many of these make sense when we read them, it often takes awareness and intentionality to ensure they become characteristic of your communication with a person dealing with dementia.
After reading each, pause to think about how this would look in your communication with the person with dementia in your life, and which might make the greatest improvement in your relationship.
- Bring a Positive Mood to the Conversation. Studies show that our non-verbal communication communicates far more (up to 70% of our message) than our verbal communication. For those with dementia and cognitive impairment, body language, tone of voice, posture, eye contact, eye level, touch and more can help someone with dementia understand how you feel, and the emotions associated with the message you want to share.
While it may seem like an uphill battle in certain situations, your efforts to set a positive mood while speaking to your loved one will make a significant difference. Ensure that what you say, and how you say it, is shared in a respectful way.
- Provide Reassurance and Affection. As much as those with dementia may seem aloof or unconcerned with their self-image, this may not be true. Those with dementia can experience anxiety and embarrassment when they become aware that they do not “fit in.” They are aware of the pause and the tension when they try to offer helpful input to a conversation, and people act awkwardly, or say “yes, you’ve shared that 3 times already.”
People with dementia often live a life filled with disorientation and confusion. They may observe their environment, and forget how they got there, where they are, and what the circumstanced behind being in a strange place may be.
Neurologists and dementia experts sometimes say that those with dementia “gradually lose the ability to operate in our reality, and become stuck in theirs.” They may recall things that never occurred, or forget events that did.
Above all, be mindful to not fall into arguments about who or what is right. This doesn’t mean truth isn’t important. But when someone has dementia, this often will not advance the conversation or the relationship. Instead, keep conversation around your feelings, and use both words and non-verbal behaviors to offer a message of encouragement, support, and care. The touch can provide powerful assurance of safety and love more than words can. At times hugging and holding hands for example can elicit a response from your loved one more than words can.
- Get the person’s attention. Dementia significantly impairs one’s ability to focus. To get an idea of what it would be like from our perspective, look at how this organization uses taped goggles, sand in shoes, and duct-taped gloves to simulate how even simple coordinate movements can be difficult.
Most people don’t think of the importance of limiting distractions. Background noises that we learn to tune out, can be debilitating for those with dementia. Windchimes, the sound of traffic driving by, the background noise from the radio or television, the “thunk” of drops in water pressure when the sprinklers turn on, each of these can distract and further cause your message to be lost. If you are visiting your love one in a memory care facility, move them to a quieter place before having a conversation and connecting.
Once you have created the best environment for communication, make sure you have their attention and are in their eyesight. Make yourself “large” and inviting, and place yourself in the center of their vision (as dementia can often errode peripheral vision). Address them by name, then introduce yourself, and use the non-verbal ques above. As much as possible, get down to being eye level with them, and maintain eye contact during your interaction. This builds trust and eliminates the potential for them to feel intimidated.
- Break down activities into a series of steps. When we hear “take off your shoes” we often think of this as one step. However, there are many activities that are required to produce this outcome: bending over, reaching down, gripping the knot, untying it, loosening the laces, lifting the foot, then removing the shoe. Breaking activities down to simple steps helps guide the person toward success. This also allows the person with dementia to do as much of the process as possible, and you only offer assistance where required. Additionally, supporting your verbal instructions with visual instructions (“miming” an action like taking a bite, or pointing to where they need to reach) will help eliminate confusion.
- State your message clearly. When speaking, use clear and simple speech. Also remember to speak slowly, and in a gentle tone of voice. Likewise, try to keep your voice in a low register (higher pitches can be more difficult for aging ears and minds to hear). If your message isn’t understood, repeat it simply, and the same way as before, in a deeper refrain. Also, avoid using pronouns, and instead using people’s names to eliminate subject confusion.
- Remember the good old days. Reflecting on good memories can be one of the most calming and encouraging activities. While one may forget they repeated the same question multiple times in the past 10 minutes, they may easily recall what happened 50 years ago. Ask questions that draw upon memories from earlier in life, not events that would test their short term memory. Then, use this information to direct their thoughts on events that bring them joy.
- Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, “Would you like to wear your white shirt or your blue shirt?” Better still, show her the choices—visual prompts and cues also help clarify your question and can guide her response.
- Listen with your ears, eyes, and heart. Be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
- When the going gets tough, distract and redirect. If your loved one becomes upset or agitated, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, “I see you’re feeling sad—I’m sorry you’re upset. Let’s go get something to eat.”
- Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Handling Difficult and Repetitive Behavior
One factor that leaves families feeling most out of control when caring for a loved one with dementia is the unexpected changes to personality and behavior.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.
To start, consider these ground rules:
We cannot change the person. The person you are caring for has a brain disorder that shapes who he has become. When you try to control or change his behavior, you’ll most likely be unsuccessful or be met with resistance. It’s important to:
- Try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.
- Remember that we can change our behavior or the physical environment. Changing our own behavior will often result in a change in our loved one’s behavior.
Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior—and, when possible, try to accommodate them.
Behavior is triggered. It is important to understand that all behavior is triggered—it occurs for a reason. It might be something a person did or said that triggered a behavior, or it could be a change in the physical environment. The root to changing behavior is disrupting the patterns that we create. Try a different approach, or try a different consequence.
Check with the doctor first. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.
Get support from others. You are not alone—there are many others caring for someone with dementia. Locate your nearest:
- Area Agency on Aging
- Local chapter of the Alzheimer’s Association (www.alz.org)
- Your Local California Caregiver Resource Center
What works today, may not tomorrow. The multiple factors that influence troubling behaviors, and the natural progression of the disease process, mean that solutions that are effective today may need to be modified tomorrow—or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.
The following is an overview of the most common dementia-associated behaviors, with suggestions that may be useful in handling them. You’ll find additional resources listed at the end of this fact sheet.
People with dementia walk seemingly aimlessly, for a variety of reasons, such as boredom, medication side effects, or to look for “something” or someone. They also may be trying to fulfill a physical need—thirst, hunger, a need to use the toilet, or exercise. Discovering the triggers for wandering are not always easy, but they can provide insights to dealing with the behavior.
- Make time for regular exercise to minimize restlessness.
- Consider installing new locks that require a key. Position locks high or low on the door; many people with dementia will not think to look beyond eye level. Keep in mind fire and safety concerns for all family members; the lock(s) must be accessible to others and not take more than a few seconds to open.
- Put away essential items such as the confused person’s coat, purse, or glasses. Some individuals will not go out without certain articles.
- Have your relative wear an ID bracelet and sew ID labels in their clothes. Always have a current photo available should you need to report your loved one missing. Consider leaving a copy on file at the police department or registering the person with the Alzheimer’s Association Safe Return program or other emergency tracking service.
- Tell neighbors about your relative’s wandering behavior, and make sure they have your phone number.
- Try a barrier like a curtain or colored streamer to mask the door. A “stop” sign or “do not enter” sign also may help.
- Add “child-safe” plastic covers to doorknobs.
- Consider installing a home security system or monitoring system designed to keep watch over someone with dementia. Also available are new digital devices that can be worn like a watch or clipped on a belt that use global positioning systems (GPS) or other technology to track a person’s whereabouts or locate him if he wanders off.
- Loving Homecare in-home memory care provides caregivers that can help with this, but we also are familiar with the various wandering prevention and monitoring technologies. Ask us about these options
Agitation refers to a range of behaviors associated with dementia, including irritability, sleeplessness, and verbal or physical aggression. Often these types of behavior problems progress with the stages of dementia, from mild to more severe. Agitation may be triggered by a variety of things, including environmental factors, fear, and fatigue. Most often, agitation is triggered when the person experiences “control” being taken from him or her.
- Keep dangerous objects out of reach.
- Allow the person to do as much for himself as possible—support his independence and ability to care for himself.
- Reduce noise, clutter, or the number of persons in the room.
- Maintain structure by keeping the same routines. Keep household objects and furniture in the same places. Familiar objects and photographs offer a sense of security and can suggest pleasant memories.
- Acknowledge the confused person’s anger over the loss of control in his life. Tell him you understand his frustration.
- Distract the person with a snack or an activity. Allow him to forget the troubling incident. Confronting a confused person may increase anxiety.
- Reduce caffeine intake, sugar, and other foods that cause spikes in energy.
- Try gentle touch, soothing music, reading, or walks to quell agitation. Speak in a reassuring voice. Do not try to restrain the person during a period of agitation.
The loss of bladder or bowel control often occurs as dementia progresses. Sometimes accidents result from environmental factors; for example, someone can’t remember where the bathroom is located or can’t get to it in time. If an accident occurs, your understanding and reassurance will help the person maintain dignity and minimize embarrassment.
- Use signs (with illustrations) to indicate which door leads to the bathroom.
- Establish a routine for using the toilet. Try reminding the person or assisting her to the bathroom every two hours.
- Schedule fluid intake to ensure the confused person does not become dehydrated. Know that some drinks (coffee, tea, cola, or beer) have more of a diuretic effect than others. Limit fluid intake in the evening before bedtime.
- Incontinence pads and disposable undergarments, combined with easy-to-remove clothing (elastic waistbands or velcro), help minimize the likelihood of accidents
- Lastly, make your life easier by providing clothes that are easily washable.
People with dementia will often repeat a word, statement, question, or activity over and over. Sometimes the behavior is triggered by anxiety, boredom, fear, or environmental factors. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers.
- Avoid reminding them that they just asked the same question. Try ignoring the behavior or question, and instead try refocusing the person into an activity such as singing or “helping” you with a chore.
- Don’t discuss plans with a confused person until immediately prior to an event.
- Provide plenty of reassurance and comfort, both in words and in touch.
- Try distracting with a snack or activity.
- You may want to try placing a sign on the kitchen table, such as, “Dinner is at 6:30” or “Lois comes home at 5:00” to remove anxiety and uncertainty about anticipated events.
- Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.
People with dementia often have difficulty remembering “good” hygiene, such as brushing teeth, toileting, bathing, and regularly changing their clothes. As a result, bathing often causes distress for both caregivers and their loved ones.
- Think historically of your loved one’s hygiene routine — did she prefer baths or showers? Mornings or nights? Did she have her hair washed at the salon or do it herself? Was there a favorite scent, lotion, or powder she always used? Adopting—as much as possible—her past bathing routine may provide some comfort.
- If your loved one has always been modest, enhance that feeling by making sure doors and curtains are closed. Whether in the shower or the bath, keep a towel over her front, lifting to wash as needed. Have towels and a robe or her clothes ready when she gets out.
- Be mindful of the environment, such as the temperature of the room and water (older adults are more sensitive to heat and cold) and the adequacy of lighting. It’s a good idea to use safety features such as non-slip floor bath mats, grab-bars, and bath or shower seats. A hand-held shower might also be a good feature to install. Remember—people are often afraid of falling. Help them feel secure in the shower or tub.
- Never leave a person with dementia unattended in the bath or shower. Have all the bath things you need laid out beforehand. If giving a bath, draw the bath water first. Reassure the person that the water is warm—perhaps pour a cup of water over her hands before she steps in.
- If hair washing is a struggle, make it a separate activity. Or, use a dry shampoo.
- If traditional bathing is too much of a challenge on some days, it’s ok to have a caregiver or family member provide a sponge bath.
Seeing a loved one suddenly become suspicious, jealous, or accusatory is unsettling. Remember, what the person is experiencing is very real to them. It is best not to argue or disagree. This, too, is part of the dementia—try not to take it personally.
- If the confused person suspects money is “missing,” allow her to keep small amounts of money in a pocket or handbag for easy inspection.
- Help them look for the “missing” object and then distract them into another activity. Try to learn where the confused person’s favorite hiding places are for storing objects, which are frequently assumed to be “lost.” Avoid arguing.
- Take time to explain to other family members and home-helpers that suspicious accusations are a part of the dementing illness.
Restlessness, agitation, disorientation, and other troubling behavior in people with dementia often get worse at the end of the day and sometimes continue throughout the night. Experts believe this behavior, commonly called sundowning, 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.
- Increase daytime activities, particularly physical exercise. Discourage inactivity and napping during the day.
- Watch out for dietary culprits, such as sugar, caffeine, and some types of junk food. Eliminate or restrict these types of foods and beverages to early in the day. Plan smaller meals throughout the day, including a light meal, such as half a sandwich, before bedtime.
- Plan for the afternoon and evening hours to be quiet and calm; however, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game, or listen to soothing music together.
- Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion. At minimum, keep a nightlight in the person’s room, hallway, and bathroom.
- As a last resort, consider talking to the doctor about medication to help the agitated person relax and sleep. Be aware that sleeping pills and tranquilizers may solve one problem and create another, such as sleeping at night but being more confused the next day.
- It’s essential that you, the caregiver, get enough sleep. If your loved one’s nighttime activity keeps you awake, consider asking a friend or relative, or hiring someone, to take a turn so that you can get a good night’s sleep. Catnaps during the day also might help.
- Make sure the home is secure, so Sundowning doesn’t become elopement.
Additional Problem Areas
- “Shadowing” is when a person with dementia imitates and follows the caregiver, or constantly talks, asks questions, and interrupts. Like sundowning, this behavior often occurs late in the day and can be irritating for caregivers. Comfort the person with verbal and physical reassurance. Distraction or redirection might also help. Giving your loved one a job such as folding laundry might help to make her feel needed and useful.
- Hallucinations (seeing or hearing things that others don’t) and delusions (false beliefs, such as someone is trying to hurt or kill another) may occur as the dementia progresses. State simply and calmly your perception of the situation, but avoid arguing or trying to convince the person that their perceptions are wrong. Keep rooms well-lit to decrease shadows, and offer reassurance and a simple explanation if the curtains move from circulating air, or if a loud noise such as a plane or siren is heard. Distractions may help. Depending on the severity of symptoms, you might consider medication.
- Verbal outbursts such as cursing, arguing, and threatening often are expressions of anger or stress. React by staying calm and reassuring. Validate your loved one’s feelings and then try to distract or redirect his attention to something else.
- Sexually inappropriate behavior, such as masturbating or undressing in public, lewd remarks, unreasonable sexual demands, even sexually aggressive behavior, may occur during the course of the illness. Remember, this behavior is caused by the disease. Develop an action plan to follow before the behavior occurs, i.e., what you will say and do if the behavior happens at home, around other relatives, friends, or paid caregivers. If you can, identify what triggers the behavior.
- People with dementia may become uncooperative and resistant to daily activities such as bathing, dressing, and eating. Often this is a response to feeling out of control, rushed, afraid, or confused by what you are asking of them. Break each task into steps and, in a reassuring voice, explain each step before you do it. Allow plenty of time. Find ways to have them assist to their ability in the process, or follow with an activity that they can perform.
Orange County Caregiver Resource Center
Phone: 714-446-5030 | 800.543.8312
USC Family Caregiver Resource Center
Address: 3715 McClintock Ave, Los Angeles, CA 90089
Other Organizations and Links
Alzheimer’s Association Safe Return Program
A nationwide program that identifies people with dementia who wander away and returns them to their homes. For a fee, families can register their loved one in a national confidential computer database. Participants receive an identification bracelet or necklace and other identification and educational materials.
Alzheimer’s Disease Education and Referral (ADEAR) Center
A service of the National Institute on Aging that offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education, and research related to Alzheimer’s disease.