Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer’s and related diseases have a progressive brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, or take care of themselves. In addition, dementia can cause mood swings and even change a person’s personality and behavior. This Fact Sheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia.
We aren’t born knowing how to communicate with a person with dementia—but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
1. Set a positive mood for interaction. Your attitude and body language communicate your feelings and thoughts stronger than your words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey your message and show your feelings of affection.
2. Get the person’s attention. Limit distractions and noise—turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
3. State your message clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.
4. 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.
5. 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.
6. Break down activities into a series of steps. This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he’s no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
7. When the going gets tough, distract and redirect. When your loved one becomes upset, 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.”
8. Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.
9. Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.
10. 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.
Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. 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:
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.
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 doesn’t occur out of the blue. 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 be-havior is disrupting the patterns that we create. Try a different approach, or try a different consequence.
What works today, may not tomorrow. The multiple factors that influence troubling behaviors and the natural progression of the disease process means 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.
Get support from others. You are not alone—there are many others caring for someone with dementia. Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer’s Association, a Caregiver Resource Center or one of the groups listed below in Resources to find support groups, organizations and services that can help you. Expect that, like the loved one you are caring for, you will have good days and bad days. Develop strategies for coping with the bad days (see the FCA Fact Sheet, Dementia, Caregiving and Controlling Frustration).
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.
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.
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.
People with dementia will often repeat a word, state-ment, question or activity over and over. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers. Sometimes the behavior is triggered by anxiety, boredom, fear or environmental factors.
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.
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.
Ensuring that your loved one is eating enough nutritious foods and drinking enough fluids is a challenge. People with dementia literally begin to forget that they need to eat and drink. Complicating the issue may be dental problems or medications that decrease appetite or make food taste “funny.” The consequences of poor nutrition are many, including weight loss, irritability, sleeplessness, bladder or bowel problems and disorientation.
People with dementia often have difficulty remembering “good” hygiene, such as brushing teeth, toileting, bathing and regularly changing their clothes. From childhood we are taught these are highly private and personal activities; to be undressed and cleaned by another can feel frightening, humiliating and embarrassing. As a result, bathing often causes distress for both caregivers and their loved ones.
Bathing Without a Battle , by Ann Louise Barrick, Joanne Rader, Beverly Hoeffer and Philip Sloane, (2002), Springer Publishing, (877) 687-7476.
36 Hour Day: Family Guide to Careign for People who have Alzheimer's Disease, Related Dementias and Memory Loss, (2011), Johns Hopkins Press Health Book.
Steps to enhancing communications: Interacting with persons with Alzheimer's disease. Chicago, IL: Alzheimer's Association (2012), 081312.01 770-10-0018
Communicating Effectively with a Person Who Has Alzheimer's , (2002), Mayo Clinic Staff, www.mayoclinic.com/invoke.cfm?id=AZ00004
The Validation Breakthrough: Simple Techniques for Communicating with People with “Alzheimer's-Type Dementia,” Naomi Feil , 2nd Edition 2002, Health Professions Press, Baltimore, MD, (410) 337-8539.
Understanding Difficult Behaviors:Some practical suggestions for coping with Alzheimer's disease and related illnesses , A. Robinson, B. Spencer, and L.White, (2001), Eastern Michigan University, Ypsilanti, MI, (734) 487-2335.
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s and other debilitating health conditions that strike adults.
FCA Fact Sheets. All Family Caregiver Alliance Fact Sheets are available free online. Printed versions are avilable for purchase for each title—send your requests to FCA Publications, 785 Market Street, Suite 750, San Francisco, CA 94103. For the full list, see: caregiver.org/caregiver/jsp/publications.jsp?nodeid=345
FCA Fact Sheet: Dementia, Caregiving and Controlling Frustration
FCA Fact Sheet: Taking Care of YOU: Self-Care for Family Caregivers
FCA Fact Sheet: Hiring In-Home Help
FCA Fact Sheet: Community Care Options
This service of the National Institute on Aging offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and research related to Alzheimer’s disease.
This service of the Administration on Aging offers information about and referrals to respite care and other home and community services offered by state and Area Agencies on Aging.
A nationwide program that identifies people with dementia who wander away and returns them to their homes. For a registration fee, families can register their loved one in a national confidential computer database. They also receive an identification bracelet or necklace and other identification and educational materials.
This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s statewide system of Caregiver Resource Centers. Reviewed by Beth Logan, M.S.W., Education and Training Consultant and Specialist in Dementia Care. Funded by the California Department of Mental Health. © 2004 Family Caregiver Alliance. All rights reserved. FS-CGTU20050610.