Advice from an Alzheimer's Patient
By Jeanne Capp, an early stage Alzheimer's patient
- Don't hurry me. Hurrying me tends to make me forget, and then I tend to get confused.
- If I forget something, remind me gently. If I seem to forget that company is coming or that we are due to be somewhere, help me realize that it is okay if we are a little late or that everything needed is not ready.
- Do not keep asking questions. This frustrates me and makes me feel like I am being tested.
- When I forget, either laugh with me or hug me, but please do not try to make excuses for me. When you do that, it makes me angry and I feel that you do not understand what I am feeling inside.
- When I say, "I don't know how to turn on the oven," just come and help me. No words are needed and chances are, tomorrow I may be able to do it on my own.
- When I tell you something "dumb" that I did, please listen and try to understand that what I am really trying to tell you is that I am scared and hurting. I need to be loved and given time to talk about what is happening to me.
- When I am silent and unable to sleep, chances are that I am struggling with my own fears about how this is going to hurt you as time goes on. I am asking myself what is going to happen to me and how we, as a family, are going to cope and survive.
- Try to understand that some days I almost convince myself that there is nothing wrong with me . . . and then there are days when I have no doubt that my head is not working normally. These latter days are the ones when you are most apt to find me down in spirit. Try to understand that I am really finding it difficult to believe that this is really happening to me. The big questions "why?" and "how long?" keep going around in my head.
Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999. For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:
Just the Facts and More: Feelings
Alzheimer's Disease affects a person's ability to think, communicate, and perform the basic activities of daily living. But like people of all ages, the Alzheimer patient experiences feelings of joy, sadness, fear, anger, and jealousy. As a caregiver, you need to recognize and respond to these feelings. A person with this disease needs to feel valued, worthwhile, and positive about life. Like many people in their later years, the person with Alzheimer's disease must cope with and adjust to many changes - from body image and retirement, to shifts in lifestyle and preparation for disability and death. Many people also look back over their lives and try to make sense of what they've accomplished. Often, for example, they review past relationships and try to make amends. The caregiver can learn to help the person with Alzheimer's disease deal with these issues by understanding the person's reactions to the effects of the disease. You can assist the family member in dealing with feelings by exercising patience, sensitivity, a sense of humor, and by using the following steps:
Treat the "patient" as a person.
- Appreciate and acknowledge the Alzheimer patient as a person. Through words and touch, try to do everything you can to relate to this individual as a valued human being with emotional and spiritual needs.
- Avoid talking about the person. People with Alzheimer's disease are often hurt when caregivers talk about them as if they're in another room. Typical are such comments as these:
- "She's giving us a lot of trouble."
- "Yesterday was a bad time for her."
- "She kept me up all night again." Instead of talking about the person, assume that she understands everything you're saying.
- Call the person with Alzheimer's disease by his or her name. Avoid cruel and dehumanizing descriptions such as "the bed-wetter," "gramps," or "granny." Also avoid isolating the individual from visitors. Communicate slowly and calmly.
- Speak slowly and in simple sentences. Slow down your rate of speech and lower the pitch of your voice.
- Give the person with Alzheimer's time to hear your words and prepare a response. Keep in mind that it can take up to a minute for the person with this disease to respond.
- Keep communication on an adult-to-adult level. Avoid baby talk or demeaning expressions. Smiles and handshakes go a long way to set the tone for adult interactions.
- Communicate one message at a time. The person with Alzheimer's disease can become confused by a long string of messages such as, "Good morning. Let's get dressed and come down and eat our breakfast." Instead, divide the message into sections such as:
- "Good morning. You need to get up now."
- "OK, you're up. Now let's get dressed."
- "OK, why don't we go downstairs now?"
- "It's time for breakfast."
- Keep in mind that the person with Alzheimer's disease probably can't tell time. Instead of saying, "John will be here at 2 o'clock." Say, "John will be here after your bath."
Be positive and reassuring.
- Be positive, optimistic and reassuring to the person. Use such expressions as "Everything will be OK. Don't worry. We're doing great. We're going to get through this. I'm here to help you." Expressing your feelings will help you release tension and help comfort the person.
- Use comforting and non-controlling statements. Try to identify feelings rather than argue about facts. For example, instead of arguing with the person about going outside, you can agree by saying, "Yes, it would be fun to go outside." Or put limits on the request by saying, "I want to go outside, too. Let's do it after we eat. I'm hungry!" As an alternative, you can distract the person by saying, "Yes, it's nice to go outside. That's a nice sweater you're wearing."
- Give praise for the simplest achievements and successes by making such comments as, "That's great," "You're doing really well," or "Oh, you did such a good job at that."
Tell the person what to expect.
- Prepare the person for what's about to happen. Instead of pulling the patient out of a chair or pushing the patient across the room, make such comments as, "We need to get up now." Then, gently assist the person to get out of the chair or move across the room.
- Provide suggestions and structure. For example, don't ask, "Do you want to take a bath?" Instead, say, "It's time to take your bath now."
Match your actions and words.
- Be aware of your body language. Even though you might use kind and gentle words, the person with Alzheimer's disease will pick up tension in your face and body. Your feelings will come out through the tone of your voice.
- Subtle differences in word choice and sentence structure will probably confuse the person. Use the same words in the event you need to repeat a message. The person with Alzheimer's disease won't see the similarity between the following statements. "Please sit down here," and "Why don't you come here and have a seat?"
- Maintain eye contact, smile, and use touch to comfort and reassure the person.
Help the person remain independent.
- Avoid taking responsibilities away from the person through such comments as, "Here, you can't do that. Give it to me. I'll do it for you." Instead of assuming that the person can't perform certain tasks, put the emphasis on what the person can do.
- Maintain your sense of humor and don't be afraid to kid around and joke with the individual. A person's sense of humor can remain intact during the various stages of the disease.
- Keep in mind that the person with Alzheimer's disease wants to contribute to the family's well-being. Don't be afraid to ask for help and cooperation with such requests as, "Could you please help me put these plates on the table?" The person might take twice as long to perform a task, but will feel the enjoyment of being helpful.
Talk about and name emotions.
- Help the person with Alzheimer's disease label emotions by making such comments as, "You look sad," "This must be really frustrating for you," or "You're really feeling angry right now, aren't you? You know, it's OK to feel angry." Acknowledging an emotion and giving it a label may encourage the person to discuss these feelings further. In addition, don't be afraid to share your feelings with such comments as, "I feel sad, too, but I'm here to help you and we'll get through this together."
- Avoid discouraging the person from talking about difficult and emotional subjects such as dying. Don't reject or dismiss feelings with such comments as, "Oh, you don't need to worry about that," or "That's not going to happen."
Repeat enjoyable activities.
- Remember the value of repetitive activities and exercise. Walking or performing an enjoyable activity such as sorting coins might help distract the person from feelings of anger or depression.
- Create the opportunity to reflect on life. Many patients enjoy going through old photo albums and talking about happy and enjoyable events. You may also want to sing familiar songs that evoke old memories and feelings.
- Allow the person with Alzheimer's to tell stories even if he repeats the same story over and over again. Help the patient explore his feelings with such comments as "You really liked visiting your uncle, didn't you. That was a really happy time for you."
Understanding the person's feelings and frustrations will help the caregiver react sensitively and gently to the needs of the Alzheimer patient.
One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.
The primary resource for this fact sheet was Lin Noyes, Director, Family Respite Center, Falls Church, Virginia.
Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Indiana; South Central Michigan; Cleveland, Ohio; Dallas, Texas; and Northern Virginia. Other Resources include:
- David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
- Howard Gruetzner. Alzheimer's: A Caregiver's Guide and Sourcebook. New York: John Wiley and Sons, 1988.
- Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press.
© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.
Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.
For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:
The Importance of Good Communication Skills
Communicating with a person with a dementing illness, such as Alzheimer's disease, can be a terribly difficult task. Often in the early stages of a dementing illness, people have trouble finding the words to express their thoughts, or may be unable to remember the meaning of simple words or phrases; but these problems are usually minor inconveniences or frustrations. The later stages may be much more difficult with language skills quite impaired, resulting in nonsensical, garbled statements, and great difficulty in understanding.
When people cannot comprehend what is being said, or cannot find the words to express their own thoughts, it can be painful, frustrating, and embarrassing for everyone. The following are some suggestions of things to think about when communicating with an impaired person.
Your Approach - You Set the Tone
- Think about how you are presenting yourself. Are you tense? Frowning? Are you being bossy or controlling? People with dementia are often extremely aware of nonverbal signals such as facial expression, body tension and mood. If you are angry or tense, they are likely to become angry, anxious, or annoyed.
- Try a calm, gentle, matter-of-fact approach. You set the mood for the interaction. Your relaxed manner may be contagious.
- Use a non-demanding approach - try humor, cajoling, or cheerfulness. Humor or gentle teasing often helps caregivers through difficult moments. Convincing someone to get out of bed or go to the bathroom is usually easier if you can make a game or joke of it. Ordering or demanding may be much less successful with some people.
- Try using touch to help convey your message. Sometimes touch can show that you care, even when your words don't, or when you are not understood. Some people shy away from being touched, but most find a gentle touch reassuring.
- Begin your conversation socially. Winning the person's trust first can often make a task much simpler. One way of doing this is to spend time chatting before approaching the task at hand. For example, you might spend ten minutes talking about weather, or family members, or some reassuring topic, to help get the person in a relaxed frame of mind. Again, you are creating a pleasant mood.
Things to Think About When You Speak
- Talk to the person in a place that is free from distractions, such as equipment noise, television, or other conversations. People with dementia often have very little ability to screen out distractions.
- Begin conversations with orienting information. Identify yourself, if necessary, and call the person by name. After creating a relaxed atmosphere, explain what it is you propose to do.
- Look directly at the person and make sure you have his or her attention before you begin to speak. If you cannot get the person's attention, wait a few minutes and try again. Move slowly. Gently touch an arm or hand to gain attention, while saying the person's name several times. Be careful not to startle him or her.
- It is important to be at eye level with the person, especially when talking to someone who is very impaired or who is hard of hearing.
- Speak slowly and say individual words clearly. This is particularly important for people with hearing problems or those who are in the later stages of dementia.
- Use short, simple sentences. People with dementia may not be able to remember more than a few words at a time. Pause between sentences and allow plenty of time for the information to be understood.
- Ask simple questions that require a choice of a yes/no answer, rather than open-ended questions. For example, instead of saying, "What would you like to wear today?" you might say, "Do you want to wear this green dress or this red one?" or "Is this the dress you would like to wear today?"
- Use very concrete terms and familiar words. As people become more impaired, they lose the ability to understand abstract concepts. Thus, you may need to say, "Here is your soup at this table," instead of "It's time for lunch." They may also revert to words from childhood or earlier in life, so that "Do you need to go to the bathroom?" may not be understood as easily as "Do you have to pee?"
- Talk in a warm, easygoing, pleasant manner. Try to use a tone of voice that you would like people to use with you.
- Keep the pitch of your voice low. Sometimes when people don't immediately understand us, we have a tendency to shout. This will simply upset the person with dementia and will make communication more difficult.
When Doing a Task Together
- Try to focus on familiar skills or tasks. People with dementing illnesses gradually lose the ability to learn new tasks, but may be able to do familiar work, hobby-related tasks or household chores even when very impaired.
- Give choices, whenever possible. For example, choosing whether to take a bath before or after dinner, or choosing which of two shirts to wear, may help the person continue to feel some sense of control over life.
- Allow plenty of time for the information to be absorbed. People with dementia often need much more time to absorb simple statements or instructions. Allow a moment of silence before gently repeating an instruction. This requires a lot of patience on the part of caregivers.
- Repeat instructions exactly the same way. It may take a number of repetitions before the person responds. If, after allowing for plenty of time, the instructions are still not understood, try using different key words, or demonstrating what you want the person to do.
- Break the task down into simple steps. Most of our daily tasks are very complex activities; the concepts of "getting dressed" or "taking a bath" may be too overwhelming and abstract for a person with a dementing illness. Instead, the person may be able to respond better to small, concrete steps - one part of the task at a time. For example, the first step in getting dressed might be unbuttoning pajamas. The second step might be taking the right arm out of the sleeve. Find out which steps the person is able to do and encourage those. Gently help with steps that are most difficult. Although this technique takes time and practice, doing tasks together can become more successful and pleasant.
- Modify the steps as the person becomes more impaired. You may need to break the tasks into even smaller steps, or you may need to gradually begin doing some of the steps that the person was able to do previously. Again, this takes time and patience on the part of the caregiver, but can be very rewarding for both the person with dementia and the caregiver.
- Praise sincerely for success. We all need to hear that we are doing a good job, and for people who are losing their abilities it may be particularly important. Praise doesn't need to be long or "gushy," but may be a simple "Thank you" or "You did a nice job."
When You Are Having Trouble Being Understood
- Listen actively and carefully to what the person is trying to say. If you do not understand, apologize and ask the person to repeat it. Let him or her know when you do understand by repeating it or rephrasing it.
- Try to focus on a word or phrase that makes sense. Repeat it back to the person and try to help him or her clarify what is being said.
- Respond to the emotional tone of the statement. You may not understand what is being said, but you may recognize that it is being said angrily or sadly. Saying, "You sound very angry," at least acknowledges the feeling, even if you cannot decipher the words.
- Try to stay calm and be patient. Remember the person is not doing this on purpose and is probably even more frustrated than you. Your calmness and patience will help create a caring atmosphere that will encourage the person to keep trying.
- Ask family members about possible meanings for words, names, or phrases which you do not understand. Sometimes people with dementia talk in a kind of code that may make sense to people who have known them for a long time. A name called over and over may be a close friend or relative from the past whose memory is reassuring. "Let's go down that street to my house," may be a very logical way of referring to a long corridor and room, when the names for these places have disappeared from memory. Language from childhood, such as names for bathroom habits or pet names for things, may reappear in the person's vocabulary. While it is helpful to use their words (e.g., "pee" or "tinkle"), it is important to continue to treat them as adults, not children.
Things Not To Do
- Don't argue with the person. This always makes the situation worse. Furthermore, it is important to remember that a person with dementia no longer has the ability to be rational or logical to the extent you do.
- Don't order the person around. Few of us like to be bossed around and the person with dementia is no exception. Even when your words are not understood, your tone of voice will be.
- Don't tell the person what he or she can't do. State directions positively instead of negatively. Instead of "You can't go outside now" try "Let's sit down here and look at these pictures."
- Don't be condescending. It is hard not to use a condescending tone of voice when you are speaking slowly and in short sentences. However, a condescending tone is likely to provoke anger, even if the words are not understood.
- Don't ask a lot of direct questions that rely on a good memory. Often our attempts at being sociable involve asking people about themselves. Remember that people with dementia have memory loss and may feel humiliated or angry if you ask questions they can no longer answer. Try rephrasing. For example, instead of "Who is this in the picture?" say "This must be your daughter." This approach allows the person to reply gracefully and noncommittally if he or she is not sure.
- Don't talk about people in front of them. It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is impossible to know how much someone with dementia understands, and this may vary from moment to moment.
When Verbal Communication Fails
- Try distracting the person. Sometimes simply diverting the person's attention to other activities (e.g., going for a walk, changing the subject, offering a snack, turning on the television) may be enough to diffuse an angry or anxious mood. Try again later.
- Ignore a verbal outburst if you can't think of any positive response. It is much better to ignore angry or agitated statements than to become angry yourself. You might also try apologizing and letting the subject drop, or changing the emotional tone of the conversation. (e.g., making a positive, cheerful comment, instead of an angry reply)
- Try other forms of communicating. There are lots of ways of communicating that don't involve words. Familiar songs, gentle touching, massage, favorite foods, or walking together can often demonstrate concern and affection more effectively than words. These modes of communicating can also help soothe a troubled person and take the edge off difficult moments.
Prepared at Eastern Michigan University in collaboration with the Alzheimer's Association (ADRDA) - Greater Ann Arbor Chapter with a grant from the Department of Mental Health. Authors: Anne Robinson, Beth Spencer, and Laurie White Copyright September, 1988. These materials may be duplicated with proper acknowledgment.
Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.
For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:
You Never Win an Argument with an AD (Alzheimer's Disease) Patient
Have you ever said… "I've told her not to put things in the trash can, but she doesn't listen."
"He tells me that he wants to go home. This is his home. We've lived here for 35 years. He gets mad at me when I tell him this is home."
"I get frustrated when Mom asks me what day it is. I start to lose my patience when I answer her for the fifth time."
These common phrases are repeated daily by Alzheimer caregivers. Families have a hard time accepting changes in communication with this illness. It is also hard to let go of old habits like arguing or reasoning with your spouse, parent or friend who does not understand what you say.
Remember to…
- Keep in mind that brain changes cause communication problems and irrational behavior. Your loved one is not behaving this way to annoy or irritate you. In fact, he is probably not aware of the impact of his actions.
- Realize you don't always have to be right. For instance, you will never "teach" your mother not to hide things in the wastebaskets. Instead, your family will learn to accept this behavior and check the wastebaskets before emptying them. Pick your battles before you start an argument.
- Don't try to reason with the person. The woman whose husband wanted to go home only frustrated both of them when she tried to explain that they were home. She learned to walk with her husband to the corner and return home. When her husband entered the house, he felt like he was home. It may be necessary to make our loved one's realities conform to ours.
- Distract the AD (Alzheimer's Disease) person instead of confronting him. Perhaps you have hidden the keys to the car, and Dad wants them. Instead of explaining why it isn't a good idea for him to drive, suggest that you'll help him. "I'll help you look for those keys, but first let's sort these clothes. We really need to get this done." Wait for an opportunity to redirect Dad without pushing his concerns aside.
- Be prepared to repeat yourself. When Mom asks a question over and over again, you will have to repeat the answer because of her lack of short-term memory. However, this can also work to your advantage. Distract Mom by offering her some ice cream and directing the conversation another way, or write the answer on a card or message pad.
Courtesy of the Greater San Francisco Bay Chapter Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.
For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at: