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:

Action 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.

Resources

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.

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:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)