Just the Facts and More: Telling the Patient, Family and Friends

When you learn that a member of your family has Alzheimer's disease, you may become overwhelmed by feelings of confusion, guilt and loneliness. Moreover, as you assume the role of caregiver, you may feel hesitant to reveal the diagnosis to the rest of the family, to friends, and - perhaps most importantly - to the person with the disease, for fear their reactions will be difficult to manage. Following are some guidelines that you may use to decide how to discuss the disease with others.

Action Steps

Consider the person diagnosed.

• In deciding whether or not to tell the person about the diagnosis, respect his/her right to know what's wrong, but also be sensitive to the person's feelings and emotional state, medical condition, and ability to remember, reason and make decisions.
• Keep in mind that the person with Alzheimer's may suspect that something is wrong long before a doctor reaches a diagnosis. If you fail to give her any explanation, she may assume the worst. On the other hand, if you discuss the problem with her, she may feel relieved to learn that she has a physical illness, rather than a psychological one. Furthermore, the informed person may be able to participate in important medical, legal, financial and personal planning depending on the progression of the disease symptoms.
• Rely on professional experience. You may want to inform the person about the diagnosis through a "family conference" with the patient, other caregivers and a social worker. You may also want to involve a physician who has experience working with cognitively impaired individuals.
• Be sensitive to the person's reaction. He may not be able to understand all that the diagnosis means or he may deny your explanation. If this is the case, it's probably best to accept his reaction and avoid further detailed explanations of the disease.
• Reassure the person. Let the person know that you'll provide ongoing help and support, and do all you can to make your lives together fulfilling.
• When you sense the time is right, provide the person with follow-up information you feel she would benefit from knowing, such as an explanation of symptoms and the importance of continued care. For example, you may say, "Mom, because of your memory and other problems, you may have to let people help you more than you have in the past." (Note: You don't have to use the phrase "Alzheimer's disease" if you think it might upset the person.)
• Treat the person as an adult, and don't downplay the disease. As the disease progresses, remain open to the person's need to talk about his illness. The person may ask you about such activities as working, driving, or managing finances. Or the person may want to express such feelings as anger, frustration, and disappointment. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance.

Inform family and friends.

• Be honest about the person's condition. You'll probably feel relieved after discussing the disease with other family members and close friends. Be sure to explain that Alzheimer's is a medical condition and not a psychological or emotional disorder or contagious virus.
• Provide others with adequate information on Alzheimer's disease, including a description of common symptoms. The more family and friends learn about the disease, the more comfortable they may feel around the person. Share educational material from the Alzheimer's Association, such as the brochure, "When the Diagnosis is Alzheimer's." You may also want to invite close friends and family members to accompany you to a support group meeting sponsored by a local Chapter of the Alzheimer's Association.
• Don't leave yourself out of the conversation. Explain how the responsibility of caregiving has affected your life or may change your life in the future, so that others will have a better sense of how they can help.
• Ask for family support. Have several tasks in mind for people who say, "Please let me know if there's anything I can do to help you." Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
• Ask people to come for short visits, but suggest they call you before stopping. Keep in mind that the person may become anxious if too many people visit at one time. In addition, recommend specific activities such as playing a simple game, taking a walk, or looking through a book of photographs with the person.
• Don't overlook the role of children and teenagers in the life of your family member. Young children often are able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.
• Inform neighbors about the person's condition. Even if you've never socialized with your neighbors, they'll appreciate knowing the truth about the person's condition. They may have already observed the family member wandering through the neighborhood or acting strangely. If they understand the diagnosis, they'll be more likely to call if they sense the person needs help. Or they may volunteer to help you in an emergency.

Be true to yourself and to the person with Alzheimer's.

• Realize that some friends and even some family may drift out of your life. Some people may feel uncomfortable around the impaired person while others may not want to get involved in caregiving. Don't let these attitudes interfere with your commitment to caring for your family member and for yourself.

 

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 Mary Barringer, RN.C., Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Dallas, Texas; Eastern Massachusetts; Honolulu, Hawaii; Northern Virginia; Puget Sound, Washington; St. Louis, Missouri; and Western North Carolina.

Other resources include:

• Donna Cohen, Ph.D., and Carl Eisdorfer, Ph.D., M.D. (1986). "The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders." New York: New American Library.
• "When the Diagnosis is Alzheimer's." Alzheimer's Association, 1990.*
• "If You Have Alzheimer's Disease: What You Should Know, What You Can Do." Alzheimer's Association, 1991.*
• "Alzheimer's Disease: Especially for Teenagers." Alzheimer's Association. 1987.

* These materials are available through your local Chapter of the Alzheimer's Association.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.