Telling Patients the Truth

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Caregiving Tips Tips for Early Stage AD Twelve Steps for Caregivers Coping Tips for Caregivers Finding an Elder Law Attorney Care Tips for Men Depression Safety and Falls Geriatric Care Manager Anesthesia What is Respite Care? Adult Day Care: Respite for Caregivers Types of Residential Care Selecting an In-Home Health Agency Selecting a Nursing Home Considering Hospice Benefits of Hospice End Stage Care Choices Autopsy: Questions and Answers You Can't Win Arguments Communicating with Dementia Patients Telling Patients the Truth Visiting in Adult or Nursing Homes Sleep Disturbances Wanting to Go Home Wandering Sundowning Managing Aggression Visiting the Doctor Feeding & Maintaining Good Nutrition Bathing Toileting and Incontinence Activities Driving Vacationing or Traveling Holidays A diagnosis of Alzheimer's disease is distressing news for any family. There are a number of things family members can say to help the diagnosed individual cope with the illness. By the time diagnosis is made, the individual is probably aware that something is wrong. He is probably frightened and working very hard to conceal the symptoms from family and friends. He needs to know that something is causing the problems he is experiencing, that he has a disease which is affecting his memory and other parts of his brain, and that it will probably get worse in time. The family does not have to call it "Alzheimer's disease" if they think the term will be upsetting. However, it is helpful for some patients to have a name for their illness. Many people in the early stages of the disease think they are going crazy. A person is likely to feel relieved to know that they have a disease of the brain and not an emotional illness. This knowledge may help the diagnosed individual feel less worried and depressed and, as a result, memory and intellectual functioning may actually improve, at least temporarily. The amount of information an individual will be able to understand depends on how far the disease has progressed. If the person is told about the diagnosis while most of their intellectual capabilities remain, he is more likely to adjust better to the disability. The family also will be faced with difficult decisions, such as whether the diagnosed individual can continue to work and to manage finances. Participating in these decisions to the extent possible will help the diagnosed individual feel more in control of his life. Here are some specific suggestions which may help families: Choose a quiet place to talk. Choose a time when you and your relative are calm and have time to react to what you say. Try to give information that he is able to understand in a way he is able to understand it. You do not have to say everything at once. Do answer questions directly and honestly. Because of the memory impairment, you may have to answer questions more than once. If he wants to know what will happen to him, tell him that disease will make it harder to remember and to do the things he is able to do now. Since changes are generally gradual in nature, his quality of life may not diminish substantially for several years to come. Talk about the many things he can still enjoy and how to enjoy them now. Tell him that you will be there for him as long as he needs you. Reassure him that your family is in this together and that you will plan together for the future. Support him in expressing his feelings about his illness and his fears. Since it may be hard for him to put his feelings into words, "listen" for his nonverbal expression in body language and behavior. Encourage people who care about your relative to express their support. Watch for signs of depression and, if symptoms appear, seek help from a professional. Telling someone you love that he or she has Alzheimer's disease may be one of the most difficult things you will ever have to do. Consider the telling an act of love. What to Tell Neighbors and Relatives Be truthful even if it is difficult. Often when a spouse or child must explain the diagnosis to relatives, they are faced with one of two reactions: Either the family is very supportive and understands the situation, or the family refuses to accept the fact that something is wrong with their relative. They may blame the situation on other circumstances: "You have made the person unhappy," or "If you had fed the person properly ...," or "If you would have been more attentive ..." Families who are fortunate to have the support of the other members may still feel that they have not done all that is possible. Therefore, support of the entire family is vital. That is why all of the information about the patient should be shared. Doctors' visits, consultations with specialists, hospital evaluations, and the daily happenings should be circulated among family members. If the spouse or child does not carry the entire load and allows input from other members, this may relieve some of the guilt that may be associated with decisions made concerning the consequences of the illness. Ultimately, however, the major decisions do fall upon the caregiver. To give other members of the family some idea of the caregiver's demanding job, ask them to care for the patient for a few days while the caregiver gets some needed rest. They will become more aware of the demands of caring for a demented person and perhaps will better understand why the primary caregiver has made certain decisions. Share the literature that is available with all family members and invite them to attend an Alzheimer's support group meeting where they can ask questions and visit with others who are experiencing the same kind of problems. As much as families try to keep the patient indoors and not tell the neighbors, neighbors are probably well aware of the problems. The patient may have been roaming the neighborhood asking for help or money to get away, or just being a nuisance. The neighbors may also have become involved when they found the patient wandering. Families are surprised and embarrassed by this public behavior. Again, be truthful. Tell the neighbors exactly what has happened. Also, tell them about the illness so they will not be afraid of the patient and will be better prepared to handle a situation if the need should arise. Most often families will find that neighbors are thoughtful and very helpful. They will call when they see the patient wandering about or doing something dangerous. They can provide moral support to the caregiver by visiting. If the patient should become difficult to control, neighbors are close and can be available at a moment's notice. * * * * * * Excerpted from DEMENTIA by Heston & White (Alz. Assoc/Costa Mesa) In the Northern Virginia Chapter Service Area, for more information about Telling Patients the Truth, please contact the Chapter's telephone Helpline at 703-359-4440 or 800-207-8679. Outside Northern Virginia, please contact your local Chapter. Home | Who We Are | Volunteer | Membership | What's New | Calendar of Events | Links | About Alzheimer's | Programs & Services | Search Last updated: March 1, 1999 Please return to https://www.alz-nova.org or call 800-207-8679 or 703-359-4440 for more information about services in Northern Virginia. © 1997 - 2000 Alzheimer's Association, Northern Virginia Chapter. All rights reserved.