DIMENSIONS Spring 2001

TELLING THE TRUTH ABOUT ALZHEIMER'S: ISSUES IN DIAGNOSTIC DISCLOSURE

Contributed by Julee Carper-Clark, MS

Note: Each issue of Dimensions features a contribution from one of the Alzheimer's groups in Washington. This article is reprinted with permission from the Alzheimer's Association Western and Central Washington Chapter.

Physicians, professional care teams and family members all face concerns about how, when and whether to inform a person that they have Alzheimer's disease, once a diagnostic evaluation is complete. Most people agree that individuals have a right to know when they are diagnosed with Alzheimer's disease. When and how to discuss the diagnosis often depends on the individual, their own desire to know, and their cognitive and emotional status.

For a person in the early stages of Alzheimer's disease, understanding the diagnosis may provide an opportunity to be actively involved in planning for the future. Informed people may feel empowered to communicate and participate in planning for their own future care, and in making medical, financial, and estate planning decisions. In the early stages, individuals are often able to participate in complex discussions about treatment options, planning for residential care, and end-of-life preferences. It is important that all involved have access to educational materials and resources. Information on medications, research and other medical and behavioral approaches to treatment should be shared.

Persons whose dementia has already progressed into middle or later stages of cognitive impairment may immediately forget, or not fully comprehend the meaning of the diagnosis of Alzheimer's disease. In such cases, it is good to answer questions the person with memory loss asks with direct and simple responses, followed by reassuring words. For example, if the person says, "I can't remember anything these days, what's wrong with me?" you may respond by telling her that she has some memory problems and that you are here with her to help her out. Most people with Alzheimer's disease realize they are not quite the same as they used to be and are losing control little by little somehow. Some may be reassured by having a medical term such as Alzheimer's disease to describe their condition, while others may deny that they have AD, and may be upset by being continually reminded of their diagnosis. It is not wrong to explain the truth without using the exact term "Alzheimer's" when a person does not have full cognitive and memory capacity.

A good rule of thumb to help family members decide how much to tell and what words to use is this: Use language and words which the person with Alzheimer's can understand; and give as much information as is helpful and useful to them intellectually and emotionally in their daily lives. Use as much honesty, openness and truthfulness as is possible and helpful according to each unique situation. However, it is equally important to help a person preserve their quality of life, maintain personal integrity and dignity, and foster hope for their daily living during the length of their Alzheimer's illness, as it is to maintain honesty and educate them about the state of their illness and abilities.

For more information on Alzheimer's disease please call the Alzheimer's Association at (206) 363-5700 or 1-800-848-7097.


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