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Alzheimer's Disease

Confronting and Helping Alzheimer's Disease

03/11/2004

Question:

I`m not sure how to ask what I need to know. I was wondering, can someone with Alzheimers not know they have it; and if so, should you tell them and how would you tell them? What can you do when they tell you that they`re afraid to ask you things they can`t remember? What is the best way to voice your concern to family members?

Answer:

People with Alzheimer`s or other dementias vary in the amount of insight, or awareness, they have about their condition. Generally, insight, or awareness of a problem, is more preserved in the earlier stages of the disease, and lost as the illness progresses.

Some individuals have no awareness or insight into their condition and, even if you tell them, will still not know they have it. This is because the part of the brain that lets us have insight, or awareness about ourselves, is not working right. Others may be aware that they have a memory problem, or diagnosis, but use cover-up techniques or denial so as to appear more normal. That can be adaptive for the person.

In general, we take the position that individuals should be told that they have Alzheimer`s disease, though opinions vary widely on this. A person has a right to know, and in some cases it can be a relief for the person to hear that there is a reason for the difficulties they have been experiencing. It is best to approach the disclosure of a diagnosis of Alzheimer`s disease on an individual basis. Relying on professional assistance to disclose the diagnosis is the best approach, and using only the amount of information necessary to help the individual understand what is happening.

It was not clear from your question if your relative has been diagnosed with Alzheimer`s disease already, or if you have concerns and are planning to seek a diagnosis. If they have been diagnosed, it may be appropriate to broach the subject by asking a few gentle questions, such as "Are you noticing you have some trouble remembering?" and if there has been an official diagnosis, remind the person. "Remember when we went to the specialist last year and he/she said that you have a brain disease that causes memory problems?" However, if the person doesn`t respond or resists, I`d just drop the subject and not push it. If you think they are hesitant to admit they don`t remember, or to ask questions, then it will be helpful to keep telling them that`s OK and that you don`t mind helping. Providing reassurance that you are there for them will be most helpful to them. One husband put it this way, `We say I`m her memory now, and we both agree on that.`

We would encourage you to discuss your concerns with your family member`s physician and if you have not already done so, arrange for a complete medical evaluation. Many treatable medical conditions can cause memory changes in older adults, so a thorough evaluation is essential to help you and your loved one understand what is going on and to provide treatments. I would also encourage you to contact your local chapter of the Alzheimer`s Association (1-800-272-3900 for a chapter near you). Please feel free to contact us again for clarification if we have not addressed you question as you had hoped.

Kathryn Betts Adams, MSW, Ph.D.

For more information:

Go to the Alzheimer's Disease health topic, where you can:

Response by:

Paula K Ogrocki, PhD Paula K Ogrocki, PhD
Assistant Professor of Neurology
School of Medicine
Case Western Reserve University