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Withholding a Diagnosis of Alzheimer's

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Updated: November 14, 2005

The Moral and Ethical Dilemma of Whether to Withhold a Diagnosis of Dementia

The dilemma of diagnosis and truth telling
Recently someone wrote to the forum about withholding information from a person with Alzheimer's. He wrote that his grandmother had been diagnosed with Alzheimer's and his grandfather had decided not to tell her. The grandfather felt he was protecting her from the distress of her diagnosis of Alzheimer's as her own brother had died from the disease. The forum writer was concerned because his grandmother was asking what was wrong with her. He asked - is it right to withhold diagnostic information?

Things to think about a diagnosis of Alzheimer's dementia
It is important to consider a number of issues that can help you make the decision of whether or not to tell someone they have Alzheimer's. It is difficult. You want to do what is best for them. Initial reaction though can be to protect your loved one and yourself from further pain and distress.

Consider the degree or stage of dementia.
At what stage of Alzheimer's disease is he/she? If a person is in the early stages of Alzheimer's disease they will be able to understand what you are telling them. The information should be given in terms they will understand (that is important for all of us regardless of disease or illness).

Most Alzheimer's and dementia organizations say that it is best to tell someone in the early stages of Alzheimer's about their diagnosis. It allows them time to grieve and also gives them the opportunity to make decisions about their future care and the care of dependants. Different people retain different skills, and memory abilities when they have Alzheimer's.

Will person with Alzheimer's be able to remember information?
If a person with Alzheimer's is too confused or in the late stages of dementia, then telling them they have Alzheimer's would seem to have little advantage. But there are no golden rules. Telling someone who is anxious and confused about their diagnosis may help them in that instance. But I would say it is not very helpful to keep repeating diagnostic information to someone whose memory is profoundly affected.

This example highlights how caregivers have to make judgments that are in the best interests of their loved one. There is no manual of absolutes in all of the aspects of Alzheimer's disease.

Will telling them relieve anxiety and confusion?
Feeling or knowing something is wrong with you or that people are hiding things from you is awful. Depression is a common reaction to news of a diagnosis with a poor prognosis. That can be difficult to deal with but as a reaction it is understandable.
In all my years of nursing practice I only saw one person deal with the information very badly, however, helping people in a hospital or their home as a professional is very different to one on one caregiving within your own family.

Reacting to bad news is something that we all have to do at times in our lives. You can provide the support and kindness they will need to help them through. They can help you. It is so important to remember that having Alzheimer's should not mean you become devalued as a person, as part of a family or society. Being excluded, patronized or robbed of your autonomy is often far worse.

Sensitive disclosure of Alzheimer's diagnosis
It is silly to say, but it is so important, that the information about diagnosis is given sensitively. We have all heard stories about the poor ways medics can impart information, especially bad news.

People will often signal the amount of information they want when you begin to tell them about diagnosis and health issues. People often seem to retain the amount of information they can deal with. Dealing with diagnosis disclosure is about listening, looking and helping that person deal effectively with the information you are telling them.

Choosing the best time to give diagnosis information

  • People with Alzheimer's may be more receptive to new information at different times of the day. If you are a doctor, nurse or healthcare worker arrange your appointment to meet each individual needs when you talk about his/her diagnosis for the first time.

  • Remember to keep the information precise, do not over elaborate.

  • Give information face to face, not over the phone.

  • Listen to the person carefully. They often signal the amount of information they can deal with through their question and reactions to diagnostic information.

  • Whenever possible provide or have written literature to give to the person with Alzheimer's or their caregiver. Most people have questions later.
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