“There is no simple answer”: the therapeutic lie when confronted with the reality of Alzheimer’s disease

Right or wrong, it is thinking that not telling the truth to the person with Alzheimer’s disease could be beneficial. It is a judgment about the person’s ability to understand, realize or reflect on a given situation.

“When is Robert coming to see me?” The caregiver must sometimes answer the same question repeatedly. Should the caregiver be confrontational or face reality? How far should one go with the chosen strategy? If the caregiver wants to validate the emotions associated with Robert’s absence, they may choose to say that Robert will be arriving in an hour, even though this is not the case. In this particular situation, the caregiver decides to lie; this is called a “white lie.” A “little” lie may not have any impact, while another lie may have negative consequences. This situation creates guilt and emotions for the caregiver.

I will always remember the example of a caregiver whose husband was very hands-on and active. Her husband told her that he had been picking lemons in the garden. She remarked that lemons do not grow in Quebec. The husband persisted. Before she took the Alzheimer Society training, she might have been confrontational. Instead, she chose to “lie” by pointing out that this gesture had allowed the cook to make a delicious lemon pie. In this case, the lie is done in order to reassure the person with Alzheimer’s disease and to enhance their self-esteem.

Yes, it is. Lying can occur on many levels. After trying several strategies, including basic communication and behaviour management, without success, the caregiver may decide to lie to relieve anxiety or frustration. Some people with Alzheimer’s disease have hallucinations and delusions that may echo a retrograde dive. What the person with Alzheimer’s disease is saying is not real, but at that moment, it is their reality. At this point, to avoid any situations of conflict, the caregiver may choose to enter “this” reality with a lie.

Do we announce the death of a close friend or not? At the Federation of Quebec Alzheimer Societies, we think so, because mourning must be done. The person with Alzheimer’s disease still has an emotional reality; it is important for them to grieve. Some time later, they may forget about the reality of the death. At that point, does the caregiver ever remind them that their friend has died? This is a lot of emotion for the caregiver. There is no simple answer; it is a complex situation.

Therapeutic lying at the medical level has consequences. The doctor may not pronounce the diagnosis of Alzheimer’s disease, either because they themselves have preconceived ideas about the disease, or because the person, at a moderate or advanced stage of the disease, no longer has sufficient judgment to understand the situation. The physician may then prefer to turn to the family caregiver to explain the situation, or not discuss the diagnosis at all. Therapeutic medical lying can surface at the time of diagnosis.

The fact of not announcing a diagnosis to a person with the disease, especially if it is at the beginning of the disease, has implications on the person’s adherence to medication and on their potential participation in research projects. If the physician does not disclose the diagnosis, the caregiver will not recognize themself as a caregiver and will not have the necessary understanding to face the new situation, adapt, seek services, take care of themselves or plan for the future. This can affect the level of exhaustion of the caregiver.

Yes, first of all, it suggests that it is “not right,” which adds to the guilt of the caregiver. Second, it goes against our values; we are taught to always tell the truth!

Therapeutic lying is a situation in which it is permissible to lie and it is in this context that it should be considered: it is permissible to lie if the consequences are not negative. If the announcement of a death causes persistent emotions, tears, cries or psychological distress that reoccur each time the death is mentioned, at some point, we will stop talking about the death. This is not considered a lie as such; rather, it is a way of relieving the emotions associated with the announcement. The idea here is to maintain a relationship of trust between the caregiver and the person being cared for. It is up to us, as the caregiver, to assess and validate the situation.

What you describe is not a therapeutic lie. When you work with someone with Alzheimer’s disease, whether you are a caregiver or a family member, you must always present yourself as you really are and explain what you are doing. The person with Alzheimer’s disease may not recognize us. It is an emotional experience, because it confronts us with the evolution of the disease and with the ambiguous loss we must face. This moment, when it occurs, is destabilizing. It is possible that the person with Alzheimer’s disease will “return” and we will repeat who we are and what we are doing.

If the person confuses us with another person, we must try to understand why this confusion occurs: is it a resemblance or is it due to our approach? Who is this person with whom the individual is confusing us, what was the relationship with them and what emotions does this memory provoke? Is it a regressive leap? We can then use this episode as a diversion to start a conversation.

For me, lying should not be something that is done at first. You have to first work through different approaches: basic communication, behavioural intervention strategies, emotional validation and life history. If this doesn’t work, then lying can be used as a last resort.

It is important to know the person, their life history and the significant events in their life, both positive and negative. A regressive leap takes us back to certain pivotal periods in our history and provokes certain emotions. The caregiver must be aware of this and try to validate: where does the person affected stand? Is the person feeling calm, in which case a lie would not have much impact? Or do they feel a great deal of anxiety in the case of hallucinations? Lying in this disquieting situation, which is their reality at the time they are experiencing it, is not advisable; rather, the person should be “brought back,” reassured, without being confrontational. It is a matter of evaluating what is problematic and dangerous, compared to another situation in which a “little” lie will not have major consequences.

1. When you arrive at the person’s home, always introduce yourself as who you are and explain what you are doing;
2. Before resorting to lying, try other strategies: basic communication, behaviour management, emotional recognition, emotional touching or reminiscence. If after all of this you find yourself having to lie, it’s not the end of the world, as long as the consequences for the person are not dramatic;
3. Ask yourself how serious the lie is. What are the possible consequences?
4. Caregivers, family and professional staff must have the same approach. In the event that the disease is diagnosed, everyone needs to be in tune with each other;
5. If necessary, lying is okay. Don’t feel guilty about it; it shouldn’t call into question your role as a caregiver;
6. All this represents a lot of things to consider for the caregiver. This is why it is important to be accompanied and equipped;
7. Acknowledge the range of emotions that are running through you. You have made a decision, you have acted according to a specific context for the good of the person. Based on other elements, you may have to change your strategy;
8. Seek support and a network you can rely on to give you a break from time to time;
9. The condition changes and evolves. Always be in response mode, creativity mode and prevention mode. Try to stay one step ahead of the disease. This requires training, a good knowledge of the disease and of the person you are helping;
10. The key is to plan ahead, know what to expect, be familiar with the person with the disease and surround yourself with a supportive network.

• Communicating with a person who has a neurocognitive disorder;
• Faire face au deuil blanc | entre émotions et solutions;
• Marika Lhoumeau dans le balado des proches aidants;
• Interagir avec un proche atteint de la maladie d'Alzheimer (in French);
• Alzheimer’s Disease: Resources and Referrals;
• Protecting yourself so that you can better help;
• Learning to Become a Caregiver Training Program.

Subscribe to the Caregiver Newsletter, the newsletter for caregivers, and receive monthly testimonials, thematic articles and interviews.