If you are caring for a person living with dementia, you may have experienced them saying they do not have dementia or need help with care, or make excuses which explain away their forgetfulness. This lack of insight is called anosognosia (pronounced an-ah-sog-NO-ziah). Read on to learn more about this and how you can best help a person with dementia who doesn’t know anything is wrong.
Anosognosia means the loss of ability to realize there is anything wrong. That is, they don’t know that they don’t know. The person with dementia honestly does not realize there is a problem and is unable to understand or perceive the need for help. The lack of awareness can result in safety and behavioural issues and create challenges when the person resents suggestions of what or what not to do.
This is worth repeating because understanding this can help prevent conflict and arguments. The person with anosognosia is not pretending nor are they in denial. They live in the present moment but access their life from the past when they were well. This lack of insight occurs even when you show significant proof of a diagnosis or deficit.
Examples of anosognosia/lack of insight
- May blame others for mistakes, because they can’t see there’s anything wrong with themselves.
- May continue to drive even if when evidence such as a formal letter is shown to them stating their driver’s license has been suspended.
- May try to get up from a wheelchair to walk when not physically able.
- Adult daughter believed her father was in complete denial about his illness and constantly reminded him of his diagnosis. He became frustrated and refused to take any memory medication because he did NOT have a problem. The daughter eventually came to understand that Dad was genuinely unaware that he had dementia and approached him differently.
Strategies for anosognosia
Try using LEAP model as an approach to anosognosia.
- listen to the person
- empathize with the person
- agree with the person
- partner with the person
Listen to what the person is trying to tell you and repeat their concern back to them using the same words. “I am really tired of people telling me what to do all the time.”
Your response: “Sounds like you’re really tired of people telling you what to do all the time.”
This will show the person you are listening.
Empathize with the person by validating their feelings. “I can see you’re really upset.” When interacting, use positive words and a friendly and relaxed tone. This will demonstrate that you are supportive and understanding.
Agree with the person. Avoid arguing, insisting, reasoning or correcting the person. This is about connection not correction. If necessary, consider walking away to maintain your composure before reacting to the person’s behaviour. You can try talking to the person again later. It would also be helpful to explain to other family or friends that the person’s behaviours are not willful or intentional and therefore, it is best to avoid confronting the person. Remind them to walk away and re-approach the person later.
Partner with the person on activities and tasks: “Let’s work together tidying up the kitchen, then we will have a cup of tea.”
Do you have an example of anosognosia? Tell us how you handled the situation.