It doesn’t seem to make sense that people who have dementia don’t know they have it. But it is a surprisingly common occurrence. It’s one of the biggest challenges we face as caregivers. Why does it happen? How do you cope when it does?
This phenomena has a name and it is called anosognosia. It means that people who have dementia are not aware that they have it and are not aware of their symptoms. It is not stubbornness or denial. They may be aware of some symptoms but not others which makes it all the more perplexing for caregivers. Take a moment and imagine having dementia and all the symptoms associated with it and being totally unaware you have it. That would be a frightening and confusing world to live in. That could produce feelings of frustration and anger.
What causes anosognosia? The cause of this is still not certain but researchers have educated guesses. They believe that dementia impacts the frontal lobe of the brain. This is the area of the brain that helps us solve problems and give us a framework to make sense of the world around us and how we relate to it. In short, it causes no self awareness.
So how do people with anosognosia cope with this condition? They rationalize and confabulate and make up their own realities. Confabulation is a memory problem when a person confuses imaginary events or thoughts with actual occurrences and memories. This is their way of making sense of a world that makes no sense to them. This seems bizarre to those of us around them. Try to recognize when they say they just saw their dead mother or you stole their wallet it is not to make you angry or cause conflict.
So what options do you have as a caregiver when the person you care for suffers from anosognosia? Here are some tips to help you cope:
- Do Not Confront Them- Trying to convince them that they are wrong or their illness is causing the symptoms is a useless tactic. It will just cause the caregiver to get more frustrated or more angry. While I visited my 96 year old dad he complained about the Cantor next door singing all the time and his hearing it. He complained about it during the Jewish High Holidays. There was no Cantor next door. I asked if the Cantor had a good voice rather than confronting my dad to the reality that he did not exist. He said yes, “he had a lovely voice.” I suggested maybe he was practicing for the Jewish High Holiday Services of Yom Kippur and Rosh Hashanah. I suggested since he couldn’t go to temple this was the next best thing. My dad agreed. He never complained about it again.
2. Try to be Empathetic-Recognize and respond to the feelings behind what is being said. Focus on the feeling. For example, “You must be worried about not finding your wallet. Let’s see if we can locate it.”
3. Communication is key-Respond in a gentle, calm way to what is being said. Carry this over to tasks that must be done. Providing structure and consistency to tasks that must be completed can help decrease confrontations and resistance.
4. Assess if There are Safety or Other Concerns Associated with Anosognosia- If there are issues with money management, bathing, or other unsafe behaviors you need to be more assertive in your approach. Offer to collaborate with them on tasks like money management. You may need to enlist the help of a home health professional or higher skilled level of care to ensure safety and good health. Consult a physician for ideas about ways to maintain these areas in effective ways.
Loved ones with dementia may try to hide their symptoms because they don’t want you to know they are ill. Be aware of this. Keep a watchful eye when you spend time together. Look for evidence that things are not going smoothly. Evidence that they are not completing tasks as they used to or episodes revealing memory deficits should signal you to become more engaged in their life. If this occurs create a care plan.
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