- “Why can’t she accept …?”
- “He’s just so stubborn.”
- “Why can’t he listen to the doctor?”
- “If only she would …”
Caregiving can be demanding. It is heartbreaking and heart-filling. It can be even more complicated when the person you are trying to help refuses your assistance. You hear “There’s nothing wrong,” “I don’t need help,” or “I don’t need medication.”
Anosognosia is a Greek-based word that can be translated as “without knowledge of the disease.” It’s a condition in which a person with a disease or disability is unable to recognize something that is medically apparent. Different than denial, anosognosia is caused by some sort of impairment to the brain in which there is something atypical going on within a person’s frontal lobes. Physiological in nature, anosognosia is due to damage or deterioration. On the other hand, denial is a psychological coping mechanism that can be used to minimize, ignore, or dismiss something that is too challenging or painful. If you are in denial, you don’t need to accept responsibility.
The National Association for Mental Illness (NAMI) has suggested that 50% of people with schizophrenia and 40% of persons with bipolar disorder have some form of anosognosia. The Alzheimer’s Association tells us that up to 42% of people with early Alzheimer’s have anosognosia. It has also common in persons with Huntington’s.
The frontal lobes of the brain are where we process social interactions, context, planning, and meaning. When these lobes are damaged, we can lose the ability to organize and process new information about ourselves. We remain fixed on who we considered ourselves to be prior to the illness. We can’t change our narrative of who we are. We don’t believe a loved one or medical professional who attempts to change our perception. Are they making a mistake? Are they lying?
Anosognosia in a person with dementia can become more frustrating than the memory lapses. It complicates an already complex disease. Taking the car keys from a person with advancing Alzheimer’s is emotionally difficult for all persons involved. Addressing this issue with a person with anosognosia and Alzheimer’s can be heartbreaking. Attempting to provide support to a person who is resistant because they perceive that they don’t need the help is frustrating to both persons. Safety concerns arise. Persons with chronic schizophrenia and anosognosia may refuse the medications that would help them defeat the symptoms of their illness. Why take medications if there is nothing wrong with you? Most of us have heard of situations in which a person with a bipolar condition opts to discontinue their medications, which precipitates a mental health crisis. For some persons, this illness can be fluid. Awareness can shift back and forth.
Anosognosia is challenging to treat. Sometimes persons with mental illness can be encouraged to resume or continue to take medications. This allows roughly a third of persons with schizophrenia the ability to have insight into their illness. Therapists have some success using a talk therapy treatment called Motivational Enhancement Therapy. This requires the person to examine their behaviors and relationships with the goal of helping them adjust their self-image. Unfortunately, using this therapy is not usually successful in treating persons who Alzheimer’s or Dementia. Here are some suggestions for caregivers.
- Don’t argue. The person with anosognosia won’t accept your perspective. There is nothing wrong with them. This is a frustrating situation for both people involved.
- Maybe the best thing to say in some scenarios is gently, respectfully say that you don’t see the situation the same way.
- Naomi Feil pioneered a technique that she called Validation Therapy. This is helpful for persons who have advanced dementia. This method helps the caregiver to be in the moment with the person and help them work through emotions behind agitated behaviors. A great resource to learn more about validation therapy is https://vfvalidation.org.
- If the person isn’t putting themselves or others in an unsafe situation, let it go. Focus conversation on other topics.
- Be supportive. Help them keep their medical appointments.
- Try not to judge. This is tough. It can feel like the person is being stubborn or not wanting to care for themselves. It is exasperating. Keep in mind that anosognosia is a medical condition. Some days will be better than others.
Most importantly, take care of yourself. Joining a caregiver’s support group may be helpful. Finding respite and taking breaks are options that protect you from burnout. You’re not in this alone. You don’t have to do it all. Our Care Managers know our community’s resources. Whether it’s finding respite providers, or coordinating resources for your loved one, arrangeCARE is here to help.