Q. Sometimes when I walk my dogs, I see my neighbor Adam swinging on the swing his parents installed on their front porch. I am a pretty friendly person and usually greet all of my neighbors when I see them outside, and make small talk. Adam is a little different, however. He is in his mid-30’s, and can sometimes be the friendliest person, and other times he can be strange and downright scary. Adam has schizophrenia, and everyone around him acknowledges it, except for Adam (who frequently skips his meds because he doesn’t know why he needs them in the first place.)
This is not the first time I have seen this type of behavior (denial of an illness) in someone. My father lives with my brother, and he has Alzheimer’s. He is in the early stages, and similar to Adam and his illness, it seems that he is in denial about his. The strangest part about it is that dad had to deal with a lot in his life, and denial was never a way he handled things. It is causing problems because he refuses to go to the doctor, do anything that is recommended to stave off his illness, or plan for his future. Have you ever seen a situation like this, and if so, do you have recommendations on what to do? Thanks for your help!
A. It is completely understandable to want to deny that you have a degenerative disease, such as Alzheimer’s or a mental illness. But, as you described in your examples, it sometimes goes beyond mere denial, especially when there is overwhelming evidence of a disease and a loved one insists that they aren’t ill and don’t need help. I am not a psychiatrist, but what Adam and your father are experiencing sounds like anosognosia, or the lack of awareness of the deficits, signs, and symptoms of an illness.
Anosognosia is not merely a denial; it is an actual neurological deficit. It is seen commonly in psychotic disorders like schizophrenia (50% of those with schizophrenia have anosognosia), but it’s also seen in those who have right brain hemisphere lesions due to stroke, dementia and traumatic brain injury.
How Agnosognosia is Characterized
The important thing to remember is that anosognosia is neurological and beyond a patient’s control. In other words, in the mind of your loved one, his or her strange behaviors and delusions are completely rational. According to Puihan Chao, MA and Michelle Kawasaki, MA of the Adult Mental Health Division at the Department of Health in the State of Hawaii, anosognosia is characterized by:
• A severe and persistent lack of insight;
• Erroneous beliefs, such as “I am not sick,” that do not change even after the person is confronted with overwhelming contrary evidence;
• Illogical explanations from the person that attempt to explain away the evidence.
What to Do about Anosognosia
Understandably, anosognosia is one of the more troubling neurological deficits that may accompany mental illness or Alzheimer’s, as it prevents a person from getting the help they need. And, unfortunately, there are no medications or other treatments that experts know of to relieve anosognosia.
But, don’t despair. People who lack insight can decide to accept treatment, even if they don’t acknowledge their disease. To start, it’s best to approach them in a non-threatening, compassionate way.
Chao and Kawasaki recommend the following ways (known as LEAP) to deal with a loved one who is experiencing anosognosia:
Listen to the patient
Empathize with the patient
Agree with the patient
Partner with the patient
These are some tips on how to approach the situation:
• You may not know what to say when a person believes something that obviously isn’t true. You don’t want to go along with him —but telling him that he is wrong won’t do any good, either. Your best response is to respectfully say that you see the situation differently. Use a kind and respectful tone. Say that it’s OK when people see things in different ways, as long as they and others are safe.
• Instead of trying to convince your loved one that she is sick, ask her about her goals. Use this as a springboard to discussing the next steps.
• Use the patient’s own framework to reach him. If the person doesn’t feel that he is sick, find out what problems he does believe he has and address those. For example, if a person feels his problem is that he is too paranoid to sleep, focus on addressing that issue with treatment rather than trying to convince him of an illness.
• If the person under your care stops taking medication or refuses treatment, seek professional help. Talk with the person’s doctor about what you should do. Or take your loved one to the emergency room if you are seriously concerned for his health.
• There are times when a person’s lack of insight may cause an unsafe situation. Call the police or hospital (or 9-1-1) for help if you witness dangerous behavior.
Caring for a person with anosognosia can be very challenging. But remember, you’re not alone. Many other caregivers also struggle to help someone who lacks insight. A caregiver support group can help you cope with your feelings. Fellow caregivers can also offer advice and recommend local services. Visit the National Alliance on Mental Illness at www.nami.org for a variety of caregiver support resources.
Planning for the future
Persons with Alzheimer’s or another type of dementia, and those with special needs and their families face special legal and financial needs. At The Law Firm of Evan H. Farr, P.C., we are dedicated to easing the financial and emotional burden on those with Alzheimer’s or special needs and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits. Please call us as soon as possible to make an appointment for a no-cost consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797