Alzheimer’s is a challenging diagnosis for any family to receive. It affects the person living with the illness and their family members. When your aging loved one denies that they have Alzheimer’s, the difficulties increase.
Anosognosia is not just some fancy term for ‘being in denial’ about a specific health situation. Rather, it’s an actual neurological condition, and researchers believe that around 81% of people with Alzheimer’s have it. Individuals living with Alzheimer’s and anosognosia either minimize their memory impairment or don’t believe they are sick.
Anosognosia and Alzheimer’s
Anosognosia is a condition wherein your senior loved one is unaware or cannot accept that they have a psychiatric or neurological problem. Up to 90% of those with schizophrenia and 40% with bipolar disorder have it. It’s also quite common in people living with a brain disorder.
The term anosognosia was first coined in 1914 by Joseph Babinski, a French neurologist. He used it to describe the unawareness of deficit or illness in left hemiplegia—a condition caused by a brain injury. His patients were either clueless about deficits (anosognosia) or not worried about the severity of their disability (anosodiaphoria).
Anosognosia vs. Denial
Anosognosia is more than just denying an illness. Your loved one may be in denial or consciously refuse a situation that’s too stressful or painful, such as the diagnosis of Alzheimer’s. They may also just minimize the problem or accept just a part of the truth. For instance, they may believe they’re sick but want to avoid dealing with it by refusing to take treatments or medications.
Meanwhile, anosognosia is a medical condition caused by anatomical changes or damage to the area of the brain that affects one’s perception of their own illness. This is regardless of all evidence pointing to the validity of a diagnosis and multiple medical opinions.
Experts believe that anosognosia springs from the damage or deterioration of the brain’s frontal lobe. It’s the part of the brain responsible for problem-solving, abstract thought, socialization skills, and shaping one’s perception.
You use this section of the brain to process information about your self-image. For example, if you just had a baby, your self-image will shift to match your existing reality. Your new responsibilities as a mother will change your perception of yourself.
When the frontal lobe doesn’t function appropriately due to the damage caused by Alzheimer’s or other mental health conditions, the brain will retain your old self-image and exclude any illness. Hence, even if you’ve been recently diagnosed with Alzheimer’s, your brain cannot process this information to update your current self-image, resulting in anosognosia. It makes a person with Alzheimer’s believe they are doing just fine.
So, how can you tell if your loved one affected with Alzheimer’s has anosognosia?
People with anosognosia don’t realize or have fluctuating awareness levels of their health situation. Sometimes, they will try to cover up their symptoms or rationalize what’s happening to them.
With anosognosia, the person can’t:
- Recognize that they have Alzheimer’s or mental health disorders.
- Acknowledge their symptoms.
- Connect their symptoms to their condition.
- Understand that the condition is serious and needs treatment.
A person with anosognosia may also avoid the truth about their condition and might do so intentionally or not.
Diagnosis and Treatment Options
Anosognosia is often associated with a psychiatric condition. If a loved one is diagnosed with schizophrenia or bipolar disorder, you should consult a mental health expert to gauge the risk for anosognosia. The doctor will conduct a mental status examination to assess certain criteria that could confirm anosognosia. Doctors also use the Scale to assess Unawareness of Mental Disorder (SUMD) as a diagnostic tool to evaluate the person's level of awareness of their condition and symptoms.
There’s no specific approach for treating anosognosia. Your doctor will create a personalized treatment program depending on what’s causing it. If it results from a brain injury, treating the underlying problem may help the condition over time. However, if it coexists with a mental health condition, your doctor will lean on cognitive therapy and antipsychotics to relieve the symptoms.
With a degenerative disease like Alzheimer’s, anosognosia isn’t treatable. Therapy may help, but there aren’t any medications that can directly treat anosognosia.
Tips to Manage Anosognosia
For family caregivers, anosognosia can be more challenging to deal with than their loved one’s memory loss. Since your senior mom or dad is convinced they’re in good health, they’ll likely refuse doctor checkups, medications, and treatments.
If they don’t acknowledge their diagnosis, you should intervene as it can put them in danger. In this case, the most effective caregiving strategy is mitigation. Rather than forcing your loved one to understand the situation, try to mitigate the condition’s effects instead.
Here are some tips that may help you:
Talking it out and proving that a family member has anosognosia can be frustrating. Instead, focus your energy on easing the symptoms and improving their quality of life. Give up on making them understand something that their brain is incapable of.
Compile evidence of their condition by keeping notes of what they do and say. This may help them realize that they have anosognosia. Your notes can also provide the doctor with a basis for a treatment plan.
It sounds counterintuitive, especially if they refuse to believe they’re ill. However, try to involve your parent in decision-making whenever possible. Acknowledging their independence and autonomy is crucial as it allows for a positive caregiving experience on both sides.
Some days will be better than others. As anosognosia changes the brain, they may lose their perception of their illness, but it's never on purpose. It’s during these times that they need support. Ensure they keep up with their treatment program, including medications and doctor visits.
- Don’t try to convince your loved one that they need help.
- Take detailed notes.
- Involve your loved one in making decisions.
- Be understanding and supportive.
Focus On Improving Quality of Life Instead of Anosognosia
Anosognosia complicates Alzheimer’s, and it affects all family members. Instead of arguing about their health situation, family caregivers should focus on finding ways to enhance their loved one’s quality of life. This includes therapy and medications through a personalized treatment program.
Fortunately, early symptoms of anosognosia are detectable as some signs are pronounced. Get advice from a healthcare professional if a loved one denies or can’t understand their condition.
Syed has years of experience dealing with people, understanding their needs, and helping them find solutions to their problems.
As a Certified Senior Advisor (CSA), Certified Dementia Practitioner (CDP), Certified Montessori Dementia Care Professional (CMDCP), Syed is committed to working closely with Senior and their family knowing what is it like for individuals facing a challenging time, at times groping in dark trying to figure what is the appropriate next step or care level for their unique situation.
Syed and Senex Memory Advisors are fully committed to working closely with families in creating a personalized, step-by-step process memory care plan at zero cost.