Anosognosia and Alzheimer’s
Last Updated: November 14, 2019
Anosognosia is more than just denial, it is a lack of awareness that one is impaired. Sadly, most Alzheimer’s patients do not know they are ill. Anosognosia affects up to 81% of those with Alzheimer’s disease. A Place for Mom recently had the opportunity to speak with the Treatment Advocacy Center to learn more about anosognosia and Alzheimer’s.
When President Woodrow Wilson had a stroke in 1919, his physical health was slightly impacted, but his mental health had drastically suffered. Film director Errol Morris, in an opinion column in the New York Times, wrote, “his close associates noticed a change in his personality. He became increasingly suspicious, even paranoid, without having the dimmest awareness of the fact that he was perhaps becoming a different person.” Edwin Weinstein, a neuropsychiatrist who reviewed Wilson’s case in the 1970s, deemed this a classic case of anosognosia — a lack of awareness that one is impaired.
How Do You Pronounce Anosognosia, and What Does Anosognosia Mean?
Before you read on about anosognosia and what it is, you may want to know how to pronounce it. The proper pronunciation is (uh-no-sog-NOH-zee-uh). It has Greek etymology and comes from the words a- (without) + nosos (disease) + gnosis (knowledge). The first documented use of this term was in 1915.1
The Definition of Anosognosia?
The simplest definition of anosognosia is the unawareness of one’s disease, disability or a defect. It is unsettling that at one point, we may suffer from Alzheimer’s or dementia, and not know it. How would our loved ones cope?
It is very difficult for caregivers and family members to make progress with a person’s illness when a loved one is showing signs of anosognosia. The condition, however, is alarmingly common. The review of the literature reports that after a stroke, some studies show up to 77% of patients suffer anosognosia at least temporarily. Anosognosia occurs frequently in those with mental illness, people who have suffered a traumatic brain injury, as well as people with Alzheimer’s and other types of dementia.2
What Is Anosognosia?
- Anosognosia is a symptom impairs a person’s ability to understand or perceive his or her mental disorder.
- Anosognosia is most common in individuals with schizophrenia or bipolar disorder. Between 57% and 98% of patients with schizophrenia live with anosognosia as well, while 40% of those with bipolar disorder also show symptoms of it.
- Anosognosia is characterized by the complete unawareness of an illness or deficits, refusing treatment appears to be the rational thing to do for patients who live with it.
Anosognosia is also defined as a lack of insight, that is not a mental illness in itself, but rather, is a symptom of mental illness. Researchers have long recognized that anosognosia is also common in stroke patients and those with Alzheimer’s disease and other psychological conditions. Findings suggest that this may be because the condition is the result of anatomical damage to the part of the brain that is responsible for self-reflection.
It is important to note that anosognosia is not static. Many people who experience the illness find that the symptoms come and go. Patients may regularly take medication and seek treatment, but one day completely forget. Without medication and proper medical attention, the symptoms will grow worse, hindering a person’s ability to perceive the underlying illness. Some patients may only partially lose the ability to understand their disease. Others may acknowledge certain symptoms of their deficits but not others. For instance, a person with bipolar disorder may recognize that he or she feels sad some days but will not acknowledge that the mood swings are often and drastic.
Why Anosognosia Occurs
Anosognosia is difficult to fully understand, but researchers know it results from physical, anatomical changes or damage to the part of the brain that affects the perception of one’s illness.
Studies suggest that deterioration in the frontal lobes may be involved. According to the New York Times’ New Old Age blog, the frontal lobes “play[s] an important role in problem-solving, planning and understanding the context and meaning of experiences and social interactions.” To put it another way, our right brain is wired to detect anomalies and new information and incorporate these into our sense of reality, says the neuroscientist Dr. V.S. Ramachandran, also in the New York Times. When something happens to damage that part of the brain — a stroke or dementia, for instance — then “the left brain seeks to maintain continuity of belief, using denial, rationalization, confabulation and other tricks to keep one’s mental model of the world intact.”
Who Does Anosognosia Affect?
Anosognosia is most commonly associated with schizophrenia, affecting as much as 98% of the schizophrenic population3. However, a patient who lives with any type of mental disorder can show symptoms of anosognosia. Conditions commonly linked to anosognosia include the following:
- Dementia and Alzheimer’s disease
- Major depressive disorder
- Bipolar disorder
- Traumatic brain injury
Anosognosia is especially notable in patients with hemiplegia, which causes varying degrees of weakness, stiffness, and loss of control on one side of the body. It is not uncommon for individuals with hemiplegia to be unaware that all or part of one side of their body does not respond to brain commands. This is the case regardless of how much a patient may struggle with speech, moving the arms or controlling eye movements, among other disabilities.
Anosognosia and Alzheimer’s
Anosognosia has long been recognized in patients with Alzheimer’s, brain tumors, Huntington’s disease, and strokes. According to AlzOnline, the University of Florida’s health resource, the prevalence of anosognosia in those with cognitive impairment or dementia can be very high:
“Some researchers have estimated that as many as 60% of people with Mild Cognitive Impairment and 81% of people with Alzheimer’s disease have some form of anosognosia.”
This is a difficult situation for caregivers who are trying to help someone who essentially does not and cannot acknowledge that they are ill. The anosognosic person with dementia may have evident problems with routine tasks but may refuse help or medical evaluations and treatments. Ironically, these treatments are often key to helping the patient realize their impairment.
Is It Anosognosia or Denial?
What is even more challenging is that anosognosia may be complete or selective. Some patients may be entirely unaware of their illness, while others may even react with anger and defensiveness if confronted. This makes it difficult to diagnose anosognosia in patients and tough to differentiate it from simple denial.
Here are some signs you can look for if you’re worried a loved one might have dementia with anosognosia:
- Not keeping up with regular daily tasks or personal hygiene
- Difficulty managing money or bills
- Being more spontaneous or less inhibited in conversation without concern for his or her own behavior
- Becoming angry when confronted with forgetfulness, lack of self-care, or poor decision making
- Confabulation: making up answers he or she believes are true, though sometimes the details may be imaginary, may pertain to something that happened in the past, or even something he or she read or heard elsewhere
How Do You Help Someone With Anosognosia?
Anosognosia is not only frustrating for family members who want their sick loved one to seek help, but it is also dangerous. A patient who lives with a mental illness but refuses to recognize its existence is at risk of harming themselves and others. Patients who live with the condition often refuse to take their medications, which only exacerbates the anosognosia, as well as the underlying mental condition. That said, how do you help patients who refuse to acknowledge a mental illness?
One way to help a loved one who lives with anosognosia is to use the LEAP method. This is done by doing the following:
- Listening to your loved one
- Empathizing with him or her
- Agreeing with what your loved one has to say
- Partnering with him or her
The LEAP method is a great way to open up the discussion about your loved one’s mental illness without coming across as accusatory, judgmental or nagging. It also allows your loved one to develop an awareness of the objective facts of the situation. Examining the facts individually can help paint a complete picture.
For instance, say your loved one lives with dementia but refuses to get help. You can remind him or her about the wandering incident that occurred last week, and you can point out that their once-immaculate home is now in disarray and has been for some time. If your loved one’s hygiene has slipped, or if it appears that he or she has neglected all grooming tasks, ask why that is. Be careful to not be critical in your observations, but rather, to stay objective.
Keeping a detailed diary of everything your loved one says and does that is out of the ordinary can come in handy when it comes to the “Partnering” phase of LEAP. Visual accounts of past behavior can better help your loved one come to terms with the condition as well as serve as a tool for diagnosis.
Another way you can help your loved one is to make an appointment to see their doctor. Their doctor can then perform the Scale to Assess Unawareness of Mental Disorder test. The SUM-D test places the concept of insight on a spectrum that includes the following:
- Awareness: Does your loved one understand that he or she lives with the mental condition? Is he or she aware of the symptoms of the condition? Does he or she understand that there may be social consequences of the illness?
- Understanding: Does your loved one understand that treatment is necessary to manage the condition?
- Attribution: Does your loved one believe that the symptoms he or she does acknowledge are the result of a mental health disorder?
The results of the SUM-D test may be eye-opening enough for your loved one to encourage him or her to seek treatment.
However, the most important thing you can do is be supportive. Don’t judge, and remember that some days will be better than others. Remember that your loved one is not being difficult on purpose — he or she truly believes that they are well. Remain a constant presence in your aging parent’s life, and do your best to ensure that they get the necessary treatment and medications.
How Do You Treat Anosognosia?
Because refusing care is one of the key symptoms of anosognosia, treating the condition can be difficult. However, seeking treatment is necessary for the health and safety of your loved one and your relationship with them. If you can convince your elderly parent to see a doctor and agree to treatment, the doctor may recommend one of three tactics.4
Depending on the underlying cause of anosognosia, your loved one’s doctor may recommend an antipsychotic. Antipsychotics are a classification of drugs that are used to treat mental illness, such as bipolar disorder and schizophrenia. Some of the more common types of antipsychotics include the following:
- Clozapine (Clozaril)
- Loxapine (Loxitane)
- Aripiprazole (Abilify)
- Chlorpromazine (Thorazine)
Antipsychotics do not work the same for all patients. For this reason, a doctor will only prescribe a medication based on a person’s overall health, symptoms, and response to the medication. Some patients require different medications as their cognitive and physical abilities begin to change or react adversely to previous prescriptions.
Motivational Enhancement Therapy
MET is a lot like the LEAP method, as it involves partnering with and motivating the afflicted individual to alter their self-perception. The goal with this method, like with LEAP, is to get your loved one to accept the existence of the condition and encouraging them to get help.
Also, as with the LEAP method, MET involves getting your elderly family member to objectively assess their behaviors, symptoms, and relationships. An honest assessment is usually enough to lead to realization and acceptance.
Cognitive-behavioral therapy (CBT) focuses on helping a person with mental health disorders explore the relationships between his or her thoughts, behaviors and feelings. CBT uncovers and addresses unhealthy thought patterns that may lead to self-destructive behaviors and beliefs. CBT also strives to identify false or negative beliefs, test them and restructure them.5Oftentimes, a therapist will have a person do “homework” between sessions. This homework for an Alzheimer’s, stroke or dementia patient may involve identifying false beliefs, such as the belief that all is well. Those beliefs are then replaced with more realistic thoughts based on actual experiences. These experiences can fall into the categories of misplacing the keys, getting lost on the way to the grocery store or forgetting the names of loved ones.
Research on CBT shows that it is an extremely effective treatment for a variety of mental conditions, including anxiety disorders, depression, schizophrenia, bipolar disorder, and eating disorders. As such, findings reveal that CBT does more than alter behavior. Individuals who have undergone CBT show actual changes in brain activity. This suggests that CBT also helps to improve brain function.
Because dementia and Alzheimer’s disease are not a form of psychosis, antipsychotics are not the solution for your loved one. Rather, a combination of the MET and LEAP methods, and with CBT would be a better option. These treatments can help your loved one acknowledge and accept the existence of mental decline and encourage them to seek the treatment they so need and deserve.
What To Do If a Loved One Doesn’t Know He or She Has Dementia
If your loved one is in denial of his or her anosognosia, Alzheimer’s or dementia, it is more effective for the caregiver to mitigate the effects, rather than trying to make the patient understand. “Trying to make someone with this problem understand that they have changed and need to accept new limits often is an exercise in frustration,” says the New York Times. The Treatment Advocacy Center agrees: “Nobody wants to take medicine if they aren’t sick, and people with anosognosia are no exception.”
However, if not treated, a loved one could potentially put themselves and others in danger. AlzOnline has the following suggestions for your loved one’s anosognosia:
- Use positive approaches to communication: be gentle, encouraging, and empathetic about necessary tasks
- Provide a structured schedule of tasks, personal care and downtime, and make yourself or another caregiver available to help
- Downsize any unnecessary responsibilities; sometimes a home health care aide or memory care is the answer
- Work together with the person on necessary tasks, such as cleaning or money management
- Stay calm and focused on the other person when voicing concerns; articulate your thoughts in a subtle and positive light
Lastly, try some recommended reading. “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University, provides practical recommendations for those who lack insight into their mental illnesses. “It’s an excellent place for anyone in this situation to begin,” says Doris Fuller, Director of the Treatment Advocacy Center.
If you are caring for a loved one with Alzheimer’s or dementia, have you found yourself dealing with anosognosia as well? Share your stories and suggestions with us in the comments below.
1anosognosia. (n.d.). Retrieved from https://wordsmith.org/words/anosognosia.html.
2Administrator. (n.d.). Anosognosia. Retrieved from https://www.treatmentadvocacycenter.org/key-issues/anosognosia.
3Bhandari, S. (2018, October 25). Anosognosia: Symptoms, Causes, Treatment. Retrieved from https://www.webmd.com/schizophrenia/what-is-anosognosia#2.
4What Is Anosognosia? (n.d.). Retrieved from https://www.healthline.com/health/anosognosia#outlook.
5NAMI. (n.d.). Retrieved from https://www.nami.org/learn-more/treatment/psychotherapy.
We Can Help! Our local advisors can help your family make a confident decision about senior living.
Incoming search terms:
- dementi denial how long