Tips for Dealing With People Who Don't Know They Have Dementia
More than denial, anosognosia is a lack of awareness of impairment – most people do not even know they are ill – and it 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.
When President Woodrow Wilson had a stroke in 1919 his physical health was slightly impacted, but his mental health 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.
A Definition of Anosognosia
It is a scary thought to consider. What if we were ill, suffering from dementia, and didn't know it? How would our loved ones cope?
In fact, 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. Yet, the condition is alarmingly common: After stroke, some studies show up to 77% of patients suffer anosognosia at least temporarily, reports one review of the literature.
It occurs frequently in those with mental illness, according to the Treatment Advocacy Center, and can also affect people who have suffered traumatic brain injury, as well as people with Alzheimer's and other types of dementia.
What Causes Anosognosia?
Anosognosia is still difficult to define, but researchers know it results from physical, anatomical changes or damage to the part of the brain that affects perception of one's own illness.
Studies suggest that deterioration in the frontal lobes may be involved, which "play an important role in problem-solving, planning and understanding the context and meaning of experiences and social interactions," according to the New York Times' New Old Age blog.
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."
Anosognosia and Alzheimer's
Anosognosia has long been recognized in individuals with strokes, brain tumors, Alzheimer's and Huntington's disease, says the Treatment Advocacy Center. According to the University of Florida's health resource AlzOnline, 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 they are ill. The anosognosic person with dementia may have evident problems with routine tasks, but they may insist they do not need help, or may even refuse medical evaluation or treatment – treatments which are often key to helping them realize they are impaired in the first place.
Is it Denial or Anosognosia?
To make the situation even more challenging, anosognosia may be complete or selective. They may be entirely unaware of their impairment for instance, or they may even react with anger and defensiveness if confronted about their illness. This makes it difficult to diagnose anosognosia, 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 their own behavior
• Becoming angry when confronted with forgetfulness, lack of self-care, or poor decision making
• Confabulation: making up answers they believe are true, though sometimes the details may be imaginary, may pertain to something that happened in the past, or even something they read or heard elsewhere
What You Can Do if a Loved One Doesn't Know They Have Dementia
Whether your loved one is in denial of their dementia or has anosognosia, the most effective caregiver strategy is one of mitigation of the effects, rather than trying over and over to make the person 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 even put themselves and others in danger. AlzOnline has the following suggestions for your loved one anosognosia:
• Use positive approaches to communication: be gentle, encouraging and empathetic about necessary tasks
• Provide a structured schedule of tasks, personal care and down time, and make yourself or another caregiver available to help
• Downsize any responsibilities that are unnecessary: 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.