Tips for Dealing With People Who Don’t Know They Have Dementia

by Sarah J. Stevenson

More than just denial, anosognosia is a lack of awareness of impairment – a person does not even know they are ill – and it affects up to 81% of those with Alzheimer’s disease. A Place for Mom had the opportunity to speak with the Treatment Advocacy Center to learn more about the anosognosia.

When President Woodrow Wilson suffered a stroke in 1919, his left side was impaired and he walked with a cane, but otherwise didn’t seem much the worse for wear. However, reports Errol Morris of the New York Times, “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.” In short, he was showing symptoms of cognitive problems due to his stroke – but he completely denied that he was ill.

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. According to the Times article, Weinstein wrote:

“In this condition, the patient denies or appears unaware of such deficits as paralysis or blindness… To casual observers, anosognosic patients may appear quite normal and even bright and witty. When not on the subject of their disability, they are quite rational; and tests of their intelligence may show no deficit.”

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 also occurs frequently in those with mental illness, according to the Treatment Advocacy Center,

“Studies indicate that 50% of individuals with schizophrenia and 40% of those with bipolar disorder report experiencing moderate to severe impairment in their awareness of illness. The condition is considered the most common reason that individuals with these diseases don’t take their prescribed medications.”

It can affect people who have suffered traumatic brain injury, as well as people with Alzheimer’s disease 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 Disease

Anosognosia has long been recognized in individuals with strokes, brain tumors, Alzheimer’s disease 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, often, are 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.

There are some signs you can look for if you’re worried your loved one might have dementia with anosognosia, rather than being in denial:

 *       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

 *       Inability to perceive unsafe situations: they may insist on driving or operating dangerous machinery like power tools

 *       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. “Reasoning and evidence make little difference to these patients.” The Treatment Advocacy Center agrees: “Nobody wants to take medicine if they aren’t sick, and people with anosognosia are no exception.”

However, if these people aren’t treated, a number of negative outcomes can result, and they may even put themselves and others in danger. AlzOnline has the following suggestions to ease interactions if your loved one has anosognosia. Many of these will be familiar to experienced dementia caregivers:

 *       Use positive approaches to communication: be gentle, encouraging and empathic about necessary tasks rather than phrasing things negatively or severely

 *       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 family members and others dealing with loved ones 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.