When They Don't Know What They Don't Know
Understanding and managing the challenges of living with post-stroke anosognosia
Who among us has never experienced denial? Denial is a common, psychological coping mechanism born of an internal need to defend ourselves from being forced to face something unpleasant or unbearable. Sometimes stroke survivors appear to be in denial about some effects of their stroke. But what if their refusal to recognize a deficit isn’t denial, or any other psychological response?
Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease. It can also occur in people with major psychiatric illness such as schizophrenia and bipolar disorder.
In stroke, this may mean a survivor is completely unaware of some effects of their stroke. They may not know they have paralysis or weakness on one side, loss of vision, memory loss, neglect — sometimes even aphasia. When it happens, the stroke causing it is usually in the right side of the brain, though we may not have a complete understanding of how often it occurs with a left-brain injury because it may be hard to detect in survivors with certain types of aphasia.
Dr. Karen Postal
To family members anosognosia typically looks like denial, as in “Mother just doesn’t want to believe she has lost her memory.” But that is not accurate says neuropsychologist Karen Postal, who teaches at Harvard Medical School and is the immediate past president of the American Academy of Clinical Neuropsychology. “Anosognosia is a neurologically based deficit,” she said. “Denial is a psychological concept. In denial, they don’t want to know. In anosognosia, the survivor can’t know that something is wrong because that part of their brain is literally not working to allow them to know that something is wrong with the rest of their brain.”
As you can imagine, this misunderstanding results in a lot of frustration for both survivors and caregivers and other family members. Survivors, convinced there is nothing wrong, resent being treated like there is; caregivers know there is something wrong and are acting to keep their survivor safe. The conflict that may arise can be quite daunting (more on that — and what to do about it — later).
Living with the Unknown Unknown
Anosognosia damages relationships. Postal shared this example: “I had a patient who was profoundly unaware that they had trouble with reasoning and memory. She took 12 pills three times a day and was solely responsible for filling a very complicated pillbox at the beginning of each week. The likelihood of her accurately putting the right pill in the right place and then remembering to take it was literally zero.
“I asked her husband about taking over the pillbox, and he said, ‘She won’t let me. I know she can’t handle it, but she won’t let me because she feels like I’m just being controlling because, of course, she can do it.’ That’s a horrible position for a caregiver to be in because you have to offer help and the help is being rejected. But not only is it rejected, your motives are being questioned. And logically so, because the person with anosognosia doesn’t know they have a problem, and yet someone is telling them they can’t do something; their natural conclusion is that something’s wrong with the caregiver. ‘Why are they treating me this way? What’s wrong with them?’”
In addition to an inability to know they have a memory problem, a survivor can have anosognosia for a visual field cut or neglect: “The survivor looks straight ahead, and he does not have awareness that he is not seeing half of his visual field. It’s just not on his radar, and he’s not aware of that.” Or a weak or paralyzed limb: “The classic example of this is a patient who is screaming in bed and hitting the nurse’s call button because there’s someone else’s dead leg in the bed with them.”
“It’s pretty unusual to have such a profound anosognosia that you would think it was someone else’s leg in bed with you,” Postal said. “Anosognosia for a thinking problem is a lot more common.”
In some cases, lack of awareness of memory problems can look like psychiatric problems. Postal gives this example: “Someone will come in, look me in the eye and say with all sincerity, ‘People are stealing from me. People are coming in to my home and taking my clothes and my handbag, and they’re doing this consistently.’ Sometimes they name a family member who is probably making all sorts of sacrifices to provide care. But because the woman does not know she has a memory problem, and things are missing, it’s a reasonable conclusion, based on faulty data, that people are stealing from her. That makes her look paranoid. But she’s not really paranoid in the sense that she has a psychotic condition. She’s coming to a logical conclusion based on faulty data.”
This graphically illustrates the caregiver’s predicament — on top of doing the often exhausting and stressful job of taking care of a disabled spouse or family member, their motivation and integrity are impugned, and their job made harder by fights and disagreements and lack of cooperation.
Since treatment is very limited for most types of anosognosia, therapy involves family members learning strategies to cope with their situation.
Learn what it is, and what it isn’t
The first strategy is to educate family members that it is not denial and help them understand what to expect. “In the context of anosognosia that emerges after a stroke, like many post-stroke symptoms, the problem may naturally improve over time,” Postal said. “Once family members realize that lack of awareness is literally part of the thinking problem, they feel free to stop constantly trying to ‘break through the denial,’ trying to convince their loved one that they have a problem. A husband may think he needs to constantly point out his wife’s mistakes because, if only he can win the argument about whether or not she has memory problems, his spouse won’t try to drive the car. He may think it’s important every day to have that argument because if not, his wife is going to engage in activities that are dangerous. But once you know that the argument is completely ineffective, that it’s only going to upset everybody in the room and it’s never going to work, you do not have to have that argument. Getting rid of that burden is very freeing for people.”
Make peace with what is and be prepared
The second strategy is to make peace with the fact that the person one is helping will not think they need that help. “As an example, if you go to your grandmother’s house once a week to clean the bathroom because she doesn’t do it anymore, but she has no awareness her housekeeping has gone downhill, you might prepare yourself in advance that she will be bewildered about why you think you need to come and clean her bathroom. As she’s puttering around you saying, ‘This is ridiculous,’ rather than convince her that without you her bathroom has been filthy (she can’t believe you), you might prepare a deflection, ‘I just love to get in there and clean! Thanks for letting me tackle your bathroom as well!’ Being prepared for the misattributions actually helps because you do not take it as personally.”
Know it’s not you and that you’re not alone
A third strategy is helping caregivers realize that they are not alone in the experience of caring for a loved one where the relationship is suffering because the person doesn’t know they need help and does not want help. “The strain on the relationship may feel like it is because of something about you, or something about your marriage, or your relationship with your parent, but knowing it’s a universal thing helps. If you have 20 sets of caregivers of someone with anosognosia, they’re all experiencing the same thing. It’s helpful just to know, ‘Hey, it’s not me.’”
Postal suggests there are two methods for interacting with a loved one in that moment where someone doesn’t have awareness. Method one: Let the goal be to inform, not to convince. “When I have someone in my office who has profoundly impaired thinking and they can’t know it, my goal is not to convince them. My goal is to provide information. I’ll be straightforward. I’ll say, ‘You came in here because there was a concern you had a memory problem. Boy, were you guys right, you really do. Compared to the typical person, you’ve got a big memory problem.’ They may say to me, ‘Well, but… I felt like I was in kindergarten taking those tests. I haven’t taken tests in 30 years. That didn’t really measure my memory that great.’ Then I’ll say, ‘I recognize that you don’t necessarily feel that it’s the case, but that’s how the test came out. But right now, I just want to talk about two or three things.’” Method two: “You acknowledge that there’s a difference of opinion and move on. Every time it comes up, and it will come up a lot, you just keep acknowledging that there’s a difference of opinion and move on. There’s nothing about that that makes the underlying situation any better, but it can allow the caregiver to bring down the temperature of the interaction a few degrees. ‘We don’t need to agree.’”
Family members may have to take action to protect their loved one even though the person can’t know that the action is necessary. “That’s really hard. Caregivers may have to sit in the room and watch their mom take her medicine every day, even though it makes their mom feel infantilized. They may have to take the keys away, or disable the car, even though their husband can’t know it’s a logical safety issue. ‘I understand you don’t agree, but this is something we have to do for safety.’ There may be no painless way to do that.”
A Piece of Good News
There is a little good news, as relates to stroke-caused anosognosia — it may get better over time. “With a stroke, you generally get the very worst right up front, and then there is improvement over time. In large, profound strokes, you may not get a lot of improvement, but you tend to either stay the same or improve. There’s a chance that a survivor’s self-monitoring and awareness system may come back on line, particularly in the early stages, but even months and years out, you can still see improvement. Some people with anosognosia from a stroke reach a plateau where they’re unaware of the deficit and that’s it.”
As mentioned above, safety is often an issue related to anosognosia, especially related to medication and driving. Postal pointed out some other complications. If a survivor is unaware of a mobility issue or visual deficits, falls can be a danger.
“Someone after a stroke may not be good with complex problem solving but they don’t/can’t really recognize that. That makes them vulnerable to making financial decisions that would not be in their interest. Of course, the reasonable thing would be to have some type of system set up where they get advice and counsel, or even some kind of guardianship with their finances, so they don’t get into trouble.”
Another complication is adhering to a complex medical treatment plan. “Diabetes is a perfect example. Perhaps the survivor monitored their blood sugar for years, but after a stroke there’s a big deterioration not only of their memory but of their problem solving. The likelihood of them being able to accurately measure their blood sugar and then take the appropriate action in a timely way is really low. Unawareness of those deficits could result in serious complications from diabetes.”
Finally, a complication mentioned throughout this article — the effect on relationships. “Anosognosia affects a person’s social caregiving network, which is ultimately a threat to the person because in our country, we do not have adequate government-based insurance benefits for people who need caregiving. That means people are, in a lot of situations, entirely reliant on their network of friends and family members to care for them. It really puts them in a profoundly vulnerable spot when they can’t know they need the care, so they reject the care, and those relationships are often ruptured. Really, the ripple effect of that can be very dangerous on so many different levels to people.”