Anosognosia- Why can't they see what we see?

In this episode of Hope Floats, licensed clinical social worker Shoshawna Rainwater and professional certified coach Rachel Coady delve into the complex topic of anosognosia, a condition where individuals with dementia lack insight into their own cognitive decline. They discuss the prevalence of anosognosia among dementia patients, its impact on caregivers, and the challenges it presents in communication and care. The conversation emphasizes the importance of understanding this condition to improve the caregiving experience and offers practical strategies for managing relationships with loved ones affected by dementia. The episode concludes with a call for community support and resources for caregivers.

Takeaways

Anosognosia is a common condition in dementia patients.

It can be challenging for caregivers to accept the lack of insight in their loved ones.

Denial and anosognosia are different but can coexist.

Education and convincing do not work for those with anosognosia.

Caregivers should focus on energy conservation techniques.

Support groups can provide valuable emotional relief for caregivers.

Understanding the degree of anosognosia can help tailor care strategies.

Practical strategies include simplifying tasks and minimizing safety risks.

It's important to maintain a positive approach when interacting with dementia patients.

Community support is essential for caregivers navigating this journey.

RESOURCES:

The DAWN Method:  

https://thedawnmethod.com/anosognosia-when-people-dont-realize-they-are-impaired/

NAMI fact sheet: 

https://www.nami.org/NAMI/media/NAMI-Media/Images/FactSheets/Anosognosia-FS.pdf

The Cleveland Clinic:

https://my.clevelandclinic.org/health/diseases/22832-anosognosia

NIH Article:

https://www.ncbi.nlm.nih.gov/books/NBK513361/

LEAP Center article:

https://leapinstitute.org/anosognosia-the-root-of-the-problem/

Transcript

Shoshawna Rainwater (00:05)

Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Shoshawna Rainwater, a social worker with over 20 years experience supporting people caring for a person with dementia. And I'm also the daughter of a person living with dementia.

Rachel Coady (00:23)

And I'm Rachel Coady. I'm a professional life coach and also a past primary caregiver for a mom who had dementia. We're excited to be back and to begin a new year of Hope Floats episodes. We want to thank all the listeners who have reached out with episode ideas and feedback on how we can make Hope Floats the best it can be for you. We're looking forward to discovering more ways this community can evolve this year and also share in the journey of navigating dementia together.

Shoshawna Rainwater (00:56)

Hi Rachel.

Rachel Coady (00:57)

Hello, it's good to be back.

Shoshawna Rainwater (00:58)

Hi, it is. It's great to see you again. And I'm really excited about today's episode. And we're gonna be talking about a topic that is top of mind for me: the topic of anosognosia, the inability to have insight into one’s own condition.  And I really wanted to start Season 2 talking about this and not waiting a minute longer to help listeners and people understand the importance of this topic of anosognosia and how it impacts everybody involved.

I think it's one of the most difficult aspects of the dementia experience. And to me, it seems to be the most important thing that nobody seems to be talking about. I spent a minute reviewing my resources and looking at online resources and I put “anosognosia” into the search field when I was in the Alzheimer's Association website, and it did not produce any results. And so I thought, “well, okay, maybe they're just not calling it ‘anosognosia,’ so let me put in ‘awareness’.” And that brought up a lot of things, but mostly all associated with increasing awareness of dementia. 

Anosognosia in dementia is because physical parts of the brain are impacted and changing– there's structural changes happening, likely in what we call the prefrontal cortex, where our higher order thinking happens as humans. And we think that the hippocampus gets sort of preferentially impacted in Alzheimer's disease. And our listeners might remember in previous episodes that the most prominent type of dementia is Alzheimer's– so 60 to 80%. So for those people, their hippocampus–which is where we store long-term information and short-term information, as well as the passage of time–that gets impacted; it can't keep track of what's going on any longer. It has a lot of difficulty with that. And self-image then doesn't get updated. So if there are new things happening, new health issues that we're experiencing, and our hippocampus doesn't allow us to update the information about what's going on for us, it's really difficult for people to see themselves as different than they were before.

Rachel Coady (03:39)

So they're not necessarily aware of the changes that are happening as they're continuing to advance in the disease.

Shoshawna Rainwater (03:45)

Exactly, and as we'll talk about, the degree of anosognosia and the degree of the impact really depends on the extent of the damage to the area of the brain. So we'll talk about how some people with a dementia diagnosis have what appears to be no anosognosia and they have an awareness. There are people who have partial, and there are people who have complete anosognosia, and we'll talk about the differences in that and how that manifests.

Rachel Coady (04:14)

Is anosognosia a pretty common part of most dementia journeys?

Shoshawna Rainwater (04:20)

It is. So the prevalence for people experiencing mild cognitive impairment–which listeners may remember from previous episodes, that's the period of time before dementia is officially diagnosed. But we know that there are brain changes happening, that things look different and people are having a more difficult time, but things are still relatively manageable. 60% of people with mild cognitive impairment have some degree of anosognosia. 

And for those whose mild cognitive impairment progresses to dementia, 81% of people with Alzheimer's disease have some degree of anosognosia. And those levels of anosognosia increase the further they get into the disease experience.  And let's keep in mind, as we've talked about, only half of the people living with dementia have actually received a diagnosis. And I think that's important when we talk about the prevalence of 60% of people with MCI or mild cognitive impairment and 81% of people with Alzheimer's, we're only counting the people who have been diagnosed. 

Anosognosia often gets called “denial.” And I want to take a minute to describe what's different about these two conditions. It's not uncommon for people to meet with me in my clinical practice and say, “Hey, my mom has dementia, and she's in denial of it. And she won't admit to it. She's being stubborn and it's infuriating for me as the person supporting them.” And I introduced that there could be something else going on, which is this idea of anosognosia. It doesn't mean that there couldn't be some element of denial, if a person is early enough in the disease experience where their brain still has the ability and sort of the capacity to actually have denial. 

But remember that denial is the brain's way of self-protecting against traumatic information. And it does it unconsciously. And in the setting of dementia, where there are already structural changes happening in the brain that impact insight, while they might also be experiencing some denial about that, so their brain is working really hard to protect itself from trauma, then our ability to sort of reason with them in the way we would a person without dementia might be experiencing denial. Our chances of sort of penetrating those false beliefs or their denial are very, very low.

So I make space for the possibility that particularly early on in the disease experience, someone might be experiencing denial. Likely it's coupled with anosognosia, and anosognosia is likely at play. And so when you couple anosognosia and denial, it's very difficult.

Rachel Coady (07:41)

So one way, if I just understand this correctly, because it's a big, big idea that we're talking about, is denial would be having some sense of awareness, but potentially protecting yourself from admitting it, just like denial is in all of our lives. Like we just deny certain things that we don't want to face. It's a protective, unconscious behavior that we do, to your point. And anosognosia is actually our software hasn't updated because of progression of this disease. And so we're actually not able to see or understand that our brain is changing. 

Shoshawna Rainwater (08:14)

That’s right. 

Rachel Coady (08:15)

And for the first parts of this journey, both things could be at play. But our default, when we've been with this person for a long time and they're denying something that's very obvious to us, is that they're in denial. We forget that their disease might actually be part of the reason they don't know.

Shoshawna Rainwater (08:31)

Yeah, I think that's one of the hardest things is when we are in relationship with a person who has had the ability to have insight throughout their life, we expect that they will continue to have that. It's very hard for us to go from decades of interactions with a person where they are able to perspective take, to now being in relationship with that same person who can no longer do that. 

So it's important to talk about the impact of this on caregivers, right? So hopefully we've sort of outlined how this impacts the person experiencing brain changes due to dementia. There are structural changes happening in their brain that do not allow them to have insight or awareness into their own condition. And as we know, dementia creates kind of these two patients early on. They have very different needs because they have different brains, but what happens to the person with dementia really impacts the person and people caring for them. So the needs of the caregivers need and deserve attention.

I think one of the reasons anosognosia is so difficult is because one of the hardest things we do in human relationships is be in relationship with a person who isn't seeing it our way. This is probably 95 % of what lands people in couples therapy is my guess, is that we can't perspective take, we're having difficulty feeling seen by this person, we don't see things the same way, they can't compromise, those kinds of things. So as humans, we really love to be in relationship with, we're comfortable being in relationship with people who can perspective take and see things our way. We gravitate towards those relationships and we get uneasy when we are in relationship with a person who can't see it our way. It feels very frustrating and challenging and even infuriating. 

So to imagine now that you are in relationship with a person who cannot have insight or awareness—not only into their condition, but then also likely can no longer perspective take or see things your way. It's incredibly hard. And I think it's one of the hardest things about the dementia experience.

Rachel Coady (10:56)

Yeah.

Shoshawna Rainwater (10:57)

So we might say, ”okay then, given that what I'm hearing is, anosognosia is the person does not have the ability to have insight, and we can't change that or make that different for them, we can't get their brains to see it another way, what do we do?” So what we usually do in cases of sort of neurotypical people, right, is try to educate people or convince them of their illness or their condition. That's typically where we start from, right? We think it's an education or information deficit. “So I'm just gonna sit you down knee-to- knee and I'm gonna really explain to you what your illness is and how it's affecting not only you, but everybody who cares about you.” And in the setting of dementia and anosognosia, this approach of educating or convincing someone of an illness or a condition that they are certain they don't have, doesn't work. 

Rachel Coady (11:52)

It doesn't work, no.

Shoshawna Rainwater (11:54)

And it really leaves people, both parties, very frustrated. And the research on anosognosia tells us that anosognosia is not responsive to treatment or education  of the person with dementia, and in fact it can make it worse.

Rachel Coady (12:10)

I can imagine when you're trying to explain that to someone, if you were going down that path, that feelings of shame or frustration or anger for the person with the cognitive changes would come up. And we know that those emotions all cause a person of any cognitive ability to shut down. 

Shoshawna Rainwater (12:31)

Yeah.

Rachel Coady (12:31)

So it's like having a conversation with someone in a foreign language or something; it's not going to happen. The connection won’t be made and ultimately both parties are just left really frustrated.

Shoshawna Rainwater (12:41)

Exactly. I do want to say we're talking about anosognosia specifically in the condition of dementia. Anosognosia is present in other diseases like schizophrenia and in people who've had right hemiplegic strokes. And for those conditions, there is different research about what's effective. We're not talking about those populations today or on this podcast. We're staying within our lane of dementia and what we know works and doesn't work. If you are reading about certain treatments that might be available for people with anosognosia, make sure that they are talking about for people with dementia and not people with other medical conditions. 

So given that we cannot make anosognosia go away, there are things that we can do to make it more manageable.  And as I think we're learning as a caregiving community, any of the adjustments that need to be made, new things that need to be learned, new ways of doing things with a person with dementia, those adjustments are made by us as the caregivers. We can't expecting our person with dementia to be able to compromise or adjust how things are done.

It can also feel like it requires an unlearning of longstanding patterns of interacting with people and a disengagement from who this person used to be, right? Understanding that their brain is different and we can't expect them to do the things and have the perspective they may have had before.  Arguing with a person, trying to get them to see it your way is a waste of your valuable energy and cortisol levels, as we've talked about on this podcast before. It depletes you as a caregiver to argue with your person. It makes them worse and that makes your job harder. 

Rachel Coady (14:50)

Yeah. The goal is to try to keep your person who's struggling with dementia in as positive a place and safe feeling as a place as possible. I think it's human to want to debate and fight and argue about what the experience really is and that you know best. But unfortunately for people on this journey, they're just not able to process or understand that, it sounds like.

Shoshawna Rainwater (15:15)

Yeah. I've been thinking about this, Rachel, in terms of energy conservation. I spent several years working one day a week in an advanced heart failure clinic. And one of the things the medical team did really well, was really try to help people understand those things that depleted energy levels for people with heart failure and those things that preserved energy levels. And I've been thinking about that application to dementia caregiving, that there are energy conservation techniques in this disease landscape, such as not arguing with someone. 

Rachel Coady (15:57)

Yeah.

Shoshawna Rainwater (15:57)

That's an energy conservation technique. To your point about how good it might feel

in the moment to discharge some of that anger and tension. That's real. And that's a human thing to want to do. I think that energy is better expended telling somebody whose brain understands and can perspective take with you around it. So someone on your team that you can call after outside of the difficult interaction and say, I am so pissed off right now.

Rachel Coady (16:27)

Yeah, so going back to that team concept that we talked about early–maybe Episode 1 or 2–of really defining and figuring out who the people in your life can be on your support team when you're a primary caregiver for someone with dementia and reaching out to them on these tough days to really have an outlet or someone to confide in that can understand it versus trying to go through it and take it quote unquote, out on the person who's struggling with dementia.

MUSIC TRANSITION

Shoshawna Rainwater (17:06)

So how does anosognosia get diagnosed? Or how do you know that it's present? Or how do you assess the degree of it? So let's talk about that for a minute. In a medical setting, this happens at what they call the bedside. So if someone is hospitalized, a physician might come in and say, “tell me what you understand about your medical diagnoses.”  So they spend time sort of assessing the person's knowledge and insight, asking them to describe their own health issues to the physician. 

But for the rest of us in these laypeople roles that we're in, there are some things that indicate for us whether or not anosognosia is present, and if it's present, how much is present.  So I think about this in sort of three different gradations or degrees. There are people who have the absence of anosognosia, and these are people who have a very high awareness that they have a brain condition happening. And this is not as common in my experience, but there are people who do have some awareness or good awareness. You typically know that they have awareness because they will tell you about it. And they often present as tearful, sad. Their presentation is usually more on the emotions that have to do with sadness, shame, guilt, worry. 

You also know whether or not they have some awareness by whether or not they are willing to accept help or even ask for help. So these are folks that when you say, “gosh, it seems like things are becoming harder; I'm thinking maybe we could hire a person to come in once a week and be with you.” The response from people with low levels of anosognosia is usually “thank you, that would be great.” “Yeah, I'm worried about burdening my kids. That would be great.”  And also this is a group of people who, remember when we have awareness of something as stigmatized and difficult to accept as dementia, when we have awareness of it, anxiety goes up and performance goes down. That's true for all humans. our anxiety is up, our performance goes down.  So these are people who you might see as kind of underperforming when they're under a lot of pressure or they're feeling really anxious. 

Rachel Coady (19:37)

Hmm.

Shoshawna Rainwater (19:37)

Some people with anosognosia have partial levels of it. And I think this is what I see most often, are people who have an awareness that something is changing, some acknowledgement. They know something is typically wrong or different, but they usually don't have a good understanding of the full impact of it. So these are folks who might say, “yeah, I don't remember things as well as I used to, but it really doesn't impact my day to day.” Whereas the family is doing the lean back in the chair wide-eyed, like “it really impacts every aspect of their life.” So people with partial anosognosia often say, “yeah, something's different. I know that.” But it's usually chalked up to like, “I'm just not remembering as well as I used to.” 

These are folks who have some willingness typically to accept help if you can attribute it to some other value that they hold, like their independence. So you might say, “you know this about your daughter, Kathy, she's a worrier. She's worried about you and I know how important it is to stay in your home independently. So what if we hired a person who just came once a week and took you to the store? What do you think?” And they might say, “okay, it's not for me necessarily, but I'll do it because somebody I care about is unreasonably worried about me.”

Rachel Coady (21:03)

Yeah, I think we learned that from you. Like when we could ask my mom to make changes in her life, but anchor them in how they would help us as her daughters. You taught us that it put her in a “maternal”  mindset, and most mothers would love to do what they can to support their kids. So it was a way to help her feel empowered and helpful versus frustrated by what we were needing for her.

Shoshawna Rainwater (21:31)

Yeah. And she had that ability to see, “okay, that makes sense. I can make things easier for Rachel. I care about Rachel.” I would say most mamas don't wanna make lives for their kiddos much harder. I also see in the landscape of dementia with disease progression, the ability for mothers and fathers to perspective take and say, “this will make it easier on my kiddos,” goes away.  That's really hard because you know that that person would have made different choices earlier. 

So that kind of brings us to going from partial to full. So when you have full or complete anosognosia, you cannot see that there's any merit to any of the things people are telling you you're doing wrong or differently. And in fact, they usually present as really pissed upset with you because in their minds, everybody else is making mistakes and messing up and blaming them for it. 

Rachel Coady (22:29)

Hmm.

Shoshawna Rainwater (22:30)

That's a big difference from somebody who's got low levels of anosognosia who is trending towards tearfulness and sadness. These folks with full anosognosia are, in my experience, those are the most difficult scenarios to work with. And it requires a pivot to a different approach, which involves something called “caregiving by stealth,” which means pretty much what you think it means, which is you gotta get a little bit underhanded and tricky about how you're gonna go about supporting their independence or whatever it is that's important to them.

Rachel Coady (23:05)

This is where I feel like a lot of what we talked about in the Dawn Method. This is a big focal area and the resource for Dawn Method is on our website, HopeFloatsPodcast.com. In working with you, you educated us on how you can make things happen that support your loved one's world without them seeing or knowing you're doing it. And that helps them feel like they've still got it, everything's under control, they still know the way that their world's working. And it was very helpful with our mom.

Shoshawna Rainwater (23:33)

You know one technique that the Dawn Method recommends is if you're worried about the person's driving, say you go over to their house, you park behind their car, and during the interaction, you might say, when we go on our outing, “hey, my car's blocking yours, let's just take my car, is that okay?” And not try to address any sort of like, “well, we have to take my car because you are not able, you should not be driving.” You never want to say that to a person with full anosognosia because they will not believe you and they will erupt in anger and frustration.

Rachel Coady (24:06)

Hmm.

Shoshawna Rainwater (24:08)

I have an example of a person that I worked with once who had probably the strongest case of full, complete anosognosia was a gentleman. I'll call him John. And I worked in a health and social center that had a housing center attached to it. So people lived there. And then they could come and meet with their clinician team and get their health and social needs met. It's based on a model called the PACE model. 

John lived in the building and had full anosognosia and a diagnosis of Alzheimer's dementia. Was pretty darn healthy from the neck down. So his major deficits were in the areas of not being able to think and remember very well. And he would demand a standing meeting with me to talk about how this facility continued to admit people who had dementia. And how could we? Like what kind of a community are we trying to build here if we're allowing all these people who are so forgetful to come in and live there?

I had to meet John where he was. Would have made no sense for me to point out, you also are a person with dementia. He did not know that about himself. He didn't believe it about himself when people did try to tell him. And so I just met him where he was and said, “that's really hard. That sounds really hard. Could we think together about some ways to help those folks feel a little bit more welcome?” And he had it in him to want to be a bit of a good host, and so that appealed to him. 

Rachel Coady (25:46)

Centering people back in roles where they feel good and have dignity and have, you know, feel kind of like they have power and agency still is a better word. And I think it's been helpful. I know another case where a woman was in a home and also kind of unaware of her own changes, but she historically had been a teacher.  And so letting her, she felt like she was in a role where she was there to teach art to the other students who were other elders that were there. And that really helped her feel like she still had a role and a purpose without needing to address the fact that her brain was also changing.

 Shoshawna Rainwater (26:21)

Yeah.  So regardless of the level of anosognosia in your person, there are some things that we wanna do. We try to minimize the safety risks and take on more of a harm-reduction lens. We'll talk about safety in an episode in Season 2, because I am guessing it's top of mind for a lot of people. We also wanna simplify tasks for people with dementia and respect their slower processing speed.  So this looks like giving them one step at a time, offering instructions with lots of pauses in between the next step. That helps reduce levels of frustration in them. 

And then, as much as we can, showing up with this positive affect and positive approach of showing concern and empathy for the person with dementia that we're in relationship with and taking those really understandable feelings of anger and frustration and channeling them in a different way, expressing them to people who can really align with you and help you understand like, “yeah, that's really, it's an understandable way you're feeling.”

Rachel Coady (27:34)

Yeah, I feel like as you go on this journey as a caretaker and you see the progression potentially of anosognosia changing with the person that you're spending time with, it's good to check in on your own care plan and support outlet. You know we've talked about one option is to make sure you've got a team around you that you can call and vent and talk with on your more frustrating days.

I found as my mom's disease continued and progressed that I needed a very physical outlet for how frustrated and angry I was. And I couldn't and didn't want to bring that emotion to my time with her. But that particular last year of her disease journey, I got very into physical lifting. I joined a gym. I was doing boxing, I was doing HIIT classes, I was doing weights a couple of times a week.

The mindset for me when I went into that gym was that for 60 minutes I was gonna be in a boxing ring with Alzheimer's and dementia. I wasn't in a boxing ring with my mom. I wasn't angry at my mom. I was angry at my mom's disease. And that became a really important thing for me to mentally fight with. And obviously, I was doing a lot of things to improve my own mental well-being and personal health in the physicality of exercising. It's really important to have an outlet in place, whether it's talking or art or physical activity that lets you kind of release the emotions you have to hold to do successful caregiving with dementia.

Shoshawna Rainwater (29:01)

Yeah, you were finding ways to soothe your nervous system, find some equilibrium again. I love that you invited Alzheimer's into the ring with you. 

Rachel Coady (29:12)

Yeah, I was so angry about it. I was angry about what she was experiencing and I was angry about how it was impacting both of our lives and our family's lives. And I was kind of angry on behalf of her, but I couldn't sit and hold all of that inside of me and knew it needed to also get out and it needed to be processed. So, physically lifting and fighting and moving in a gym helped me do that.

Shoshawna Rainwater (29:35)

Yeah.  For those people for whom when we say the word “team,” just feels deflating, if you feel like that's not available to you, we wanna be respectful of the fact that not everybody has a team. For you folks who don't have a team, I wonder about a support group in some fashion. There's nothing like sitting with a bunch of people who are like, “I get it, like me too, I felt angry too.”  Not to minimize your experience actually, to elevate and normalize it in this way of letting you know you're not alone. And that can be very helpful for people. 

So, in the absence of a feeling like you have a team, please know that there are good support groups out there. You can look up Aging and Disability Resource and see what comes up for you locally. 

Shoshawna Rainwater (30:30)

So today we covered the topic of anosognosia and we have some resources on the Hope Floats podcast website where you can learn more. From my clinical perspective, this is one of the most important things that we are not talking about and I really hope that this becomes more of the conversation.   For those of us who are caring for a person with dementia, this topic of anosognosia and what we can expect from our person in terms of insight feels really important if we're going to move the needle on understanding the disease experience. 

If this episode resonated with you, could you kindly share it with people you know who might be going through this as well? I think we could get some more momentum and we can only do that together. 

So we thank you deeply for listening. We're really happy and glad to be back together for Season 2. Send us your comments, your insights, your concerns.  And we look forward to being with you next time. 

Rachel Coady (31:30)

Thanks for being here. 

Shoshawna Rainwater  (31:31) 

Take care.

Rachel Coady (31:35) 

You can always reach out to us here at Hope Floats with your questions or with topics you'd like us to discuss on the podcast. We're here if you want to share your experiences, and let us know what could help you navigate this journey. We want to support you. 

Shoshawna Rainwater  (31:49) 

You’ll find us at our website, hopefloatspodcast.com; when you're there, you can learn more about the work we do. That's also where we'll share more tools, resources and libraries that can help people on this journey. 

Rachel Coady  (32:03) 

Never miss an episode of Hope Floats by following us wherever you listen to your podcasts and join our community at hopefloatspodcast.com.