When the Diagnosis is Dementia Series: Understanding What You’re Really Facing

Sondra Ziegler (0:01)

Welcome to Second Half Conversations. I'm your host, Sondra Ziegler. This is a space to discuss all kinds of topics about the second half of life, from complicated legal topics like wealth protection and business succession planning that we break down in a practical way, to long term care planning and care navigation when you have a loved one on a care journey, to leaning into fully experiencing new seasons of life, of work and relationships. Our team and guests are here to equip you to take full advantage of where you're at. Because if done right, the second half is the better half. Let's get to it. Welcome back to Second Half Conversations. If you or someone you love has recently received a dementia diagnosis, you're probably experiencing a flood of emotions like fear, uncertainty, confusion, probably overwhelm. Many families tell me they don't know where to start. They're worried about healthcare decisions. They're unsure what the diagnosis means and they're afraid of what comes next. Today, we're beginning a three part series called When the Diagnosis is Dementia: Three Things You Need to Know Now. In this first episode, we'll talk about understanding dementia itself, why a specific diagnosis matters, and some signs and symptoms every family should recognize. So let's get started. One of the biggest misconceptions is that dementia is a diagnosis all by itself. In reality, dementia is an umbrella term. There are many different types of dementia, including Alzheimer's disease, vascular dementia, Lewy body dementia, frontotemporal dementia, Wernicke Korsakoff dementia, Crutchfield Jacob disease, dementia related to traumatic brain injury, chronic traumatic encephalopathy, and even conditions involving hydrocephalus. So think of dementia like the word cancer. We would never treat every type of cancer exactly the same way. So in the same way, understanding the specific type of dementia can dramatically affect treatment expectations and caregiving strategies. There are specific, medications now for specific types of dementia. And so getting that diagnosis helps you, your loved one, make sure that you're managing that dementia in the correct way and getting the best possible outcome with your treatment. Another important reality is that not every cognitive change is dementia. For example, there are several conditions that can mimic dementia. For example, hydrocephalus, sometimes called water on the brain, delirium caused by urinary tract infections, vitamin deficiencies. Can you believe even just deficiencies in B1, B12, or vitamin D can cause some symptoms that look like dementia, even untreated chronic depression. In certain situations, some of these conditions can be treated pretty quickly or at least improved, which is why obtaining a thorough medical workup is so important. And I really do… I want to point out the urinary tract infection, that is so common. We see that in our practice a lot where family members say their loved one has had a sudden turn, sudden decline in cognitive ability, and maybe they're even forgetting who people are suddenly or behaving in a really erratic fashion and come to find out they just have a urinary tract infection. This can happen. An untreated urinary tract infection is so common in our elderly, especially for people who are in the nursing home. It's one of the first things that I would want to look for if I were their loved one. Untreated chronic depression is so common in our elderly as well. And so I want to encourage you, if you have a loved one who has been exhibiting symptoms of depression, and think about how long it's been going on. For individuals where this has been long term, it may be hard for you to remember that time when your loved one did not seem depressed, but that is not a normal part of aging. Depression is not a normal part of aging. So I wanna encourage you, if you have a loved one who is exhibiting chronic depression and maybe has for a very long time, please encourage them to get treatment for that because it can cause cognitive symptoms to appear. Alright. Well, many families look for dramatic memory loss at first. Okay? But dementia often begins very subtly. You may notice changes in vision, changes in personal hygiene. Maybe your loved one now, you see them in the same clothes day after day, or, they're just not attending to themselves like they used to. Maybe they have difficulty performing routine tasks. Maybe they forget the route to take to Walmart, you know, and and they've lived there. They they know that route like the back of their hand, but suddenly they can't get there. Difficulty finding words, trouble following conversations, and vulnerability to scams or financial exploitation. So let's take each one of those in turn. Changes in vision is is a real telltale sign, and it can start pretty subtly. But what you need to understand is that for someone who truly has dementia, their vision is going to change over time in a pretty characteristic fashion, a pretty predictable fashion. The first thing to go is going to be their, peripheral vision. So just in general, understand that their field of vision is going to narrow, and they're going to lose the edges, if that's a way to say it. They're gonna lose the edges. And how does this start to impact them in the beginning? Well, a couple ways I can think of. Number one, they are not going to notice you coming from the side. Okay? So if you walk up to them from the side and maybe reach out and touch their arm, they may startle because they did not see you coming. Another way that this manifests itself is is in their gait. How they walk, or maybe not… Maybe that's not the right way to say how they walk, but but what they look like while they're walking because you may start to notice them looking down, like tilting their head down quite a bit to look at where they're stepping in a normal, like, in their house. So I'm not talking about if they were walking outside on uneven ground, but I'm talking about just in, you know, walking in their house or someplace on an even plane where they're having to tilt their head down quite a bit to see their steps because they've lost that bottom part of their peripheral vision. They've lost the edges. They've lost the sides, they've lost the the lower part of their field of vision. So that's two things you could notice pretty quickly with vision. This has impacts with caregiving, for sure, and we'll talk a little bit about that later, but, you know, with… As their field of vision changes, it's it's… They they lose the edges, and then it becomes like they're looking through binoculars. So if you put your hands up… Both your hands up to your eyes like you're making binoculars, think about if that's all you could see. That's what I mean by losing the edges. But then eventually it's going to decline. Their field of vision is going to decline to like monocular. Very narrow field of vision. So if you're a caregiver, you don't wanna come from the side. You don't want to startle your loved one. You also wanna be sure that you're placing things that you want them to pay attention to, such as food when you're eating… When you're, you know, eating with them or things you want them to review or pay attention to. You wanna make sure that they're in front of them, but not too close to them and that you approach them from the front where you're certain they can see you. Changes in language are pretty interesting as well. Their their ability to recall vocabulary that they usually use starts to decline. Their speech comprehension may become increasingly difficult, and the ability to engage meaningfully in conversations, especially in groups, can be, difficult as well. So their normal speech starts to decline. Maybe you'll see that they become more quiet than they used to be in social situations. They don't engage, in real meaningful conversation the way they used to. But what's interesting is, and it can be confusing to families, is that over time, while the nor… The the the language that they're… That you're used to them using may decline, their ability to engage in conversations, there is a a type of speech that hangs on the longest, and this can be disconcerting. So rhythm, social chitchat, prayers, music, swear words, sexual language, and racial slurs are in the right lobe of the brain as opposed to the left. The left declines first, which is where language production happens usually, but the right lobe retains those things I just named, rhythm, social chitchat, prayers, music, swear words, sexual language, and racial slurs. Now what do I mean by social chitchat? So these are sort of, like, automatic language, maybe deeper memory type of language repository, if you will, in the right lobe. And these hang on the longest, and they can be confusing because they will make you think that your loved one still has, more cognitive function than they actually do. Social chitchat is those sort of automatic things that you say in response to other people, like, how are you today? Oh, I'm doing fine. How was church? It was great. The music was really good. Are you enjoying the weather? Oh, yes. It's so nice. Like, that sort of easy banter is so ingrained that we can engage in that for a very long time with cognitive decline, it can be confusing and make people around you think there's not been any change. The swear words, sexual language, and racial slurs can be very troubling to a family. And so if you have a loved one who has started saying things that they've never said in their life, if if grandma who is in the nursing home is suddenly using racial slurs with some of the other residents, speaking about sexual things when she would never have said these things before, swearing. I want to comfort you to to say that they are not aware they're doing this, and it is… It can be a symptom of the disease progression that their ability to communicate has now shifted from their left lobe to their right lobe, and they are… They're saying things that they hold in their memory that they may have never said before. And so just understand that can be part of the disease progression. While we're seeing these declines in our loved ones, one of the most powerful things to remember is that the behaviors you're seeing are not stubbornness. If you start to see your loved one be resistant to you, be suspicious even of you, swear at you. They're not being stubborn. This is not intentional behavior. These behaviors are often the result of actual structural changes occurring in the brain. When families begin to understand this, their frustration can give way to compassion. Dementia, all the types of dementia cause structural changes in the brain that are affecting your loved one. The organ that, you know, coordinates everything your body does, all of your thoughts, how you behave is undergoing structural changes and decline. And these behaviors that you'll see, these changes in vision and in language capabilities can very much affect your loved one's day to day behaviors, and they are not intentional. So when we understand this, the goal becomes less about correcting your loved one and more about how can we still connect. So today we've covered the first thing every family needs to know after a dementia diagnosis, and that is understanding the disease you're facing. Get a specific diagnosis whenever possible, learn how that diagnosis affects the brain, and begin adapting your expectations and your communication strategies accordingly. In our next episode, we're going to tackle something many families ignore until it's too late, the legal documents that can either make a dementia journey far easier or far more difficult. Thank you for joining me on Second Half Conversations. I'm Sondra Ziegler, and remember, you're not alone on this journey. A quick reminder that today's conversation is for educational purposes only. It is not meant to be legal advice because to give you legal advice, we need to meet with you and know your specific situation. Thanks again for joining us today for this conversation, and remember to make the second half the best half.