A Closer Look at MCI and Early-Stage Dementia

In this episode of Hope Floats, licensed clinical social worker Shoshawna Rainwater and professional certified coach Rachel Coady discuss the early stages of Alzheimer's and dementia, focusing on symptoms, caregiver preparation, and the importance of legal and financial planning. They discuss mild cognitive impairment (MCI), its symptoms, and how it can progress to dementia. They emphasize the need for a thorough medical workup and the significance of staying present and mindful throughout the caregiving journey. The conversation highlights the emotional changes that may occur and offers practical advice for caregivers to navigate this challenging experience.

Takeaways:

• Mild cognitive impairment (MCI) is a measurable decline in cognitive abilities.
• MCI can also be referred to as mild neurocognitive disorder (MNCD).
• Changes in higher-order thinking skills are often the first signs of MCI.
• Routine and familiarity help individuals with MCI function better.
• Legal and estate planning should be prioritized early in the caregiving process.
• Many cases of MCI progress to dementia, but some may revert to normal function.
• Caregivers often notice changes that others may overlook.
• Short-term memory is usually preserved in early-stage dementia.
• People with early dementia may struggle with multitasking.
• Recognizing significant events, like getting lost, is crucial for caregivers. Alzheimer's affects short-term memory and mood.
• Early symptoms include forgetting names and apathy.
• Paranoia and accusations can emerge in the early stages.
• A thorough medical workup is crucial for diagnosis.
• Legal and financial planning should be prioritized early.
• The early stage of dementia lasts about 2-4 years.
• Mindfulness techniques can help caregivers stay grounded.
• Caregivers should ensure all documents are current.
• It's essential to have open conversations about care planning.
• Staying present can alleviate feelings of overwhelm.

Transcript

Shoshawna Rainwater (00:05)

Welcome to Hope Floats, a podcast for people who are navigating the challenges of caring for a person with dementia. I'm Shoshawna Rainwater, a clinical social worker in private practice supporting people who are caring for a person with dementia. I'm also the daughter of a person who lives with dementia.   

Rachel Coady (00:22)

And I'm Rachel Coady, a professional certified coach and previously a primary caregiver for a mother who was on a dementia journey. On today's episode, we want to do a deep dive into the beginning of the journey, understanding more about mild cognitive impairment and early-stage dementia. We'll also talk about ways caregivers can find support in the early stages, as well as create and offer some support to listeners during this time. So let's jump in.

Shoshawna Rainwater (00:56)

Hi, Rachel. 

Rachel Coady (00:57)

Hey, Shoshawna, how you doing? 

Shoshawna Rainwater (00:59)

Good. How are you?

Rachel Coady (01:00)

I’m good.  Excited to talk about some early stages of this disease and how we can support our listeners.

Shoshawna Rainwater (01:06)

Yeah, I'm glad we're together today to talk about this. So much of what we talk about in this podcast and our primary aim is to really help people feel more situated in the understanding of this dementia landscape. So walking people through the various stages of dementia, sort of episode by episode, has been important to us. And I'm glad we're sitting down today to talk about the early parts of the disease experience.

Rachel Coady (01:36)

Yeah, so to kick us off, what actually is Mild Cognitive Impairment? What does that mean and what does that look like?

Shoshawna Rainwater (01:42)

Mild Cognitive Impairment or also known as MCI is a slight but measurable decline in cognitive abilities. So when we say cognitive abilities, we're generally talking about our mental and thinking abilities. And in Mild Cognitive Impairment, these are things that we begin to see that are very, very slight yet measurable changes in how we normally navigate thinking and memory. 

So, Mild Cognitive Impairment is changes happening in the brain that are resulting in people still being independent in their activities. But the areas that are impacted is the efficiency with which we do things. So when we say activities, let's talk about that a little bit because gosh, when I think about activities, I think about the things like playing tennis or pickleball or those.

 Rachel Coady (02:44)

Mm-hmm. Mm-hmm.

Shoshawna Rainwater (02:45)

That's what I associate with activities. And I want our listeners to have an understanding of how the health system and medical system in the United States talk about activities. Because it's going to matter to you, listeners, as you are helping support and navigate this pathway with your person experiencing brain changes. 

The medical system likes to come up with new ways of talking about things that create almost like a separate language that we have to learn. 

Rachel Coady (03:14)

Uh-huh.

Shoshawna Rainwater (03:15)

And activities in the medical system gets talked about in two buckets. I've made a brief reference to this in previous episodes, but two buckets of care or activities. One is what is labeled IADLs.  And the other bucket is ADLs. And I think it's worth committing these two acronyms to memory. What they stand for is Instrumental Activities of Daily Living and activities of daily living. But what I think is important is to just understand that there are these two buckets and they each have their own acronym. 

The bucket of IADLs contains what we refer to as kind of those “higher order thinking” tasks that neurotypical people, so people with what society deems sort of normal brain function, most of those skills that we have attained and are good at by the time we are out of our teens. So these are things like the ability to go shopping and the ability to prepare meals, the ability to drive ourselves to and from places, to manage finances, to navigate technology. 

You can see in that description, those are kind of a bit higher-order thinking skills. They're different than the other bucket, which contains skills that have to do with self care of our own bodies. The things that many of us are able to achieve by the end of early childhood things like bathing ourselves and dressing ourselves, toileting ourselves.

Rachel Coady (04:58)

Those are ADLs.

Shoshawna Rainwater (05:00)

Those are ADLs, and we're gonna talk about that in another episode because those skills, those ADLs tend to still be highly preserved and intact in these earlier stages of dementia and MCI. So we don't see changes in that second bucket of ADLs. We do as the disease progresses, but where I want listeners to know we're really gonna start noticing changes is in this IADL higher-order thinking bucket of skills. 

And we've been coached up as humans, at least in this country, on how to do those things, like manage finances and driving. We get those skills taught to us by our primary caretakers–so parental figures or guardians, but we also get those skills kind of drilled into us and offered to us in school settings.  So, by the time most people graduate high school, these are skills that they've had some training and coaching in. Those are the skills that begin to experience changes and dissipate as early as Mild Cognitive Impairment. And the places that we see them the most in this bucket of IADLs are in sort of four areas that I want to offer a bit of an acronym here.

Think about M-M-T-T, and that is Money, Meds, Technology, and Transportation. So those are four categories of those IADLs that I think we really start to see some changes in our people who are beginning to experience MCI. So things like mail  just sitting around and is not opened. Which can be in that category of money, right? As we are getting bills coming through the slot in our door. Many older adults experiencing brain changes have not fully embraced an online bill-paying format. So we are often seeing sort of unopened mail lying around. People may become more vulnerable to online scams…

Rachel Coady (07:07)

Hmm.

Shoshawna Rainwater (07:07)

… or people calling and trying to get them to put their money in places that they normally would never have done. We've talked about how we're all susceptible to that given how crafty and insidious a lot of these scammers are. But our people experiencing cognitive impairment are very vulnerable to this.

Managing medications, remembering to take them correctly, remembering to refill prescriptions. We see changes in that in MCI. 

Having trouble with the computer or navigating the phone in ways that were not present in their previous time of navigating technology. 

And then beginning to have concerns about the transportation piece, meaning the vehicle that they're using to get to and from places is beginning to maybe show up with some dents. They may be involved in fender benders. 

Rachel Coady (08:00)

Hmm.

Shoshawna Rainwater (08:01)

So people are still generally independent in these activities. They're just less efficient in how they do them. And that's how the medical establishment sort of determines that someone is starting to enter into MCI.

So we're probably wondering as a listening community, well, oof, “what is MCI now that I know what it is? What can I expect? Is this going to turn into or evolve into something bigger?” Many cases of Mild Cognitive Impairment do progress to dementia. 50% of them progress within seven and a half years from MCI to dementia. And most cases of MCI progress to dementia within seven to 14 years.  However–and I think this is just more evidence that the brain is such a complex organ for all of us to be trying to understand and figure out–10 to 30% of Mild Cognitive Impairment cases may revert back to typical and quote-unquote normal brain function. So we're really not sure when someone has MCI, if it's going to progress, but I think we can assume that it's going to, and then, do some planning and make some changes around how to support someone as if it's going to progress, and if it doesn't progress, then fantastic, or if it reverts back to normal, great.

Rachel Coady (09:27)

Mm-hmm.

Shoshawna Rainwater (09:28)

But the more likely scenario is the one I think we should get prepared for.  So what does that look like?  So for people living with Mild Cognitive Impairment, routine and familiarity are the key to success. And we've talked in previous episodes about how increases in anxiety decrease performance in all humans. And this is particularly keen and present for people who are in MCIs that they really function at their best when they know what to expect and they can feel a sense of competency when they're doing these tasks. And oftentimes, we don't really notice the deficits present in MCI until someone is sort of outside of that normal, usual environment that they're in. 

So sometimes the deficits happening in MCI don't really get uncovered or revealed until somebody is perhaps on a trip with family and family begins to notice, “wow, they're really having a more difficult time than they normally would.”  Usually because we're seeing that wayfinding, so finding our way, those wayfinding skills get impacted. Because a trip is generally taking us out of our normal routine and familiar environment, right? So that tends to get uncovered, or those deficits tend to get more uncovered.

So for caregivers, you may be feeling worried and concerned. You might be feeling frustrated by what you're seeing. And you may be thinking, “My goodness, I really don't want to attend to what this could be.” That's a very understandable thing to be thinking. 

Others may not notice what you're seeing. So oftentimes in this early stage, people, unless they're really, really in touch with sort of the day-to-day function of the person with brain changes, many people don't notice. So you might be wondering, am I just, am I seeing what I think I'm seeing?  And so a lot of what we see just doesn't get validated by other people's perspectives because they might interface briefly or episodically, you know, come into town once a month and be like, “I think they seem fine.” 

So, this is a place to encourage a thorough workup with a medical provider who can really help us know is this looking like MCI or could this just be normal, sort of typical aging where we do see slower processing speeds and we do see some changes in memory; not usually in the short-term memory–that's usually preserved. But are the things we're seeing something that we need to be thinking about and getting prepared for.

And it's also the time that we want to begin prioritizing the legal and estate planning aspects of the future and the care of the person, completing documents, including healthcare documents and the estate planning legal documents. 

Rachel Coady (12:25)

When it moves on to early-stage dementia, what kinds of things are happening there and what things will we expect or see?

Shoshawna Rainwater (12:33)

So the cognitive problems, so thinking, organizing, remembering those problems. When we've moved from MCI into a mild or early stage of dementia are pronounced enough to interfere with daily function. Meaning that consistently and on a day-to-day basis, some or one of those IADLs are negatively impacted. 

So the inability to manage one's medicines correctly, the inability to make sure you're staying on top of finances, making sure that you have been able to get out and home safely. A lot of this goes unwitnessed, but there's probably something happening regularly or more frequently on a trip to the store or to, you know, to run an errand. So those kinds of things begin to interfere with daily function. So we see an uptick in the frequency and it really becomes one of those things that be, it becomes harder for us as caregivers to really ignore or sort of excuse away or rationalize away why it's happening. You're usually pretty concerned at this point if someone is moving into the early and mild stage. 

Rachel Coady (14:00)

We had a situation similar to this, think, on our journey where there were some concerns starting to be shared about my mom's driving ability. And we were encouraging her to only do short distances. And she actually told us one day that she drove to a local store that she has gone to, would go to weekly. And she couldn't remember how to get home. 

Shoshawna Rainwater (14:22)

Mm-hmm.

Rachel Coady (14:23)

And for us, it was like, a), I thought it was really awesome that she told us that.

And it made me wonder if it had been a problem before she admitted it. But also, it was like very clearly a statement of, “this is not safe. This is a really uncomfortable thing.” And it was a real moment for her to just admit that this is, I think, something's going on. And so yeah, that was like one of our very early examples of “there's probably some changes happening, we need to look at here.”

Shoshawna Rainwater (14:51)

Some other things that early mild dementia can look like can be harder to multitask, and people with early-stage dementia often do better and have a preference for monotasking or just doing one thing at a time. We mentioned slower processing speed from previous levels of ability to process things.

The preference for familiarity over new experiences also starts to become more evident in most cases. We see more forgetfulness, including the short-term forgetfulness or short-term memory recall gets impacted.  Forgetting names of things and forgetting names of acquaintances also begins to happen in mild- and early-stage. So usually, people can still remember close friends and family members, but acquaintances that they might not see very often, those names and sort of the connection to them starts to be forgotten. 

And then the other area that we can see changes in people in mild and early stage is in their mood.  

Rachel Coady (16:04)

Hmm.

Shoshawna Rainwater (16:05)

So we usually see the beginnings of some mild mood changes. I often see this show up as apathy or indifference.  You might start to see people seemingly kind of indifferent or apathetic, not really caring and not really caring that they don't care. In this stage, we also might see them as seemingly more depressed or more anxious. But usually these are not significantly interfering with day-to-day function. They're noticeable by us, but they're not usually enough to sort of create significant waves in their lives.

This is also where we can see accusations and paranoia begin to emerge. So this might look like accusations that a spouse is cheating. This might look like paranoia around the intent of a person and “why they are coming around, what are they wanting from me?” And we might also see paranoia and accusations of things being stolen from them. That's not uncommon. And oftentimes, what's also happening in this stage are people with dementia are beginning to place things or hide things for safekeeping in places that they don't want other people to find them. And then when they cannot find where they've put something that gets translated in their brains as something that someone is doing to them, someone stole that.

Rachel Coady (17:35)

Mm-hmm. Mm-hmm.

Shoshawna Rainwater (17:37)

So those are really common things that we see in early stage.

Music Transition

Rachel Coady (17:59)

When we think about starting to see these signs of either MCI or early-stage dementia, what are some things that come to mind quickly for you that caregivers can really do to prepare themselves for this part of the experience?

Shoshawna Rainwater (18:15)

Great question. So it's hard to uncouple preparing ourselves and also preparing our person with brain changes.  So one of the things that comes up for me is let's get a good workup underway. And pitching it to your person who's probably gonna have some reluctance around having a good workup is to say, “they deserve a good workup and they deserve to have anything reversible be addressed.”

Rachel Coady (18:41)

And I'll just add, if you have any curiosities, listeners, or questions about the importance of getting that diagnosis as early as possible, we really recommend checking out our previous episode four on getting a diagnosis, we recommend checking out our previous episode four on getting a diagnosis.

Shoshawna Rainwater (18:54)

The other things that come up for me as a clinician who has watched people move from mild or early stage into middle stage and beyond is that the mild and early stage of dementia is the window of opportunity that we have to complete the right kinds of documents that are going to preserve a person's autonomy for as long as possible and also ease our way as the support team as we've moved into mid-stage and beyond. And what I mean by that is the documents that need to be completed in order to have a successful experience in this disease of dementia have to be done while the person with dementia still has capacity. 

Rachel Coady (19:45)

Mm-hmm.

Shoshawna Rainwater (19:46)

I've said that in previous episodes, but this mild/early stage is a very valuable and time-limited window of opportunity to do those things. As the person moves into dementia, those skills and the ability to complete what we call “first person advanced care planning”--that's five fancy words, and we'll probably do a whole episode on what that means, but that window will go away. So I don't say that to put more pressure on us as the caregiving team, but to really underscore if you're gonna put your time and energy anywhere, this is where I think it's worth putting it.  This is things like estate planning, living wills, powers of attorney for finances, advanced directives for the healthcare aspect. And we've put on previous episode resource lists some of the places to find this information. “What is it that I need to start completing and prioritizing?”  And we'll put those back in the show notes for this particular episode, as well.

Rachel Coady (20:52)

And one thing to clarify here, it's different to ask the person who's experiencing some of these changes if these things are done, than to know that these things are done. 

Shoshawna Rainwater (21:05)

Hmm.

Rachel Coady (21:05)

And so I think when we say to make sure these things are in order, do we mean having copies of those? Do we mean verifying it with like a doctor or a lawyer that they exist? Like how far do you go at this stage with really making sure those things are in place?

Shoshawna Rainwater (21:19)

You go all the way, you go as far as you can. 

Rachel Coady (21:21)

Okay.

Shoshawna Rainwater (21:22)

You look at these documents, you review them with the person with brain changes. 

Rachel Coady (21:27)

Okay.

Shoshawna Rainwater (21:27)

If changes need to be made or updated, you do that. You make sure you have copies. You make sure you know where the original is housed. 

Thank you for naming that, Rachel. I hadn't really thought about that, but it is not enough, in my opinion, to ask the person, have these things been done? And to hear them say, “yeah…

Rachel Coady (21:48)

Yeah.

Shoshawna Rainwater (21:48)

“…they're all in a drawer and if I die; that's where you find them.” That's insufficient preparation for ourselves as we go into this disease experience. 

Rachel Coady (21:56)

I'll also just share that when my mom's changes were starting and we realized we needed these things, we'd always known that she and my dad both had these documents, but they actually all could have been updated. 

Shoshawna Rainwater (22:07)

Yes.

Rachel Coady (22:07)

And so instead of asking and putting that pressure on my mom, I said, “Hey, can I, can I call your financial planner with you? Can I call your lawyer with you? Can I talk with your doctor with you about these things.” And just ask, you know, “it's 2025- maybe there's new documents, maybe there's new services, maybe there's an updated form?” We didn't have an updated POLST. We didn't have the right, like codicil to the will, whatever. So really making sure that not only the person's done them, but that they're actually current for whatever standards are for 2025 is really valuable. 

And then there's peace of mind and just knowing, “yep, those things are all current. They're all in place.” It's a big deal just to know as a care team that you've got the things you need to keep going.

Shoshawna Rainwater (22:51)

Thank you for naming that. And the most predictable change that's coming in the disease experience of dementia is unfortunately, the loss of capacity for making complex decisions by the person with brain changes. We know that that's coming and it usually arrives by mid-stage. So given that, this is a time-sensitive intervention that we're asking or telling folks would be a good idea to prioritize. And I agree with you, Rachel, that it really sets things up for a smoother experience of what can be an 8-10 year journey with this person.

Rachel Coady (23:32)

Mm-hmm.

Shoshawna Rainwater (23:33)

Sometimes people ask, “how much time do we have in this early stage?” 

Rachel Coady (23:58)

Mm-hmm.

Shoshawna Rainwater (23:58)

“How much time do I have to get these things underway?” And I would say this is probably the hardest question to answer in dementia is how much time do we have before this progresses? I hear people often say, “well, if you know one person with dementia and you really know one person with dementia, we don't know exactly what lies ahead.”   I actually disagree. I think we have a pretty good understanding now of what the pathway forward looks like. What are the symptoms and issues that we're gonna see because we've had a high number of people going through this experience that we've been studying for many, many years. So we know what the trajectory typically looks like. What still varies wildly is the timeline. So people spend different amounts of time in different stages. And at early stage, I would say on average, we're probably talking about two to four years.

But I wouldn't wait four years before having these conversations…

Rachel Coady (24:36)

Mm-hmm.

Shoshawna Rainwater (24:36)

… because we never know when someone's gonna be moving from early into mid. We can go by averages of length of experience.  You know, the average dementia experience is eight to 10 years, then we're probably gonna be spending anywhere from two to four in this early stage. But we don't know when that's gonna happen.

Music transition

Rachel Coady (25:09)

So there are many other things that could be helpful at this stage and we actually did a little work just looking at what AI recommends we do during Mild Cognitive Impairment and early stage dementia. And we're going to offer that summary resource on our website at hopefloatspodcast.com. There are tips for the caregiving and there are tips for just ways that you can get some additional support–be it through people resources or tech resources. So check that out when you have a chance. 

I think the biggest thing for our family in this stage when we started to realize that something was really shifting and changing for our mom was that it felt very overwhelming and very scary as her care team. We had all heard the worst scenarios and Alzheimer's is a really scary word to hear doctors and friends and family talk about. And I just want to acknowledge that for me, I think in that moment, it was really easy for me to try to get very ahead of myself and upstream and kind of fall into fear and scarcity mindset. 

I think the key to this early part of this experience and this disease journey is actually presence–is to really staying in the moment to acknowledge what you know and what you don't know and to try to have some patience and understanding with yourself about what's available right now.  And so one of the things that we do in coaching to help us get grounded and get present are some exercises that basically interrupt our busy minds and help us come back to the moment. And you might already have a meditation practice or a tool that you can use to do this, but we want to start to offer ways to help ground you, the listener, in our episodes. 

And today when we talk about the importance of really staying present and being centered with yourself and your loved one in this phase, I just want to offer an exercise. So if, listener, it's available to you right now, try to just take a couple of deep breaths. And take in this moment of where you are. And once you feel like you're in your body and here, I want to recommend that you try to put your two pointer fingers together and just gently rub just your pointer fingers really lightly back and forth against each other. And what I want you to try to feel here is if you go slow enough and light enough, can you actually find the small ridges of your fingerprint between your two fingers? And just notice what that feels like and paying attention to just kind of that friction and connection.  

This is an activity that you could do as many times throughout the day as you find helpful or useful. But what's happening for you is that you're giving your brain something else to focus on that's very simple. It's always accessible to you. And it's right there. And the good news is when you do that, it keeps your brain from starting to swirl and think about all this other stuff that's going on in your life in the world around you that you might not be able to process right now. It just brings you back to this tender present moment of letting touch be a way that you can be grounded and be present. 

So if you're in a moment in this journey where you could use some ways to just get grounded and get present, I really recommend trying positive intelligence, this little finger exercise to help you find your fingerprint. Take some breaths and come back to the moment. Just know that you're here right now and that you'll figure out what's next when you need to figure out what's next.

 Shoshawna Rainwater (29:13)

Rachel, I'm sitting here doing this exercise as you're guiding us through it and I already feel different.  I love that. And I agree that it's easy for our minds to run a little amok when we're in this stage. The path feels murky, but you have enough information, if someone is in early stage to know that that you likely have a long journey ahead, and I know that that can start to feel quite grief-filled and worrisome and anything that brings us back to the present moment where things are likely ok and give our minds a rest and a break is really helpful. Thank you for bringing that.

On today's episode, we talked about Mild Cognitive Impairment, and we talked about early stage dementia, some of the differences between them, and some of the things that we might expect as we look into the future of the dementia journey.   We also talked about some of the things that we can do to help caregivers feel more prepared along this journey and particularly in this phase of mild and early stage. 

Rachel Coady (30:19)

In a few weeks, we'll be back and do another episode where we're going to deep-dive on mid-stage dementia, the unique aspects of that phase, and some keys for caregivers and families who are experiencing that part of the journey. Until then, take care and thanks for listening.

Shoshawna Rainwater (30:35)

Thanks everyone.

Rachel Coady (30:39) 

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  (30:53) 

You’ll find us at our website HopeFloatspodcast-dot-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  (31:07) 

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