Worried and Wondering: The Value of Seeking a Diagnosis

 In this episode of Hope Floats, hosts Shoshawna Rainwater and Rachel Coady discuss the complexities of seeking a dementia diagnosis for loved ones. They explore what constitutes normal cognitive aging versus concerning changes, the importance of obtaining a diagnosis, and strategies for approaching the conversation with loved ones. The episode emphasizes the emotional challenges faced by caregivers and the significance of communication and support in navigating the journey of dementia care.

Takeaways

• Seeking a diagnosis is crucial when cognitive changes are noticed.
• Normal cognitive aging includes occasional forgetfulness and word-finding difficulties.
• Abnormal cognitive changes may include forgetting names and significant events.
• Recognizing signs of concern can help in timely intervention.
• Obtaining a diagnosis can alleviate confusion and provide clarity for families.
• Communication is essential in discussing diagnosis and care options.
• Caregivers should prioritize self-care during this challenging time.
• It's important to approach medical professionals with clear concerns and questions.
• Post-diagnosis, families should consider legal and financial planning.
• Sharing experiences with others can provide support and insight. 

Transcript

Shoshawna Rainwater (00:07) 

Welcome to Hope Floats, a podcast for people who are navigating the challenges of caring for a person with dementia. I'm Shoshawna Rainwater.

Rachel Coady (00:15) 

I'm Rachel Coady.

Shoshawna Rainwater (00:17) 

On today's episode of Hope Floats, we'll be talking about seeking a diagnosis when something feels amiss with our loved one. We'll talk about what's considered normal cognitive aging and when we might be worried about a person's cognition. We'll talk about when it might be time to take action around those changes that you're seeing. We'll talk about why it can be worth the effort to obtain an official diagnosis in your loved one. And we'll review some communication and navigation tools for conversation in the diagnosis experience. Let's get started.

Rachel Coady (00:54) 

So as we jump in today, I was thinking maybe a great place to start would just be to help the listener have better understanding around what is considered a normal aging experience for our brain and memories, and things that are more significant that imply cognitive changes?

Shoshawna Rainwater  (01:11) 

So let's start with talking about what's considered quote unquote “normal cognitive aging.” And we think about this in sort of four different categories. And those categories are Orientation. So how do we sort of orient ourselves to our world? Language, Planning and Problem Solving, and Short-term Recall and Learning.

So with Orientation, it's normal as we grow older to make mistakes about which day we're on or which week we're in. And I've noticed that oftentimes when people have retired, they've lost the need  to track a Monday through Friday kind of schedule. So, part of what's quite normal, especially for older adults who might be retired is to lose track of, “yeah, it's Monday or yeah, it's Thursday” and even losing track of the week; but also having the retained ability to figure it out later.

Also normal with regards to this Orientation category is forgetting why you have come into a room. Forgetting why you came into a room, but being able to retrace your steps and remember eventually why you came back in.

Rachel Coady (02:26) 

I feel like a lot of people start making jokes about their cognitive failure or maybe they're losing their memory around those kinds of events. And I think with your peers, when you're in that age of life, it can just feel like, “oh no, here's the first sign!”  But I'm glad you're explaining this because hopefully we'll get more clarity on it.

Shoshawna Rainwater (02:50) 

Yeah, yeah, yeah. So another category is the category of Language. And so it's not uncommon as we grow older to have occasional difficulties finding the right word. This happens to me, as well, as a person in their early 50s. And I noticed this also in peers around my age.  And it continues to be normal as we grow older, to have trouble remembering or finding the right word. We call that “word finding difficulty.” And it's also pretty normal to lose the thread of your conversation if you're distracted or you've got a lot of people speaking at once. That's normal in older adulthood and regular cognitive aging.

Planning and Problem Solving, we might see some difficulties in multitasking when we're distracted. So, kind of related to losing that thread of conversation when we're distracted, but losing or having that difficulty with multitasking, if we have a lot going on around us, that's normal. And then occasional mistakes doing finances or say filing your taxes.

Rachel Coady (04:00) 

We live in such an information age and there's so much stimulus for all of us at all ages that I can imagine it's more complex probably than it's been for previous generations for our elders now. And so it does just add to the curiosity of like, “is this normal? Is this okay?” But we're processing way more information than previous generations have, so...

Shoshawna Rainwater (04:23) 

Right, and that whole question too about multitasking versus monotasking,how much are we actually really doing well when we're trying to multitask? And I can certainly feel my threshold and tolerance for managing lots of different tasks has changed as I've grown older. So that is normal as we grow older to have difficulty with managing all of that stimulus and input. And to your point, we've got more stimulus and input than we've probably ever had throughout human history. 

Rachel Coady (04:56)

Yeah.

Shoshawna Rainwater (04:57) 

So, this other area of short-term recall, it's normal to occasionally--and you're hearing me use that word “occasionally.” Occasionally does not necessarily represent a pattern, right? These are episodic experiences. So occasionally forgetting names of other people and things like appointments that might be on the books. But remembering them later, that's part of normal aging. 

Rachel Coady (05:24) 

Okay.

Shoshawna Rainwater (05:25) 

So occasional forgetfulness about names and appointments, but being able to remember them later. And then occasional misplacement of things like keys, your eyeglasses, phone, from time to time.  So that's sort of what we could expect with normal cognitive aging as we grow older.

Let's talk a little bit about what is not considered normal aging and when we might feel a little bit more concerned about what we're seeing. And when I use the word “abnormal,” what I mean by abnormal is that it's indicative of a cognitive issue due to an underlying brain disorder. Abnormal, I think can sound pejorative, but in the context of how this might be viewed by medical clinicians. We're talking abo ut something that might indicate that we were worried about an underlying brain issue.

So, some of these things that are considered likely abnormal are forgetting a close friend or a family member's name or forgetting recent events altogether.  Putting our keys and our glasses and our phone in unusual places. Some people have said, “I kind of knew something was up when my mom started putting her keys in the freezer” or in a place that you wouldn't normally expect to find an object placed or hidden or put away. 

Also not considered normal is having a lot of trouble concentrating and focusing. We see trouble with keeping track of monthly bills.  Frequent difficulties finding the right word or describing something by saying sort of “that thing”- having a lot of difficulty pulling up the name of something. And interestingly, in Alzheimer's dementia, we can expect that people will lose nouns first. So that ability to sort of name an object, pull that name into your awareness, can be impacted by brain changes.

Regularly losing the thread of what someone is saying, losing track of the date, but more so in terms of the season. So, the fact that we are in October and the things that happened in October, you would have the lessened sense of the passage of time.  And then another hallmark of abnormal cognitive aging would be getting lost or not knowing where you are when you're in a familiar place. And that's something we see often in the earlier stages of a dementia experience.

You might start to worry if you see changes in your loved one in the areas of mail. So, the bills and the financial management piece. Meals, so having trouble with getting meals prepared and synthesizing recipes, carrying out food preparation tasks, and then medications.  So, kind of those three M's can be a sign.

Rachel Coady (08:29) 

Yeah, I think in our family, probably all three of those were changing. And what I didn't realize was that my mom was also able to compensate for challenges there. So, she just liked to go out to restaurants more. And I wasn't paying close enough attention to like the supplements or things she was taking.  And then when we got closer to this moment of diagnosis and realizing what was going on, I could look back and go, “oh yeah, there were some signals there that I had missed,” because I didn't know what to look for.

Shoshawna Rainwater (09:02) 

Yeah, and I think at least in the initial stages, the changes that we see can be really slow to grow. They creep in, they're a little bit insidious, they are episodic. So, you might notice something like that in your person but then it's followed by some stability and a period of time where things go really well. So, it's easy to miss these signs at first. 

And then I think there's also this additional layer of, “Gosh, we really don't want it to be this. So, I'm just gonna push it to the side.” And in most dementias--abrupt changes are not part of the picture. An abrupt change in your person's cognition is probably more indicative of an acute medical issue. Not of a slow growing dementia experience.

Rachel Coady (09:56) 

I have one question. When I look back at our experience, my mom had a car accident, it was a minor car accident. And one of the things that we realized months and months later was that the way she could recite that car accident was really inconsistent. So I'm curious, is a high stress event and the way they manage a high stress event compared to previous occurrences a signal at all?

Shoshawna Rainwater (10:22) 

It is. And the ability to sort of accurately recall the details of something that probably took a huge toll on your mom's brain at that time. It was a very stressful event for her, most likely. Yeah, it can really impact the ability to sort of recall and retell a story consistently. And that's not because she's deliberately making things up. It's more likely because it's just her brain trying to make sense of an event that was pretty overwhelming for her to process. 

Rachel Coady (10:56) 

Yeah, I think that's a great descriptor.

Shoshawna Rainwater (10:57) 

And I'm glad you brought that up because let's add one “M” to the Mail, Meals and Meds. Let's add MVA, which stands for motor vehicle accident. And this is definitely where we can see some early changes, where things can feel a little bit worrisome. We might see some dents that our loved one either can't explain or doesn't mention at all. And we might see some minor accidents, running a stop sign, those kinds of things. Yeah, we start to see changes in driving abilities and that's because, whether we realize it or not, likely as people who've been driving for many, many years–most of us have been driving since age 15 or 16, at least in this country–and so much of it is automatic. Yet it's actually an activity that requires a ton of coordination and planning and organization in the brain. 

Rachel Coady (11:57) 

Mm-hmm. 

Shoshawna Rainwater (11:58) 

And so it is a place where we start to see some changes early on. 

Rachel Coady (12:01)

Yeah.

Shoshawna Rainwater (12:02) 

I'm glad you asked. And the other thing that can be difficult at this stage is people living with brain changes are often not keenly aware that something is going on in their brain. They may actually know or note that something is changing. But usually there's an underappreciation for how impactful it is on their lives.

Rachel Coady (12:30) 

Mm.

Shoshawna Rainwater (12:31) 

And we call that anosognosia, which is an inability to have insight into your own limitations and disease experience.  We'll do a whole episode on anosognosia.  As a person with brain changes, it can be really hard to even know that these things are happening because dementia can impact prognostic awareness and our own brain's ability to understand that something is changing. But I want to make room for another possibility here as to why people experiencing brain changes may not be eager to bring up these concerns with their doctor or with people they care about.

It's true that some people early on in the disease experience may have some awareness that something is changing. And what I hear people describe this experience as is one of terror. They are feeling terrified by this possibility, which makes sense when we think about dementia being the number one fear that most people have. So bigger fear than cancer, heart disease and other diseases. This fear of stigma and or of consequences that sharing their inner concerns about what might be going on in their brain prevents them from being forthcoming. 

And I had a woman tell me, the other day, I know that something is changing in my brain and I don't want to bring it up to my doctor because I don't want all the things that matter to me to be taken away. And I heard in her extreme worry and fear about being misunderstood or under supported in the disease experience. And some people, say this is people with brain changes then going into denial about what's going on. And I want to say that that might actually have some truth to it, that there could early on be an element of denial. But in the sense that denial is the brain's way of self-protecting against the exposure to traumatic events. And it's a very understandable and human response to the feeling of terror. So it's not a deliberate conscious setting aside of the worry so much as it is the brain trying to protect itself from experiencing something really, really difficult.

Rachel Coady (15:12) 

And so maybe in one scenario, you have some concerns because you might start to see changes. In our experience, we also had people around my mom that were more frequently with her that started to notice changes and they actually shared concern with me. I was living away from my mom at the time. And so, it was hard to know. Like, “well, you know, this is her friend and her neighbor.  Is this an issue? Is it not?”  And I felt kind of weird to get like a letter from her. And I've worked with other people who are children of people with changing behaviors and saying, like, “I heard this from her doctor, I heard this from, you know, another my aunt and uncle.”  You've got people looking out for you, which can feel weird to kind of hear their concern when you're their, you know, child or closest of kin. 

Shoshawna Rainwater (16:01) 

Yeah.

Rachel Coady (16:01) 

But they were spending more time with her so they saw some things I didn't see.

Shoshawna Rainwater (16:04) 

Yeah, it can be really hard to be that out of town, out of state family member and not be privy to some of the things that other people closer to our loved ones are seeing. And they serve in or act in these roles a little bit like an informant. And I think about, gosh, their experience of seeing these changes and probably holding some discomfort around, you know, “gosh, is this worth bringing up? Should I tell this, adult child I'm concerned?” Also being probably pretty worried and wanting to start involving an adult child or a loved one.

Rachel Coady (16:46) 

I had a little bit of an ego, I think, when I first heard the news. But then when I could put that down and realize like it was coming from a place of concern and care for my mom, I realized there's probably something we needed to pay some more attention to and look into.

Shoshawna Rainwater (17:02) 

Yeah. And these are not easy things to hear, right? 

Rachel Coady (17:05) 

No.

Shoshawna Rainwater (17:05)

As people who care about the person with brain changes, it's a really hard thing to hear.

Rachel Coady (17:21) 

We've covered before that there's not a cure for this, you know. So maybe one thing we should talk about is what are the benefits of going through the process of getting a diagnosis for this if there is no cure?

Shoshawna Rainwater (17:35) 

It's a great question. And I'll share from my experience why I think it's important to pursue and put the energy and effort into obtaining the diagnosis. 

One of the things we're going to deeply dive into in our next episode is actually there's a lot that can be done to manage the disease, but the approach involves using skills over pills. So we'll talk about that in the next episode. But one of the things that I like to think about is in the context of why seek a diagnosis is this idea that everybody deserves a good workup.  And it is possible that there's actually something going on in our loved ones' brains that could be addressed and even reversed.

Rachel Coady (18:22)

Mm

Shoshawna Rainwater (18:23) 

There are medical issues that actually can present as if they are a cognitive decline.  And my feeling is everybody deserves a good workup to rule out anything that might be fixable. And I think that becomes one of our primary arguments for why to seek a good workup to make sure that there isn't something, some other sort of lower hanging fruit that could easily be fixed. Wouldn't that be amazing if it were? And if it isn't, then knowing what's going on helps us as a family and as a support team be much more informed about how to best support you.

Rachel Coady (19:09) 

Yeah, it feels like when you don't have those answers–whether it's something that's treatable or not–you are leaving out opportunities for yourself, your family, other people that are going to spend time with this loved one to really figure out what they need or what supports them. So I agree. I think, when we felt like we wanted to do a test and see if we could identify changes happening in my mom, I was definitely worried about getting a diagnosis and what that would mean for us. But I also felt some validation. I felt like, “okay, I have a better sense of where we are and how I can navigate this now based on options.” And like you said, we do have options. There are things that we can do that can make the quality of life for our loved one with brain changes much higher than sitting back and just kind of hoping that the brain changes go away or that they're not what we think they are.

And there's probably more options for support now with the diagnosis than there ever have been, even though we're still pretty far behind in our knowledge about brain-based diseases. But I think it's just to say that as much as I didn't really want to know for sure, it helped me immensely to know for sure.

Shoshawna Rainwater (20:21) 

It was in our first episode, I shared this perspective that the only thing worse than dementia is the ignorance of it or not knowing that you're on this pathway. And I think it's easier in the beginning of the disease to kind of ostrich your way through; you know, “keep my head in the sand. I hope this isn't what it is. You know, I don't want to deal with this. I don't want to face this.  And in the setting of dementia, waiting can actually problematic. It's actually a challenge in a disease landscape that equals, over time, a lessening of a person's ability to participate in what we call first-person care planning. And so, by mid-stage dementia, many people, if not most,  have lost the ability to really drive their own decisions and be in charge.

Rachel Coady (21:21) 

Mm-hmm.

Shoshawna Rainwater (21:22) 

And we miss a valuable window of opportunity in early stage to have what we call “first person” care planning conversations about this person's fears and hopes and goals and what they would want for themselves with disease progression, kind of hard yes’s, hard no's. 

So this is what I mean when I say it can be harder to not have the diagnosis because you're left wondering and spinning, particularly by mid-stage. And you've missed out on that window of opportunity to really capture the first-person voice. Statistics about the disease tell us that only 50% of people with a dementia are actually diagnosed. You've heard me say that in previous episodes. And for the 50 % who do have a diagnosis, many of those diagnoses are not being made until mid-stage. So, we unfortunately have missed that window of opportunity for real true first-person planning that can happen when we seek a diagnosis earlier. 

And I also recognize there are circumstances where you will not be able to get a diagnosis. I recognize that that's true, too; but it's worth, in my opinion, the effort. Legal planning, financial planning, advanced care planning, those are things that really need to happen in early stage if they're going to involve the person with brain changes.

Rachel Coady (22:58) 

You know, I'm recalling when we first took my mom to Neuro for an analysis, she did not get a dementia diagnosis. She had mild cognitive impairment. And I thought she was much further along than that. But again, she kind of performed well and passed the test and, you know, had great banter with the doctors. But one of the things that I realized as things were changing with her meds, or were changing in some of the calendaring of things was that I was able to start to supplement support for her without a diagnosis that made her feel better.

Shoshawna Rainwater (23:33)

Yeah.

Rachel Coady (23:34) 

And so things like the Hero Pill Machine is an automated pill dispenser that we could set up. And I didn't say, “Hey, you're messing up on your medication. So, I have to get you a machine instead.” It was like, “Hey, wouldn't it be nice if you didn't have to do this every day and you could just like hit this button?” and it was that easy.  Getting a physical calendar for her and starting to write things in it as a team and doing that under the guise of like, “it would be really great to know what you're going to be up to this week. And I can tell you some things I'll be doing,” these were like really subtle small things that I could see start to help her feel safe and secure and dignified, but actually were really supplementing capabilities that she was starting to struggle with. And again, this was all before they officially called it dementia. 

Shoshawna Rainwater (24:19) 

Yeah.

Rachel Coady (24:20) 

So I think that earlier we learned, the more we were able to start to support her on that journey. And I think that added to her quality of life and the quality of our relationship with her before the disease really started to deteriorate her abilities.

Shoshawna Rainwater (24:34) 

When I think about those things that you did for your mom early on, if we were talking about this in a disability framework, those would be called “accommodations.” And those are really empowering and quality of life preserving for people, those accommodations. And I don't hear us talking about accommodations in dementia in the same way that I think those who work in the disability community are really good at doing.  But it just occurred to me that these are accommodations that we make to help with some of these changes that mom is experiencing.

Rachel Coady (25:08) 

And again, these are things that we started to explore and look at because we had checked in with Neuro and they told us, you know, “we don't have a dementia diagnosis, but there are mild cognitive impairment potentials.” So it helped to check in early and often.

Shoshawna Rainwater  (25:25)

One of the things that happens if you do seek that diagnosis early and your loved one is given the diagnosis of MCI or mild cognitive impairment, a lot of people are relieved to hear that versus the word dementia. 

Rachel Coady (25:44) 

Mm-hmm.

Shoshawna Rainwater (25:45) 

Not all, but many cases of MCI are sort of a pre-dementia that we could expect that the person will progress into dementia with time. But I see a lot of relief sometimes in people who say, “Oh, I just have MCI.” And sometimes MCI is all that it is and it doesn't progress into dementia. But what's valuable about that MCI diagnosis is that it is a pause point for people to say, “gosh, something's different, right, about the brain and let's work to make sure we're doing everything we can to help you be as independent and as safe as possible.”

So a couple of things here about the problem of  diagnosing. People with cognitive impairment but no diagnosis are four times more likely to be managing their own medications.  And if you've seen the medication list of an older adult they can be incredibly long and complex, so managing your meds and managing them well is a really important piece of staying well and healthy. 

People with cognitive impairment and no diagnosis are three times more likely to be managing their own money. And that actually I see as a safety issue because if you've paid any attention to the prevalence of scams lately, that we are all susceptible to, that becomes a real danger in older adulthood for people who are experiencing brain changes and have limited funds and less ability to return to the workforce if their savings get depleted.

Rachel Coady (27:22) 

Mm-hmm.

Shoshawna Rainwater (27:23) 

They're also two times more likely to be driving. We touched a little bit on driving and safety, and we'll do an episode on driving cessation. People who have dementia will need to stop driving, and most of them need to stop driving by the end of early stage, at the latest, because driving is such a cognitive toll on the brain. It's asking the brain to do so many different things at the same time. 

And then the other piece is people with cognitive impairment but no diagnosis are two times more likely to be attending their medical visits on their own. And that's a challenge because the valuable exchange of information that's coming from medical providers is likely not being able to be absorbed and synthesized and acted upon. And a geriatrician that I have heard speak often, Dr. Marion Hodges, says, you know, “if a person doesn't have the diagnosis, it's not gonna be in the medical chart. And medical teams then can't plan for it.” They can't plan for all of the idiosyncrasies that come with caring for a person who has brain changes.  And having a diagnosis of dementia affects nearly every single treatment decision that a medical team would be thinking through. 

Rachel Coady (28:53) 

We've talked about some reasons, some moments to be concerned. What happens when we hear concern from other people? I think these are really great points on how the diagnosis can be helpful and not getting it could be hurtful. But when it comes to getting the diagnosis, how do we actually set that up? Walk us through how to approach getting to that conversation and doing that analysis.

Shoshawna Rainwater (29:18) 

Yeah, it's one thing to hear me make this case for why it's important, right? But if there's no support or guidance or help me operationalize this, how do I actually get my loved one assessed? It's a really important part, yeah.

Rachel Coady (29:32) 

Yeah, I didn't know where to go. 

Shoshawna Rainwater (29:34) 

Yeah, yeah, and one of the things that we can pretty much count on is that initiative is not gonna be taken on or initiated by our person with brain changes. Because the brain is itself likely changing and impacting insight, but also this additional layer of self-stigma and fear around this diagnosis; it does happen sometimes where people early on in the disease experience notice changes in themselves and do proactively say to their doctor, “I think something's changing”  But most physicians will tell you that's not usually how it comes down. It usually it comes down to some caring individual in the support system reaching out and saying, “uh-oh. Something's not quite right.” 

It's unlikely that your person with brain changes is going to ask about this, initiate making an appointment, and they're likely not gonna be able, if you tell them, “something's up and you need to talk to your doctor about it,” in my experience, that's not likely to happen. A good starting point is to approach primary care.

Rachel Coady (30:52) 

So is that like reach out to your loved one's doctor, your loved one's primary provider?

Shoshawna Rainwater (30:52) 

They're really responsible for holding the primary pieces of a person's health. These are people who are in charge essentially of the most important aspects of your loved one's medical issues. And in an ideal world, your person's primary care provider would be doing a regular cognitive screening; just as they would be doing like a blood test every year, they would be doing blood pressure checks, those kinds of things. We should be doing cursory routine cognitive screenings.  That doesn't always happen. But one of the ways it's supposed to happen is through a person's annual Medicare wellness visit.

So at least once a year, primary care is to do a quick and cursory screening of a person's cognition, usually by a very quick two-minute tool called the Mini-Cog. So M-I-N-I dash C-O-G, Mini-Cog. And it's a very basic two-item screening that essentially asks people to recall three different items and providing a space of I think several minutes in between when they're being told to remember and then when they're being asked to recall and then to draw a clock, interestingly, and to draw the hands on a clock and they will give you a specific time to draw. It's not a diagnostic tool. So if someone fails it, it doesn't mean that we know they have dementia, but it's a flag and a heads up to the clinic or the primary care team that further workup is indicated. 

Rachel Coady (32:44) 

Shoshana, I wanna pause for one moment, because I think this might be important to the listener. By the time I was reaching out to my mom's primary caregiver around asking for this test and doing this work, I had access to do that; I was named on her medical accounts. For the listener, most of us don't go to our parents' doctors appointments. So how do you connect with these people if you're from the outside?

Shoshawna Rainwater (33:09) 

Okay, that is a great question. And you're right, most of us in our parents' lives, there's a period of time where your loved one is probably going, has been going to medical appointments on their own. And there haven't been reasons to have a second person there.  For most of the relationship with their primary care provider, we're going by ourselves. And when a person we care about is starting to have brain changes, we are kind of thrust into this role of having to provide information that we know our loved one with brain changes is likely not proactively giving to their medical team.

And how do we do that? How do we approach the office of primary care?  Most primary care offices have asked a patient, “are there other people who we can share medical information with?” And that's the piece that most primary care offices want to know.  “Do we have the authorization from the patient to actually tell you anything, share information with you?” And there are some rules that prevent medical teams from sharing information about patients with people that the patient doesn't want them sharing information with. And that can feel like it puts us as family members in a bind.

But here's the important caveat to this.  Guidelines don’t prevent a family member or a friend or a support system person from providing information to a doctor's office or a primary care office to say, “I have some concerns. Here's what I'm seeing.” So there’s nothing that prevents you as the advocate from providing information. Ideally, that would be through some sort of written summary that you could email or send to the doctor's office or the primary care office.  And reassure the person on the other end of the phone, you understand that the rules prevent them from sharing information with you. You have some information you'd like to share and that you're requesting a Mini-Cog or whatever other cognitive testing they are able to do when your person comes back into the office.

There's another important tool available to caregivers that we'll put on our website, something called an AD8–capital A, capital D, and then eight, the number eight–Dementia Screening Interview.  And it’s an eight item tool that is completed by the person who is worried about the person experiencing brain changes that gives information about what you're seeing. You can download that and fill it out and provide that to your loved one's medical team. And also you can tell them, “I recognize these primary care visits can be short and there's a lot for the doctor to be covering and you're wanting to be a partner to them and part of the team so that you can help them care for your loved one the best way possible. 

Rachel Coady (36:30 ) 

And then after you reach out to kind of that primary care doctor or clinic office and request a Mini-Cog, when does something like Neuro come into the journey of getting a diagnosis?

Shoshawna Rainwater (36:43) 

Yeah, I would say if the Mini-Cog comes back as “normal” and you still have worries, you're still seeing a lot of things, it's reasonable to ask for a referral to Neurology. I would say especially if the Mini-Cog is normal, because maybe what's going on for them is not a dementia, but something else, right, that could be reversible.

And so again, that argument or rationale around everybody deserves a good workup. Yeah. 

If the Mini-Cog is done and comes back, not perfect, then that is also an indication that a person might want to seek further workup through Neurology.  And if the worries that we're having is about how a person is thinking and processing information, they deserve a good workup through the expert who knows and understands that brain, that organ best. 

And there's a statistic that 50% of what we call abnormal Mini-Cogs, 50% of them never receive follow-up.  Imagine 50% of any other abnormal screening never having follow-up. Can you imagine if 50% of say mammograms never have follow-up or any other kind of medical screening? And I think that again has to do with this false sense that there's nothing that can be done. And also stigma so why would we work it up?

Rachel Coady (38:28) 

Going to this appointment, getting a Mini-Cog or further tests with a neurologist definitely is a scary feeling. I think it's one a lot of people might refuse to want to go to. So how do we navigate that refusal.

Shoshawna Rainwater (38:44) 

Many people are used to going and seeing their primary care provider. And so this is where the routine Mini-Cog, at least once per year, can be really helpful because that's something that they should be used to doing anyway.  

If they are refusing to go, I think the first step is to try to have a compassionate knee-to-knee conversation with your loved one to really hear and hold, not fix or not argue your case, but just hear and hold with them what it is that's getting in the way of wanting to have a workup and being able to align with them around how hard and how scary that might feel.  You can lean into that perspective I've offered about telling them they deserve a good workup. And “what if it is something that we can reverse? We would want to know that. And if we find out it isn't that, I want to reassure you, mom, dad, spouse, that I'm right here to walk alongside you.” And that's one of the things I think you did so well in your journey with your mom, Rachel. 

Rachel Coady (39:58) 

We tried to be in it together. I learned a lot about this language from you, but this sense of like, you know, “there's things we don't know and we want to try to figure out and whatever we hear today, we'll figure it out. We'll see what options we have, we can talk about it. We can make choices.” She's still obviously in the early stages had the ability to make those choices. And so I really helped her try to come out as like, “this is a way to empower yourself with information and for us to know more.” I just really tried to kind of physically and emotionally reassure her that I would be there, that we'd go to the appointments, that we could do this. I just want to it takes courage and strength, to do this and to receive the news when it's not everything's okay. I think the reason we're doing an episode on this is it is a challenging part, is a milestone in this disease and it is still the right thing to do. You still can gain a lot from having this knowledge and discover what options you have. 

And let’s talk a little bit about what a successful appointment could look like, like how to set yourself and your person with dementia up for success that day.  One of the things that you recommended to us that was really helpful is you let me know that I could actually write a letter to my mom's doctor before the appointment. I actually wrote a letter to the doctor for the day of appointment. And what I said was, “you know, we've shared these concerns with you. We would like you to conduct the Mini-Cog when that was with her primary care and later with the neurologist, we want you to conduct the MOCA exam.

In my mom's case and the person that she was, I knew that it would not better her life to sit in the discussion of what they found. She was not in a place where that was going to be helpful to her. And so my request in the letter that I handed to the nurse and the doctor before we went into the office is, “please complete your tests and please allow you and I to connect afterwards without my mom.” Again, I had that authority and permission to discuss what you found so that we as a family can look into the best options for her. But it really helped us keep that day and that exam, which my mom was stressed about, very simple. And it really gave the doctor permission to kind of conduct the test and be human with her, but then not feel this pressure of breaking it down to try to help her understand what they found. 

Shoshana Rainwater (42:23)

Rachel, you're pointing to something really important here, which is the way that the diagnosis of dementia gets delivered matters and can have a lasting impact on not just the person with brain changes who hears the news, but also on the family or other people in the room. I'm uncertain how much training Neurology receives in the art of delivering serious illness news. It's something in palliative care–which is where I have a lot of my training roots–it's something we take very seriously– that the way information is conveyed matters.

Without meaning to, news in a neurology appointment can be broken with surprising carelessness or disregard for the enormity of the news being shared and the significant impact on how it might land on a person experiencing brain changes or their family. And because, as you heard me say earlier, it's the number one feared diagnosis that most people have, in my opinion then, it deserves to be news that gets delivered skillfully. We of course don't want to blame the messenger, but we are needing the messenger to deliver the information in a way that minimizes lasting harmful impact. And I love the quote, I'm not going to get this exactly right, but I love the quote that “before we cut with the scalpel of truth, we must first bathe it in the anesthesia of compassion.”  And what I hope for in these conversations with neurology or with primary care, whoever is delivering the difficult news, that it gets delivered in a way that is sensitive and appropriate for how the patient and family would like the news to be delivered. 

So I would love if clinicians could ask the person their preference for how they receive the information or the findings from the neurological workup. And that could look something like, “gosh, you know, some people would like to know everything that I have to share about what we found today.” And some people say, ‘you know, go ahead and just share with my family what you've learned. They're the people who know me best and I trust them to share what's essential with me.’”  It would be helpful, in my opinion, if that's how Neurology could approach these conversations and asking permission and preference for how the information gets delivered. And using the family's guidance around how best to deliver the information.  Families certainly know patients better than a clinician who was just meeting them for the first time. And remember, the information that's getting shared by Neurology in these appointments is not so much for the person experiencing brain changes, but for the people who are caring for them.

 Rachel Coady  45:47

I thought the letter writing and request to the doctor was very helpful. And I actually used that tool throughout her disease journey with other doctors and care practitioners of saying, “here's what I want from this appointment. Here's the way I'd like you to handle any information you need to share with my mom or with me as her power of attorney.” It really helped keep the day as focused and simple as possible for her. 

And then the other thing that we did afterwards, because it's a high stress appointment to know that you're having your memory tested, or you're going to a neurologist who potentially is going to tell you something's changing, we always followed it up with something she enjoyed doing. So it's like, we're going to do this appointment, kind of like minimize its significance. And then afterwards, we're going out to lunch or “let's go get fresh flowers for the house” or something that she enjoyed. And especially later in the experience when her memory was changing, that was a really great way to kind of navigate through the rough and have a core experience that made her really happy follow that. 

Shoshawna Rainwater (46:49) 

Yeah, I love that Rachel, that approach of pairing an unpleasant event with pleasure. And I did something similar with my mom following our Neurology appointment. 

If your person is seen and evaluated by Neurology, just a couple of things I think are helpful to be aware of. First, the wait to see Neurology has potential to be several months long, at least as things are right now in current health systems; this is a story I hear from people pretty consistently, regardless of where they live in the US. So, knowing that it could be a while before a person can get a Neurology appointment and receive a diagnosis of the particular subtype. I have heard some systems running about a year out. So, it's something that is worth tackling now versus waiting. 

And then the other thing to know, many neurologists are very good at diagnosing and staging the subtype. Their strengths are not always in getting people connected to resources, which is part of why we wanted to start this podcast, is that there does seem to be, in many cases, a lack of connecting people to resources directly from the neurology experience.  Just know if you don't come out of that appointment with a lot of resources or tools, there are resources or tools out there and we'll help you get connected to them.

Rachel Coady (48:27) 

Yeah.  Hope Floats is here for you.  Once we have that diagnosis, depending on what the outcome is, there's probably further things to consider, like driving, as we've mentioned, thinking about what kind of support or accommodation that this person might need moving forward, thinking about, you know, paperwork for helping be a decision maker, or home safety considerations that you want to make. We'll talk more about those in future episodes, but getting this diagnosis opens up the ability to really analyze and look at where you are right now and what you need based on how they do with the diagnosis conversation. 

I think one thing that definitely happened for our family once we started to see some changes happening was that we needed to talk about this and it is a tough conversation. I think when you're the care partner, you feel the responsibility to share what you've done, what you've heard–to the extent that you want to share it. But it's hard news for family members and friends and loved ones around this person to receive. And so, again, I want to acknowledge that it's really normal for people to feel scared, angry, or afraid when they hear about diagnosis news for someone that they love. And, I think it’s really important when we have these conversations, that everyone consider communication with care.  Conversations around this topic, again, because it doesn't have a cure, can be really emotionally charged. 

Shoshawna Rainwater (50:02) 

Mm-hmm.

Rachel Coady (50:03) 

It's a stressful and scary time often for the care partner to be sharing this, to kind of be facing this reality. And we are all human, we're all messy in this disease; we are all doing our best. And when we go into the conversations to share with other family members or friends what's happening, it's important that we also invite some grace.

Shoshawna Rainwater (50:27) 

Mm-hmm.

Rachel Coady (50:27) 

And just admit that this is going to be hard. You can name how you're feeling when you start that conversation. “Hey, I'm actually feeling pretty afraid and scared and overwhelmed right now, but I wanted to share this news with you. I admit I'm doing my best. I don't know what a better way is. I'm, you know, trying here.”  Really try to help everyone help hold this experience and know that you're in it together. That really helped in our family was constantly just to constantly share where we were emotionally with this as much as we were like kind of literally in the journey. 

And two tools I think that you've shared, one was to name the conversation that you want to have upfront, almost like a work meeting where you kind of say, in my case, it was to my sibling, like, “hey, I need time to connect with you this week about mom. These are the things I want to cover,” like a work agenda.  But it really helped us kind of be in the right headspace, understand what we needed, be clear about the goals of the conversation, and to emotionally prepare to have it. You know, “I need to talk to you about how mom is doing. No, I don't have all the answers. It would be great to have you as a sounding board, or I'd love to talk with you about her latest appointment.  Here's some next steps I'm considering. Here's some help that I could use,” I think is a great one to bring into the conversation. 

Shoshawna Rainwater (51:49) 

Hmm.

Rachel Coady (51:50)

So trying to own how you're feeling, own what you need, own what you're able to share. And again, just know that there is no one right way to do this. Everybody is having a different experience with this disease. It's really normal for our minds to run wild with life-changing news. 

Shoshawna Rainwater (52:10) 

Mm.

Rachel Coady (52:10 )

And from a coaching perspective, I found one of the real keys to navigating this disease as a caretaker for my mom was to just try to stay present. And that is easier said than done for sure, but we'll feel our beautiful minds starting to run wild with potentials, normally, the fear-based ones first. It's a lot of worry and fear. And I just invite you as a care provider to take a few breaths and really ask yourself a couple of questions. The first one is, “what do we know right now?” Because your brain is trying to prepare you for everything ahead that you'll need to know as a caregiver and all the implications of what could happen. But just stay in the present. “What do you know right now?” 

And the second question is, “what don't we know?” This journey is different for everyone. The way my loved one's gonna go through it is gonna be different than other people's. So there's a lot I don't know yet. And then the third one is “what could be possible?”  And I ask that third question through a positive light. What are the potentials I'm not thinking about? What could be available to us that I'm not instantly going to because I’m based in fear and scarcity? We know everyone's going to go through this differently, but by staying present in the moment, which is where we are in the journey, what we know at this point, it leaves room for more to unfold. And it allows us to appreciate what we have right now. Remember, we only have to take this one day at a time.  It's a better way to use our energy resource to stay present in this.

Shoshawna Rainwater (53:44) 

Yeah.

Rachel Coady (53:44) 

And then finally, we talked about this in Episode 3, this diagnosis day is a great time to look back at that self-care list  and really try to do something for yourself as the care provider this week. Do something that nurtures and takes care of you. Small actions of taking care of you can make a really big difference.  So be sure to look out for you, the caretaker during this time as well.

Shoshawna Rainwater (54:13) 

Beautiful. I love those suggestions. And I think the Diagnosis Day is a significant milestone. It's a day and a period of time where you're likely going to be carrying a lot. There's a lot of grief that can come with receiving this diagnosis. And I like this idea of managing what we can manage, right? And asking ourselves, what do we know? What don't we know? And what's possible? 

A question for our listenership here, our community, we're curious, some of you who are listening to this episode may have actually already gone through this experience of your loved one or your person receiving a dementia diagnosis. And curious what are some of the things that you would want others to know?  What went well about the experience? and what did not go well? What do have to share that you would want other people to be aware of as we work to support one another on this journey?

Rachel Coady (55:20) 

Please reach out.  You can go to HopeFloatspodcast.com and there's a Contact Us section. We'd love to hear your stories and experiences and be able to present any information and support we can to the community anonymously, but it's always great when we can learn and support each other. 

Today, we talked a lot about the experience of getting the official diagnosis, ways to prepare for it,  and tools that can help support you in this part of the caregiving experience. In our next episode, we're going to discuss some strategies, resources, and tools for communicating with people in dementia. And this is really one of the key ways to navigate any of the subtypes of this disease. So thanks for being here. Thanks for listening.

Shoshawna Rainwater (56:05)

Thanks everyone.

Rachel Coady (56:15) 

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 (56:30) 

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 (56:45) 

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