“Now what?-” Things to Prioritize After Getting the Diagnosis

Summary

In this episode of Hope Floats, hosts Rachel Coady and Shoshawna Rainwater discuss the critical steps to take after receiving a dementia diagnosis. They emphasize the importance of understanding the type and stage of dementia, planning for future decision-making, and the significance of advanced directives. The conversation also covers how to communicate the diagnosis to the care team and the necessity of establishing a support system for caregivers. The hosts aim to provide listeners with actionable insights to navigate the complexities of dementia care effectively.

Takeaways

• Understanding the type and stage of dementia is crucial.
• Planning for dementia is as important as any other diagnosis.
• Decisional capacity can fluctuate and is not lost immediately after diagnosis.
• Most people with dementia still desire to make decisions.
• Advanced directives should be completed while the person still has capacity.
• Communication with the care team is essential after a diagnosis.
• Support systems for caregivers are vital for managing stress.
• It's important to include the person with dementia in discussions when appropriate.
• Legal and financial planning should be prioritized early on.
• Proactive steps can lead to a better caregiving journey.

Transcript

Rachel Coady (00:06)

Welcome to Hope Floats, a podcast for people navigating the challenges of caring for a person with dementia. I'm Rachel Coady.

Shoshawna Rainwater (00:13)

And I'm Shoshawna Rainwater. On today's episode, we're going to talk about what to prioritize after you've received the dementia diagnosis, how to begin planning, some ways to set yourself up for a more successful journey, and ways to support your loved one who has received the diagnosis. Let's get started.

Rachel Coady (00:39)

Hey, Shoshawna.

Shoshawna Rainwater (00:41)

Hey Rachel.

Rachel Coady (00:42)

So, on our fourth episode, we talked a lot about the value of seeking a diagnosis and we really encouraged our listeners to work with their loved ones' care team to kind of get that diagnosis to go through the event. And today it feels really important to unpack what's next after you have that news. We both know it's not all over and doom and gloom, and we talk a lot about how dementia is a long journey. So, let's help our listeners identify the next steps after that diagnosis moment.

Shoshawna Rainwater (01:13)

Yeah.  We did make a really good case, I thought, in Episode 4 as to why it was worth people's valuable time and energy to go through the process of obtaining a diagnosis for the person that we're concerned about.  And so, if you're listening to this and you have gone through that process, I just want to acknowledge that you are likely holding and processing a lot.

The goal of enduring that experience was really to come out of it with two things, understanding the type of dementia that your loved one has or your person has; and if you'll remember back to our earlier episodes, we've talked about the fact that there are about a hundred different types of dementia. So we were hoping in the experience of getting a diagnosis that it would be better whittle down which type we're talking about. And also the second most important thing or as equally as important is to understand what stage your person has been diagnosed in. So the type and what stage. 

And knowing the stage, in particular, really helps us know what to do next. And also acknowledging that many people, many families and support team members really feel pretty overwhelmed and under-supported and uncertain about what to do next. And part of that can be because oftentimes we emerge from the medical appointments–whether the diagnosis was made by primary care or by neurology–with the type and stage information, but not a lot of clear guidance about what to do next. And in my clinical social work practice, I hear a lot of families and people say, when I asked the question, “what did the teams help you understand about what lies ahead?” I would say the majority of the time, people say “nothing. I didn't get information about what to do next,” sort of what next practical steps. 

So I would say planning for dementia is every bit as important, if not more so, than any other diagnosis that you might receive. If there was a diagnosis of a heart disease or cancer, planning ahead is important. And in dementia, it's really important because one of the most foreseeable losses when you have a dementia diagnosis is the eventual loss of decisional capacity–meaning that over time, the person with dementia will require someone else to make decisions on their behalf.  And those decisions range from small, kind of micro everyday decisions to other decisions about life prolonging interventions and major medical decisions. So in my mind, it really becomes a time-sensitive issue if what we know about dementia is that over time, decision making abilities get lost. Then it really is important to begin the planning for what's next as soon as possible.

Some of the most important things to prioritize once you have the diagnosis are the legal, financial and health care documents that will help ensure the person’s healthcare and financial decisions are carried out.  So, broadly speaking, these documents are divided into two groups:.  One are the documents that communicate the healthcare wishes of someone who may no longer be able to make healthcare decisions for themself. The second group are documents that communicate the financial management and estate plan wishes of a person who may no longer be able to make financial decisions for themselves .

These are things like wills, a living trust, an advance directive and an estate plan.  We’ve put several resources on our website that provide you with more detailed information about what documents are typically indicated in what scenarios and how to go about completing those forms.

Rachel Coady (05:31)

We talk a lot about this in this podcast, but as much as we can get upstream in this disease and not wait until it's, you know, we've passed a line and things are less available to us or our person with dementia, the better the journey can be. And so really understanding where you are on your journey and then what's available and what kinds of decisions need to be made can be really, really helpful.

Shoshawna Rainwater (05:56)

So what do we mean by “decisional capacity”? Those are two words that may actually not really make a lot of sense if you don't sort of live in the healthcare world. Decisional capacity is the ability to express and understand a choice that's being presented to you, comprehend the information related to the choice and understand the consequences of the decision related to the choice being given. And the other important element is that the decision is consistent over time–whether that's minutes or hours or days or weeks; but that you come up with a consistent decision over time.

A diagnosis of dementia does not automatically mean that a person does not have decision-making abilities. In fact, it rarely does. 

Rachel Coady (06:46)

Yeah, that's…

Shoshawna Rainwater (06:46)

And that's one of the challenges, right?

Rachel Coady (06:49)

Yeah, I think that's a really important point is like, there's still things available. 

Shoshawna Rainwater (06:54)

Yeah.

Rachel Coady (06:54)

And our job as caregivers and partners is to understand what those things are and what those things are not.

Shoshawna Rainwater (06:59)

That's right. And it's not-  a diagnosis of dementia does not strip a person of decision-making abilities. And decision-making abilities can fluctuate over time and they can be situation dependent. So people can retain certain abilities but have lost other abilities. And that's part of what makes this so uniquely difficult. When we talk about decision-making as a loss in dementia, we're rarely ever, until the late stages of it, we're rarely talking about all or nothing decision making. 

I want to just make a quick note that we're talking about capacity today, but we're not talking about competency. Competency is a legal determination that gets made by courts, typically assigned by a judge. That's not what we're talking about today. That's outside the scope of what I'm comfortable talking about as a clinical social worker.  I would never, and most people, unless you're a person in the court system or a judge, you would not be assigning a determination of competency. So I think it's important,   though, just for our listeners to know the difference between capacity, which is what I described above about decision-making, ability to express and understand choices, comprehend information, and the difference between competency, which is a legal determination.

Rachel Coady (08:26)

Is there a way to identify what decisions our loved one is or is not capable of making and what they are?  I know our person with dementia will still have a lot of ability, potentially,  after the diagnosis around decisions and wouldn't want that all taken away. So how do we help caregivers navigate kind of how or when to take decisions?

Shoshawna Rainwater (08:51)

Yeah, it's so true. Most people don't want decisions taken away from them, right? And people with dementia gradually lose the ability to make decisions. They don't lose the desire to make decisions.

Rachel Coady (09:04)

Mm, it's very true.

Shoshawna Rainwater (09:07)

And most of us as humans, particularly if you have been raised in American culture, we are hardwired to really value our agency and autonomy.

Rachel Coady (09:17)

Yeah, it's where a huge part of our identity and like, selfhood comes from. And I think it's a big part of the grief and the loss that our loved ones go through when these skills that they've always had start to fail them…

Shoshawna Rainwater (09:31)

That's right.

Rachel Coady (09:31)

… and other people start to take over. 

Shoshawna Rainwater (09:33)

Yes, incredibly difficult. It's part of what makes this diagnosis so uniquely hard. Jason Karlawish, who has written the book, The Problem of Alzheimer's, calls dementia “a disease of autonomy.” This is why it's so uniquely hard. It's a loss of agency and ability to make your own decisions, but you don't ever, I've yet to meet a person with dementia who's ever lost the desire to remain in control

Rachel Coady (09:59)

Mm-hmm. Mm-hmm.

Shoshawna Rainwater  (10:00)

That part doesn't go away.  So your question about are there ways to identify what decisions a person is capable of or not capable of? This is where knowing the stage of your person's dementia is really valuable. People who've been diagnosed early enough in the disease trajectory–so they have gotten a diagnosis of either mild cognitive impairment, also known as MCI, which is a slight yet measurable decline in cognitive function o  r if they've been diagnosed with what's often referred to as either early or mild dementia–they are likely still capable of completing all the necessary health and financial documents that should be completed. 

If your person has been diagnosed with either mild cognitive impairment or early stage dementia, that's lucky. That's good news for you because the losses that happen in dementia, of course, happen over time. And if we've caught things or we have a diagnosis early enough in the disease trajectory, we stand a better chance of having our person with cognitive impairment be able to complete the documents needed to be completed. And typically what we call “first-person planning,” meaning the planning is done largely by the person with the diagnosis of dementia, if that's going to happen, it happens typically here in this stage.

Rachel Coady (11:37)

Hmm. 

Shoshawna Rainwater (11:38)

But we should also know that there's likely already deficits happening in the areas of attention, planning, decision-making, and recall, even in people who are in this early stage. There's an annual Hastings Center Report that gets put out that talks a lot about the current state of challenges in the dementia landscape. And the current 2024 report has a really important article by a physician named Barrett Gaster. And he says, “dementia is unique among age-associated conditions in having a long trajectory in which people lose capacity early in the course of the disease. And neuroscience research shows that early on, there's a physiological loss of the brain's ability to imagine future scenarios.” 

And that matters because when we're doing things like healthcare advanced directives, we're asking people to imagine future health scenarios for themselves and weigh in on and tell us what they would or wouldn't want. So all that to say, it is really helpful if your person has been diagnosed earlier than if it was given as a moderate or mid-stage. And yet you've heard me say in previous episodes that many people who receive a diagnosis of dementia, that diagnosis is not being made until someone is in mid-stage.

Rachel Coady (13:12)

Hmm.

Shoshawna Rainwater (13:13)

And so if your person's diagnosis did yield a stage as either mid or moderate, you'll hear those two things used interchangeably. But if your person was diagnosed with that in that stage, there are likely concerns already at play as to whether or not they have what's called that decision-making capacity. And so this becomes a bit of a challenge. 

And one of the things that you can do if you're concerned about whether or not your person still has decision-making capacity is to ask the clinician who made the diagnosis if they believe that the person who received the diagnosis has–and I'm gonna give you some words that you can use here–ask them if they believe the person has “capacity for basic medical decision making and planning for their financial future.”

And you can say, “we, as a support system for this person, we care about, we want to prioritize completing the necessary paperwork and documents to account for future loss of decision-making. We want to get things set up so that we can more seamlessly step in and make decisions when we know we will have to.”  That's one of the most foreseeable things that's coming down the pike with this diagnosis. And you can ask, “do you, as a clinician, do you believe my person, this person with this diagnosis has the capacity to do so right now?” if you're on the fence and you're not quite sure.

If the diagnosis has come back or has been given and staged as late dementia or severe dementia, the window of completing any of those first person documents has likely closed and probably closed a while ago. And that's hard news for people who are sitting with a situation or have a situation on their hands where their person was not diagnosed until it was too late for them to complete this first-person paperwork. That's probably going to have to be its own episode. But what I would say as sort of general guidance is that if that is your situation, you really need to seek some legal support and guidance, probably through elder law attorneys– attorneys who are really used to working in this area. 

And then also know that most states, if not all states have a default statute that kicks in when there is an absence of pre-assigned proxy decision makers.  So, if we've missed that window of opportunity for first-person care planning, if a person did not complete their own advance directive saying, “here are the things that I would want for myself, and here are the people that I trust to carry out those decisions,” there are next of kin statutes that then get implemented. And it has its own sort of decision-making tree that clinicians are required to go by. Usually in most cases that means if there's a spouse that becomes the default decision maker and then it moves to next of kin. 

For people who are still able to make decisions about their healthcare future, the best way to go about documenting your wishes–this is for the person with the dementia diagnosis–is for them to fill out a healthcare advance directive while they still have the capacity to do so. And advance directives really serve two primary purposes. The first is, and maybe most importantly, is to assign a person and hopefully a backup or two about who would step in and make decisions, not if, but when a person with a dementia diagnosis is no longer able to do so. And then the other really important type of guidance that an advanced directive offers is to give first person guidance on what you would want for yourself in the future in certain medical situations. So how much medical care and interventions would you want? 

We'll do a future episode on advanced directives because there's way more to know than the broad strokes that we're giving today. But what I'm naming is if your person is still capable of doing so, prioritizing completion of a healthcare advanced directive is important. 

And then the other thing to know is that the document for healthcare concerns and issues is almost always a separate form than the financial estate planning and legal decisions that need to be made; and those typically require a different and separate form.  And those are things, those legal issues and concerns are things to talk about with a competent financial planner or  e state planner or elder law attorney. And just know that those are different forms than the advance directive or health care related forms.

Rachel Coady (18:36)

Yeah, it's amazing to think of the different things that I thought we had set up far, far before my mom had cognitive changes. And as we got closer towards her dementia and then her decline, we really had to sit down and be really aware of what we had and we didn't have. And I just was not aware of these different levels. And for what it's worth, listener, all of us can complete these forms for ourselves before dementia is on the horizon for your own health. So, it's a good thing to learn about for ourselves, but also for our loved one and just make sure that you really understand the landscape of what is covered and any additional paperwork that you might need to fill out to be prepared.

Shoshawna Rainwater (19:18)

Yeah, it's a lot more complex than I think most of us understand. There's a really good resource that we will put on our website that I think will be helpful in getting people started on understanding the different legal, financial, and healthcare, all those differences and those different forms that will need to be completed.

Rachel Coady (19:38)

Yeah, on our site, you'll find a guide that actually breaks down depending on what diagnosis you received. What are some of the next steps that we're talking about in this episode that you should look into at a high level? So you can find that at HopeFloatsPodcast.com. There's more information there under the Resources tab. 

MUSIC TRANSITION

Rachel Coady (19:53)

Is this a good time to also make sure that our loved one’s larger care team, you know, financial teams we've talked about, just people in their lives all know that there's been a diagnosis so that they can acknowledge and have that context moving forward? I think in our family, we did an audit and just realized like all these people who are interacting with my mom probably would benefit from knowing.  When and how should we let that be known to the team?

Shoshawna Rainwater (20:20)

I think it's something that does need to be shared and I don't see any value in waiting any longer. If you have the valuable information of type and stage, it's not too soon. It's part of the reason that I want people to go through the efforts to obtain that valuable information is so that you can say, definitively, “my person has received a diagnosis of say early stage Alzheimer's and we know as their support team that one of the most foreseeable needs that's coming is the fact that they will need other people to make decisions for them. We're not necessarily saying that's the case right now, but we know that that is what's coming and we want to partner with you–medical team, financial team–to continue to support this person for as long as possible in their ability to make decisions, but we want them to be able to make them safely and soundly. And we know that will change over time.” 

And you can ask specifically of them “from your perspective, what needs to be done to ease the way of not just the person with dementia, but ourselves,  too, as the people who are gonna be stepping in and making needed decisions. What do we need to do in order to have things set up so that we can seamlessly advocate on their behalf?”

Rachel Coady (21:56)

And I just want to add, we're talking about financial teams and doctors teams. I needed that for our cable company. So as soon as like tech stuff became confusing, I needed to manage the cell phone bills and the cable bills and just simplify that process. We knew the dementia journey was coming. Things were changing for her. And yet every time I talked to a customer service person, they were like, “Is your mom there? Can we talk to her?” And that's the service industry. We're all working with different people all the time, but having a really clear narrative: “I'm the daughter, this is the reason I'm talking to you.” They might still need verbal verification, but just preparing for all the things where you might be able to prevent confusion and help make decisions on their behalf, is a really helpful thing to do when you know where you are and what stage you're in.

Shoshawna Rainwater (22:47)

That's a great point. And you know, it just occurred to me, the other arena that gets very difficult to navigate is the insurance landscape. 

Rachel Coady (22:57)

Mmm.

Shoshawna Rainwater  (22:58)

If you don't have paperwork that allows you to step in and make decisions on this person's behalf, the place where that gets really challenging is the health insurance landscape.  And I would say too, Rachel, in addition to prioritizing the completion of the healthcare documents and financial documents, again, those being two separate documents in most cases. Another important priority is to help the people in your support system understand the diagnosis and begin prioritizing next steps about what to do. And one of the ways to do this is by calling for a support meeting or a support team family meeting following the diagnosis to end with this valuable information of type and stage to help talk about the experience that lies ahead.

Rachel Coady (23:55)

Shoshana, I just want acknowledge that we are often talking from our own experience and in our journeys  we had families and siblings and people that were involved in the care of our loved ones, that are involved in the care of our loved ones. We know not all listeners have that. We know that not all of our listeners are even family members, or next of kin. And we would welcome hearing more about that experience in the journey of supporting someone when you're not a family member, or they don't have a family member.

Please reach out to us on the podcast website HopeFloatsPodcast.com and let us know more about how we can help share information for people who aren't caregivers within that family circle. But for today, we just want to continue to talk from our first-person experience about how we've handled this with our family, and we'll use the language of a family and support team to refer to the greater group that surrounds a person with dementia.

 Shoshawna (24:50)

Yeah, sometimes the team is an N of one.  Thank you for naming that. One of the questions that comes up when people hear this recommendation that we have a support team meeting or family meeting to talk about the diagnosis and what lies ahead is “does the person with the diagnosis attend the meeting, or are we excluding them? Or how do we navigate that?” And like many things in the dementia landscape, my response is “it depends.” It depends on whether the person with dementia is aware of their diagnosis. And I don't generally mean have they been told. What I mean is do they have the ability to have awareness that they carry this diagnosis? 

We've talked probably in almost every episode about the concept of “anosognosia,” which is present often in dementia, meaning that a person does not have the ability to have insight or awareness into their diagnosis. So it doesn't mean they weren't there for the reveal at the appointment. It doesn't mean they haven't been told. What I'm saying is do they carry an awareness or an ability to know that they have brain changes afoot?

If a person isn’t aware that they have cognitive decline or if they become so upset or angry or agitated at the suggestion that their thinking abilities are impaired, it is ok to think about the meeting occurring without their involvement or presence.  If that sounds strange or sneaky, I get it.  We can always start from the position of inclusion, right?  That’s our default.  We want to operate from a position of “nothing about them without them.”  But in my clinical experience, this framework of nothing-about-them-without-them gets looser and less rigid when we are talking about a dementia diagnosis because the condition of dementia usually changes a person’s ability to understand they are experiencing losses in cognition.  If having them at a meeting is going to make them feel worse or upset or agitated, it is ok to think about holding a meeting where they are not present and having to endure hearing those things.

Rachel Coady (27:18)

Hmm. 

Shoshawna Rainwater  (27:21)

And if you want to try to be inclusive and invite them to participate or you feel it's really important for them to participate and they decline or they get frustrated and angry with you and say, you know, “I'm not doing that. There's nothing wrong with me” or “like hell we're going to meet,” I would also say that doesn't mean the meeting can't occur.  And the reason I say that is one of the unique things about the dementia experience is that it creates two patients early on in the disease trajectory; it doesn't just impact the person with dementia. It impacts everyone in the family system, but primarily the frontline primary caregiver. And the frontline primary caregiver's needs matter. And having support and an opportunity to talk about hopes, goals, worries, without worrying about upsetting the person with dementia is a perfectly acceptable reason to meet.

Rachel Coady (28:23)

Yeah. And maybe there's a version of two meetings. 

Shoshawna Rainwater (28:25)

Yeah.

Rachel Coady (28:26)

You know, one that wants to include the person with dementia and have them feel heard and like they have some autonomy and they're on board and they're supported. And then maybe there's a follow-up that looks like something else for the caregiver and their support team. And you can get to more of the tactics of what needs to happen in a way that wouldn't upset the person who just can't follow and track with what needs to happen in dementia.

Shoshawna Rainwater (28:52 )

Yeah, that's a great point that there could be a hybrid as well, right? You can have an opportunity to have a supportive meeting with a person with dementia and say, you know, “in the context of what we've learned from the doctors about the changes happening in your brain, let's talk about how to help you live well with this diagnosis. That's a, I think a fairly supportive way to approach trying to gather their perspective about what matters to them and to express and convey support.

Rachel Coady (29:25)

Yeah.  Another thing that's available on the website is some suggested communication tactics to reach out to your team as kind of like an outline or guide for suggestions of how you can start these conversations. We know that it can be hard to bring the team together and that talking about this and the journey forward and how you wanna communicate and connect through this is uncomfortable at times. And so we'll offer some language that you could use that might help you reach out to those on the care team and just get some things in place to start the conversation and guide your plan forward.

Shoshawna Rainwater  (30:05)

Yeah, some scripting, right? 

Rachel Coady (30:06)

Yeah. These are topics and conversations that we don't have to have until we have to have them. And I think a lot of times it's like, how do you bring that up? How do we talk about this stuff as adults that we've never had to talk about before?

Shoshawna Rainwater  (30:19)

Yeah.

Rachel Coady (30:21)

I know we've covered a lot today about the next steps after diagnosis, and it can seem like a lot of work. There's more questions. There's more communication that needs to happen. The reason why we bring this up and why this is an episode for us is we are always looking at Hope Floats for ways to make this journey better. And one of the things we've learned from our own experiences and support groups and reading is that this can be a better journey when we take proactive steps to look out for the needs of ourselves and our loved ones moving forward. 

So as a coach, I always tell people “planning for and preparing for the life you want to live is such a great way to welcome it.” And I think if we can do some of these proactive steps, have these harder conversations and really have some plan and structure in place to support ourselves, then we're free to actually enjoy what's still available to us and our relationship with our loved one. We can sit back and just be with them on this journey and hopefully minimize stressors that caregivers often feel as you're navigating the journey of dementia. 

So it is some work up front, but it's all on behalf of trying to create a better journey for you and your loved one going forward.

  Shoshawna Rainwater  (31:39)

On today's episode, we talked about what to do next once we have the diagnosis of dementia. We talked about the value of knowing the type and the stage and how that might guide your next steps.  We talked about prioritizing the financial, legal and health care documents that need to be completed, and you can find more specific information about what documents are needed on our website hopefloatspodcast.com.  

Rachel Coady (32:06)

On our next episode, we're going to discuss a New Year/New You moment for caregivers. We really want to take a moment and celebrate not just all the work that you're doing, but all the ways that you might be able to support yourself in the new year and make a plan for what you might need and want in the year ahead. Thanks for being here.

Shoshawna  Rainwater (32:28)

Thanks everyone.

Rachel Coady (32:36) 

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  (32:51) 

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  (33:0 5) 

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