Better Dementia Caregiving: From Overwhelmed to Empowered

In this episode of Advice From Your Advocates, Attorney Bob Mannor sits down with Amy Shaw, PA-C, author, and founder of Better Dementia, for an important conversation about navigating Alzheimer’s disease, dementia caregiving, and family advocacy.

As a Physician Assistant and dementia educator, Amy brings both clinical expertise and real-world caregiving insight to the discussion. Together, they explore why dementia is so often missed or misdiagnosed, how families can better advocate for loved ones, and what caregivers need to know to improve quality of life while maintaining dignity throughout the dementia journey.

Together, they discuss:

• Early signs and diagnosis of dementia and Alzheimer’s disease
• Why dementia is frequently missed in the medical system
• Communication strategies for dementia caregivers
• Managing difficult family dynamics during caregiving
• Education and support resources for caregivers and families
• End-of-life conversations and patient advocacy
• How caregivers can move from overwhelmed to empowered

With more families impacted by Alzheimer’s and dementia every year, this episode offers practical guidance, emotional support, and expert insight for caregivers, spouses, adult children, elder care professionals, and anyone supporting someone with memory loss.

If you are caring for a loved one with dementia, this conversation will help you feel more informed, prepared, and supported.

Resources Mentioned:
• Better Dementia
• Pattern Before Pathology: Diagnosis Begins at Home
• The Ark of Conversation: How to Guide Goals of Care

For more elder care, dementia caregiving, estate planning, and caregiver advocacy resources, visit Mannor Law Group.

Host: Attorney Bob Mannor, CELA, CDP

Executive Producer: Savannah Meksto, CDP

Asst. Producer: Samantha Noah, Shalene Gaul

Transcript

How The Podcast Gets Promoted

SPEAKER_00 0:00

Things like that and how we'll plan to promote the the podcast. We put one out what every every other week. Yeah. About every other week. And then we also always have some short clips from it to kind of point back to it. We have a pretty good social media following. So that often so sometimes people will just see the two-minute clips, and then we're hoping that people will that'll lead them back to the full, you know, the full podcast.

SPEAKER_02 0:26

That's great.

SPEAKER_00 0:27

Any questions?

SPEAKER_02 0:29

You are an attorney or an estate attorney. Yeah.

SPEAKER_00 0:33

We are, we do estate planning. I we also, so elder law is kind of the area, but a little bit unique in that we are we call ourselves a dementia-focused practice.

SPEAKER_01 0:44

Oh, nice.

SPEAKER_00 0:45

Yeah, which is pretty unique. But what we realized a few years ago was many, probably over 70% of the people that we help with long-term care and advocacy have some form of memory loss. And so we decided, well, that would make sense for us to say that out loud, you know, let people know that that's typically who we help. And so we have like social workers on our staff and things like that.

SPEAKER_02 1:09

Yes, that's amazing.

SPEAKER_00 1:10

Yeah, we really try to provide advocacy in addition to the legal and financial part of it. So that's amazing. Not me personally, but the the we call them care navigators will participate in that kind of advocacy to try to help get you know better care and and respond to the maze of long-term care options and all of that.

SPEAKER_02 1:35

Wow, that's really incredible.

Meet Amy Shaw And Better Dementia

SPEAKER_00 1:37

All right, so let's go ahead and get started, I think. I think we're already recording, so they'll edit that part out. Yeah. I'll set. Welcome back to Advice from Your Advocates. I'm Bob Manner. I'm a nationally board certified elder law attorney in Michigan. And I'm really excited about our guest today. We've got Amy Shaw. She's the founder of Better Dementia. And I'm really excited to talk to Amy. So, Amy, why don't you tell us a little bit about yourself and then we'll get into some of the work that you do.

SPEAKER_02 2:06

Thank you so much, Bob, for inviting me to participate in this conversation. I'm excited to talk about this topic. My name is Amy Shaw. I'm a physician associate by training. And my work has really brought me full circle. When I studied at Emory University as an undergrad, I was fascinated by the brain cognition and how our brain's architecture results in our behavior and emotions and cognition. Before I became a PA, I did a 10-year stint as a wedding photographer. And I always joked that that was really the best preparation for what I do now because my work with families and patients on difficult medical journeys is in some ways similar to the moment of a family's life when a loved one gets married, right? It's a full family affair with different expectations, logistics, finances. It touches everything in our lives. And as a wedding photographer, my job was to help the couple, but their extended family have a positive experience and to have something to remember their day by. And in my work, I became a PA and worked in cardiology for several years and then moved into a field called palliative and hospice care. And out of that, I saw how full-bodied the experience for families is of various chronic and terminal illnesses, and particularly the dementia journey. It is really a caregiver journey from the minute it gets started. And I'm sure you see this in your work with families. Your advocacy is really amazing, the way you embrace families' needs in their journeys. And that is a gap in our medical system that my work seeks to fill.

Why Dementia Diagnosis Gets Missed

SPEAKER_00 3:56

So we'll get into your books in a minute. I'm really, I'm very curious about your medical textbook, but talk to us first about better dementia. So it is actually betterdementia.com is your website. And tell us about how that came about and how people might want to interact with better dementia.

SPEAKER_02 4:15

Yeah, so very early in my work in palliative care, I realized that the medical system often misses a diagnosis of dementia. And I was very fascinated by this. And I realized it's because our brain's job is to keep us successful in the social environment, especially. And so, especially people who have what we call a cognitive reserve of any type, and intelligence is varied, as we know, can really adapt to the social situation. And our model of medicine is built to pair a clinician with a patient. And it assumes that that patient is a reliable reporter on their symptoms and needs and can advocate for themselves. And by definition, dementia disrupts that path from the get-go. And so for many years, families at home are witnessing changes and are often confused because these changes don't show up precisely in the same way in each person, even people with a similar diagnosis. And so many families experience the dementia journey as chaos and a lot of confusion, and they don't have a diagnosis. And as you know, families really have to step in by a certain point and manage important aspects of daily living, driving, medications, finances, et cetera. And without a diagnosis, that can be challenging because, of course, they need, if they're going to take the car away, or if they are going to transition a loved one to a care facility, for instance, they need to have the legal authority to manage finances and make those decisions. And so it can really be a struggle for families without a diagnosis. But even with a diagnosis, and this happened with my own family, my mother has a diagnosis of Alzheimer's disease. We spent two hours with a neurologist across two visits. We focused almost entirely on the diagnosis and talking about the test results and then about the treatment options. And we left that neurology clinic with no training to help us understand what we would be witnessing at home and how to understand the natural progression of this disease. And so very early on, I decided this is really my passion. It sort of brings me full circle to my undergraduate experience, which the study of psychobiology, the architecture, the biology, the chemistry, the function of the brain, which results in our behavior, comes in very handy for understanding what fails across the dementia journey. And so better dementia is the outcome of my work. And it is also the title of the book that I'm currently writing that will be published next year called Better Dementia from Overwhelmed to Empowered. And it will teach caregiver forward framework for understanding this disease. It will help fill in the gap of what families really need to understand what I say, the what, when, why of dementia so that they can master the how of caregiving. One of the things that has struck me over the years is how loving caregivers are. Every caregiver I've ever met, I'm sure you see this in your practice too, is animated by the same loving goal. They want their loved one to have as positive, as loving, and as connected an experience as they can. And that is why I chose the name Better Dementia for my practice and for the framework that I teach. Because when we understand what is happening and why, and where we are in the journey, then we can move from compassion. Understanding really transforms our strategies. When we understand something and the way that I make sense of brain failure, dementia, a lot of people reflect back, oh, this seems so common sense. And in a way it is. And when families start to embrace and really understand it in this sort of logical way, they can really move from a natural position where it just comes naturally. It's not having to memorize a list of don't do this, don't say this. That's hard for people.

Caregiver Love And Family Conflict

SPEAKER_00 8:51

It's just kind of a different mindset. So that was a lot of great information. I want to break down a few different things. So I have three questions about all of that. One is I have a I want to kind of follow up on the diagnosis question, and the second one is on training. But first, I wanted to ask you what you were just referring to about the family and that how loving and intentional the caregivers are. And what I think gets lost sometimes is when we have multiple family members that now this isn't always the case. I understand that sometimes family members are just not involved and they don't want to be involved. But when there is a lot of passion or a lot of energy around the different family members, and sometimes it leads to conflict, if we can kind of go back to that original thing that you said, which is they're coming at it with a loving intention. And just because that they have different perspectives and they've got different information or they got different people in their ear talking to them about what's best for mom or dad or spouse or whatever, that doesn't necessarily, you know, and sometimes it leads to conflict, which is unfortunate because what I'm hearing from you is I think everybody that's involved is often coming to it with a well-loving intention. They just are coming into it without the training, without the education of what options are there. And often it leads to family conflict. So I wanted you to kind of explore that a little bit from that standpoint to say, you know, boy, if we could just kind of reframe that conversation to just assume everybody is well-intentioned, you know, unless there's clarity that they're not, but that people come to it with different perspectives, and it doesn't have to lead to conflict.

SPEAKER_02 10:39

Absolutely. The way I think about it is that our brain's job is to make sense. The brain is the organ of interpretation and navigation and success in the world. And without us knowing it, is always making sense of what we experience. And in the absence of accurate understanding, often the brain makes a loved one or a different family member the bad guy. I hear this a lot within families. Before we work together, our initial consultation, I really listen for the pain points and the misunderstandings. And in my work, I bring all family members together. I work with families across the country. And so we can meet online. And this is great because all of that confusion and conflict that can simmer under the surface or out in explicit public really is unnecessary suffering for families on this journey. And so my work brings everyone together. We put everything out on the table, and I listen for how different family members are making sense of what they're experiencing with their loved one.

SPEAKER_01 11:43

Right.

SPEAKER_02 11:44

And I work to correct that because it is a really heavy emotional burden to think. These are some of the things that I've heard over the years. My loved one is lying to me. They're not telling me the truth. And when I make sense of what is breaking in that person's brain, we can let go of some of that judgment and that sense making and we can shift our understanding to something that is much more compassionate. The way I teach caregivers is that we would not ask someone with a broken arm to carry the groceries in. That's just not something that any of us would do. But in dementia, we don't see the broken arm. We don't see the cast or the splint. The brain is inside the skull and we can't see the way it is breaking on this journey. And so I teach caregivers to move backwards from behavior to brain to understand the underlying structures that are breaking on this journey. And again, even though it feels chaotic in the moment for families, there is an underlying progression of disease that most patients with dementia will follow. They will move through cognitive domain failure in roughly the same order. And when caregivers understand that, this otherwise overly complicated, confusing journey can start to make some sense. And then caregivers can really move from a space of love and connection. I teach communication and support strategies that align with these different areas of cognitive function that are being lost. So that caregivers can honor each of their loved ones' need to feel competent, capable, and in control. That is an underlying fact of life that we all, I mean, even my dog, needs to feel competent, capable, and as though she's in charge, right? And that is something that I honor. Again, when we can align with our loved ones' need for their humanity and dignity to be maintained, this journey can be better for everyone.

Naming The Type Of Dementia

SPEAKER_00 13:58

Yeah. I, you know, I think that's really important what you say. And I also sympathize, you know, when we have especially a married couple that have been married for 50 or 60 years, or parent and child. And, you know, over a lifetime, there's often life and stresses. And, you know, we get used to dad being grumpy or mom being stubborn or vice versa or whatever. But the idea is that so many times I see family members who just look at this as an extension of that. Like it's just getting worse. And they're they're really have a hard time wrapping their head around this isn't an extension of whatever tension occurred, you know, in your past. This is a completely different thing that's happening here. But if you have that framework, that mind framework, that that's that's how you're that that's how you're walking into this, it really makes it very difficult for you to realize, okay, this is like asking someone with a broken arm to carry in the groceries. And so I really like your approach to this. I want to go back to the couple questions that I had. One, as a PA, I'm curious about the diagnosis part of it because clearly I think you've made an excellent point about getting a diagnosis in the first place. And one of the things I see frequently is, and I think this is unfortunate, is sometimes the family, and maybe it's the communication issue, and the doctors think that they're communicating to the family, and the family just doesn't pick up on it. Or I think sometimes the doctors do kind of make it more generic and say, diagnosis of dementia. Well, as we know, dementia is a category of diseases. And so I always think it's very important to try to get a more specific diagnosis. You mentioned that your mom has Alzheimer's. My mom had Alzheimer's also. And it was helpful to know that it was likely Alzheimer's versus vascular versus, you know, any any number of other types of dementia that would help us kind of project the trajectory or really have a better idea of what's likely to come and you know how how the disease will likely progress and what symptoms we often see versus Alzheimer's versus a frontal temporal dementia or things like that. And so uh would you have any thoughts on that as far as doctors being more explicit in their in their diagnosis to not just be to say dementia, but really kind of try to narrow in. And I know that they can't always do predict with full confidence what type of dementia it is, but they often have a pretty good idea. And having the family understand that can help them sometimes understand the symptoms, understand what the likely path of the disease will be.

SPEAKER_02 16:51

Absolutely. In my upcoming book, I dedicate an entire chapter to this called Pattern Before Pathology: Diagnosis Begins at Home. And I teach the patterns that these different types of dementia will progress through so that families at home can start to recognize what their pattern is. The part of the big problem with getting a formal official diagnosis is again the way our medical system is built. It is built primarily to involve the patient with the clinician. And people with dementia, by and large, do not have insight into their decline because of the way the brain starts to degrade on this journey. Our brain does not have a control center that provides feedback about its own failures. This is a critical flaw in the system. And so it shows up as people not remembering or not being able to make sense of their failures in the way that they would have been able to before. And that means that people with dementia, by and large, unless they're very early stage disease, do not believe that they have dementia. And in my practice, I separate the patient visit from the family visit because I learned when I developed the first comprehensive dementia care program in the state of Wyoming under a Medicare, Medicaid, insurance billing policy that required the patient be present for my visits with the family, that that created very uncomfortable situations. I need to have frank conversations with family members about what they are seeing at home. And then I need to be able to teach them very clearly what is happening to their loved ones' brain that is resulting in those failures. If the person experiencing dementia is sitting there listening to all of that frank conversation, it damages their dignity. It really negatively impacts their well-being. And then that can feed back on their relationships. And that often triggers agitation or anger or other, you know, hard emotional states that the family is then left to deal with. Diagnosing dementia like frontemporal, Lewy body, et cetera, really means that we clinicians need to uncover all of the psychiatric symptoms in addition to all the cognitive failures that are occurring on this journey as well. And you're right, there are patterns. And it is important for families to understand, but there are challenges in the actual model of our medical system.

Working With Better Dementia

SPEAKER_00 19:35

That's really interesting that you phrase it that way. And I that I that was very helpful discussion about why it happens that way within the medical model that we have. What's interesting is that that's very similar to the way that lawyers are taught to operate. So we're taught in law school that you can't have anybody else in the room when you're meeting with, you know, the person that you're helping, or what we'd call your client. And so there's a lot of lawyers that even when they're trying to help with, you know, doing planning for someone, and we already know that they have some form of diminished capacity, that they will refuse to allow the family to be part of that conversation. I've heard this over and over and over again, where the family says, yeah, the lawyer wouldn't let us talk to him or her. Right. And and it is that is the training that we receive in law school and the ethics uh training that we, you know, ongoing ethics training. And the reality is, because you know, you hear about attorney client privilege and all these things. The reality is I can't do my job, and you can't do your job if we can't have those conversations with the family. And so it is one of those things that you'll see lawyers that, and I've done a number of ethics presentations to teach continuing legal ed to other lawyers, and sometimes they get a lot of pushback because it's so built in the system of, oh, you can't let others into the consultation that that ruins attorney client privilege. Well, I don't care about attorney client privilege at that point. I care about actually getting, you know, uh helping and getting the results. And so attorney client privilege, in case those that are listening don't know, that would be whether or not I could be forced to testify based on what was said there. And if there's others in the room, I could be. Well, I've never had anybody admit to a crime in these meetings, so it's not really a big deal for me, but that is what we're taught in law school and ongoing. But the reality is it's very similar to what you're saying is with the medical model, is that there is a reluctance to really involve the family. And that kind of leads into my next question. And you've mentioned this earlier about the training family and really kind of helping them wrap their head around all of this. And I think that's where you really excel. So if you could tell us a little bit more about some of the details about how somebody might work with you and how, you know, maybe even just go to your website, they might be. Able to get access to information about really kind of getting the right perspective on this and then training of the interactions with your loved one with dementia.

SPEAKER_02 22:09

Yeah, so my website is betterdementia.com, and I offer currently two services for families. I can work with families privately in consultation, and we can meet online, and I like to include anyone who will interact with that loved one with dementia or help the primary caregiver make decisions for that loved one. Because, as you said earlier, people bring different expectations, different understandings to this journey. And people with varying understandings of dementia can often, without intending to, be unhelpful towards the primary caregiver, right? And so I want to work with families to get everyone on the same page and kindly and gently. But I provide my education and work with families over the months to help them transition their thinking about their loved one into a way that's loving and kind and really aligns with the reality of this disease so that they are not inadvertently triggering conflict with their conversations or the mismatch between the environment and what their person is still able to do. And so I have a core of families that I work with and I'm happy to work with people anywhere. Secondly, I offer my course as a digital version that caregivers can study online. It's specifically made to work with the busy caregiving schedules. No, it's a digital course, and it teaches through about eight hours of education everything that I teach families over the months of working with them. And no lesson part is longer than 20 minutes. So it can fit into busy caregiving schedules. And this course really teaches everything that families need to know to be able to recognize the changes that will happen, to be able to identify what stage they are in. I discuss a four-stage framework and to understand how to do the transitions, how to take the keys and car away, how to move somebody successfully into a care facility, how to bring help into the home so that you don't end up the bad guy. Because if we don't do this right, caregivers can be left with years of accusations by their loved one with dementia, anger, et cetera. And it is amazing how having the tools before you get to those stages or before you get to those transitions can really make a very important and amazing difference for families' journeys.

SPEAKER_00 24:45

That that's fantastic. And so I know that you also have you mentioned that you have a book coming out next year, and I'm really excited to hear about that, that it's Better Dementia from Overwhelmed to Empowered. That sounds like a great book, and that's really directed to families, right? Families with a loved one with dementia. And then I'm really excited to hear about your medical textbook. And so I'm curious about how that came about. So I have that it's the Arc of Conversation, how to guide, how to guide, how to guide for goals of care conversations as a medical textbook. And I'm really excited about this because I do feel like this is something that sometimes the medical staff, this is a gap in their education. And so, about how to talk about these things. I recall having a conversation with my pastor, and his mother had Alzheimer's, and they had to go to the ER. And the ER doctor was basically saying, Oh, your mom's drunk. She hadn't had a drink in 40 years. And and but that was, in other words, that there is just sometimes this misunderstanding or lack of clear tools in the medical industry about how to have this conversation. And there's certainly some amazing doctors that are capable and excellent at having these conversations, but it is something that I am glad to hear that there's a medical textbook. So tell me about that book and how that came about and how it's being used.

Goals Of Care Conversations In Medicine

SPEAKER_02 26:16

So I'm thank you for asking, and I have it here. I'm so excited that you asked about this because you're right, this is a big gap in our training. I recognize this, and this this textbook is the textbook that I needed when I began working in palliative and hospice care. I had transitioned from cardiology where I had worked for three years, and I did not know when I worked in cardiology at the time that heart disease was the number one cause of death for humans on the planet. I did not know about a thing we call hospice criteria, which is a set of tools that allow us in medicine to roughly estimate when a person's time is likely limited. There are some problems with the hospice criteria. They often miss, wildly miss the mark of six months. And for some journeys, the terminal phase can be much longer than six months. But during those three years and working in cardiology, I never once heard one of the cardiologists use the phrase hospice criteria to guide treatment conversations or to talk about hospice care with families. It was always effort, effort, effort, effort, up until the point when our efforts could not be offered any longer. And then our hands were thrown up and we said it's time for hospice. And that was really challenging for families. And when I moved into palliative care and hospice care, I began learning about all of the terminal trajectories. And then everywhere I looked, I saw that the medical system is both missing the forest for the trees and often ignoring the elephant in the room. We do not have essentially any training in the end of life, it's care and conversations. And so I wrote the textbook. I developed a technique of how to guide families through a conversation. This actually also comes out of my work as a wedding photographer because I realized that people wanted somebody who was kind and who was an asset to their experience of their wedding day. They didn't want somebody on the corner saying, if you book me by Thursday, you'll get 20% off. They wanted a photographer who aligned with their vision. And that's where conversations that are done well with people and their families who are experiencing medical issues really can improve their quality of life. Because it turns out when we ask people, what do you want the end of your life to be like? No one in probably more than 1,500 times that I've asked that question has ever said, in whatever precious time I have left, I want to be in the hospital. They don't say that. They want to be at home. And so it's really a shame that our medical system doesn't teach the providers, clinicians, people at every level of the healthcare system how to guide people through these conversations. Because when I have taught medical students and residents, I always start by telling them that it's the easiest thing in medicine to give people exactly what they want at the end of life. They want love and they want their family and their pets. They don't want to be in the hospital. And so this book teaches it's all patient-friendly language. It's built for people at every level of the medical system. And in fact, many of my families buy this book because they can learn about the dementia journey, because it is one of the more common causes of death that we humans experience.

SPEAKER_00 29:48

There's a phrase that you use that I want to explore just quickly. You talk about helping families understand the what, when, and why of dementia. That's an interesting way of saying that. So I'm curious about the what, when, and why of dementia.

SPEAKER_02 30:03

Yeah, so I teach what is happening in the brain, the different diagnoses that we can experience, the different regions of the brain that are failing. I teach when the changes that we can expect on the journey will happen. I teach the why these things happen, and most importantly, why people behave the way they do on the dementia journey. I teach some of the fundamental aspects of our human nature and our human development so that we can, as caregivers, can maintain a loved one's dignity no matter where they are in their journey through our conversational and support strategies. That is the how.

The What When Why Of Dementia

SPEAKER_00 30:42

Well, thank you so much, Amy Shaw, for joining us on our podcast today. Amy is the founder of Better Dementia, a platform dedicated to helping families care for a loved one with dementia with clarity, confidence, and compassion. I'm looking forward to your upcoming book, Better Dementia from Overwhelmed to Empowered. And I'm really very happy that there exists this medical textbook that you have that families can look at too, or read also, The Arc of Conversation, How to Guide the Goals for a Care Conversation. So thank you so much, Amy. Any things that you want to leave our audience with? Any thoughts?

SPEAKER_02 31:19

Bob, thank you so much for having me on. And yes, I just want to say that to caregivers out there, if you are caring for a loved one on the dementia journey, your loved one is so fortunate to have you looking out for them the way that you are. Your concern, worry, and advocacy is the reason they're doing as well as they are. And if you have not heard that, please hear that from me.

SPEAKER_00 31:42

So if you enjoyed this podcast, feel free to subscribe to Advice from Your Advocates on any place that you listen to podcasts. We're pretty much on every podcast platform. You can also go to our website, manorlawgroup.com, and you can have links there. And we're also, if you would like to see our smiling faces, you can see us do the podcast in many of the podcasts, including today, on YouTube. So you can go to our Manner Law Group YouTube account. Thank you for joining us today, and don't forget to subscribe.