Why Dementia Care Matters

Lizette Cloete 0:00

The world teaches us, and if you pay attention, you will hear it everywhere. That the world equates a person's value with their ability to teach.

David Nakhla 0:14

Welcome to the Reform Deacon, a casual conversation with topics specifically designed to help local Reform Deacons. There are nearly a thousand deacons in the OPC alone. So let's take this opportunity to learn from and encourage one another. We're so glad you could join us. Let's jump into our next episode. Hi, my name is David Nakhla, and I serve as the administrator of the OPC Committee on Diaconal Ministries. Joining me today is Lisette Cloete. Lizette is a member of Covenant Community OPC in Taylors, South Carolina, where she attends with her husband, Lewis, who is an OPC minister serving with ITEM Item, the International Theological Education Ministries. Lizette is the founder of Think Different Dementia, which is a workplace ministry serving Christians walking the long road of dementia caregiving. The Cloetes moved back to Greenville to care for her parents and are now caring for her father following the passing of her mother in February last year. Lizette has more than 30 years of experience as an occupational therapist. The Cloetes emigrated from South Africa to the U.S. in 93 and moved back to Greenville in 2007, where Lewis attended GPTS. So I was sitting in a Presbyterian meeting in Taylor's a few months back, and Lizette proposed to me this vital topic: how deacons can come alongside congregants living with dementia and help lead their churches in caring well for both individuals and their caregivers. I'm so glad that we are now able to have this important conversation. I've seen several instances of dementia in the church over the years and how sensitive it is for those living with or around the one whose mind is failing, and how difficult it is for the church to know how to relate to and provide care for the sufferer as well as their family. So I'm really looking forward to learning from Lizette's experience and training, and I hope you are as well. So, Lizette, welcome. Thank you, David. I'm very excited to be here. Awesome. Thank you for your willingness to walk us through what can be obviously a very challenging, confusing, and sometimes even frightening season of life for dementia sufferers, but also their caregivers, their family, and the church family. So let's start with maybe a definition. Some may understand this disease from a personal experience, others may not. So can you help us define dementia?

Dementia Vs Alzheimer’s Explained

David Nakhla 2:52

I'm assuming this goes beyond just forgetfulness, right?

Speaker 1 2:56

It does. And if it's okay with you, I would like to start with the difference between Alzheimer's and dementia, because that I think will help set the stage for what people understand. Many people will hear the word dementia and think Alzheimer's, however, dementia is the overarching, it's called an umbrella term. Okay. Over nineteen primary types of dementia. Oh, wow. And underneath those nineteen primary types of dementia, there are subtypes. So there are over a hundred different types of dementia. Wow. So big umbrella and then nineteen little umbrellas. Alzheimer's is a type. Thank you. So other types of dementia that are common are things like Parkinson's disease, dementia, Louis body dementia, frontotemporal dementia, vascular dementia, all these different words are describing a progressive condition where you have actual physical changes going on to your brain. So that makes it helpful for people to understand because some people will say, well, my parent doesn't have dementia, they have Alzheimer's, right? Yes, they have a type of dementia. So the terms have become very interchangeable. Alzheimer's is still the largest type of dementia. However, it is not the only. And many people live with multiple types of dementia. So, and that's called a mixed dementia. So they may have an Alzheimer's disease and vascular because they've had a stroke or something else. So to start the conversation with understanding that there are those two different, you know, the two terms are different yet similar, but different. They just describe different things. Now

Medical And Behavioral Model Limits

Speaker 1 5:04

to go back to what the difference is between like medical models, behavioral models, caregiver models, et cetera, it's helpful to understand the worldview that the person that it is coming through. The medical models worldview comes through the lens of restoring care or preventing people from dying. That's the purpose of the medical model. First, do no harm, but allow people to have well-being, right? So cancer treatments are to kill cancer. The medical model looks at dementia, however, through the worldview of progressive loss and only through the lens of progressive loss. It's constantly looking at what the person is not able to do anymore, right? So they're losing this, they're losing this, they're losing this, as opposed to looking at the person through the lens of a whole human being. And then in the same lens, they are trying to do whatever they can to, and I'm not saying it's wrong, right? I mean, we do need the medical model to prevent people from having these changes. So the medical model does play a significant role and is very important. And at the same time, what I've learned over the last several years is how much we have incorporated the lost language into the process, the normal human process. The behavioral model is looking at the person living with dementia and their circumstances solely through a behavioral lens, repetitive questioning or anger outbursts or shadowing, or all of the behaviors that sometimes accompany a dementia process. And it's ascribing what we see happening to a behavior, which then implies that the disease is responsible for the behavior. Did that make sense?

David Nakhla 7:32

Yeah, certainly.

Speaker 1 7:33

So I'll give you a very tangible example. A client of mine, her husband, literally just went to a memory care facility. Okay. And living at home, she is a nurse and a nurse practitioner. Living at home, we have worked through this process. He has Alzheimer's, he has actual, real physical changes happening with his brain. He is on medication to help with some of the real changes that are related to the physical changes in his brain. Medication is a part of it. However, at home, we have other things that we can use to help mitigate some of the behavior, right? How she approaches him, how the environment is set up, how she keeps the house in a specific routine. So she moved him into an assisted living facility, and two things happened in the move. They didn't give him his medication to help with mitigating some of the real things going on due to real physical actual changes in his brain. And the caregivers and the environment were contributing to the fact that he was acting out. However, from a medical and a behavioral perspective, everybody is saying he is the problem because he has these behaviors and not recognizing how they and the environment around him have contributed to his responses. Was that helpful?

David Nakhla 9:16

Yeah, very helpful for sure. Would you say that there are stages of dementia? And if so, what would those be?

Speaker 1 9:25

There

Phases And The Brain Booting Down

Speaker 1 9:26

are changes that can be attributed to stages. Phases I think is a a better description. The reason I say that is life is not linear. Right? Right. So we know that God is a god of order, is not a god of confusion. The world to a large extent will tell us that dementia is confusing, that there's no order to it, etc. There is. And the challenge with it is when people are only looking at these different stages, so they're different models of staging. When people only look at those stages and their human doesn't fit into that stage, then all of a sudden it stops being helpful. Because mom doesn't look like this stage or this stage or this stage. I believe that the Lord, I mean, obviously we we know this, right? That children develop in a very specific pattern. Right? A baby is unable to uh take care of itself. And yet nobody will deny, or most people will not deny, that when they hold their infant and their infant looks at them and smiles at them, that infant knows that person cares for them. They can't say this is mom, they can't say this is dad, but they know that they are loved, right? And under normal circumstances, most people develop from infancy to adulthood in a very systematic pattern.

Speaker 11:14

Right.

Speaker 1 11:15

There is a very specific reason why 16-year-old boys have higher car insurance, right? And that has to do with the actual physical development of their brain. So if they're under 25, their brain hasn't fully developed yet. The same thing happens as we are changing because of a progressive process. It's like our computer is booting up, which is our brain, and then our computer boots down. And our computer boots down in a very specific order. And it's fascinating if you've been around anybody who is like works in hospice or around somebody who is dying. And now many people listening to this podcast either have heard of or knew, like I did personally, Kathleen Curto, right? And I know Kathleen did not have dementia, nobody needs to hear that. However, in the process of walking through her death and dying process, Kathleen went through the exact same changes that a person living with dementia goes through just in a very short period of time. Wow. Okay. And the reason I say that is we saw her the Wednesday, she was up, she was still talking, she knew me, she recognized we had a great conversation, and she passed away on Sunday. And in that period of time, she went from walking, taking care of herself, unable to do things, totally bedridden and taken care of. If you look at the developmental process, when we are I'm not talking about a sudden death, right? I'm talking about a dying process. We go through a very ordered way. Dementia follows the exact same progression in reverse over an extended period of time. And that's what makes it so difficult because it is for the most part an extended period of time. We're talking for some diagnoses from diagnoses until passing away 12 years. Some are faster, some are slower. And not everybody living with dementia will die from dementia.

David Nakhla 13:52

Lots to process there. Wow. I'm seeing you on the screen. I wish our listeners could see your hand motions as you ramp up and you ramp down. But there is, yeah, the correlation between the the early years of development, the boot up of the computer, and then the decline of those faculties, et cetera, as they booting down, I guess. What do we call it?

Speaker 1 14:16

And they literally boot down in the exact same order that the Lord had us develop to a large extent.

David Nakhla 14:24

Can you give some examples to flush that out?

Speaker 1 14:26

Absolutely.

Early Signs The Church Often Misses

Speaker 1 14:28

So where people will notice this in the church, let's go back to the church and deacons, right? Where we will start to notice this with an adult who has been an adult for an extended period of time, typically, here's a statistic. In the church, one out of three adults over 65 have some form of cognitive impairment. So one out of three. Which means if you have a hundred seniors over 65 in, and I've got to be careful because I'm getting closer to 65, but if you have a hundred people over 65, 33% of them are living with some form of cognitive loss, right? So how does it start to present itself is in what we call the executive functions, right? Those things that we know, there's a reason. I'm going to go back to the 16-year-old boy, right? There's a reason why 16 to 25-year-old young adults, they're independent. They can get dressed, they can drive a car, they can do some limited planning. However, they cannot necessarily always see the secondary consequences of what they're deciding. They don't have the wisdom for the things that you and I can be having a conversation, and we're like seven steps ahead of that young person because we can plan ahead, we can sequence, we have our executive function, a judgment, time management, like an awareness of time. So as a person is living with dementia, typically the first stuff that goes away is the stuff that developed last. Right? So, where do they become more apt to run into trouble? Being scanned, starting to make errors with their finances. Yes, maybe some memory loss, you know, not remembering conversations and repeating themselves. And it's not not remembering, that's the thing that we see, but it's the other things around it, the judgment, the sequencing, the planning, the emotional regulation, right? Not being able to control my own emotions, going back to the teenager, right? That's what they're still learning to control their emotions and get all of those things. So as the person's brain is changing, those higher level skills are the things that go away first. What makes it confusing for people is in essence, I want you to think about an escalator going down with a person standing on top of it. So superimposed on that is their life story. So if they, for example, a I worked with somebody who grew up in West Virginia, was the ninth kid out of nine, no running water, one bath once a week on a Saturday night before church on Sunday, and now he's living with dementia, and he is refusing to take a shower. Well, he never showered in his life. Oh wow. Never showered. And now you're telling him he's got to take a shower every single day. And I had his wife track when he would spontaneously take a shower. It was about every seven to ten days. So understanding his life story, where he lived, how he grew up, means that what I recommend to that family to do looks different, which is why the world says it's confusing because it doesn't know Lisette, it doesn't know David, right? Whereas the person who's the spouse, she knows his life story. And so if she is, as he's changing, accommodating his life story in this process, it will make it easier for her to figure out maybe why he's doing certain things or not doing certain things. So in a church context, the way that looks like oftentimes is starting to repeat themselves in conversations or doing some odd things or responding inappropriately to the social situation, maybe getting angry more than they used to be, like they used to be a very even-mannered person, but now they cannot control their emotions because their inhibition switch is gone. Right. We start to see some of those things happen.

David Nakhla 19:26

Yeah.

Speaker 1 19:26

So was that helpful?

David Nakhla 19:28

Yeah. So they lose some of their some of their filter.

Speaker 1 19:31

Oh, they lose a lot of their filter.

David Nakhla 19:34

Yeah.

Speaker 1 19:34

That's typically one of the first things that you will see is that inability to control their filter. Now think into a church situation. These are oftentimes people who have been going to the same church for years, maybe decades. These are people who might be elders in the congregation or somebody who is in high regard or a pastor or a pastor's wife. Those kinds of situations, and then all of a sudden, now they're not acting and responding the way they always used to. And frequently, what will happen is at a diagnosis point, if the person who is diagnosed is aware enough of it at the beginning, they may say something to their spouse, don't tell anybody. I don't want people to know. It's nobody's business this is going on, right? And what that inadvertently creates or starts is stigma and isolation. Because the reality is if you are truly living with brain changes, eventually over time it is evident to people around you.

David Nakhla 20:48

Right.

Speaker 1 20:48

So people will see, but they won't know what to do with that because there's the stigma of I don't want people to know that this is going on.

Speaker 2 21:00

Yeah.

Speaker 1 21:01

So they say that from a protective mechanism. I want to protect myself. However, what that results in for the person who is walking with them is isolation. Because now, how do you go to the deacons and say, my husband's been diagnosed with dementia if he's just told you don't tell anybody?

David Nakhla 21:20

Yeah.

Speaker 1 21:21

Right?

Anosognosia When Insight Disappears

David Nakhla 21:23

Does the sufferer always recognize that this is happening?

Speaker 1 21:28

No, they do not. The medical term for it is called anasygnosia. And if you make me I'll spell it. Anna without signosia knowledge, right? Knowledge of.

Speaker 2 21:42

Right.

Speaker 1 21:42

So without the knowledge of. Okay. It is not denial. It's not the same thing as denial.

David Nakhla 21:49

Sure.

Speaker 1 21:50

Denial is a protective mechanism. I am not ready to hear this information.

Speaker 21:57

Right.

Speaker 1 21:57

It it happens. People have denied. However, anasygnosia is something different. It is a specific part of the brain that then doesn't allow the person to recognize their own limitations and what's going on. Tangible example, not from dementia, but from a stroke. So somebody who has just had a stroke, a massive stroke, can have anasygnosia, the inability to see their own limitations, have no mobility or movement in their left side or right side. And because the brain has no awareness that this is going on, they get up and try to walk and end up on the floor.

Speaker 22:41

Yeah.

Speaker 1 22:42

So people living with dementia, about 80% of them have anasygnosia.

Speaker 22:48

Okay. Okay.

Speaker 1 22:49

So most people living with dementia do not know that they are living with dementia. Or if they know, they may be able to tell you I have dementia or I have Alzheimer's, and at the same time not understand or recognize or see how that's playing out in reality. I have dementia. I cannot remember things, but I can still pay my bills. I can take my medicine because I've done it my whole life. Well, you cannot remember. So how do you know you've taken your pills? How do you know you've paid your bills if you truly cannot remember, right? It has an outflow over functional ability. Oftentimes you'll see people say, Oh, I know I have dementia, but the application of what that functionally looks like in their life, they are maybe not aware of that.

David Nakhla 23:48

Okay. Well,

A Christian Framework For Dementia

David Nakhla 23:50

so you have really set the table well with regards to this whole topic and the existence of it in our churches. Can we shift a little bit for you to reflect a little bit on how you see this play out in the church and ways to address it helpfully? And of course, this is the deacon's podcast, the deacon's involvement in particular is what we're going to hopefully get to. But if you could start high-level as you even propose this as an important topic for the church to think about, yeah, flush that out a little bit.

Speaker 1 24:26

I would love to. If it's okay with you, I'm going to take a step back and explain to the audience and the deacons listening how I came to some of the conclusions that I have come to because I do come from the medical model.

Speaker 24:46

Okay.

Speaker 1 24:46

And so when I left the medical model, I was truly struggling to understand how to help dementia caregivers and people living with dementia from a different perspective. Right. Not just from the world's perspective. And over probably three years in talking to people outside of the medical model and then really starting to recognize what some of the limitations of the medical model are, and a caregiver-centered model, because those are the two biggest models that people will be facing as caregivers, and in particular for the deacons, important is the medical model and the caregiver-centered model. So the caregiver-centered model is all about me, right? Me, the caregiver. I'm stressed, I'm overwhelmed, I'm burnt out. And those things are true. I'm not mitigating that. Those things absolutely happen. And it forced me to stop and look at dementia specifically through not the world's lens anymore. The medical model's not working because I lived it, right? The caregiver-centered model's not working. And one day I sat down and I'm like, okay, Lord, what does? If none of this stuff is working, what does work? Okay. And then I started to look at it through a Christian worldview. And three things became very evident to me that are diametrically opposed to the world's view of dementia. And we talked about one, one is order, right? We've already talked about order, but the other two are dignity and truth. And so dignity is we are created in God's image. And because we have been created in God's image, the person living with dementia has inherent worth and dignity. The world teaches us, and if you pay attention, you will hear it everywhere, that the world equates a person's value, for lack of a better word, with their ability to think. So when we as the church inadvertently take on that worldview of because I think I am valuable, therefore, if I cannot think, I am not the same person anymore. I'm losing myself, all of the lost language we talked about at the beginning. So starting with God's word, that God created us in his image, and therefore we have dignity. Even from a reformed perspective, we know this to be true when we have families who have children that are born with different abilities. We never see that child as less valuable because they're created in God's image. However, frequently, when we have an adult who has always grown and flown and had the ability, now when they're losing that ability, we don't necessarily think about them in the same way. So dignity, and then the last one is truth. So dignity, order, and truth. We talked about order, truth.

Truth Without Therapeutic Lying

Speaker 1 28:28

The world literally has a technique. It is called therapeutic lying. Literally those words. Therapeutic lying, therapeutic fibbing. Because when a person is living with these actual brain changes, they are to a large extent, as their brain is changing, living in their own reality. Right. So they may have progressed to a point where they think that they are still living with their mom and dad and they're 80 years old. Right. And then they'll ask, Where's my mom and dad? Well, therapeutic lying will be I will say whatever I need to say to keep that person happy so that they don't have a behavior. Right. I have Ryan McGraw to thank for this. We had a Sunday school uh class several years ago. It was really interesting. There was a young nursing student and me in the audience, and we were working through the Westminster confession and we were talking about lying. You will tell the truth, right? And he and I had a conversation afterwards about it because the technique of not trying to pull that person into my reality, right, is helpful and valid. It works. However, there's a way to do it without lying. But the world does not teach you how to validate and be in that person's reality because they cannot come to me. I have to go meet them where they are. And I can choose to do it in a constructive way that isn't flat out lying. So the world teaches validation as whatever you need to say to keep this person happy and not rock the boat. And at the same time, they literally teach you to lie to that person in order to accomplish that. And so I started looking at how can I teach my Christian caregivers to validate because it will never work trying to bring them to us. Telling somebody your mom died 20 years ago, and they start to experience it as the loss that they had 20 years ago is not helpful, right? So these things really do happen. However, I can validate that person and what they are thinking without actually lying to them. So dignity, order, and truth. So how does this play out in the church, right? So here's where a lot of times I think we have a lot of work that we can do in the church in even just listening carefully to what people are saying about the process. Yes, it is loss. It is. You're grieving. Those things are true and right. However, at the same time, the person is still the same person. They're not processing information in the same way. They may have personality changes because of the brain. But that person is still the same person. How do we help people treat, interact, treat that person with dignity? Seeing them still as having value. How can we incorporate them still in tasks? How do we accommodate some of the changes that are happening in that person and their life? And it's not just the person living with dementia, but it's the family around them.

Three Caregiver Types In Your Pew

Speaker 1 32:32

In particular, there are three types of caregivers. You have a young adult caregiver. So those are caregivers between the ages of 18 and 42, 44. They are still trying to get on their feet. They're still financially struggling, right? They're trying to raise their own children, et cetera. They can be a dementia caregiver and unidentified because they're the adult child of somebody living with dementia. And they're still trying to take care of their own family. Or they are the spousal caregiver of somebody living with an early onset type of dementia. So that's one category of caregiver. The second category of caregiver, those are oftentimes the easier one to see. Those are the spousal caregivers, right? So the older, I'll use Louis and I as an example. I'll be 56, he'll be 60 in July. We're not older adults yet, but if something were to happen to him, if he developed dementia or whatever, I would be the spousal caregiver, right? Or I'll use myself as an example again, the adult child. The adult child caregiver taking care of a parent. Not in the early years of our lives, we don't, we're we don't have kids in the house anymore. They're grown and flown. So young adult caregiver, adult child caregiver, adult son or daughter, and then spousal caregiver, husband or wife. And so from a diagonal perspective, I would encourage deacons to be aware that in the realm of dementia caregiving in general, you will have people in that whole spectrum. Spectrum, yeah. It's not just the spouses, and it's not just the person who is the caregiver who is living with somebody living with dementia. You can be the adult child caregiver of a parent living in a different state, trying to support your mom, supporting your dad, and you're still a caregiver.

David Nakhla 34:53

Thank you. And I want to get into more details on that, but I did want to have you close the loop a little bit on the example you gave about therapeutic lying. About the individual who was asking about their parents who who died many years before. You said don't play the game of lying to them that, oh, they left or you know, they're at the store or something like that. You also don't want to cause them to suffer the loss and grievance of going through now just suddenly realizing that they're that they died 20 years ago. If you can close the loop, what is the best way to minister to them? What's the way best way to respond to that very specific example?

Speaker 1 35:30

It's a wonderful question. I worked on trying to find language that will work. I don't know about you, David. I don't like the word but. Nobody likes to be told but, right? Nobody likes to be told they're wrong, right? So when somebody says something like, Where's my mom? So the 80-year-old person who is now saying, Where's my mom? I want, I want you to take me to my mom. The very first step, it's it's like a little formula, right? Is to say yes, right? Because nobody likes the word no and nobody likes the word but. Yes. It sounds like you're thinking about your mom. You're validating what they say. They supply you with what's going on. Yes. It sounds like you're missing your mom. It sounds like you're thinking about your mom, right? And then not the word but use the word and. And why don't you tell me about them? So, in essence, what we've done is we've met that person emotionally. So, a very tangible example. Most people listening here, deacons, most people understand when you got a kid acting out, trying to reason with them, not gonna go anywhere, right? That's that emotional regulation. So you first have to meet that emotional need. So something very interesting about people living with dementia is as the rational part of the brain starts to change, the emotional part of the person is way more sensitive. So when you meet that emotional need, yes, it looks like you're afraid. Yes, it looks like you're anxious, right? The emotion, what what's emotionally going on? Yes, it sounds like you're missing your mom. And then the redirection isn't, and she's died, right?

Speaker 2 37:39

Yeah.

Speaker 1 37:40

The redirection is, and something that you can do right then and there. Why don't you tell me about her? What did you most love about your mom? You're not saying mom's gone. You've met the emotion, they're thinking, feeling something. You've met their emotion, and then you're attaching a redirection, a validation to it without lying.

David Nakhla 38:05

Very helpful. Thank you. Wow. And uh just going back to your workplace ministry, think different dementia. I think I now understand why you called it think different dementia.

Speaker 1 38:17

So the Lord was really kind with that because I did not know what to call my business. And it just came to me. And when I started it, it was not at all thinking the way I'm thinking now.

David Nakhla 38:30

So,

When And How To Tell Others

David Nakhla 38:31

Lizette, as an individual slowly becomes aware of the dementia, they may be suffering. And you mentioned sometimes there's secrecy associated with that. Can you talk a little bit about how that might be communicated eventually to the congregation when the family is willing to let it be known? How does that naturally get communicated to the congregation?

Speaker 1 38:58

I think that's a very important question. And I also think it's a very difficult thing to navigate. I teach people the moment you get a diagnosis of dementia, the very next conversation or close thereafter should be calling the pastors and the deacons, the elders and the deacons in the in the church.

Speaker 39:21

Okay.

Speaker 1 39:21

I understand, and that goes back to the conversation about people believing that their value is in the fact that they think, and therefore they don't want people to know that they're having a hard time thinking. Um, I know and understand the the feeling and the desire to want to keep this information private. Also, don't think that it's necessary to, you know, blab it from the rooftops to everybody in the congregation. I don't think it necessarily needs to be a, you know, from the pulpit, hey, Joe's been diagnosed with dementia and therefore, you know, the world's ended in doom and gloom, etc. If a person is living with dementia or active brain changes over time, it becomes evident to everybody. It is not one of those things that can be hidden. There is a period when it just is evident. People can see it. The challenge in the congregation is yet again, like we talked about earlier, congregations come in different shapes and sizes and buildings, etc. If it's a smaller congregation, it is easier because it's more organic. People will be aware, and maybe an elder or a deacon can come to a husband whose wife is showing signs of cognitive loss and say, Hey, we've noticed some changes. You know, have you guys had that looked at? You know, sometimes the person closest to it doesn't see it. Um not to, you know, make a fire, but to bring awareness, or because then it'll, you know, a private conversation. It'll give that husband maybe the opportunity to say, yes, I've noticed these changes, we're working through diagnosing or we're not, or whatever's going on. And then the leadership of the church, the elders and deacons can quietly come around the couple, because at the beginning, maybe things are not as hot water, right? So one of the analogies I often use is when we're in a family, when things happen and your dad has a stroke, right? You're like the frog being thrown in boiling water. Right. Because all of a sudden, you know, life is not good. You know, you're dealing with the hospitals, the rehab, all of the things, right? So we recognize that that is an uncomfortable situation, like a frog being thrown into boiling water. Dementia is the exact opposite. It's that frog in cold water that the heat got turned on. And people accommodate, accommodate, accommodate, and they make changes, make changes, make changes until they are a boiled frog, right?

Speaker 2 42:33

Yeah.

Speaker 1 42:33

I recommend that if you have a diagnosis of dementia, or if your husband or your wife or your dad or whoever has a diagnosis, that you tell the leadership of the church. You tell the pastor, the elders, and the deacons, they cannot help you unless you tell them, right? In a larger congregation, I think it can become a little bit more difficult and sensitive because some of the first signs might be social. And then people that always went up and talked to them, they're acting different or odd or not answering questions or asking things over and over a hundred times, whatever it is, people start to withdraw.

Speaker 2 43:17

Okay.

Speaker 1 43:17

So being more aware as the deacons, if you start to see people are withdrawing or being withdrawn from, that can be an early indication, maybe something's going on. Nobody has said anything. They may not even have a diagnosis, but the people around them might be responding or reacting because this person is not responding or reacting in socially, culturally Christian, acceptable ways that they always used to. So, not an easy answer, do I think that it ever should be like announced uh from the pulpit? I think. There might be situations when it could be, depending on the situation. I've known pastors who started living with cognitive impairment, who because you know of the situation, and obviously the elders and deacons were involved, did make an announcement. Right. Um, so I think it's depending on the circumstance. My biggest request would be for people to not try to hide it because nobody can help if you don't share. Yes, it is private, but there is no stigma to living with cognitive loss. Because we cannot see the actual physical changes happening in the person's brain, it is easy to assume that there's nothing wrong. Whereas if somebody walks in and they have an amputation of their leg and they're using a prosthesis, we can see that there's something wrong. This is hidden because what we see is the changes of how they process and take in information and do things with it.

David Nakhla 45:16

It's interesting because just last night I heard on a podcast that they were talking about the withdrawal of our older segment from churches. Like since COVID, like there's a significant number, and it's for multiple reasons. But I think that the you know, a takeaway from this episode is also for church officers to keep an eye on our more elderly segment of the church and are they withdrawing and again various reasons why that might be happening, but it could be because of suffering from the effects of dementia and and how that's affecting their family and stuff. And so that we don't lose sight of this important segment of our congregation. So thank you for that. Okay. And when

Practical Diaconal Help That Works

David Nakhla 45:55

you approached me about this topic, you were thinking about interactions in the church, caring for one another in the church. Were you primarily thinking about deacons and their ministry to caregivers? Or were you thinking about deacons and their ministry to those who suffer from directly the sufferers?

Speaker 46:14

All of the above. Okay. All of the above.

David Nakhla 46:18

How do you think uh deacons can directly, but also lead our congregations in serving all of the above? And you can parse that out as you go.

Speaker 1 46:27

Churches come in all shapes and sizes and flavors, right? Related to means and opportunity and all of it, right? So we have churches in the OPC that are 300 people that the care and ministry to people living with dementia is gonna look different.

Speaker 4 46:49

Yep.

Speaker 1 46:50

And we have churches who maybe have 30 people where the care and the ministry to people living with dementia and their caregivers is gonna look different.

Speaker 47:00

Yep.

Speaker 1 47:01

Both of those things can be true. I will use a really good friend of mine. Um, they don't attend a OPC, but they're in the PCA whose mom was living with dementia, and I worked with them and for over two years in helping them through the last stages of her mom's dementia. Okay. Because it was a small congregation and because everybody uh was aware that Jenny had dementia, the things that we could do were a little bit different because the congregation was very small. It also made things limiting to another extent. But up until about eight weeks before she passed away, she was in church every single Sunday. Every single Sunday. Her husband and her children would get her ready, would bring her. The people in the congregation knew that she had dementia. They knew that if she took out a door, somebody went with her. So they identified, they knew, you know, where the exits of the building was, and she would just walk. And everybody accepted her exactly for who she is and where she is at this moment in time. One of my sweetest memories is we went there for a Sunday and it was communion, was the Lord's table. And this particular church had a practice, it was kind of at the tail end of COVID of still having people get up and walk.

Speaker 2 48:57

Yep.

Speaker 1 48:57

And I remember seeing her, you know, her husband helped her get the elements and so on. And it's their practice also to wait and everybody take the elements together. Well, she comes around the corner and the bread's in her mouth and the wine's down her throat. And it was beautiful, right? So meeting her where she was and ensuring both her safety, but at the same time in worship, somebody may be sitting with her so her husband could take some downtime and really participate in worship. Not being concerned if she got up and walked out the door and just wandered out, somebody would just get up and go with her. Smaller congregation. More limitations, right? Because now we don't have as many deacons or people that can physically come in and give meals or sit with her or provide transportation or respite care or things like that. So then, like in a larger church, it has more human resources, people, right? What frequently then happens because it is a larger church, that husband-wife combination withdraw and they're on the prayer list. And maybe the deacons are working with them, or maybe they're just on the prayer list, being more cognizant. Most caregivers will not ask for help. They will not ask for help. Tangible rubber meets the road example. We all know when a woman has a baby in church. I don't know about you, but I have taken many, many meals to people after they've had a baby that only lasts about six weeks, maybe eight, depending on the family situation, etc. Meals, but a long-standing meal train, not a short spurt, can be a game changer for a caregiver. Not always having to think about what am I gonna put on the table to eat. Other tangible ways, if it is a wife taking care of a husband, yard work, scheduled maintenance, scheduled things, not asking to do this, but calendarizing and saying in the summer we're gonna come every whatever and mow the lawn.

Speaker 2 51:32

Right.

Speaker 1 51:33

Pairing a person with dementia with a person who is a peer companion that can come alongside, take them out, maybe still for a meal, give the primary caregiver an opportunity to take a break. Yeah, respiratory care. There's lots of tangible ways that we can express mercy ministry to family caregivers. I can come up with hundreds of ideas. The challenge is that each church is different. And so without knowing the makeup of that particular resource that can be stewarded, it is hard to give definitive do this, do this, do this. Dementia-friendly opportunities for worship in a larger congregation. Many, many families have maybe somebody living with dementia or a child with autism, right? That cannot sit in the congregational worship because it's too overwhelming and overstimulating.

Speaker 52:38

Right.

Speaker 1 52:38

Can we in larger congregations start to look for creating opportunities for that person to be kind of like CCOPC? We have a nursery, they have the speaker, right? Yep. But have that person be in a quieter environment and not with their primary person taking care of them, but another person who can be with them. Not to pull them out of worship, but to start to be more cognizant if they cannot be in worship, how can we still include the person in worship and bring the church around them? Was that helpful?

David Nakhla 53:18

Yeah, yeah,

Care Teams And The Frustration Gap

David Nakhla 53:19

very helpful. I love that it's advocating for a very proactive diagonal stance, which I love. Do you think that there's a place for even a focused care team focused on 100% interacting with the family and a focused care team?

Speaker 1 53:35

I love that idea. And giving those people who are on the focused care team some of the skills in order to know how to communicate with the person living with dementia.

Speaker 2 53:50

Yeah.

Speaker 1 53:51

Yeah. How to interact with them, how to be with them without expectations. I know this is hard without expectations, but a lot of what I have seen with people, both the person living with dementia and the people around them, is when there's frustration, the frustration is always in the gap. And what do I mean by that? It's one of two ways. So if the person living with dementia has ability, they're at the top of the page, but the people around them think that they don't have ability and they take everything away. The person living with dementia is frustrated. Right? Because I can do these things, you won't let me. Now, safety is another consideration. I'm not talking about just doing it.

Speaker 54:47

Yep.

Speaker 1 54:48

But for example, taking everything away and not allowing the person to be able to continue to do what they can do. And that's a recognition thing between trying to keep somebody safe and not really understanding what they are able or not able to do. So the person can be frustrated because everybody's taken things away. So there's frustration in the gap. Then the other way is true too. The person doesn't have the ability, but the people around them believe that they do. And then they get frustrated because why are you not doing XYZ? And there's this gap. So the care team, going back to the care team, is being able to either recognize or identify where that frustration is. Is the caregiver frustrated because they believe, and this is very true, that mom should be able to do XYZ, that my husband should still be able to do the finances and he isn't. Or particularly in our denomination, a wife who has always submitted to her husband, who now no longer can make decisions.

Speaker 2 56:08

Yeah.

Speaker 1 56:09

And frustration, right?

Speaker 2 56:10

Yeah.

Speaker 1 56:11

And the same in the other direction. So recognizing the gap between what is and what we think should be. For a care team, being able to recognize that gap will help them either educate the caregiver and be able to help them understand what's going on, or be able to mitigate some of their frustrations and then truly meet them. Dementia is one thing for sure, and it truly is an ongoing work of sanctification.

Speaker 56:45

Yeah.

Speaker 1 56:46

Both in the caregiver and care receiver. And we forget about that.

Choosing Support Groups Wisely

David Nakhla 56:51

Yeah. Lizette, are there any well-known support group groups out there that could be useful to churches and to families who are suffering?

Speaker 1 57:00

I love the question about support groups. Support groups are valuable and only if it is the right support group.

Speaker 2 57:10

Yeah.

Speaker 1 57:10

There is a difference between a support group where everybody is going to the support group to vent and just get out all the verbal vomit, the frustration, the annoyance, the et cetera, versus a support group that is facilitated by somebody who actually knows how to help families living with dementia and keeps a very strong handle on top of the venting. Most support groups through the Alzheimer's Association, you can go to their website, they have lists of geographic-specific support groups, are only as good as the facilitator. And if it is through the Alzheimer's Association or other things like that, you have to be discerning whether or not they are coming from a Christian worldview, because these support groups are 99% of the time not coming from a Christian worldview. Now, in our conversation off-air, it was mentioned about Grief Share, which is an initiative through church initiatives, right? That's the company that does it. Sometime this year, they are actually bringing out a new curriculum for caregivers. I don't know what the ultimate name is going to be, and I don't know when they're going to release it. So the opportunity in the future is going to be a curriculum specifically designed for caregivers from a Christian worldview. So that may be helpful later on. If a church is interested in starting a support group, I can help point them in the right direction. They can reach out to me. I do have a community online where I work with family caregivers to answer the questions and the challenges they have through a biblical worldview.

David Nakhla 59:15

It's good. Yeah. It can have very constructive purposes or very destructive purposes.

Speaker 1 59:20

100%.

David Nakhla 59:21

Yeah. Yeah. Is

Why Dementia Seems More Common

David Nakhla 59:24

there a growth in dementia in our society?

Speaker 1 59:27

Numbers a hundred percent. Yeah. So I think that's twofold. Everybody is, you know, it's more rampant. No. Dementia's been around since if you go back and and look in history, like some of the first documented signs of dementia were already in the Old Testament times. You know, it's been around forever, definitely in ancient Egypt. I think we are diagnosing it better. I think we have more people, which makes it look like there's more. We live in a fallen world that has some of these changes happening. You know, some of it is uh lifestyle, can be. Not all dementia is inherited.

David Nakhla 1:00:13

We're also living longer.

Speaker 1 1:00:14

We are living longer. It's multifactorial, right? So, yes, there are more people living with dementia. We're living longer. We have all of those things are true. And we're a couple of steps behind, I think, in the church in knowing how to truly help these people and their family caregivers. Yeah.

Speaker 1:00:36

Yeah.

Speaker 1 1:00:37

But like my prayer is to be able to speak to churches about this because there's so many people in the congregation that are dealing with something like this. Even in our church, when I started my podcast a couple of years ago, um, I'm I asked a whole bunch of people to, you know, just listen to the first episode and give it a little bit of a bump. Um, and in my conversation and asking people, there were adult kids in in the congregation, oh yeah, my dad has dementia. Oh, yeah, you know, whatever. And my very next question was, how's your mom doing? And they're like, Oh, she's fine. I'm like, no, she's not. That there's this disconnect because spouses try to not infringe on their kids.

Speaker 2 1:01:27

Yeah.

Speaker 1 1:01:28

Which is why I say this is a longer and more broadly, broader reaching conversation than what people actually think.

David Nakhla 1:01:37

Mm-hmm. Mm-hmm. Well, I think we could probably talk about this for a long time because there's I thought you could. Yes, yes. I think I mean, I think there's so many, and I'm sure that some of our listeners are are thinking about their particular instances and would love to, you know, for us to flush those out.

Resources Books And Contact Info

David Nakhla 1:01:56

Can you talk to us about a resource that sounds like you yourself are a resource that are available? Is there a way for deacons to get a hold of you if they wanted to? Absolutely.

Speaker 1 1:02:07

They can email me. Okay. It's super easy. It's Lizette at thinkdifferentdementia.com.

David Nakhla 1:02:13

That's with two Ts, L-I-Z-E-T-T-E, Lizette at thinkdifferentdementia.com.

Speaker 1 1:02:21

But I also have a podcast. Okay, great. So my podcast is literally called Dementia Caregivers Support for Christians.

Speaker 1:02:30

Okay.

Speaker 1 1:02:30

It didn't start out as a Christian podcast, but it is a Christian podcast. I'd love speaking opportunities at churches. Okay. Women's fellowship, presbytery, women's fellowship meetings, things like that, talking to the deacons, not from a teaching the theology of caregiving as much as teaching the practical application. The theology part of it, we do an extremely good job of in the OPC.

Speaker 2 1:03:00

Yeah.

Speaker 1 1:03:01

In truly doing that. But how do we tangibly work out in a specific congregation who is helping or walking with a specific family or families living with dementia? I would love to be able to help our denomination.

David Nakhla 1:03:19

Good. Thank you. Are there any books that you'd recommend?

Speaker 1 1:03:22

I've read it. It is not a reformed book. It's actually a pretty good book. It is called Dementia Living in the Memories of God by John Swinton. Okay. And then one of my favorite books that actually speaks a little bit about dementia, and we didn't have time to get into it today, is Ed Welch's book, Blame It on the Brain.

Speaker 1:03:47

Okay, great.

Speaker 1 1:03:48

Blame It on the Brain is a very helpful book because the part that nobody really speaks about is everything is dementia, nothing is sin. There are times when it's not dementia, but it is sin.

David Nakhla 1:04:02

That's right. Yeah. Just because he just because somebody has dementia doesn't mean everything's allowed.

Speaker 1 1:04:07

100%.

David Nakhla 1:04:08

Yeah. Yeah. Is there

Four Spiritual Caregiving Pairings

David Nakhla 1:04:10

any final things that you wanted to bring up?

Speaker 1 1:04:12

There is. There's one thing that I think is not often considered or looked at from a caregiving and a church perspective. It's one of those things that kind of once you see it, you can't unsee it, but we don't necessarily always put words to it. And in essence, when we're in this journey, I want the listeners to think of a quadrant, an XY quadrant, with the one axis being the person living with dementia and the other axis being the person caring for the person living with dementia. And then the low and high of each of those are unbeliever, believer, unbeliever, believer. Okay. Because we, in essence, have four diads that we are working with. The one is super easy for us because those are those are the two unbelievers. Their dementia caregiving journey looks vastly different than a believing family's dementia caregiving journey. So we have an unbelieving caregiver and unbelieving care receiver. That is what you frequently see in the world. Okay. Okay. The other one is also super easy because it gives us certain tools, right? Those are husband and wife combinations, family caregiver, care receiver combinations that are both believers.

Speaker 2 1:05:40

Yep.

Speaker 1 1:05:41

So they're spiritually alive.

Speaker 2 1:05:43

That's right.

Speaker 1 1:05:44

But the two other dyads are harder sometimes to pull out and have practical functional application. The one is a care receiver who is receiving care from an unbeliever. And they are in essence spiritually unyoked. So the person living with dementia is a true born-again believer who is receiving care from somebody who is an unbeliever. It could be a child, it could be a formal caregiver, it could be whatever. That person may need more diaconal support from a spiritual perspective. As they themselves are living with dementia. And then we have the other dyad, which is the situation my husband and I are in, you have a believing caregiver providing care to an unbelieving care receiver. My dad is a self-professed atheist. And so as we came into as a husband-wife couple who are um you know a pastor and technically a pastor's wife, into the situation that we had to make decisions from our marriage perspective first. And how is taking care of an unbelieving parent going to influence our marriage? And so from a diaconal perspective, taking care of somebody who is an unbeliever can have other complications or implications. So those three diads is something that I would love for deacons and even pastors if they're listening to this, um, to truly understand as we start to unpack what's going on, because it can make significant difference in the application of the help.

David Nakhla 1:07:50

Well, I think that anybody listening to this has an appreciation for your depth of knowledge and experience and interest in this topic and would see this as a door opener to addressing this important area of ministry. And so thank you, Lizette, for taking the time to meet with us and join us on this podcast today. I'm sure that uh many will be thankful as well.

Speaker 1 1:08:16

Well, I have been very grateful for the opportunity, David. Thank you so much.

David Nakhla 1:08:21

And

Closing Encouragement For Deacons

David Nakhla 1:08:22

deacons, we we do hope this episode was helpful and will be an encouragement to you in your labors for the Lord in the church. May the Lord bless you in those labors, particularly in this important area of ministry. Thanks so much for joining us. Special word of thanks to our producer, Trish Dugan, who works faithfully behind the scenes to bring this podcast to you. Be sure to visit our website, thereformdeacon.org, where you'll find all our episodes, program notes, and other helpful resources. And we hope you'll join us again soon for another episode of the Reformed Deacon Podcast.