How To Not Feel Ashamed After A Dementia Diagnosis
Have you ever said, “Let’s just keep this between us”?
Or felt the urge to protect your loved one’s dignity by staying quiet about their dementia diagnosis?
In Episode 253, we uncover the quiet danger of shame-fueled silence—and how it grows into stigma, isolation, and spiritual disconnection. This episode speaks directly to Christian caregivers who are walking the tension between honoring a loved one and hiding a hard truth.
Here’s the message: Stigma thrives in silence—but healing begins in truth.
Stigma Starts with Silence
It may feel like privacy.
It may look like protection.
But when we hide a diagnosis, what we’re really doing is agreeing—subtly—with the lie that dementia is something to be ashamed of.
Lizette shares the story of a family heirloom hidden away after a crack. Not because it wasn’t valuable—but because it felt too fragile to expose. That’s what we do with our loved ones when stigma creeps in. We withdraw. We stop bringing them to church. We stop telling others. And soon… we’re alone.
📖 “The fear of man lays a snare, but whoever trusts in the Lord is safe.” – Proverbs 29:25
The Church Often Doesn’t Know What to Do—So Tell Them
One major reason stigma grows?
The church often wants to help—but doesn’t know how.
That’s why Lizette offers specific ways to help your church support you:
✅ Ask for a buddy during worship to help step out if needed
✅ Request a quiet space with audio of the service
✅ Suggest monthly check-ins from a deacon
✅ Be honest and ask for prayer—early and often
Your loved one still belongs in the body of Christ. Even if they don’t remember the sermon. Even if they’re on hospice. They still matter.
Even If They Deny It—You Still Need Support
Some caregivers struggle to speak up because their loved one denies the diagnosis. This isn’t just denial—it may be anosognosia, a brain-based condition where the person truly can’t see their deficits.
But even if your loved one doesn’t acknowledge the truth, you still need to. Galatians 6:2 says, “Bear one another’s burdens.” That includes asking for help—even when it’s hard.
The 4D Method: A Simple Way to Ask for Help
The 4D Method helps caregivers stop waiting for the “perfect” time to ask for help:
Do – What only you can do
Delegate – What someone else can do for or with you
Delay – What can wait
Delete – What no longer fits this season
Write your list. Keep it handy. And when someone says, “Let me know how I can help,” hand them that list. Give your church something to say yes to.
Don’t Let Silence Steal Your Support
You are not just caregiving.
You are being sanctified through the process.
And you don’t need to do it alone.
Join our monthly free workshop!
“How To Immediately Reduce Dementia Caregiver Overwhelm and Stress In 3 Easy Steps”
Transcript
Stigma and Shame in Dementia
[0:00] If you have found yourself saying, let’s not tell people, or if you’ve felt the urge to hide a dementia diagnosis, even from your close family, [0:11] I want you to hear me clearly. That’s not just being private. That’s feeling shame. And shame is where stigma takes root. The world teaches us that dementia is something to fear, to manage, or to just endure. But as Christians, we know something different. Both dementia and caregiving are part of God’s design to form us, refine us, and fulfill His purposes in and through us. Welcome to Dementia Caregiver Support for Christians. I’m Lizette Cloete, and I teach Christians how to think differently about dementia care, not through a medical lens, but through a biblical one, because your loved one’s value does not fade with their memory loss. And this road you’re walking, it’s not random. It is for your good and for God’s glory. This next week, we have our next monthly Ask the Dementia Coach question and answer session on Thursday, May 29th at 6 p.m. Eastern. I keep these very small and they are by registration only and I invite you to attend.
[1:26] Register at thinkdifferentdementia.com/ask or go to the website.
[1:34] Thinkdifferentdementia.com and look under the free resources tab. So I want to give you a picture today. I want you to imagine you have a beautiful piece of china that you have inherited from someone. We actually have a pottery jug that my husband’s family have from the great trek in South Africa. So that dates back hundreds of years. And I want you to picture that that heirloom gets a massive hairline crack. What do you do with it? You don’t throw it away. You wrap it up, you tuck it into the back of the cabinet, not because it’s worthless, right? But because you’re afraid that it is going to break further. You’re trying to protect it. But slowly over time, what happens? It doesn’t get used. It is in the back of the cabinet and it’s gathering dust. Nobody even sees it anymore. Not because it’s not value, but because you’ve hidden it. And that is what happens when stigma creeps in after a dementia diagnosis. You love the person. You see their value. But slowly over time, you start removing them from public places.
[2:55] Churches, community, family conversations. You’re trying to keep them safe. And here’s the honest question. Are you protecting them or are you unintentionally putting them away? Stigma doesn’t come from judgment. Sometimes it grows out of our fear. Fear of embarrassment, fear of being misunderstood, fear of saying the wrong thing. But as Christians, is.
Understanding Stigma in Dementia
[3:22] We are not called to live in fear. We are called to walk in the light. Today’s episode, we are going to look at the stigma behind dementia and dementia caregiving. And we’re going to look at it as usual in three easy points. The first one is stigma begins when we believe dementia is something that we need to hide. The second one is stigma grows when the church doesn’t know how to respond. And the third point, stigma gets internalized, especially when your loved one doesn’t see the problem. So let’s start with the first point.
[4:03] Stigma begins when we believe dementia is something we need to hide. When we first get a diagnosis, oftentimes it feels safer to just stay silent. We say things like, let’s just keep this between us. or they wouldn’t want other people to know, or the church means well, but the people aren’t going to understand what we’re going through. But here’s the thing. When we stay quiet, we are not just being private. We are quietly agreeing with the world that dementia is something to be ashamed of. Proverbs 29 verse 25 says, The fear of man brings a snare, but he who trusts in the Lord will be exalted. Shame will trap us. But trust frees us to live truthfully, even in the hard seasons.
[5:03] So one of the things I want you to start to shift your thinking with is start telling people in a safe place that you have a diagnosis of dementia in your world. Either you yourself, as a person living with dementia, or as a family caregiver taking care of somebody living with dementia, we want to start telling people immediately that you are dealing with this in your world. You want to tell your pastor. You want to tell the elders or the deacons.
[5:40] You want to tell a friend. You need to start putting together a team around you. It isn’t dishonoring to the person that you love that you tell other people. It’s actually maintaining and keeping their dignity. Because one of the biggest things that I see as a person who has walked thousands of people through a dementia caregiving journey is that when we stay quiet because we’re ashamed, because we’re trying to protect that person’s quote-unquote autonomy.
[6:17] Is that over time it just isolates you. The analogy that I have in my mind all the time, and I know I have mentioned it here before, the church is like a, I want you to imagine a fire with charcoal briquettes. And when it’s together, there.
[6:36] The fire runs hot and it literally feeds itself, right? Until the fuel is gone. But I want you to picture that as an analogy of having support from the church and feeding your faith. When you are a Christian who, or a coal in this analogy, if you move that coal away from all the other charcoal briquettes.
[7:03] What do you get over time? That one dies. It’s not able to stay warm and alive. It’ll burn itself out. It’ll die. And so the church around us is like that fire. As long as we are together and we are helping one another, we can overcome. And I’m not talking from a worldly perspective of overcome. I’m not saying that the diagnosis will go away. I am not saying that we’re not still going to be in that caregiving season. But when we allow the truth that we are contending with a diagnosis to be the foundation that we build upon, we invite other people to actually walk this road with us. Most people who are family caregivers tell me it is isolating. I’m so alone. I don’t have people who are walking with me through this. And frequently what I find the reality to be is those were the people who didn’t tell somebody, didn’t tell the church, didn’t tell other people what they were contending with. And frequently that is with the guise of trying to protect that person’s autonomy.
Church’s Role in Supporting Caregivers
[8:20] And I get that that’s a good intention, but unfortunately, it leads to the wrong result. The second thing that we’re going to look at today is that stigma grows when the church doesn’t know how to respond. So we have our side of telling people what we’re contending with, but we also have what the church actually does after the church hears somebody in the congregation or an adult daughter is helping family with cognitive loss or whatever the situation is. Stigma continues to grow when the church doesn’t know what to do. And most churches are not actively trying to ignore families with dementia. I contend they just don’t know what to do with families with dementia. So they just go to the default setting, which is saying things like, let me know if you need something, having the person’s name added to a prayer list, but over time.
[9:20] You know, the person is not there anymore because of changes that come. And quietly the people who are family caregivers as well as the person living with dementia quietly disappear and there is no follow-up. And this isn’t meant to harm or be intentionally cruel. This frequently is that the church doesn’t know what to do. The church feels uncertain. And you have to admit that there is some validity to that because frequently we, as the family caregivers, don’t know how to respond. We are uncertain ourselves. But what happens over time is this unintentionally communicates to the family, to the person living with dementia, that they are no longer important, that they do not belong. And Romans 12 verse 5 talks about, we who are many are one body in Christ and individually parts of one another. Now, if we really believe that, and I believe that, then no diagnosis of dementia changes. Changes the fact that that person, particularly if they are a Christian who is experiencing dementia. If you listen to the episode 251, which was how to biblically reframe dying with dementia with hope.
[10:46] You will listen to that episode and you’ll hear me talking about four different dyads. The first one are two caregivers, a caregiver and a care receiver who are both Christians.
[10:59] So picture a husband and a wife combination or a Christian daughter taking care of a Christian mother, right? And so these people who are believers as people living with dementia still need to be in the body of Christ, even if they don’t necessarily always understand the sermon, even if they are a little disruptive.
[11:22] Even if there are things that we need to do to accommodate these changes. So I want to encourage you, don’t wait and just have the church guess about what it is that you need as either the person living with dementia or the caregiver, but ask for specific small things. For example, if you are a caregiver who is helping someone, ask for somebody to be paired with you in the worship service so that if you need to take them out or if you need a break that they maybe could take the person out and just walk outside for a little bit. Or ask the church to designate a quiet area that the person and someone else, not you as the caregiver, can go and listen to the sermon. We do this with the nursery at the church that I attend. Our nursery has a overhead speaker. If you are in the nursery watching kids, you can hear the sermon. So why don’t we do this with adults who are living with dementia, particularly in larger congregations? One of my close friends, Angela, she was a client of mine.
[12:36] She’s still my friend, but she was a client of mine. She was in my group program. When her mom was living with dementia, up until about two, maybe three months, but not super long, before her mom passed away, they were still taking her to worship every Sunday. And the church accommodated it. It was granted a smaller congregation. Everybody in the church knew, hence me. Recommending telling the church what’s going on, but they were able to keep her in the worship service all the way to the end, including taking communion up until several months before she passed away. She was there. She was a part of the body. And I will never forget seeing that and seeing how it works for a congregation to walk alongside people all the way through almost her entire journey and she was on hospice the last seven months of her life, right? So a quiet space for some to prevent overstimulation or to change the environment. Then another good opportunity would be to ask somebody, to ask the deacons to actually check in with you every single month.
[13:47] Give the church actionable things that the church can do to help you.
Internalizing Stigma and Anasognosia
[13:52] Give them something that they can say yes to. The third thing that we’re going to look at briefly is stigma gets internalized, especially if your loved one doesn’t see the problem. Maybe the person you love says, I’m fine. There’s nothing wrong with me. And you wonder, how can I tell other people that they have a diagnosis of dementia if the person won’t even admit it to themselves.
[14:25] Now, this is a real problem and it has an actual name. The name of that is anasognosia. It’s literally a brain condition where the person living with the brain change cannot see the changes that’s happening. This is not denial. This is a medical part of the brain just not recognizing the changes. My dad has anisognosia. He does not see that he is having other changes. He will vocalize and tell people, oh, I don’t remember things. But you and I know if you have been journeying this for any length of time, that dementia isn’t just not remembering things or having short-term memory deficits. It impacts our judgment and our insight and our ability to sequence and our ability to anticipate consequences. All of these things are wrapped up in a dementia diagnosis, and anasygnosis literally is the person cannot see what’s happening to them. It is a physical change to their brain. Their brain cannot see the deficits. But here is what is true. Their.
[15:46] Doesn’t remove your responsibility to be truthful. And Galatians 6 verse 2 says, bear one another’s burdens and thereby fulfill the law of Christ. That also includes bearing the burden of getting yourself support, even when it’s uncomfortable. One of the biggest challenges I believe that the church has is that the church inadvertently has taken on the cultural mandate of protecting a person’s autonomy. Now, their autonomy is not riding on whether or not they remember things. Their dignity resides in the fact that they are created in the image of God. And I want to encourage you, even if the person has anasognosia and doesn’t want other people to know, it is your responsibility as a caregiver because you are going to need support. You cannot do it alone. It is your responsibility to speak of it earlier and more frequently.
[16:58] Not as a confrontational thing, but as a finding a way to put support around yourself for this journey because it is a long journey.
The 4D Method for Caregivers
[17:08] And so here is a method that I teach my clients. It’s called the 4D method. It’s a simple way to stop waiting for the right time to ask for help and to be able to come up with a framework for you to be able to look at what it is that you need to do. And so I call it the 4D method. The first D is do. There’s certain things that you as the caregiver only you can do. Things like intimacy with your partner, if you are the wife, based on your unique role, or things like you are the medical power of attorney. You are the one who’s responsible for making those decisions. No one else can do those things. So do. What do I absolutely have to do? And it’s interesting, it’s not everything that you think it is. There are things that you can change.
[18:03] So the first one is really critically looking at what I have to do. Me as the care giver, the care partner. The second D is delegate. What can other people do with or for you? For example, mowing the lawn, delegating that out earlier on. Yes, you might be able to do it, but that doesn’t mean that you should be doing it. You should be saving your energy and your effort for other things, right? So what can you delegate? The third D is delay.
[18:34] What can actually wait and start to put those things on pause. That may be certain things that you’ve always done, like mine actually needs to be sorting out my house, right? Those are things that I can delay. And then the fourth D is what can you delete? What doesn’t fit the season? And what can you let go? And so make a list, keep it in your purse. And when somebody says to you, let me know what I can do to help, You pull it out and you say, actually, here are things that you can help me with. This is what will be meaningful for me right now. Give the list to the deacons. Have the deacons assign people. There are things that we can do to engage the church to help us that we as caregivers are not actually asking the church help with. And the church doesn’t know what you need unless you will tell them what you need. if today’s episode has helped you in any way see that you’ve been carrying this in silence,
Join the Ask the Dementia Coach Session
[19:41] maybe without even realizing that you are, I want to invite you again to take a simple next step. Once a month, I host the small question and answer session called Ask the Dementia Coach. This is for Christian caregivers who are walking this road and need biblical.
[20:01] Practical, honest, and hope-filled support. There’s no pressure. You do not need to prepare. You just come and you ask questions in a space where you do not need to explain everything to someone. Our next session is next Thursday, May the 29th at 6 p.m. Eastern. You do need to register ahead of time. I keep these small on purpose. Last month, I had 9 to 10 people show up, and I stayed on for two and a half hours to serve people just like you. And so I want you to save your spot at thinkdifferentdementia.com forward slash ask. Now, if this episode stirred something in you, don’t let it fade. Let’s talk about it.
Key Takeaways and Encouragement
[20:55] Come and talk to me and see how I can help you in your journey. So what were the three things that we looked at today? The first one is stigma feels like you’re protecting somebody but ends up in you isolating yourself.
[21:11] The second thing that we kind of looked at today is your loved one is worthy of being seen and included throughout their journey in the body of Christ. And your role is not random. It is yours for a specific reason. And it’s okay to ask for help. You’re not just caregiving. This is a part of your journey. This is a part of your sanctification. You do not need to do it alone. And I try to remember, I’m doing better at it. I try to remember to end all of my podcasts with this, which is my prayer for you. May the Lord bless you and keep you. If you like these episodes, please share them with other people. It means the world to me. You can email me. You can email me questions. I am here to serve you and show you that there is hope, but the hope isn’t here. The hope is in eternity. Yes, dementia is hard. And yes, there are things that you can do to make it easier. And yes, Christ is on his throne, and we have nothing to fear.
[22:36] So share these episodes, like, and subscribe. I will see you in the next episode where we are going to continue to talk about why hiding your dementia diagnosis is so, so harmful for you as well as the person that you are helping.
