How To Tell My Loved One They Have Dementia: Resources for Caregivers
One of the most challenging aspects of caregiving is telling your loved one they have dementia. How do you approach such a sensitive subject with love and clarity, especially when denial or lack of awareness plays a role?
In this episode, we address this question and offer compassionate guidance rooted in both practical wisdom and faith.
Understanding Anosognosia and Denial
One of the key concepts in this episode is anosognosia, a condition where a person is unaware of their illness due to physical changes in the brain.
This is common in dementia, with studies showing that as many as 80% of individuals with severe dementia experience it. Unlike denial, which is a psychological defense mechanism, anosognosia is a result of brain impairment.
This lack of awareness can lead to delayed diagnosis, noncompliance with treatment, and risky behaviors like unsafe driving.
Understanding the difference between anosognosia and denial helps caregivers approach their loved one with greater empathy and patience.
How to Tell Someone They Have Dementia
1) Start with a Gentle Approach
Use soft and reassuring language when sharing the diagnosis. Meet them emotionally where they are, ensuring they feel supported and cared for.
2) Reassure Them of Your Support
Let them know they are not alone. Phrases like, “I will be with you every step of the way,” can help ease their fears.
3) Be Prepared for Different Reactions
Some may accept the news but forget it later due to memory loss. In such cases, be ready to repeat the conversation lovingly and patiently. Others may react negatively or resist the idea entirely. If this happens, avoid pushing them to understand their condition, especially if anosognosia is present.
What Not to Say
One important takeaway from this episode is to never promise something you may not be able to keep, such as, “I will never place you in a care facility.”
Instead, assure them you will do everything possible to ensure they are cared for and supported. Making unrealistic promises can lead to guilt and heartbreak if circumstances change.
The Key to Effective Dementia Caregiving
The foundation of all effective caregiving lies in the relationship you have with your loved one. A strong, loving bond fosters cooperation and trust, while a rocky relationship can make caregiving more challenging.
By focusing on maintaining and strengthening your connection, you create a safer, more supportive environment for your loved one.
A Call to Dementia Caregivers
Are you struggling with how to communicate with your loved one about dementia?
Remember that you are not alone. Seeking guidance, whether through professional support or faith-based resources, can make a significant difference in your caregiving journey.
Upstate Nonprofits Receive Funding Boost to Expand Dementia Services.
Ever Wonder How To Know What Is Causing Your Caregiver Stress?
Take Our FREE Caregiver Stress Assessment Today!
https://www.dementiacaregivingmadeeasy.com/dca
Transcript
[0:00] Hey, Christian caregiver. Welcome to Dementia Caregiver Support for Christians, the podcast where I teach Bible-believing Christians how to make dementia care
Podcast Changes
[0:11] easier today while also focusing on tomorrow.
[0:16] Today is December the 3rd, which is a Tuesday and is the beginning of the change of the cadence of this podcast from three episodes per week to two episodes per week based on feedback from listeners just like you that they haven’t had enough time to actually listen to the podcast, reflect on the content, and implement it in their life. And so to make it easier for you as well as to serve you at a better and higher capacity. The episodes will now be going out on a Tuesday and a Friday. And I think you are going to enjoy the change in the podcast, the change of the speed of the podcast, the topics that we are going to be covering in the podcast. But today’s episode is in relation to or due to a question a person recently asked in my Facebook group or the Facebook group Dementia Caregiver Support for Christians. So if you’re not a part of the Facebook group, that is another place that you
Telling Loved Ones About Dementia
[1:31] can connect with me and where you can get caregiver support specifically for Christian caregivers.
[1:38] And so the question was, how do I tell my loved one that they have dementia? Or how to tell your loved one that they have dementia. Nobody likes getting bad news, do they? I don’t know how many of us have heard the saying, but I think most people have. The old saying that no news is good news. And I’ve always struggled with that saying because which is it? No news is ever good or not hearing anything is good news. So no news is good news. Now as a recall, recovering healthcare provider. And I really laughed at myself when I came up with that term, recovering healthcare provider, because it has taken me as a 30 plus year trained.
[2:28] Skilled occupational therapist over a year and a half to untrain my brain to not just think in terms of a healthcare provider because healthcare providers have a very narrow and limited view of dementia and dementia caregiving. And so as a recovering healthcare provider, for many years when I was working, I really struggled when working with families of people living with cancer to figure out or understand why sometimes at the end of a person’s cancer journey, why sometimes the person as well as the family seemed so surprised that the person was dying of cancer, that they had a terminal cancer diagnosis. I always wondered, has the doctor not told them? Has the doctor not told the family that the outcome of this particular cancer is going to ultimately be end of life? Or did the person and the family not hear them, not hear the doctor. And so to be fair to doctors, I do believe it is a combination.
[3:47] I do believe some doctors elect not to tell the family how serious a journey, how serious a diagnosis it might be.
Understanding Anasognosia
[3:57] And I think sometimes the family is just not able to hear. So how on earth does this conversation about cancer relate to dementia and me telling my loved one whether or not they have dementia?
[4:13] Dementia is different in this respect. There is a thing, a condition, a medical term called anasognosia, and I’m going to spell it for the people who are nerds like me.
[4:30] Anasognosia, S-O-G-N-O-S-I-A, anasognosia, which literally means the unawareness of one’s own illness, symptoms, or impairments. And it is a result of the actual physical changes to a person’s brain. Now, I’ve read research that says about 60 to 80% of people living with dementia have anisognosia. Earlier today, as I was preparing for the podcast recording, I read a study that said 10% of people with mild dementia have anisognosia and 80% of people with severe dementia have anisognosia and it increases with the severity of the changes, the physical changes of the person’s brain. So the longer the person has dementia and the more the physical changes occur to the brain, the less awareness the person might have of their own symptoms or impairments. So this brings up the other side of the coin, which is denial. What is denial?
[5:50] So denial is not the same thing as anisognosia, but for a lot of people, it looks like it is. Denial is our psychological soul, inner person’s defense mechanism that when we’re not ready emotionally to deal with something. It is our brain protecting us from dealing with something that we’re not ready to cope with. So back to my patients and people sometimes living with cancer, I believe a lot of them are in denial of what they have been told because they’re not yet able to process that information. So what does anosognosia result in for a person who is living with dementia? Well, it can result in diagnostic delays, because why would I go get a diagnosis of something that I don’t think there’s anything wrong?
[6:55] I wouldn’t, which makes it very hard. And one of the reasons I believe that diagnosing dementia is difficult because people have an unawareness, an inability to see their own impairments. What that also results in is a lack of compliance then with following a treatment protocol. Because if there’s nothing wrong with me, why would I need to be treated for something? And the third thing it could result in is increased risky behaviors.
[7:27] Things like driving, things like being scammed, those kinds of things, increased risky behaviors because there’s nothing wrong, right?
Approaching the Conversation
[7:36] If I don’t believe that there is anything wrong with me, then those three things can happen. So how do you tell your loved one that they have dementia? Do you tell them? Do you not tell them? And if you decide to tell them, and I think you should tell them, how do you tell your loved one, they have dementia. The very first thing I would recommend you do is you do it in a very soft, gentle approach. When you tell them the information, you reassure them and meet them emotionally where they respond.
[8:14] You need to reassure them that it doesn’t matter what happens, you will be there for them and that you will help them every step of the way. Most people are now aware or have known somebody who lives with dementia. So for many people, it can be very scary because there is such a tremendously negative narrative in the world about dementia and dementia caregiving, which is one of the reasons I do this podcast every single week is because I want to change the culture. I want to change what people think about dementia. I want to change how people respond to dementia.
[8:59] So start with the soft and gentle approach. You will have one of two responses. You will have the response of the person seeing it, understanding it, knowing what is going on, but then likely not remembering afterwards because most people with dementia have difficulty with their short-term memory and that you will need to repeat it as frequently as they ask. So if they ask you what’s going on with my brain and they responded well when you told them, then you softly and lovingly and gently remind them that their brain is changing and you repeat it as frequently as they ask.
Responses to the News
[9:44] But that is if they have an awareness that this is going on. The alternative response is going to be.
[9:53] Didn’t go well at all. And if it doesn’t go well, you have to assume that the person has anisognosia, not denial, anisognosia. And then you need to consider stopping to try to reason your way into them, quote unquote, knowing that they have dementia. And the reason you need to consider stopping trying to get them to understand that they have dementia is because it serves no purpose at all. The only likely result that you will get from trying to reason the person into understanding that they have dementia is a shattering or a breaking of your relationship. And as a recovering health care provider.
[10:46] One of the biggest differences that I now know to be true is all effective caregiving stems from the relationship that you have and have had with that person over time. So if you’ve had a good relationship, you have the basis of effective caregiving. If you’ve had a very rocky and difficult relationship, you have the basis of a very rocky and difficult caregiving journey. That can be a totally different episode on a different day because there are things we can do to mitigate that, but it doesn’t serve any purpose at all for us to reason our way into the person
What Not to Say
[11:33] living with dementia, knowing and understanding they have dementia if they have anisognosia. So what are some things that you should never.
[11:44] Ever do. And I want you to pay attention, come back to me, listen very carefully, just for a couple of minutes. Never, ever, ever, ever do you need to say, I will never put you in a facility.
[11:59] A skilled nursing facility, a memory care, a home, or anything like that. The person may want you to reassure them that they can stay at home, but you have no idea whether that is or is not going to be possible. There are a lot of things we can do if it is your choice and decision to keep someone at home, but you should never promise that you will keep them at home. That is an unrealistic promise that you may not be able to keep and that if that were to happen in the future results in you feeling guilty for making a promise that you then could not keep. So never ever say, I will never put you in a facility, a home, or anything like that. Just say to the person, I am going to be there for you. I will help take care of you. I will make sure that you are taken care of. You do not need to be worried about any of that.
Reassurance Strategies
[12:54] I will be your person. What can you always, always do? And this is the best, best strategy for every struggle we have as caregivers is reassure them, that you love and care for them, and that you are going to take care of them.
[13:14] Meet the person emotionally where they are. So if these episodes resonate with you, and if you are truly struggling with something very specific, I invite you to go to the website thinkdifferentdementia.com and schedule a strategy call with me. They’re 20 minutes.
[13:39] There’s no obligation. I can see how we can work together.
Individual Support Opportunities
[13:43] We can dialogue for 20 minutes. You can get a little bit of individual caregiver support. I will point you in the first next step or direction you need to take in your particular situation. So if you are ready for that level of commitment, for that level of involvement, go to the website, schedule a strategy call and let us see how we can point you in the next best right direction and come back again on Friday. If you have a family member that has been trying to reason with your loved one and trying to make them know or understand that they have dementia, share this episode with them. Anasognosia is very common and is not something that everybody knows or understands. So share these episodes with them, like, and subscribe. You can connect with me on YouTube at Dementia Caregivers Support for Christians.
Closing Thoughts and Community Support
[14:44] The free Facebook group, Dementia Caregivers Support for Christians. And as always, come back on Friday for our Dementia Caregivers Support in Action episodes, which is another change, but these are little snippets of live coaching to be able to show you that you’re not alone, that other people are experiencing similar or the same situation, and you can learn from their particular stories. So as I end all my episodes, may the Lord bless you and keep you, and I will see you on Friday.
