FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

Click to play

Why It Is Important to Tell People Someone Has Dementia

Are you struggling with the decision to tell others about your loved one's dementia diagnosis?

This question opens the discussion on a topic many caregivers face: the importance of sharing that someone you love has dementia. In this episode of "Dementia Caregiving for Families," we explore this sensitive yet crucial issue.

2:26 Importance of Communication in Caregiving

7:08 Early and Frequent Communication Strategy

10:34 Looping in Closest Family and Church Leadership

13:22 Involving Employer, Colleagues, and Neighbors

16:28 Dealing with Lack of Awareness in the Person

19:12 Communicating with Healthcare Providers

23:18 Easing Dementia Care Challenges

27:30 Destigmatizing Dementia Discussion

31:23 Recap: Start Early and Speak Often

Breaking the Silence

It's common to feel ashamed or protective. Many caregivers worry about how others will see their loved one or want to respect their dignity and autonomy. However, keeping the diagnosis a secret often leads to isolation for both the caregiver and the person with dementia. It also increases stress and the risk of burnout.

Early and Often: The Key to Support

Start early and speak often. Informing others about dementia early helps in creating a support network. Close family members may not notice changes immediately, especially if they aren't around frequently.

By communicating your observations and concerns, you can prepare them for what's ahead. This also aligns with the Biblical principle of bearing one another's burdens, as mentioned in Galatians 6:2.

Building a Network

Begin with those closest to the person. Family members, especially siblings and adult children, should be informed first. Use tools like video calls for discussions. After family, involve your church leadership. Pastors, elders, and deacons can offer spiritual and practical support.

If you're still working, let your employer and colleagues know. There are legal protections like the Federal Medical Leave Act (FMLA) that can help you balance work and caregiving.

Safety in Numbers

Neighbors and authorities should also be aware. This is especially important for safety reasons, as wandering is a common issue. Informing them can create a community of watchful eyes, helping to protect your loved one.

Recognizing Denial

Anosognosia is a condition where the person with dementia cannot see their own impairment. This isn't denial; it's a lack of awareness.

Having private conversations with others without the person present can be necessary. This ensures that important information is shared without causing distress or arguments.

Effective Communication with Healthcare Providers

Doctors might dismiss symptoms as normal aging. However, true memory loss isn't a part of normal aging. If your concerns aren't addressed, consider finding a more responsive doctor.

Prepare a concise list of observations to share with the healthcare team. This proactive approach ensures that your loved one gets the necessary attention and care.

De-Stigmatizing Dementia

Talking about dementia helps reduce the stigma. Unlike visible physical disabilities, dementia is a hidden condition. By discussing it openly, we can foster understanding and compassion. This societal change starts with family caregivers who share their experiences and educate others.

Conclusion

This episode emphasizes four practical tips:

1) Start early and speak often.

2) Inform those closest to you first.

3) Understand that the person may not see their own condition.

4) Communicate effectively with healthcare providers.

By following these tips, you can build a supportive network, reduce stress, and provide better care for your loved one. Join our free workshop for more insights and support.

Let's continue this journey together, easing the burden and finding peace amidst the challenges of dementia.

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

a group of hands holding each other | Why It Is Important to Tell People Someone Has Dementia

Why Share about Dementia?

[0:00] Do you feel embarrassed about the person that you're helping living with dementia? Do you feel ashamed maybe that they have dementia and don't want to tell other people what's going on? Do you want to try to protect the person, their autonomy, and their dignity by not sharing with other people what you're experiencing? If that sounds like you, then this episode today is 100% for you. Episode 127, why is it important to tell people someone you love has dementia? And I am excited to dive into this topic today. It is near and dear to my heart. So check out today's episode.

[0:59] Have you recently found out someone you love has dementia? Struggling to wrap your head around how to be a Christian caregiver? Searching for answers by joining countless Facebook groups but find them toxic? Learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy. Hey, brother and sister in Christ. I'm Lizette, occupational therapist, pastor's wife, turned dementia coach, and a daughter of dementia. In this podcast, you will learn the truth that the way to make dementia care easy is your faith. Knowing that a loving God has decreed this hard Providence in your life makes all the difference. Here you will gain skills. You will be challenged by what God says in his word about caregiving and you will learn exactly what dementia is and is not. Find clarity and certainty from God's Word so you have perseverance for this journey. Use science-backed solutions, and biblical principles to redeem your time. Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia.

a woman sitting on a couch with a woman holding her hand | christian family caregiver with her |mom | Willing Sacrifice of Caregiving

Importance of Communication in Caregiving

[2:26] What's up, Christian caregiver? It's Lizette, your dementia mentor, and you are listening to Dementia Caregiving for Families. It's the show where I teach Bible-believing Christians how to ease the burden of Alzheimer's and dementia care by speaking dementia and planning ahead head so that you can decrease your stress and get back your time despite a dementia diagnosis. Today, we are going to talk about something that is very close to my heart and is coming up more and more frequently as I work with people in my group, and that is why is it important to tell people that someone you love has dementia.

[3:21] And I have noticed this frequently over the last year when I am talking to people that somebody they know or they love or they're helping has some form of cognitive impairment. And frequently the follow-up statement is, but I don't really want other people to know. And although that is a noble goal, I wanted to talk about that a little bit today, because it actually sets us up for failure. So how does it set us up for failure? So I know that many, many people who are helping somebody living with dementia feel shame or embarrassed about the fact that the person that they are helping has either cognitive impairment or a dementia diagnosis.

[4:15] Some of the reasons for that is they don't want people to see the person that they love in a different or an unflattering light. They may not want others to know because they want to protect the person who is living with dementia. They want to protect their dignity. They want to protect the person's autonomy. autonomy they may also feel like if they don't say anything about the person's cognitive impairment other people might not notice and I know it was something that I struggled with in the sense of you want to try to honor the person that you are helping and not tell other people what's going on because you want to be respectful and honor them. And the problem with this is that ultimately, this results in isolation of the person who is taking care of somebody living with cognitive loss, as well as isolation of the person living with dementia. And it also increases the stress and the burden of the person who is trying to manage alone. By the time a person who has been navigating this journey for a year or two or three.

[5:43] Starts to actually then tell other people that they are helping somebody who has cognitive loss, you're very close to burning out. And what happens then is it actually becomes very difficult to walk back from that. Once we get to that stress and overwhelm phase, walking back from that is possible. It absolutely is possible, but it is significantly harder than if we put strategies and things in place sooner. Galatians 6 verse 2 talks about bearing one another's burdens and thereby fulfilling the law of Christ. And so what I'm asking us to consider as we are Christian caregivers of somebody living with cognitive impairment is to bear one another's burdens. So today we're going to talk about why is it important to tell other people that someone that you know or love has dementia. And we're going to look at it in four practical tips. The first thing we're going to talk about is that you need to tell people early and often.

Early and Frequent Communication Strategy

[7:08] Even though other people might not see the person's cognitive loss yet.

[7:16] You need to tell them what you are seeing because frequently what happens is specifically in in situations where there are families like.

[7:28] Sibling sets or, you know, it's brothers and sisters caring for parents or sibling sets caring for a brother or spouses caring for a spouse that they have children or there may be blended families.

[7:46] What happens is the people who are living with that person frequently see these changes significantly earlier than people who are intermittently around the person living with dementia. I'll use myself and my sister as an example. I was aware of my parents, specifically my father's cognitive changes, probably about two years ahead of my sister. And I mentioned it to her. We continued to talk about it. I would tell her what I would see.

[8:22] She lives out of state, so she wasn't as close to them. She would speak to them on the phone. In those conversations, things might not come up that she would actually notice. But the reality of the matter is, over time, if somebody truly is struggling with cognitive impairment, other people are going to notice. It does get to the point where it is almost impossible for family to not recognize that something's going on. So despite the fact that other people may not be noticing what you're noticing, you need to start early on and speak often to them about what it is you're seeing. But don't argue with them. If they don't see it, they're not going to see it at that moment. So you just have to be patient and understand that it's like the old story that you can lead a horse to water, but you cannot make him drink. The same thing related to cognitive loss. You can present your family with the facts that you see. You may have taken the person to the doctor. You may have an actual diagnosis.

[9:43] You might just notice a lot of things that they're not noticing, and you're telling them, but they may not notice. And if that happens, I recognize how frustrating and how hard that is as a family caregivers, specifically if you're the one providing the care. But arguing with somebody who is not ready to see it at that time isn't really a solution, nor will it actually make them see what it is that you are seeing. So.

[10:17] Just be patient if they don't see it. If the person you are caring for lives long enough, at some point, it will not be able to be hidden.

Looping in Closest Family and Church Leadership

[10:28] So we have time, but you need to start early and you need to speak often. The second strategy or practical tip for today is when you are telling people around you that somebody you know and love has dementia.

[10:48] You have to start with the people closest to that person, and then you work out concentrically outwards from that. So what does that look like? If it is a husband and a wife, you need to loop in the children, the adult children. You need to specify to them specifically what it is that you're seeing. If you are adult children dealing with parents who are starting to have cognitive impairment, you loop in your siblings, you bring in the people, you talk to everybody. It has become very easy nowadays for almost anybody to have a way to face time or set up a meeting, either using Google Meet or Zoom's free accounts, or there are multiple different ways, Facebook Messenger, schedule a time, have a face-to-face conversation.

[11:48] With your siblings, with the siblings of the people, whoever that inner circle is, let them know. And back to point number one, don't argue with them if they don't see it. Just present them with the facts as you know them to be. And then after you have talked to the people closest, the family members, specifically if you have a diagnosis, if you've gotten a diagnosis, the next place that you need to consider starting to speak early and speak often is with your church's leadership and the deacons, the elders, the deacons, the pastor. Those are the people who are mandated and who are there to help you through this journey from a spiritual perspective.

[12:41] There are strategies and things that can be implemented from a church leadership perspective to help you. But if the church leaders do not know, if the pastor doesn't know that you're struggling with somebody who is living with cognitive loss, then they cannot reach out and help you. And what ends up happening, unless you're in a very close-knit group and a small group, it's easy for you to isolate yourself and the pastors reach out and ask what's going on. But if they don't truly have a good picture of what you're contending with, they may not be offering you the help and the support that you need.

Involving Employer, Colleagues, and Neighbors

[13:23] So speak with your church leadership and deacons. Then you need to, if you're still working, you need to loop in your employer and your colleagues and your friends and your neighbors. You do need to talk to people about what's going on. If you are still working, like 60% of family caregivers of somebody living with dementia are still working 30 plus hours a week, you do need to speak with your employer and find out what strategies you can implement in protecting your job so that you are not counted absent or get yourself in trouble because you have to take time off from work to take somebody to the doctor, those kinds of things. There are strategies called Intermittent FMLA, Federal Medical Leave Act. An intermittent FMLA means that you have, you can take, by law, you have up to 12 weeks of medical leave at a job once you've qualified for that. You can take intermittent FMLA, which means you can take a couple of hours here, a couple of hours there, and don't jeopardize your work.

[14:41] If you are still working as a family caregiver. So then loop in your family, friends, colleagues, boss, start with human resources, really be proactive about telling people what you are helping somebody with. And very importantly, you do need to consider telling your neighbors.

[15:02] Not necessarily all the neighbors, but you need to be able to let your neighbors know what's going on specifically as things are changing over time from a safety perspective, because about 80% of people who have dementia will wander away from home at least once in their dementia caregiving journey. So having your neighbors, your closest neighbors, geographic neighbors, know and and understand what is happening, even though it hasn't happened, is a safety strategy so that you can protect the person in case they get confused and they wander away from home. And I didn't put this in my notes as I was preparing, but also you need to consider letting the authorities in your area know that you are helping somebody living with dementia so that if something happened, they are aware and not ignore it from a perspective of this is an adult because this is now an adult who has a specific problem that we need to protect them should something happen. So that's just an aside.

Dealing with Lack of Awareness in the Person

[16:28] The third practical tip for today is you need to recognize or know that the person who has dementia may not see it at all.

[16:43] And so you might need to have private and separate conversations without them there with the people that you need to inform. Form because about 80% of people who have cognitive impairment and dementia have what is known to be anosognosia, which literally means they do not have the ability to see that there's something wrong. In their mind, they have nothing wrong with them. They cannot recognize the fact that their brain is changing. And it's kind of like a person who has had an amputation and forgets that they've had an amputation and gets up and tries to walk and there's no longer a leg.

[17:43] So it very frequently happens that the person living with dementia or living with cognitive of loss does not see it or recognize it. So when you are talking to your family or when you're speaking to church leadership, you might have to have these conversations in private, separate conversations without them there. And it's not because we're trying to hide this information from them. But because when somebody really cannot see that something is wrong, they...

[18:21] Will try to argue with you and try to reason with you that there is nothing wrong and ultimately you cannot reason with a person who has cognitive loss. It is a futile thing to try to reason through when somebody's brain is not working the way it always has been working. So the medical term is anosognosia, and it is not the same thing as denial. They are two totally different things, but anosognosia is a real condition that happens with strokes, with head injuries, with dementia, that the person doesn't have the ability to see the problems that they are having.

Communicating with Healthcare Providers

[19:13] And the fourth practical tip that we're going to talk about today is speaking with healthcare providers. Now, that can be a significant challenge for us at times, and I recognize that. I'm a recovering healthcare provider. I'm an occupational therapist by background and training, even though I'm not practicing as an occupational therapist anymore. I did for over 30 years, so I'm very familiar with how to speak to health care providers. But one of the things that I want you as a family caregiver to know is that many, many doctors will tell you as the family member that what you are seeing is just normal aging.

[20:07] The reality of the matter is short-term memory loss is not the same as being forgetful every now and then. They're two totally different things. And truly not being able to remember something is not normal aging. Why do I say it's not normal aging? Because all of us have had hundreds of stories that we can tell over the decades of Aunt Susie who lived to be 99 years old, smoked like a chimney and drank like a fish and had nothing wrong with her. And her thinking processes never changed. We all know people who are older adults who never have changes in their thinking processes other than maybe slowing down a little bit, taking a little longer to learn new information, but not having memory deficits.

[21:11] So a lot of doctors, when you you will speak to them at the beginning, will tell you, oh, what you're seeing is just normal aging. And I strongly encourage you to remember that memory loss, true memory loss, is not normal. It is not normal aging. And so if you can have a conversation with the healthcare provider, either your parent's doctor or your spouse's doctor, without the person there, that would be wonderful. However, I know that that is not always a realistic expectation to be able to have those conversations without the person there.

[21:58] So if you're not able to do that, what I would love to encourage you to do is to write a note, not a book, but a very short, brief summary. And the more bullet points you can give, the better. Write it out. I've noticed my dad doing this, this, this, and this. And be specific. I've noticed my dad is forgetting to take his medication three times a week because I set it up he isn't but it's an example or I've noticed several times when we go over there to eat that he's forgotten to switch the stove off or we're starting to notice whatever it is They keep repeating the same questions.

[22:50] Whatever it is that you are noticing, give it to the nurse when you take the person in. And ask the nurse to give it to the doctor to review it before they come into the room. And then you have prepared the doctor at least to be open to seeing or maybe

Easing Dementia Care Challenges

[23:15] trying to figure things out a little bit further. Did you know that caring for a person with dementia doesn't have to be this hard? If you are struggling and you would like to join our next free workshop, The topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout. I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop on Saturday. If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[24:17] So if you go to the doctor with the person that you are helping and your gut is telling that something is wrong and you do not get a positive response from the doctor related to your concerns, related to the person that you're helping, then you need to strongly consider getting a different doctor.

[24:44] Because ultimately time is brain. We all know this. We get taught early on, everybody, most people are taught that if you have signs and symptoms of a stroke, you get your anatomy to the doctor, to the ER immediately. Do not pass go. Do not collect 200. You go to the ER because we recognize that your brain is dying. Well, the reality of the matter is that when you are starting to have changes related to dementia, it is your brain starting to change and time is brain. And so there are things that can be done to help you change your lifestyle, change your habits, work on cognitive activities.

[25:37] There are some medications that may be more effective in preventing dementia. So there's a lot that can be done, but the reality is that we are waiting too late and we're losing the window of opportunity to build resilience in people's minds to really do things that can affect a practical radical change, maybe not in the fact that the person has dementia, but perhaps in defraying or delaying the ultimate impact or the quality of life a person living with dementia and their family are experiencing. So if you.

[26:28] Or a family caregiver, and your gut is telling you that there is something wrong, and the doctor that you're taking the person to is not being responsive, I beg you to consider finding another doctor. And I recognize that that is a big ask. I know it is hard to get into doctors. I know it takes time to get appointments, but squeaky wheel does get the oil. So if you're not willing or it's not possible or there are other factors related to not switching doctors, then you really need to work on trying to convince the physician that something is wrong and get the person that you are helping some help. So to conclude today's podcast episode, I really want to touch on the following

Destigmatizing Dementia Discussion

[27:23] real briefly, because this is something that's becoming more and more a burden on my heart. And that is the stigma of dementia related to people living with dementia, because stigma is never, ever, ever going to go away unless we, the family caregivers, the people who are helping somebody living with dementia start talking about it.

[27:54] We do not stigmatize somebody who has a physical impairment like an amputation. We see that the person has lost their leg.

[28:06] They've lost their arm. We know somebody has a spinal cord injury. They're not able to walk anymore. And they are not being stigmatized because of these physical changes that they're happening, that they have had happen. The reality of the matter is dementia is a physical change to the brain. We just cannot see it. Our brain is broken. The wiring is not working as it always used to. But because a person's personality.

[28:45] Their intellect, their personhood, for lack of a better word, is very much thought to be housed in how we think, our memories, and how we communicate with with other people, all of that comes along with our thinking processes. And so one of my biggest desires is to really de-stigmatize dementia, but the stigma is not going to go away unless we start talking about it because you cannot see a broken brain. And then also something else I want you to be aware of, and this is oftentimes for the primary family caregiver, one of the most frustrating things is that sometimes you are the one that sees what's going on and other people do not see it because the person living with dementia is able for a short period of time sometimes to really hide it and mask it well when there are visitors or when they're talking on the phone with that other sibling or your sibling or another family member. So it sometimes...

[30:03] Not evident to other people, which makes it hard for you as the primary caregiver because you see what's going on. But back to point number one, arguing with people who are not ready to hear or see this yet is not something that is helpful to you. Just file it away, Let it be like a duck. Have it roll off of your back and know that if the person is truly having these changes, that over time it will not be able to be masked anymore. more. And just be patient, but keep talking about it. Keep telling people what's going on, not to be argumentative, not to try to embarrass the person that you're helping, but truly from an awareness perspective that something is going on. We as a society need to change how we think about dementia before it is going to get easier for the family caregivers of people living with dementia.

Recap: Start Early and Speak Often

[31:17] So a quick little recap of today's episode. We talked about four practical tips. Number one being start early and speak often. Number two, start with the people people closest to you so that you can start to really bring people along with you.

[31:37] Number three, know that the person you are helping may never see it, and that is called anosognosia. And number four, know how to speak to healthcare providers, and we talked about a couple of tips to help you through that.

[31:55] And lastly, I'm so proud of you for being here and listening to this podcast related to dementia because the more we talk about it, the less stigma there will be for you as well as the person that you are helping. So I would love to invite you, if you have not yet attended one of my free workshops, I do a monthly workshop every single month where I talk about challenging behaviors, and we give you five tips to manage challenging behaviors. The next one is this coming Saturday, June the 8th at 10 a.m., and I invite you to register for the next workshop. The link is in the show notes below, and I look forward to having you there.

[32:51] Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you. You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families. It's a positive and proactive space to navigate dementia caregiving together. Get practical tools and find support but without the verbal vomit. Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis. So join today and see you next time as our flight takes off.

lizette as a family caregiver

Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

Join our Facebook Group at: https://www.facebook.com/groups/1301886810018410 

Become a  Member of Our Exclusive Program!  https://www.dementiacaregivingmadeeasy.com/start

Subscribe To Our Newsletter

About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

>
Success message!
Warning message!
Error message!