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How to Know What to Do First When Someone Is Diagnosed with Dementia

January 04, 202424 min read

Do you feel overwhelmed by a loved one's dementia diagnosis? Are you wondering where to begin and how to cope?

Receiving a dementia diagnosis for a loved one can be a profound shock. It's a moment filled with a range of emotions, from disbelief to concern.


This episode reminds us that these feelings are normal and encourages listeners to take a moment to breathe and process this new reality.

0:02:04 Understanding What to Do After a Dementia Diagnosis

0:06:12 The Importance of Taking a Breath and Analyzing the Situation

0:09:08 Analyzing the Desired Outcome and Planning Ahead

0:13:36 Negative Facebook Groups and the Importance of Selectivity

0:15:11 Taking One Step at a Time in the Dementia Caregiving Journey

The Importance of Building a Support System

You don't have to walk this path alone. Establishing a strong support network, including family, friends, and online communities specializing in dementia care, is vital.

Sharing experiences and seeking advice from those who understand can be incredibly comforting and informative.

Planning for the Future

Early planning is key in dementia care. This includes legal and financial preparations, as well as understanding the evolving needs of your loved one. This episode guides listeners through the importance of being proactive rather than reactive.

Embracing the Journey with Positivity

The journey of dementia care is often long and unpredictable. Embracing each step with patience and a positive outlook is essential. Focusing on what you and your loved one can still enjoy together helps maintain a sense of normalcy and joy.

Seeking Professional Advice and Resources

Professional help can provide clarity and direction. This episode highlights various resources available for caregivers, including healthcare professionals, support groups, and online platforms offering practical advice and emotional support.

The Power of Community

Joining communities that foster a positive and proactive approach to dementia care can be incredibly empowering. Sharing experiences, challenges, and successes with others in similar situations creates a sense of camaraderie and collective wisdom.


This episode is a beacon of hope and guidance for those beginning their journey in dementia care. It advocates for acceptance, strategic planning, and finding strength in community and positivity. This approach helps caregivers navigate the complexities of dementia with resilience and love.

By embracing these principles, caregivers can find a balance between caring for their loved ones and taking care of themselves.

Enjoy our podcast? Please take a moment to leave us a review on Apple Podcasts—it really supports our show!

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Reflecting on Aging and Upcoming Birthday

[0:01] Happy, happy new year, my friends. Today is January the 1st, 2024.

I can't believe it. I'm only 53 for three months in the year because January rolls around and then the calendar rolls around and then I'm like, oh, I'm 54.

Well, I will be later this year, but my brain works that way.

Today's program is how to manage dementia-related anxiety during this new year.

And I bet you have no idea what I'm going to talk about because it's not just related to the people that we're helping.

So tune into today's episode and I will see you on the other end.

[0:47] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path.

You're in the right place. On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program. So buckle up while this flight takes off.

Managing Dementia-Related Anxiety During the New Year

[1:42] Well, welcome back to Dementia Caregiving for Families. Welcome to 2024.

This is the first episode in 2024, and it is episode number 70.

And thank you so much for joining me today.

I'm very excited about today's topic.

Today's topic that we're going to address is how to manage dementia-related anxiety during the new year.

[2:10] I thought I would start off this new year with a story about my very, very first patient that I had in South Africa as a student.

We have a facility in South Africa called Veskopis, which literally meant the Western Hills, but its other name wasn't so nice.

It was called Krundakis, which for everybody who lived in South Africa meant the loony bin.

So everybody knew that if you were hospitalized in Veskopis, that you had some sort of a problem with your psychiatric or your mental health, et cetera, which is hindsight, you know, Very unfortunate because a lot of people, I think, who have dementia ended up in Vescopes.

But I was young and dumb, and I really did not realize that.

Well, my very first patient that I ever had there, I will never forget her. She was petite.

She was small. She was slight. She was very scantily dressed, and she was anxious out of her mind.

She walked back and forth up and down the hallways and the hallways were those cold institutional type settings huge big hallways long open clanging noises.

[3:37] Very depressing extremely depressing and I will never forget her because I didn't know what to do with her she would walk up and down the halls and then she would stop in front of you and say say, I'm so tired. I'm so very, very tired.

I'm so tired. I'm so very, very tired.

And 30 years later now, I actually know what I could have or should have done with her because she was anxious, and she was looking to make connection with me, and I was not there.

[4:12] Smart enough at that time, or I hadn't had enough experience at that time to really know how to help her.

Reflecting on Past Experience with Anxious Dementia Patient

[4:19] But what we're going to talk about today, we're going to fast forward to today, where the question is, how do we manage dementia-related anxiety during this new year?

So the first question is, what is dementia-related anxiety?

There are two types of anxiety that come with dementia and one is we think we tend to always think of the person living with dementia so one is the anxiety related to the person living with dementia but then there's also dementia related anxiety of the person who is providing care to the person living with dementia the person with dementia the person that that you are helping, the person that you love who is living with dementia, who has anxiety.

[5:14] What does that look like? Or what kind of things could that look like?

That could look like pacing, like my patient that I explained at the beginning of this podcast, that was walking back and forth, repeating questions over and over, statements saying to me, I'm so tired. I'm so very, very very tired.

It could be things like shadowing because they don't feel safe unless they see the person that they know is the person that can help them.

It could look like just being fidgety. It could look like a lot of different types of behavior.

And I preface the word behavior with with just a description.

It's a description of what we're seeing.

[6:04] A person who is anxious could have a lot of different symptoms.

[6:08] Outside signs that we may not be picking up on related to anxiety because we think of anxiety as looking different, right?

So, a person with dementia can have anxiety for two reasons.

There are two totally different reasons for anxiety in a person with dementia.

One is perhaps because of the actual physical changes that are occurring in their brain. Their brain is changing.

It is not the same as it was before. It is not functioning the same way as it did before.

Part of the change that we might be seeing could be directly related to the physical changes in their brain.

But other reasons a person living with dementia might be having anxiety is because of things that we can control.

And by we, I mean the people around them.

What do I mean by that? Right? So part of it could be, like I said, the physical changes in their brain, but a part of it could be in response to what's going on around them.

What kind of things can create anxiety for you or me? Not knowing what to expect, feeling overwhelmed.

[7:35] Being tired, perhaps. Sometimes I get anxious when I feel like I'm not going to be successful with doing something, or if I pick up on the stress of the people around me.

I'll use this as an example. Many years ago, I ended up in the hospital with some heart palpitations because I was picking up on my husband's levels of stress at that moment in time in our lives, and I had a physical manifestation of anxiety, of stress, because of my picking up on my husband's anxiety and stress.

[8:17] Inadvertently, the people around a person living with dementia can contribute to some of the things that we see, like anxiety, right?

How are other things contributing sometimes Sometimes to the person living with dementia's anxiety, it could be that their brain is not processing all of the stimulation that it is getting.

For example, it is extremely noisy or the people around them don't consider that maybe having the news on in the background, always talking about these negative type things, doom and gloom and woe is me. We have a war, right?

We have the war with Hamas going on. We have the Ukraine going on.

We have stories going on all the time on the TV about a shooter here, things like that.

So the television in the background could be contributing to the anxiety of the person that you're actually helping who is living with dementia but because we are able to tune it out we don't necessarily think that that might be contributing to that person.

[9:30] Other factors so we mentioned the person who is helping them that they could be feeling something something from them because a person with dementia has lost the ability to tune out other people's emotional, they can't control their own emotions, never mind somebody else's emotions.

Factors Contributing to Dementia-Related Anxiety

[9:47] We talked a little bit about the environment, what's going on in the environment, right?

I had a client who I worked with many years ago who would get really.

[9:59] Who needed some downtime. And her dad got a lot of, had a lot of anxiety.

And one of the things that she would do is she would go sit in another room outside of his, outside of his line of sight.

And that actually made him anxious and made him get up and walk to the door and go check on her and come back and forth, back and forth.

[10:20] So the recommendation I had for her is just take your computer and sit where your dad can see you, put some earphones on that he is able to see that you're still there and you can continue to do what you're doing, but at least bring his anxiety down because you're his safety net, you're his safety person.

So as long as he sees you, he feels safe.

So the person that's helping them, something going on in the person themselves, the environment that they are around or in or what's going on in the the environment.

And then activities, how do activities either contribute or not contribute is what we're asking the person to do to difficult and they don't understand and that is creating anxiety in them or are we creating an anxiety in the person because we have taken everything away from them and we don't think that they're able to do anything at all anymore and so they're anxious just because they can't get their energy out or they still have the ability to do these things.

So those are some ways that dementia-related anxiety can come out in the person who we are helping.

[11:32] Let's look at the other side of the equation.

What is dementia-related anxiety for the family caregiver, for the me, or for the you?

Well, we could be anticipating what's coming next context and that we may know that we are at a point in our journey that the next phase of the journey means that we are going to be losing the person that we're caring for, that we love.

And that can be anticipating the, you know, we might have some anxiety because we're anticipating the next step or anticipating the final outcome.

Or we could be extremely stressed, caregiver stress.

Stress is a real thing. Caregivers do experience stress.

One of my biggest contentions is that the health care system actually contributes to the caregiver stress inadvertently.

[12:28] But that is a fact. It's a reality. It's something that we have to deal with.

Caregiver stress comes in a lot of different ways. It's not only related to taking care of the person that we're helping.

It's also caregiver stress and trying to manage all of our other responsibilities and our other relationships and not wanting to damage the future relationship that we have with, say, our spouse or our own children or managing our own health and our own well-being.

So caregiver stress can come in a lot of different forms and formats.

Some of it is because we don't know what we don't know, and so therefore we are stressed because we cannot anticipate what's coming next.

A lot of our caregiver stress comes from trying to balance our roles, trying to parent the parent or parent the spouse, or even in a harder situation, actually being the parent of a child who is living with dementia.

And that's something we don't talk about all that often, but there are parents who are helping their children who are going through a dementia journey.

It is a less known fact that children also do get dementia.

[13:51] And then our own emotional strain, our own emotional stress that we bring with us to the table from trying to do all of these things because we aren't, if we haven't done the right things, we're not balancing everything.

We're not keeping things under control.

Understanding the Results of Dementia-Related Anxiety

[14:13] We're not proactive. And the next thing that we're going to talk about then is what are the actual results of, anxiety, dementia-related anxiety, and then we're going to talk about what we can do.

The results of dementia-related anxiety is twofold.

It is number one on the person living with dementia because I don't want them to be anxious, if at all possible.

And number two, it is on you, dear extraordinary caregiver, dear friend.

We have to consider that there are results not only on the person that you're helping, but on you as well.

What do these look like? Well, it impacts both your quality of life as well as the person you are helping.

And it also impacts your own well-being as well as the well-being of the person that you are helping.

So being able to manage dementia-related anxiety during this new year is definitely something that we need to work on and address and consider.

Strategies for Managing Dementia-Related Anxiety

[15:24] What can we do? That is a really good question.

Back to the lady that I was helping or wasn't able to help 30 plus years ago when I was a new occupational therapist, just still in school trying to figure things out.

I didn't know what to do with her.

But now, 30 years later, there is a lot I could have done with her.

What kind of things could I have done with her? Well, the first one is.

[15:57] I could have become a better dementia detective. What is a dementia detective?

A dementia detective is a person who will step out of the equation, who will take a step back from looking at everything instead of just reacting to it, will try to analyze it and look and see what's going on.

Is there something going on with the person physically?

Is this something that a medication could help? I'm not a proponent for medication as the first line of defense, but if medication can bring down, take the edge off some of the anxiety as a last resort, I'm open to using medication.

But there are a lot of things that we can do that is non-pharmaceutical to help somebody living with dementia in relation to their anxiety. anxiety by being a dementia detective?

What is going on with them? Are they hurting somewhere and therefore they are anxious?

Are they overtired and therefore they are showing anxiety?

Is the person living with dementia overstimulated and therefore they are acting out their anxiety?

[17:15] What kind of factors do we look at? We always start with what's going on with the person And then we look at the environment.

The environment can contribute so much to the behaviors that society calls challenging behaviors.

[17:35] The environment can vastly impact the person living with dementia.

So critically analyzing and looking at the environment and not looking at it from my side, but putting myself in the person that I'm helping's side and looking at the environment.

Are they shivering because they're cold and therefore they're anxious?

Are they anxious because there's a television program on, on, like I said, I hate the television in people with dementia, is the television on, and that's causing them anxiety because there's blood and guts and warfare all on, or they can still hear and understand some of what they're hearing, and they're not able to say, oh, that's the television, it's not here, and they're anxious because of that.

[18:26] What else can it be? The third part of it is, like I said, activity engagement or boredom.

Are they bored out of their skull and therefore they are acting anxious because they need to be engaged or they are overstimulated?

And then the fourth part is always going to be me. What am I doing?

Can they feel my stress? Are they picking up on the fact that I was rushed and I was overwhelmed as I was tearing in the door or to drop off the medication, or whatever the situation might be.

Taking Care of Yourself as a Caregiver

[19:03] So that's how you become a dementia detective, by looking at the person, the environment, the activities, and then you, dear extraordinary care partner, look at you.

What are you maybe inadvertently adding to the equation and stepping outside of it so that you can look at the picture, the big picture?

[19:26] Then the other side what can we do for you right so we're helping the person living with dementia but what can we do for you how can we help you well you can be proactive how do you become proactive you find a community of other extraordinary caregivers who can help you you, who can nurture you, who can be proactive with you, who can help you problem solve and figure out what is going on or what might be contributing and changing one thing and trying something different.

You can be very proactive by putting systems in place, making sure that you have created a nurturing and a structured environment for the person living with dementia.

Dementia it'll help you it'll help them we are very very much creatures of routine you'll hear me talk about routine is.

[20:24] Being a person living with dementia's friend, it is. It's my friend too.

I don't know about you guys, but do you remember when the kids were little and they came in and they interrupted you when you were doing something and you stopped and you helped your kid and then you came back and it's like, what was I doing?

[20:43] And that you have to stop and say to yourself, oh, yes, I was doing this and this and this, and therefore then you can go back on.

Your child interrupted your routine, and so you had to stop and think what your routine actually was.

So systems and routine are your friend.

If you as the primary care partner, if you as the caregiver who is helping somebody living with dementia dementia can put systems and routines in place. It will help you.

And then the third thing, which is something that I talk about a lot and that a lot of people say is too hard for them to do, it is not.

[21:23] This is a marathon, guys. This is not a sprint.

You have to do this. You absolutely 100% in order to be an effective and proactive caregiver to somebody living with dementia, you have to schedule self-care and you have to schedule respite care way in advance how do you do that Lizette well there are a lot of different places that you can that you can do that and I'm not necessarily only talking about paid caregivers yes paid caregivers are a godsend they come with challenges I understand they're not enough people who are paid caregivers and they're not necessarily early, always reliable.

They call out sick and things like that. But if you wait until you need it, by the time you need it, it is too late.

You have to schedule these respite periods earlier on and more frequently than you think.

How else can you schedule respite for yourself?

[22:23] Find a buddy, a buddy of the person that you're helping who can take them out, who can maybe come Come sit with them.

Draw on your church. Ask your deacons to help you set up a caregiving schedule.

[22:36] Find some technology to help you with your own family and designate and delegate for people to come stay with the person that you are taking care of so that you can get some respite care.

Ask. Ask early. Ask often. And be squeaky wheel. Squeaky wheel does get the oil.

I understand that there's a lot of dynamics in family caregiving.

I totally understand that. Been there, done that. Have the T-shirt.

Thankfully, I have a wonderful sister who is extremely supportive of me, but I have seen it in other families so that I know that it is a challenge.

But the reality of the matter is the only way to manage dementia-related anxiety any time of the year, never mind the beginning of the year, any time of the year is by putting Putting structure in place, putting techniques in place, actually learning new skills, learning new techniques, learning how to read the person that you're helping.

Because dementia caregiving is like learning another language.

It is possible to learn another language.

Even as an adult, the reality of the matter is it takes effort.

You have to put in the effort. effort. If you don't put in the effort to make changes, then it's kind of like the old saying.

[23:59] What's the definition of insanity? It's doing the same thing over and over again and expecting a different result.

If you expect the person that you're helping with dementia to change, then I hate to point out to you that that is not a reasonable or realistic expectation.

The person living with dementia has real, live, physical changes to their brain, and expecting them to be the one to change is not going to happen.

So I hate to be the bearer of bad news, but the reality is I have to change.

And I change by becoming a dementia detective, looking at all of these factors that we just talked about, learning and understanding, and being proactive in learning new and different techniques to help me try one thing from today's episode, throw it in the comments, shoot me an email, come visit me in my Facebook group, whatever.

Ever interact with me and let me know what you've tried.

And if you get stuck, please reach out. I'm happy to help you.

I don't know how to help if you don't let me know how I can help.

What I would love for you to do, if you like this episode or if you like any of my episodes, I want you to subscribe to either the YouTube channel, if you're watching this on YouTube, or to the podcast on on whatever platform you listen to, subscribe.

[25:27] I do two episodes a week. They're short. I try to keep them less than 25 minutes.

Today's going to go a little longer.

But I want you to join so that you can join a community of extraordinary caregivers.

What I'm trying to build are extraordinary caregivers that are navigating dementia in a different way.

Not from a reactive, but from a proactive perspective, so that you can protect what's the most important to you, which is your relationships.

Join the Community for Intact Relationships

[26:02] Ultimately, most people who I have been working with, when I've started to really condense this down, what they want from this journey is to come through it with their relationships intact.

So if that's you, dear Dear listener, dear viewer, please join me in this community.

Subscribe, like, share these episodes with other people.

If you are ready to go into it a little bit more in depth, if you are ready to actually become proactive and learn these systems and techniques and tricks and tools that I have developed over 30 years, then you can go to my, you can go to Dementia Caregiving Made Easy forward slash apply and you can apply to work with me. I do work with people.

I work with people one-on-one and I work with people in group settings.

I'm extremely careful of who I bring in to the group because you have to be the right person. This isn't for everybody.

[27:06] I want it to be for everybody, but reality has shown me that this isn't for everybody.

The way I work with people isn't for everybody. You have to be proactive.

You have to be willing to change.

You have to be willing to learn. You have to be willing to try all these different techniques because it's not always the first time that you try something that it works, but we can fix this.

We can solve these problems that you're experiencing.

Apply to Work with Me or Join the Community

[27:37] You just need to know how. So if you're ready, I invite you to apply to work with me.

It's Dementia Caregiving Made Easy forward slash apply.

And otherwise, please like and subscribe and join the community.

All of the information is in the show notes.

So I look forward to seeing you either in my my free Facebook group, or when we hop on a call and do a one-on-one.

I love you, my friends. Happy New Year.

Thank you for being here. Thank you for being extraordinary caregivers.

We've got this, guys. We can do this together. Nobody walks through this life alone. We are all on a journey together.

I will see you in the next episode.

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.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”

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Lizette Cloete, OTR/L CADDCT, CDP

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

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