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How Important Is Monitoring Dementia Caregiver Stress Levels?

Are you tracking your stress levels as a dementia caregiver?

Caring for a loved one with dementia is a noble and challenging journey. But did you know that understanding and monitoring your stress can make a significant difference? Let's explore how.

Understanding Caregiver Stress

Stress is a natural response to life's challenges. For caregivers, it often feels overwhelming. Yet, not all stress is harmful. Identifying and managing it effectively is key.

Stress can motivate us to solve problems, but chronic stress can lead to burnout. For caregivers, stress often arises from uncertainty, changing routines, and increased responsibilities.

Symptoms of Caregiver Stress

Recognizing the signs of stress is the first step towards managing it. Common symptoms include headaches, muscle tightness, fatigue, anxiety, and irritability.

Some signs, like changes in eating habits or sleep disturbances, might be overlooked. Understanding these symptoms helps caregivers address them before they escalate.

The Caregiver Burden Inventory

One tool that can be incredibly helpful is the Caregiver Burden Inventory. This assessment identifies specific areas of stress, categorized into five "buckets":

1. Time-Dependent Stress: 

Related to the time required for caregiving tasks.

2. Emotional Health: 

Impact of caregiving on emotional well-being.

3. Physical Health: 

Physical strain from caregiving duties.

4. Development-Based Stress: 

Comparing oneself to peers not involved in caregiving.

5. Social Relationship Stress: 

Strains on personal relationships due to caregiving responsibilities.

By pinpointing stress sources, caregivers can develop targeted strategies to alleviate them.

Benefits of Monitoring Stress

Tracking stress over time offers several advantages:

Identifying Patterns: 

Understanding when and why stress peaks.

Customizing Solutions: 

Tailoring interventions to specific stressors.

Preventing Burnout: 

Recognizing early warning signs and taking action.

Using tools like the Caregiver Burden Inventory app can provide valuable insights. Regular monitoring helps caregivers stay ahead of stress, ensuring they can provide the best care without sacrificing their own well-being.

Empowering Yourself with Knowledge

Knowledge is a powerful tool. By learning more about caregiver stress and how to manage it, you can transform your caregiving experience.

Joining support groups, attending workshops, and staying informed can provide the support and resources needed.

Practical Tips for Managing Stress

Schedule Regular Breaks: Ensure you have time to rest and recharge.

Seek Support:

Don’t hesitate to ask family or friends for help.

Engage in Self-Care: 

Activities like exercise, hobbies, and relaxation techniques are essential.

Use Stress Management Tools: 

Apps and assessments can guide you in managing stress effectively.

Final Thoughts

Remember, monitoring and managing stress is crucial for both you and your loved one. Take advantage of available resources, seek support, and prioritize your well-being.

Your journey as a caregiver is invaluable, and taking care of yourself ensures you can continue to provide the best care possible.

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 person with their hands on their face | 139. How Important Is Monitoring Dementia Caregiver Stress Levels

[0:00] Did you know that there are actually different buckets of where a particular caregiver's stress is coming from? And that not all stress for caregivers is the same and that there are ways that we can actually track our caregiver stress and be able to use data to decrease our stress levels. Today's episode, we are going to talk about why it is so vital for us as family caregivers to to monitor and actually know what our stress levels are. If you haven't joined my Facebook group yet, I have a Facebook group, a free Facebook group that you can join. It's called Christian Dementia Caregiving, and I look forward to meeting you there where we continue to support you in this experience and on your journey.

Importance of Monitoring Caregiver Stress

[1:06] Hey, Christian caregiver, welcome to Christian Dementia Caregiving, the podcast where I teach Bible-believing Christians where to find help as well as hope for their caregiving journey so you can continue to make memories as well as glorify God despite a dementia diagnosis. This is a very special episode today. we are going to be talking about monitoring caregiver stress and why it is so important in today's episode. I really struggled this past week in so many different respects. And part of the reason for that was my stress levels got way out of control. My stress levels related to my business, to being a wife, to being a mother, to being a friend, as well as a family caregiver of people living with dementia. This past week, we had a whole.

[2:17] Series of medical things that occurred that resulted in me having to adjust my schedule, change how I'm doing things, and help my parents. And so the uncertainty, the.

[2:34] Change in routine, the increased responsibility, all of those different things resulted in my caregiver stress levels going up, and it has definitely taken a toll on me. So, I recognize how vitally important it is for us as caregivers to regularly

Understanding Normal vs. Chronic Stress

[3:02] be monitoring our stress levels. Now, is all stress bad?

[3:09] And the short answer is no. There is a certain level of stress that is a normal type of stress that most people have related to just being human and being alive, right? So stress is an indication that something is needing to be solved, that there is a problem that we need to address. Stress. Chronic stress is our body's response to a problem that we have not addressed or that we have not put a solution to the particular problem in place. So normal stress levels are normal. It is normal to have some measure of stress.

[4:12] And stress is important because it is an impetus or it should be an impetus for us to change something. But the reality of the matter is most of us don't think about stress or normal stress as being good, nor do we recognize that when our stress levels get to a certain point, that it is actually our body telling us that it is time to solve a problem, that we've been waiting too long, that we have accommodated or changed or adjusted or done all of these things that all humans do all the time. We adjust, we accommodate, we change. That's what we're designed to do. We are designed to be able to change and accommodate. But the reality is when we don't pay attention to our stress levels as a caregiver.

[5:24] And the stress levels of a caregiver are different than just regular, normal, everyday stress, then we are setting ourselves up for failure. We're setting ourselves up for health crises for ourselves. Did you guys know that about 60% of family caregivers of somebody living with some sort of cognitive impairment, rate their emotional stress as high or very high. And that only 40% actually rate the physical stress as high or very high. So what that tells us is the emotional stress that we are carrying as family caregivers is higher than the physical stress of being a caregiver.

[6:24] So in today's episode, what we're going to look at is why and how important

Unpacking Caregiver Stress

[6:32] it is to monitor your stress as a caregiver. I'm not just talking about everyday stress. I'm talking about your stress as a caregiver. And so we're going to look at it under a few points. We're going to look at it under understanding what is caregiver stress.

[6:55] We're going to look at what symptoms of stress are or unrecognized symptoms of stress. We're going to talk about a stress inventory that is specific to caregivers, not just a general stress assessment, but specific to caregivers.

[7:17] We're going to look at what the benefits are of monitoring your stress levels over time. And then I'm going to empower you with where to get this knowledge so that you can monitor your own stress levels. So let's unpack what is caregiver stress. Let's understand caregiver stress. 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. Now, 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.

Physicians and Caregiver Stress Assessment

[8:42] Many, many of my clients that I work with, I will frequently ask them, has your doctor, your doctor, not the person you're helping, but your personal doctor ever asked you about your own stress levels as a caregiver? And on my workshops, which this month, July, and it'll be July the 13th, I believe. I'm pretty sure it's July the 13th.

[9:13] Yes, July the 13th will be my last of these free workshops that I've been offering related to managing challenging behaviors in dementia caregiving. So if you haven't taken the opportunity of going through this free workshop, July is the last time I'm going to be offering it in that particular way on this particular topic so the link is in the show notes I invite you to come to this last free workshop it's about two hours but it's really important that that that you sign up and show up live I will interact with people on the live training, on the live workshop. But anyway, I got sidetracked related to the workshop because on this workshop, I frequently ask people if their physicians have asked them if they're stressed. And what's been fascinating to me is that most people will actually tell me, yes, my doctor has asked me whether or not I'm experiencing stress as a caregiver. The problem The problem is that the follow-up question usually for me is.

[10:31] Are they actually using a caregiver stress assessment, not a generalized stress assessment? And the answer unequivocally has always been no. They ask me if I'm stressed, but they don't use a standardized caregiver stress assessment, nor do they actually then take that information and try to solve the particular stressor that the person is under. So doctors ask you if you're stressed, but that's kind of a global thought, right? That's like, okay, you're stressed, but what does that mean? Are you stressed at a one? Are you stressed at 110, if the scale is out of 10, right? Why are you stressed?

[11:26] What is the particular thing that is causing you the stress, as opposed to just saying caregiving is causing me stress, or work is causing me stress, or family is causing me stress, right? A general statement of I'm I'm stressed, but what? What is actually causing your particular stress? Because there are different things that actually cause caregiver stress. And if we know what those things are, then we can actually implement a solution to decrease your stress. And then another question related to understanding caregiver stress is that not all stress is the same. There are certain things for certain people that are going to cause them more stress based on that particular person and their particular strengths or the particular challenges that they're facing related to the person that they're taking care of. Perhaps it's their relationships.

[12:47] So not all caregiver stress is created equal. And so when we know that, then we can come up with a solution to your specific, caregiver stress, but you've got to know where it's at. So the second thing that we're going to to look at is what are some common signs of stress? And.

Signs and Symptoms of Caregiver Stress

[13:18] What are types of symptoms that are typical, and then what may be signs of stress that are unrecognized. And so it was really interesting because when I was working full-time.

[13:34] I would often be under significant amounts of stress. I was driving sometimes 200 miles a day in home health. That's a lot of driving. And my body carries stress through my skin, through eczema, through itching and a skin rash. And what's been fascinating related to my own personal stress levels is since I stopped working for someone else, I still work. I work a lot of hours. My boss is a slave driver. But my stress levels are actually related to work significantly different and significantly less. My stress comes from other places now.

[14:27] But one of the unrecognized types or signs of stress, so here's a laundry list for you of symptoms that you may have that you might not recognize as stress. It can be a headache, like a daily headache or an underlying headache. It can be muscle tightness. It can be things like being tired all the time, and we think our fatigue is coming from the caregiving tasks. risks, our fatigue might be coming from being stressed.

[15:04] It can show up as worry or anxiety or even fear. We don't think of fear necessarily as being a sign of being stressed. It can be things like difficulty falling asleep or it could be difficulty staying asleep. That can be a sign of stress. It could be a symptom of insomnia. All of a sudden, you know, you get the rabbit brain, you know, the hamster on the wheel when you go to sleep and you cannot shut it down. It could be as simple as feeling irritable all the time or having anger outbursts when you're not prone to having anger outbursts. It could be boredom. I never thought of boredom as being a sign of stress or depression. And here's the other one. It could be either overeating.

[16:08] Under eating can be a sign of stress. And I have started to recognize in myself right now, my default setting related to stress is overeating.

Frequency and Intensity of Stress Symptoms

[16:21] I wish I were the one that would under eat, but I'm the one that overeats when I'm stressed. And then the other part of of understanding symptoms of stress is how frequent are these things occurring. If they're occasional, that's not a high sign of stress. But if they're every day or several times a day or several times a week or every hour, the frequency and the intensity of the symptoms that you're manifesting as related to caregiver stress can truly, truly, truly change what we need to do about your caregiver stress. If it's an occasional thing, then, you know, it's not that bad. I know for myself that I am coming up on a season in my mom and dad's healthcare journey. It is always in July that they have a hundred doctor's appointments.

[17:33] We will be going to all of their different doctors in July and the beginning of August. Lab work, doctor's appointments, follow-up appointments. These are the annual or the, you know, every six-month appointments. So a period of time coming up in July, and I know because I actually looked at my schedule this past week, I'm like, oh, I remember last year now that we had all of these back-to-back-to-back-to- back-to-back-to-back doctor's appointments. And at that moment in time, I was like going to come I'm unglued because I have to stop what I'm doing. I have to accommodate my schedule. I have to change how I'm doing things. I can't go to the gym maybe because the appointment's at eight o'clock in the morning, or there are multiple appointments back to back, all of this stuff. But this year...

Personal Experience with Seasonal Stress

[18:38] I now recognized that I'm coming into this four to six-week season in my parents' healthcare journey, that I'm on duty, that I am going to be taking them places, accommodating my schedule, changing things up so that I can take them to the doctor and maintain their health. But this year, because I'm aware of it, I feel a lot more in control and a lot less stressed about the fact that we have all of these back-to-back appointments because for the rest of the year, they're not that many and they're not that frequent. And so now that I know that, last year I did not, but now that I know that, I know that my symptoms of stress that I'm going to have for these next six weeks through the month of July into the first week of August, I'm just going to have to be aware of it. I'm just going to have to put it in the front of my mind. You're going to be busier. You're going to experience a little bit more stress.

[19:47] Hand off what I can to my husband because he's willing and able to help and then be able to just put the rest in a box and say, this too shall pass and understand that at the beginning of August, we'll be done with the season again until next July. You know, it's hard to spread those appointments out. And so now I've just decided to go ahead and do them because it's six weeks and then it's done. And for the rest of the year, it's really not that terrible.

[20:18] But let us talk about point number three, which is the caregiver burden inventory.

[20:25] Did you guys know that there are, well, I'm sure you know this, there are lots of people who are super, super smart and love to research things. I love to learn new information, but I'm not a natural researcher. I'm not the, you know, dig into the details and pull out all of the information type of a researcher. But there are people who research everything. They know the absolute everything about whatever topic it is. And there are people out in the care economy Over the last years, decades, these are not new measures that have come up with caregiver stress assessment. And there's more than one. The one that I use is called the caregiver burden inventory. And I forgot to look up what year it was designed, but I want to say it was somewhere in the 1980s or the early 1990s. So the data has been there for a while. But the caregiver burden inventory is a standardized caregiver stress assessment.

[21:50] So it's not just generalized stress like the, and I wrote it down because I needed to look at it, the Holmes and Ray stress scale. There are a variety of different type of stress scales, but this one, the one that I use, is specific.

[22:09] Caregiver stress. And it is standardized, which means they've run it through hundreds of thousands of people and everybody gets the same results. Not the same particular results, but the results are standardized for people. But what I love about the caregiver burden inventory is it will actually isolate exactly where your stress levels are. And because it is a standardized assessment, we can track it, right? And so caregiver stress is typically found in five, what I call different buckets, different buckets of stress. So stress isn't just one big bucket. Stress is actually the caregiver stress is one of five different buckets. So what are these buckets? Well, the buckets are things related to time, time-dependent things, things that take my time.

[23:15] That's one bucket. So if you're scoring really high related to maybe physical caregiving and and you're providing time-dependent help, your stress may be higher in the time-dependent bucket.

[23:36] Another bucket is the emotional health of the caregiver, right? And I want you to remember earlier on in this podcast, we talked about 60% of caregivers rate their emotional stress is high or very high. So the emotional health of the caregiver. The third bucket is the physical health of the caregiver. Now, what I found interesting about the statistic that I used earlier on in the program is that emotional health,

Different Buckets of Caregiver Stress

[24:16] people were more weighted higher in the emotional health than the physical health. 40% of caregivers rate their physical health as being more impacted, but 60% rate their emotional health as very stressed or high or very high for stress. So time-dependent, emotional health, physical health. Those are the first three.

[24:52] The fourth one is what they call development-based.

[24:59] As related to where you as a caregiver see yourself in relation to your peers. So for example, you're a 53-year-old woman who is providing care for her parents. And when you compare yourself to other 53-year-old people who are not providing care to your parents, and you look at their lives and what they can or cannot do, and you compare yourself to them, how it makes you feel. So a couple of the questions there are things like, I feel like I'm missing out on life, or I wish that I could escape this particular situation. So where you see your development in relation to that of your peers so that's the fourth one and the last one the last bucket or the last different um bucket is social relationship items. And this is where some of the other relationships in our life are. So the development is me to my peers. The social relationships is me to the people around me.

[26:25] For example, my family, other people in my family, my marriage perhaps, or not getting along with other people as well as you normally would have. So there are, like I said, five different buckets underneath the caregiver burden inventory. And if you know where your stress levels actually are, then you know what it is that you need to be able to do to improve it. The other important part of this is because it's normed, it has a number to it that tells us when you are reaching this number, you are close to burning out, or when you're reaching this number, you are close to really needing some additional respite services. So it's a good thermometer or barometer to be able to measure how a person is doing as a caregiver specifically related to their stress levels. So the fourth point that we're going to look at today is why. Why is it important to monitor caregiver stress? Is there a benefit to monitoring a caregiver's stress? us. And I think...

[27:51] It is vital for us to monitor our stress as a caregiver. I use an app every day. Sorry, that's a flat out lie. I use an app once a week. It's called Team CarePal, and I have a community on Team CarePal, and my entire community can once a week go in and take their caregiver burden inventory. So it's a handy, handy little app that you can download onto your phone. And what they've done is they have made it so that you can actually see over time what your stress levels are. And because I'm still right at the beginning of my caregiving journey, my caregiver burden inventory score has never been above a five. And it tells, It has me write down how many hours a week I'm providing care, you know, whatever that looks like for a particular person.

[28:51] And now I can go in once a week and I can look at it and I can monitor it. But one step further, if I go to the doctor, say I have to go to the doctor and I'm super, super stressed and I need help.

[29:06] I'm able to take this to my doctor. I can download the report and I can show the doctor and say, look, my stress levels are off the chart and it is related to these different buckets of caregiving.

lizette as a family caregiver

Benefits of Monitoring Caregiver Stress

[29:20] What can we do to try to alleviate some of that? So the benefits of monitoring your caregiver stress is number one, because it's standardized and because it has data attached to it, we actually know, without guessing anymore, exactly where a person's tipping point is. Because the assessment will tell us there is a tipping point. This person is close to or this person is far away from their tipping point. And number two, it now gives us the opportunity of really tailoring solutions to your particular stress. If all of your stressors are in the time dependency bucket, that means we have to create time. We have to give you back some time. If all of your frustrations are perhaps in the social relationships bucket, then we need to look at what do we need to change? Do we need to put up healthy boundaries?

[30:22] Are there things that we can mediate between you and the people that are around you so that we can decrease that stress level? So we can be very, very, very specific to tailoring the responses that the solutions, because remember I said at the beginning of the podcast, that stress is an indication of a problem.

[30:50] That needs to be solved. So as an encouragement for today, I wanted to mention Ephesians 4, where it talks about urging us to walk in a manner worthy of the calling to which we have been called with all humility and gentleness, with patience and bearing with one another in love, eager to maintain the unity of the spirit in the bond of peace. And I just wanted to encourage you with that scripture today, because I know, you know, caregiver stress can be extremely challenging. And it is one of the things that people tell us the most is that they're stressed. They're overwhelmed, they're stressed, and then they're going to burn out. And if you haven't yet listened to episode 114 of this podcast, I had a guest on by the name of Michelle Gordon, who was talking about burnout. And in this episode, 114, she talked about the 12 stages of burnout. And I didn't even know about 12 stages of burnout. So that's another good episode to watch if you do feel like your, watch or listen to, if you do feel like your caregiver stress is particularly high.

[32:19] But, you know, so number four was talking about the benefits of monitoring your stress, because what's measured actually will improve. And that's another good reason why I need to go dig out my scale from under my vanities so that I can actually start to monitor and maybe perhaps that'll

Empowering Yourself with Knowledge

[32:39] help me with my stress eating, right? Like I mentioned earlier on in this episode. And now the last point for today's episode, I want to empower you with knowledge because knowledge actually empowers us. The more we know about something, the easier it is for us to not feel stressed, not feel overwhelmed, not get close to burning out. We can empower ourselves with knowledge, and that's another good reason to join a good community related to dementia support, dementia caregiving, dementia coaching, because the knowledge that you gain from being in a good supportive environment will actually radically change your experience of dementia and dementia caregiving.

[33:39] But let me use one of my current clients as an example. When we first started working together, he is supporting a wife who has had dementia for an extended period of time. And when I first met him on Zoom, we met on Zoom first before we actually met face-to-face, he never sat down, and he would constantly be pacing. And one of his biggest challenges at that time was that his wife was also constantly pacing. And in my conversations with him, I really could realize and picked up that he was very stressed from his caregiving experience. And we had him do the caregiver burden inventory. And his stress levels at the time, the first time he took it was 46.

[34:37] And we were able to look at where the buckets of stress were. And some of it was in the time dependency. And some of it was in the physical health and the development items related to where he was and seeing himself in relation to his peers. And he made very simple, easy strategies and solutions, recognizing that he couldn't do it by himself anymore. And his family had always been willing to help him. He wasn't willing to ask. So he would not ask his family for help. But after recognizing how high his stress levels were, he started to implement some respite. He started to get his family to come help him with some of the time dependency items. He was able to carve out some time for himself again to go ride his bike, which was his secret sauce and his guilty pleasure, right? And so by making simple strategy changes, he was able to decrease his caregiver burden inventory score from 46.

[36:00] 30. So from the red zone, Houston, we have a problem. It's a fire we've got to put out today to 30, which is in the green zone and a manageable level of stress. So I have an invitation for you today. I have a wonderful quiz on my website.

[36:23] Thinkdifferentdementia.com, then I invite you to go take this quiz. It is just a little bit reworded, but it is the actual standardized assessment related to caregiver burden and stress. So I invite you to go take the quiz and see whether you are in the red zone or if you're in the yellow zone or whether you're in the green zone related to your particular stress in your particular caregiving journey. We don't have to guess. There are assessments that you can take that will help us 100% customize and hone your caregiving experience from making it overwhelming to empowered. So go to my website, thinkdifferentdementia.com, and take the caregiver quiz on the website and get your results and then see where you can make little changes, little tweaks in your caregiving journey to decrease your stress. So to recap today's episode again, we briefly talked about understanding caregiver stress.

[37:45] The second thing is we looked at symptoms, sometimes unrecognized symptoms of caregiver stress.

[37:53] We discussed the caregiver burden inventory and why it is important to actually look at because it has different buckets of stress. And then we looked at the benefits of monitoring your stress over time because then we can tailor the solutions specifically to you. And then lastly, we said we're going to empower you with knowledge.

[38:23] So the empowerment comes from taking the caregiver burden quiz on my website, Think Different Dementia. It'll send you a report and tell you exactly where your stress levels are and what your very next step is that you need to take to decrease your stress. So I know that this was a valuable episode for you today. What better way of being able to actually get a handle on your caregiver stress than knowing exactly which bucket of stress you particularly are stressed in? So as a last reminder, this month, July, is our last free workshop talking about challenging behaviors. So if you haven't come through it live yet, it's the last time I'm going to be doing this particular one live. The link is in the show notes. And I am just reminded that this episode will air the day before Independence Day. And I wish you all a wonderful 4th of July.

[39:46] Remember to go make memories with the person that you are helping because we can continue to live until we die. All of us, we never know. We do not know when the Lord's going to come again. We do not know how many days we have left. We do not even know how many hair we have on our head. But what we do know is we have right now. So I encourage you today to enjoy tomorrow, the 4th of July. Have a blast, make videos, take photos, make memories, and enjoy the day. And may the Lord bless you and keep you, and I will see you in the next episode.

Lizette as a family caregiver

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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.

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