Do you feel like you're constantly playing catch-up caring for a loved one with dementia? You're not alone. Many caregivers struggle with the daily challenges of dementia. But what if there was a way to make things easier?

This episode explores the importance of having a dementia specialist on your side. You shouldn't rely on generalists for dementia care.

Is It Important To Have A Dementia Specialist On Your Team?

0:00:54 Simplifying Dementia Caregiving
0:11:14 Avoiding Challenging Dementia Behaviors
0:13:03 Importance of Dementia Specialists
0:15:17 Dementia Caregiving as a Marathon
0:18:55 The Haunting Patient
0:19:36 Committing to Finding a Dementia Specialist

A dementia specialist can provide you with the specific knowledge and support you need to navigate this journey. They can help you:

  • Understand the root cause of challenging behaviors
  • Develop strategies to manage those behaviors
  • Reduce caregiver stress and burnout
  • Keep your loved one at home for longer

Having a dementia specialist on your team is an investment that can save you money in the long run. But more importantly, it can help you create a more positive and manageable caregiving experience for yourself and your loved one.

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The One That Got Away

[0:01] I will never forget the one that got away.

What do I mean by that? I mean the patient that got away, the patient 30 plus years ago that I didn't know how to help because I was not a dementia specialist.

Now, why is it important in this episode 93 to understand why as a dementia family caregiver, you need a dementia specialist in your back pocket.

It is vitally important because our brain is like a Tesla and we are taking our Tesla to the jiffy lube.

If you'd like to find out more about that, you need to listen to today's episode.

Simplifying Dementia Caregiving

[0:54] 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.

[1:49] How many of you have had a situation where you can say something got away?

Whether it was when you went fishing and you know the big fish that you had on the hook got away or if you had a boyfriend or a girlfriend that got away that you thought you were going to be in a relationship for an extended period of time. The one that got away.

Well, my one that got away was was one of my very, very first patients that I had as an occupational therapy student in South Africa.

And she is the one that still to today, more than 30 years later, haunts me.

I'll never never forget the day that I met her.

She was a frail, elderly woman in a very thin dress.

[2:49] Walking up and down the hallways, crying the whole entire time, standing in front of me about five to six inches away from me, and looking me dead in the eyes and telling me over and over again.

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

This was in South Africa at a hospital that was known as the Green Roofs because it was colloquially known as the.

[3:30] Loony bin, right? The psychiatric hospital. So I'm going back 30 years ago, 30 plus years ago.

It is not correct to call it a loony bin.

But at that time in South Africa, this was the psychiatric hospital called Vescovis, and its other name was the Green Roof.

I was tasked as a therapy student to work with this lady who I, to today, still remember because for me, she was the one that got away.

She was the one that I didn't know what to do with.

She was the one that I was supposed to help and had no idea what to do to help her.

But she started me on a very long journey to understanding and figuring out how I can help people living with dementia.

Because you see, she had dementia.

She was in the psychiatric hospital, the Jerry Psychiatric Hospital, in order to have medication adjusted to try to see if they could decrease her.

What I now understand to be challenging behaviors.

[4:55] So she was pacing up and down the halls. She was repetitively asking people questions over and over again.

And it was a significant challenge, both for me as a therapy student, but also for me as a person, because I didn't know know what to do to help her.

It was very scary to me. I was a brand spanking new student.

I didn't know what to do. And it was challenging for the people around her because the people around her didn't know what to do.

And I just remember that I had such a tremendous desire to help her because I wanted to make her life better, but I didn't know what to do.

And it was a situation in my life that I still remember all of the things I tried with her.

I remember trying to engage her in activities or trying to get her to just sit down for a couple of minutes. And.

[6:06] I remember feeling entirely helpless.

I felt helpless. I couldn't help her. I didn't know what to do.

And I had this tremendous desire to make her life better, but I didn't know what to do.

And that started me on a journey where I realized that I don't know how to help people when they have dementia or when they have cognitive loss.

[6:39] I fast forward a few months or years, moved to the United States with my husband, and then started working in skilled nursing facilities as a brand spanking new occupational therapist.

And I remember distinctly the situation where where I all of a sudden came to the realization that a person who was living in a nursing home frequently was in a nursing home, not because they were needing physical assistance, which was a part of it, but mostly people were not going home because I worked in a short-term rehab hospital, a skilled nursing facility, that people were not going home because they couldn't think for themselves.

And so when you tie in this lady I had to work with psychiatric hospital in South Africa.

[7:43] And then this realization that people were admitted to a long-term care facility, not necessarily because of the physical assistance that they needed, but frequently because of the thinking processes assistance that they needed.

It made me realize that I needed to learn more about thinking processes than I ever realized.

And then I realized that our university did not do a very good job of preparing us to help people who have thinking processes problems.

[8:20] So that started me on a very long journey, a journey where I started slowly reading books and going to seminars and figuring out trial and error techniques of helping people living with dementia.

Because most of the people that you actually work with as a therapist when they have thinking processes problems are typically diagnosed with dementia.

Sure, there are head injuries. Sure, there are people people who've had a stroke.

All of that is true, but frequently over the 30 years I worked as a occupational therapist, the bulk of the people who I worked with who had thinking processes problems had some form of dementia over the years.

And so I continued along this journey to actually one day wake up about 20 years into the journey with the realization that, oh, I've actually become a dementia specialist.

I didn't set out to be a dementia specialist, but I turned into a dementia specialist.

[9:34] And why is that important? Well, it is important because our brain is like a Tesla.

[9:43] And when you have a Tesla, you don't take your Tesla to the Jiffy Lube, right?

You take your Tesla to the Tesla dealer when it needs to have a service.

And our brain is exactly the same thing as a Tesla.

And we are taking our Tesla, our brain, to the Jiffy Lube sometimes when we are wanting to find out more about dementia.

Now, what on earth does that do you mean by that?

Well, I mean that the healthcare system is full of people who are specialists in a variety of different things, but that doesn't mean that they are necessarily a specialist in dementia.

When you are receiving a home health referral for physical therapy or occupational therapy or speech-language pathology, there is a very high, strong likelihood that the therapists that will be coming to your house are going to be jack-of-all-trades, masters of none, because they see thousands of patients with a variety of different diagnoses.

They do not just specialize with dementia.

[11:06] Did you know that caring for a person with dementia doesn't have to be this hard?

Avoiding Challenging Dementia Behaviors

[11:14] 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.

[11:48] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

The same thing related to a physician.

If you are going to a physician who is your general practitioner, they are a jack of all trades, a master of none.

They are They're extremely good at what they do in being a clearinghouse for multiple different diagnoses, but that does not necessarily mean that they are a dementia specialist, right?

So our brain is a Tesla, and our brain as a Tesla is being treated by people who are generalists in their field, not necessarily a specialist in their field.

Now, why is this for you as a family caregiver of a person living with dementia?

[12:56] Why is this important? It is important because for a number of reasons.

Importance of Dementia Specialists

[13:03] But number one is even though a person who is a generalist can give you some benefit and some ability to help you in your dementia caregiving journey, they do not live, eat, breathe, and breathe.

[13:23] Desire to know everything about this process in order to help you.

They are good at what they do.

They can help you in the moment, but they are going to be a one and done kind of episode, whether it be four to six weeks of therapy, four to six weeks of outpatient therapy, therapy, whatever it is, but they are not necessarily set up to truly help you understand and figure out, like that person I referenced, the one that got away, the patient that still haunts me from the hospital in South Africa, they're not set up to truly help you understand and figure out the why behind the what you're seeing.

So that's one reason why it's vitally important for you as a family caregiver of a person living with dementia to actually have dementia specialists on your team.

Another reason it is vitally important for you as a person who who is helping somebody living with dementia have a specialist on your team is because a dementia specialist or a dementia coach will focus on you as the caregiver and not necessarily on the person that you are helping.

[14:53] And it is very important because specifically related to dementia and dementia caregiving, we need to move away from a patient-centered perspective to a caregiver-centered perspective.

And the reason for that is because dementia caregiving is a marathon. It is not a sprint.

Dementia Caregiving as a Marathon

[15:18] So when we have somebody diagnosed with dementia, dementia, the dementia caregiving process can sometimes take 5, 10, 15 years.

It just depends on the type of dementia, and it also depends where in the journey we actually start with a diagnosis, when we actually get a diagnosis.

[15:40] And when you're accessing the healthcare system, the healthcare system is 100% only set up to truly do patient-centered care and not caregiver-centered care.

The emphasis on dementia caregiving needs to be caregiver-centric.

It does not need to be patient-centric. When you're in the healthcare model, it needs to be.

[16:12] Patient-centric. But the reality of the matter is dementia caregiving is an extended process.

It is a process that you need help, not just one time, not just one and done, but over an extended period of time.

And if we do not change how we are actually providing care to families who are are helping somebody living with dementia, we are not going to be able to keep people with dementia at home because the care of partners will burn out.

Did you know that 63%, that's 63% of family caregivers of somebody living with dementia will actually pass away before the person who they are helping, which puts a 100% emphasis likely that that person will be institutionalized.

And I don't know about you, but my goal for my parents that I support who both have cognitive loss is to help to try to keep them at home.

[17:21] If I can keep my mom and dad at home, that means that every single month that they are not in an institution, whether it be an assisted living or a memory care or a skilled nursing facility, whatever that is, for every single month that I help to keep my mom and dad at home.

[17:43] I am saving between $5,000 to $10,000 a month.

So finding a dementia specialist that can help you.

[17:52] Longitudinally over time can truly be a significant cost-saving procedure for you if you can keep somebody out of a facility for a longer period of time because you have supported and undergirded the person who is the primary caregiver, which gives them the resilience and and the ability to actually keep that person that they are supporting at home, then we all have one, right?

So it is extremely important to me to try to help you as a family caregiver of somebody living with dementia be able to do this in the long term, to be able to find the resources that you need to be able to find the support that you need in order for you to be able to do this dementia caregiving over an extended period of time.

Because if we do not support you as the family caregiver.

The Haunting Patient

[18:56] Then we have people who are institutionalized much earlier in their life, sort of like the lady that I referenced earlier on in my story.

Now, this patient still haunts me to today.

I still think about her every single day.

And I realize that going back now, I would actually know what to do to help her.

I would be able to not necessarily take all of what we were working with at that time away.

[19:28] But I definitely know that I could decrease the frequency and the intensity of those.

Committing to Finding a Dementia Specialist

[19:36] Quote-unquote challenging behaviors. So I would love to invite you, if this episode resonates with you related to caregiving and the fact that you feel like you are ready to commit to finding a dementia specialist, I would love to invite you to my free workshop this month, which which comes around every so often.

I will be having another free workshop on the 28th of March, and you can sign up for that free workshop at and then forward slash WSL.

[20:21] The link will be in the show notes, but I invite you to come to the workshop, because in this particular workshop, I do talk about three tips and techniques to help you decrease or avoid challenging behaviors.

And it is a repeatable process.

I teach you to use a specific framework that you can look at your specific situation every single time and figure out on your own over time how to actually change your life and make it easier.

Because dementia caregiving for families, my emphasis is to help decrease family caregiver stress as well as decrease or reduce your risk for burnout.

And we do this by teaching you how to actually manage and cope with some of the ongoing changes of a person living with dementia so that you're not constantly feeling like you're behind the ball, that you actually have some strategies and techniques in your back pocket that you can use to be able to help the person that you were taking care of, as well as help yourself.

[21:47] So I'm excited that you're here. Come join the next free workshop.

[21:54] Otherwise, I would love it if you enjoyed this podcast.

That you share it with other people who are in your particular situation.

Something I'm realizing more and more, the family caregivers of a person living with dementia do not tell other people that they are helping somebody with cognitive loss.

It's still a deep, dark, dirty secret, and it is It's time that we change this stigma, this negative narrative relating to cognitive loss, because what we're doing is we are burning out the family caregivers because nobody wants to talk about it. They are in your church.

They are your family members. They are your friends.

We are supporting way more people with cognitive loss than what society is willing to say.

And my job is to try to bring this out to the light and change this negative narrative and the stigma behind cognitive loss and make it easier for you as a family caregiver of somebody living with dementia so if if you like the podcast share it if you like the podcast please subscribe to it if you like the podcast, please go to Apple Podcasts and leave me a review.

I read them all. They are special to me.

[23:21] And let me know what it is that I can serve you with and what you would like to hear more about, because I'm here to serve you.

And I'm excited that you are here.

I'm sorry that we are navigating this journey together, but I certainly know that we can make it easier for both you and for me.

[23:48] 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.

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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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