4 Courageous Plans for Effective Dementia Care

In this episode of "Dementia Caregiving for Families," Lizette discusses the four possible plans for individuals living with dementia, addressing the lack of conversation and clarity surrounding these plans within the healthcare system.

Many caregivers are given brochures on dementia without a thorough explanation of the four ultimate outcomes, leading to confusion and overwhelm.

The first outcome Lizette highlights is the need for 24-hour care, which is not clearly communicated from the beginning of the dementia process. The second outcome is that dementia is considered a terminal condition, even though not everyone will die from it.

Lizette then introduces a quadrant diagram to present the third and fourth outcomes. In the bottom left corner is at-home intermittent care, where the person with dementia receives occasional supervision while still living in their own home or a family member's home. In the bottom right corner is at-home 24-hour care, where the person requires round-the-clock supervision in a family member's home.

These four plans aim to provide clarity and guidance for caregivers navigating the challenges of dementia caregiving.

In this podcast episode:

0:01:03 The Four Plans for Dementia Caregiving

0:02:01 Lack of Information on Dementia Care Options

0:03:18 The Unspoken Reality: 24-hour Care for Dementia Patients

0:05:35 Terminal Processes: Cancer, Head Injuries, and Dementia

0:06:39 Understanding the Need for 24-hour Supervision with Dementia

0:08:00 Intermittent and 24-hour Care Options for Dementia Patients

0:15:12 Empowering Family Caregivers with Clear Plans

0:17:10 Supporting Independent Living with Intermittent Supervision

0:20:10 Serving the Success Seekers with Heart and Soul

Moving on, Lizette explains the four available plans in detail. The first two plans involve the person living at home with intermittent or 24-hour supervision provided by family members or paid caregivers.

The third plan is assisted living or memory care, offering intermittent supervision in a facility-based setting. Lastly, the fourth plan entails 24-hour care in a skilled nursing facility.

Lizette acknowledges that these options may not be feasible or affordable for everyone and encourages listeners to consider their own constraints and make the best decision based on their unique circumstances.

Lizette emphasizes that these decisions are not set in stone and can be changed. They advise listeners to take an active step forward and make the next decision they feel is necessary, reassuring them that they don't need to have all the answers right away.

Sharing their personal situation of supporting their parents to live in their own home with intermittent assistance, Lizette reminds listeners that decisions can be adjusted if needed.

In conclusion, Lizette emphasizes that all plans can be changed and none of them are irreversible. They encourage caregivers to start the journey, reminding them of the four main plans available: nursing home, assisted living facility, 24-hour care at home, or self-care.

Lizette hopes that this discussion has helped listeners feel less overwhelmed and gain clarity about the available plans.

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Transcript

Introduction to Dementia Caregiving for Families

[0:04] 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.

[0:55] Music.

The Four Plans for Dementia Caregiving

[1:03] Well welcome back to Dementia Caregiving for Families.

This is episode 56 and today we are going to explore the only four plans that are possible for a person living with dementia.

I had an interesting conversation with a lady earlier this week, which really put a lot of.

[1:32] I'm struggling to find the word, which put a little bit of perspective on it for me related to.

[1:42] The fact that there really are only four ultimate outcomes for people living with dementia.

And healthcare, we have not done a good job of really talking to people about what the four plans are because what ends up happening is it's overwhelming.

Lack of Information on Dementia Care Options

[2:01] So a person is all of a sudden finds out somebody they love has dementia, their mom, their husband, whatever, their sister, their sibling, whatever.

We find out somebody we love has dementia.

And what ends up happening is we get given a brochure, maybe I'm looking for something here on my desk, right?

We get given a brochure that says this is what dementia is.

But what doesn't happen is that somebody's actually sitting there and really explaining to you that there are really ultimately only four things.

[2:41] Four planes, and two of them are kind of an iteration of the same plane, but they're really only four things that can happen to a person living with dementia.

I hate to be the person to break it to you if you haven't considered this, but when somebody you love or you have found out somebody you love has dementia, or even if you have dementia yourself, which that sometimes happens, right?

We find out that we have dementia or somebody that we love has dementia.

[3:12] The reality of the matter is that if you live long enough with dementia.

The Unspoken Reality: 24-hour Care for Dementia Patients

[3:18] Any person who lives long enough with dementia will need 24 -hour care.

We don't say that. We don't say that in that way, and we don't say that clearly to people right at the beginning of the process.

It's kind of like a rug, right? You're trying to clean the house.

You're sweeping the house.

And what happens is, nobody wants to talk about this.

Nobody wants to actually say out loud, there's an implication that if you have dementia, that you logically should understand that the person is going to need 24 -hour care.

There's the implication of it, but it's kind of swept under the rug.

It's swept under the rug by society.

It is swept under the rug by the healthcare providers, the doctors.

Doctors do not know how to talk to people about a dementia process.

[4:20] Even the specialists, right? You go see a specialist, you get a diagnosis.

You know, if you're fortunate enough after a year and a half of squeaking and squawking to get your loved one in to see the right people, what ends up happening is you just get more information related to the fact that they have dementia.

You might know a little bit more which type of dementia it is.

You might have a little bit more information related to the thinking processes that are being impacted, but you don't necessarily, that nobody really sits down and says to you, if you live long enough with dementia, you will need 24 -hour care.

Well, I hate to be the bearer of bad news. there are two things that I know about dementia.

Number one is if you live long enough with dementia, you will, end up having a terminal process, right, which is a scary thing and I recognize that and I and I know that that is hard but at the same time.

Terminal Processes: Cancer, Head Injuries, and Dementia

[5:35] But at the same time It's not the only terminal process that people go through cancer, there are, you know, head injuries.

Ultimately, guys, none of us are going to make it out of this world alive, right?

So we know and we recognize that people living with dementia, ultimately, as of right now, it's considered a terminal process, right?

That doesn't mean everybody is going to die from dementia, some people are going to die with dementia.

But that's That's the one thing we know without a shadow of a doubt.

Understanding the Need for 24-hour Supervision with Dementia

[6:39] The second thing we know without a shadow of a doubt is that a person living with dementia who lives long enough is going to need 24 -hour supervision.

So let's talk about what the four plans are.

So I want you to imagine a line, right, a line across a page, draw a line across the page, and then above the line and then below the line, or actually let's do this, make it a quadrant, right, an X.

So above the line is facility and below the line is at home.

If you are looking at a piece of paper, on the left -hand side of the line is intermittent care and on the right -hand side of the line is 24 -hour care, so we have a quadrant, we have a quadrant, right?

Above the line is facility -based care, below the line is at home, the left side of the line is of the x -axis is intermittent care, and the right side is.

[7:56] 24 -hour care. Here are the four plans.

Intermittent and 24-hour Care Options for Dementia Patients

[8:00] In the bottom left -hand corner, we have at -home intermittent care.

What does that mean? That means somebody is still living in the community.

They are living at home and this is the iteration.

They are either living in their own home with intermittent supervision or occasional, somebody coming in, or they're living in a family member's home with intermittent supervision.

So that's the first one. That's plan number one.

Plan number two is on the bottom, on the right -hand side, at home with 24 -hour care.

What does that mean? That is also the other iteration, which is it is in a child's home, a sibling's home.

[8:54] Their own home, but they have 24 -hour care.

That means somebody is with them 24 hours a day making sure that this person who is living with dementia is safe.

That can be family caregivers, it can be paid caregivers, but those are the first two plans.

So the bottom left is at home, a daughter's home, a family member's home with occasional or intermittent supervision to at home or at a daughter's home with 24 -hour supervision either being provided by family or by paid caregivers. that's that.

So two plans. Plans number three and four are above the line and the first one is assisted living slash memory care.

And why do I say assisted living slash memory care is because they fall into the sphere of facility -based but with intermittent supervision or occasional supervision.

Why do I say a memory care is not 24 -hour assistance is because of the following.

[10:14] When a person is in a memory care facility, nowhere 24 -hour care means 24 -hour care.

Nobody has eyeballs unless you have awake care.

[10:27] Nobody has awake 24 -hour care or very few people require that level of care.

In an assisted living and a memory care facility, you are in a facility -based setting.

[10:42] And you still only have intermittent care.

The intermittent care is available 24 hours a day, but you still don't have somebody with their eyeballs on somebody for 24 hours a day.

So facility -based intermittent supervision, occasional supervision at a assisted living or memory care facility.

Now the last one is 24 -hour care skilled nursing and the reason I have these two broken up is because typically people who are in an assisted living slash memory care.

[11:23] Need assistance but they're not needing heave -ho type of assistance, they're not needing big heavy lifting type of assistance.

When somebody is in a skilled nursing facility with 24 -hour still not direct line -of -sight care.

They are requiring typically a lot of physical assistance, physical assistance with transfers, physical assistance with bathing and dressing, etc.

But the biggest difference between skilled nursing and memory care is that the person in a memory care is frequently still walking.

They may use a wheelchair, but they're a lot less heavy lifting, and when a person gets to the heavy lifting phase, then they are in an a skilled nursing facility.

These options above the line are obviously way more expensive.

Home with 24 -hour paid caregivers can be more expensive than memory care or assisted living level of care. But bottom line is, these are the four plans.

These are the only four plans that are truly, truly available for people living with dementia.

[12:39] This is just a framework for you to be able to look at it and distill it down a little bit more into an easier way for you to be able to look at it so it doesn't seem so overwhelming.

[12:53] With the I don't know what to do, right?

Now, granted, every person has, you know, different constraints, and I'm not talking about the potential constraints to these four plans.

I don't have access to the money that I would need to have in order to provide myself or my parents with 24 -hour paid caregivers at home.

So that plan might not be reasonable for me related to 24 -hour paid caregivers at home. But what I am...

[13:32] Presenting to you today is to distill it down into these four different plans, intermittent assistance at home, which is either a family member's home or their home, 24 -hour caregiving assistance at home, either my home or their home, and either family providing 24 -hour care or paid caregivers, then assisted living level of care, which is intermittent in a facility like an assisted living or a memory care or skilled nursing.

Those are the only four plans that a person living with dementia have available to them.

[14:18] That's taken 30 years of doing this and distilling it down into the absolute core essence of what it is that every healthcare provider is trying to say to you in a roundabout kind of way, when telling you about helping somebody living with dementia.

And these four plans can actually be applied to any caregiving situation, to any diagnosis, to anything. thing.

These are the four things that are available for people to do.

And so, the lady that I had been speaking with earlier….

Empowering Family Caregivers with Clear Plans

[15:12] So the lady I had been working with earlier or speaking with earlier encouraged me to share this, these fourth plans with people because she had been a family caregiver, which is what this program is all about right family caregiving dementia caregiving for families, and she had been a family caregiver.

And she's like nobody ever explained it to me in a way that it actually made sense for me to be able to Understand that this is really what I'm going to be Providing or what was going to be possible for us?

So right now I'll just end this broadcast all in this program today with with this in my particular life We we have some constraints just like anybody else, right?

My mom and dad emigrated from South Africa to the United States in their early 60s.

They're in their 70s now, brought all their money with them.

They have what they have, and my husband and I are not independently wealthy. Neither is my sister.

[16:18] So our choices are my parents live at home with intermittent assistance.

They live with me with intermittent assistance, or they live in their own home with 24 -hour assistance being provided by family.

Those are the only three options that we have available.

When my husband and I are considering our active choice of being a caregiver to my mom and dad who need help, our decisions were limited within those constraints to be able to consider our unique, preferences and desires and perspectives, as well as considering their unique preferences, desires and preference, you know, constraints.

Supporting Independent Living with Intermittent Supervision

[17:10] And what we have concluded for right now, our plan is that my husband and I are supporting my mom and dad living in their own home with intermittent supervision.

If they require, if they live long enough and they require more assistance, then we have another plan that we can implement.

So I wanted to share this with you today to make it easier for you to to not feel so overwhelmed with do I do this or do I do this or do I do this or do I do that.

[17:45] Take these four plans, look at your life as the family caregiver and decide which one of these four plans seems like it would be the most practical, considering all of the constraints that you have related to your finances and resources and family caregiver situation.

And then make the best decision that you have with the information that you have right now, understanding that very few decisions that we make in our life or decisions that cannot be undone.

So if you make a decision and it doesn't work out, if you make a plan and that plan doesn't work out, it is okay to change direction.

Just because you decide one thing doesn't mean that that is set in stone.

I have helped numerous people over the years.

[18:44] Who had decided earlier on to put somebody in a nursing home or an assisted living facility and brought them home with 24 -hour care.

So just because you make one decision does not mean that you cannot undo it.

None of these decisions, none of these plans are to the extent that they cannot be changed. So I want to encourage you with that.

Just make a decision, make an active step towards the next decision that you need to make and recognize that you do not have to have all of the answers in place, but to make it easier for you to start this journey or wherever you are on this journey, these are the four plans.

Those are the only four plans that are available for somebody living with dementia in order for them for the remainder of their life.

Because as we started the program, as I started the podcast, somebody living with dementia long enough will need 24 -hour supervision.

So I hope this has encouraged you today to just consider what the four plans are that are available and start to take it from being so overwhelming and so many different options in your own mind and distilling it down into one of these four plans.

Serving the Success Seekers with Heart and Soul

[20:10] 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 leaves.

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”