Dementia is a journey that is as unique as the individuals. It's a path paved with challenges, breakthroughs, and moments of profound connection.

As we get into the intricacies of dementia care, it's crucial to shift our perspective from what is lost to what remains.

This blog post draws from the insights shared in a recent workshop aimed at demystifying dementia and highlighting the retained abilities at every stage of the condition.

Understanding Dementia Through Functional Assessment Staging Tool

The Functional Assessment Staging Tool (FAST) offers a retro genesis model, a map that retraces the progression of dementia from the end back to the beginning.

However, for caregivers and professionals working with individuals with dementia, the Allen Cognitive Disabilities Model proves to be an indispensable tool. It emphasizes retained abilities rather than just the impairments, empowering us to support our loved ones effectively.

Retained Abilities: Focusing on What's Possible

In the world of dementia, we often fixate on the inabilities that come with the condition. Yet, individuals with dementia retain certain abilities at every stage.

These retained abilities can range from simple recognition of everyday items to the capacity to perform familiar tasks. Acknowledging and leveraging these abilities can improve the quality of life for those with dementia.

senior with dementia along with her caregiver (2)

From Independence to Assistance: The Journey Through Dementia Stages

The progression of dementia can be broken down into several stages, where individuals move from complete independence to requiring various levels of assistance:

Early Stages of  Dementia: Mild Cognitive Impairment

At this juncture, individuals may still engage in familiar activities, manage basic self-care, and even maintain hobbies. They might, however, begin to struggle with planning, complex tasks, and following rules.

Middle Stages of Dementia: The Onset of Dependence

As dementia advances, individuals find it challenging to pick appropriate clothing, follow complex leisure activities, and may need help with basic activities of daily living (ADLs). Support and consistent guidance become increasingly important.

Late Stages of Dementia: Increased Need for Assistance

The late stages of dementia are characterized by significant reliance on caregivers for dressing, bathing, and mobility. Individuals may still participate in activities with the right cues and support but require constant supervision.

End Stages of  Dementia: Sensory Engagement and Comfort Care

In the final stages, the focus shifts to sensory stimulation—engaging the senses of smell, sight, touch, and sound—to provide comfort and connection. This approach honors the person's experience and fosters moments of joy, even in the absence of more complex interactions.

senior with dementia along with her caregiver (3)

Strategies for Enhancing Communication and Care

Communication becomes a challenge as dementia progresses. Caregivers can adopt strategies to minimize distractions, anticipate communication needs, and use repetition to facilitate understanding. It's also essential to read nonverbal cues and prevent frustration during interactions.

Addressing Mobility and Activities

Throughout the dementia journey, mobility can vary greatly. From walking independently to requiring hand-held assistance, adapting the environment and activities to suit the individual's current abilities is key.

Emotional Impact: Dealing with Stigma and Acceptance

The stigma associated with cognitive loss is a significant barrier to embracing life with dementia. Early recognition and acceptance can help in strategizing for a fulfilling journey, despite the challenges. Every person's dementia experience is distinct, and embracing this diversity is crucial for compassionate care.

Concluding Thoughts: The Importance of Community and Support

As caregivers and loved ones, it's our responsibility to focus on the positives and provide the best care possible. This includes recognizing the need for community support, whether it's at home or in a facility. At every stage, the goal remains the same: to honor the individual's dignity and preferences while ensuring their safety and well-being.

In closing, we are reminded that dementia, though complex, does not define a person. By concentrating on retained abilities and creating a supportive environment, we can navigate this journey with grace and empathy. As we say our goodbyes, let's carry with us the message of hope and the commitment to be there for each other, every step of the way.

Let me know in the comments below if you have questions about dementia that you need answered.

adult daughter talking to her mother with alzheimer



[0:00] Thank you for coming. Tonight is Dementia Made Simple.

I don't know how many episodes I've done on these. Hey, we're getting there, Russ. We're getting there.

We're about, oh, 53 short, so we will eventually get to 500.

That is my goal. My goal for the end of July for myself was to try to see if we got to 500 people in this group.

I'm a little short, but you know what? It's a goal. I don't meet goals every single day of my life.

I don't know, most of us don't meet all of our goals every single day of our life.

So today I thought we would talk about, last week we were talking about the Functional Assessment Staging Tool.

So the Functional Assessment Staging Tool is a, it's a model called, that's a retrogenesis model.

A retrogenesis means back to the beginning. Okay, so back to the beginning.

In our world, I'm an occupational therapist, in my world we have an additional tool which is called the Allen Cognitive Disabilities Model.

And the Allen Cognitive Disabilities Model is probably the thing that I use the most every single day of my life when I'm working with people with dementia because it is a tool that gives us, that's very functional.

And it really works on what's known as retained abilities, right?

[1:28] So often in this world with people with dementia, we are only focusing on what they're not able to do.

But at every stage of dementia, people are still able to do things for themselves.

And those are what we call the retained abilities. Granted, they may not be able to pay their bills or do their medication management, but they may be able to do other things.

And we wanna make sure that we are tapping into their retained abilities and not just looking at this as a disability, right?

A something that we cannot change. There are things that we can do.

We can change the task, what we're doing. we can change the environment to make it easier, and we can change how we approach the person, how we talk to them, how we cue them, how we do all these different things.

And when you get all of those things together in the right way, you are able to elicit the best response you can from somebody who has dementia.

[2:31] So the Allen Cognitive Disabilities Model, what they did is they made an additional staging tool called the Adapted FAST, or the Adapted Functional Assessment Staging Tool.

And I'm going to quickly go through it tonight because I really think that it is truly valuable.

It really helps when we focus on ability instead of disability.

It really does help be able to engage people that we care about who have dementia or cognitive impairment, engage them in their life still.

And that's certainly what we want. We want everybody to be as independent as they can.

We don't want people to just be left in bed or just forgotten.

Sharing a story about a patient with retained abilities

[3:24] I'll use a quick little story before I get into this.

Interestingly enough, I still practice as an occupational therapist.

I work in home health. And I have a patient right now who has a phenomenal family.

Totally one of the best families I've ever worked with. Almost everything I've recommended, they've kind of implemented and tried to do.

But she's pretty far along in the stages of dementia.

And so according to the Allen Cognitive Disabilities Model, one of the staging places that we look at is if somebody is able to hold and recognize what a tool is.

[4:00] This is a pen. Let's pick the red one because it shows up better.

This is a pen. If I give it to my patient and they hold it and they know what it would do, even if they can't write anymore, but they would turn it in the right way.

[4:17] I don't have anything other than a pen up here that's handy, but imagine this was a spoon.

If you give them the spoon and they take it and they know how to use the spoon, that puts them at a certain level according to the Allen Cognitive Disabilities Model.

[4:35] What's interesting, when I look at her, when I look at this particular patient, I actually think that she's a little lower than that, but functionally she can still feed herself.

And that was one of the things that her family wanted her to be able to do.

But what's certainly been interesting with her is she was on hospice, and they took her off of hospice, not they, the family, but hospice took her off of hospice because she's actually doing pretty well.

And so what happened is because she was on hospice for six months and had been laying in bed, and they hadn't really been getting her up because she's on hospice, when we started come in for occupational therapy and physical therapy.

I had a long conversation with my physical therapist who we work with really well together and I'm like, hey, while I work on these things, will you just work on setting her up on the edge of the bed and seeing if we can get her up against gravity again because she's not been up against gravity.

So today I go to the patient's house and her family had actually carried her, carried her, She can't walk anymore, actually carried her to the bathroom, but she's holding herself upright on the toilet. And so, hey, Kathy.

[5:49] So I'm like, okay, so you're holding yourself upright on the toilet.

Maybe if I keep going, because we're getting ready to discharge her, maybe if I keep going, functionally, she'll have some more retained abilities.

Emphasizing the importance of assessing retained abilities in dementia patients

[6:03] So even though she really looks according to a lot of the, the scales, like the functional assessment staging tool and some of these other staging tools, she looks like she is end -stage dementia.

And I'm not saying that she doesn't have end -stage dementia, but she still has some retained abilities.

So I made a deal with the family and I told them, I said, I will make you a deal.

[6:28] I will keep working with her if you do the following things.

Get a bedside commode from, a family member has a bedside commode, get a bedside commode every time she, because she's now asking to go to the bathroom.

So she's recognizing she has a need to pee.

And she asked them to put her on the toilet. So I'm like, get a bedside commode, put her on the toilet, because they always have two people, put her on the toilet every time she wants to go and get her up out of bed every day.

If you do that for a week, and you show me that you're gonna do that, I'll keep going with her.

I'll keep working with her one time a week until I can see if I can stand her up.

And if I can stand her up, Then I'll ask for physical therapy to come back in again.

[7:09] So just because the staging tool says a person's at a specific level doesn't necessarily mean that they don't necessarily have retained abilities.

So this particular patient is showing me that she has some retained abilities because she's actually now speaking more, because they're interacting with her more, not that they weren't interacting with her, but they're getting her into the dining, not the dining room, but the TV room, they're setting her up, she's speaking in a few sentences, she's doing some things that lead me now to conclude that even though she is definitely at the end stage of her dementia journey, she's not as far along as I had thought she was.

And that's why I like the functional assessment staging tool that was adapted by the occupational therapists that.

[8:00] Brilliant observers of people because it goes more into function.

So a staging tool can give you a down and dirty.

It can say, you're kind of looking like this, or you kind of look like this, or you're not quite as far along as some of the other people, but it doesn't really show us what a person's still able to do.

And so my homework for everybody is to always try to see what the person is able to do for themselves.

We always want to try to elicit that independence as best we can so that we can keep working with people and give them their best quality of life, right? Because that's ultimately what it's about.

[8:43] Ultimately, we're all gonna pass away. Ultimately, we're all gonna die.

People who have dementia typically have, we know that it is a terminal process that could be anywhere from two years to 20 years or 30 years. People are amazing.

Discussing the need to focus on independence and quality of life

[9:00] We, you know, people are amazing. Just because a person has like an end -stage diagnosis of, say, some sort of a cancer, and the doctor may tell you, oh, you've only got six months to live.

Well, I've met people who the doctor said, you've only got six months to live with a terminal cancer diagnosis that have been alive for five more years.

My brother -in -law is one of them. You know, and so just because we know that this is a relatively predictable outcome doesn't mean that we just say up and say, oops, there's nothing that we can do.

There's a lot we can do. We want to engage people in their world.

We want to bring them into, as remaining as independent as they possibly can.

We don't want to just say, oh, well, you've got dementia and therefore, right? So, let's talk about the Functional Assessment Staging Tool, the adapted Functional Assessment Staging Tool that was adapted by occupational therapists.

[10:01] So the first stage, obviously, of the Functional Assessment Staging Tool is a person that has no trouble.

Normal people, well, I will contend all normal people have trouble with their thinking.

I'm not a very popular person when I say that, and I say that about myself.

I have days when I'm not thinking clearly as well, when I'm tired, when I'm hungry, etc. etc. We all are sick.

[10:24] Our cognition is not static. Our cognition doesn't stay boom. This is our cognition.

Everybody has a normal range and we go up and down.

We go up and down through our normal range.

Stage 1: Mild Cognitive Impairment

[10:37] So stage one is no objective or subjective functional changes.

Then stage two is a person will subjectively start, which subjectively just means that they feel, they feel, I feel like they're starting to have trouble in recalling names, other word finding trouble, or subjective difficulties in recalling location of objects, or decreased ability to were called an appointment, no objective functional deficits.

So these people, a person, so with these descriptors, these are people with a functional assessment staging tool that are just starting to show that they are having trouble.

Stage 2: Objective tests begin to show cognitive impairment.

[11:27] And this is when, maybe the first time when some objective tests, the person will tell you, I can't find my words, I can't locate items, I'm starting to have trouble at work, it's impacting my ability to do my work, but not necessarily when we start to take a test.

[11:49] It's not necessarily gonna show.

And so this is probably the stage when people is what's known as the subjective cognitive impairment.

So I know I'm having trouble, but nobody else knows I'm having trouble.

And I will use myself as an example, about a year and a half ago, right before my daughter, our oldest daughter is about 24, she got married in December of 2019.

And I had started to, I was extremely stressed, I wasn't eating well, I was not exercising, I was extremely stressed, extremely, extremely stressed.

And my cognition went to heck in a handbasket and I knew it.

Nobody else knew it, but I knew it. I knew that I wasn't thinking clearly anymore.

I knew that I wasn't working at the highest level that I am able to work. So even though if...

Even though if I were to do a cognitive test at that time, it probably wouldn't show anything major that I need to be concerned about, I knew it.

So when people have subjective cognitive complaints, we need to take it seriously because that is actually the first stage, or can be if you don't change things in your life, which I worked on losing weight, I worked on eating properly, I'm on a keto diet, I haven't been super good right now because my husband's not here, I don't cook for my kids, I don't cook for myself, I cook for my husband.

[13:17] And so I'm not doing as well as I had been about six months ago before he started staying up in Greenville working on our duplex.

But subjectively, I don't have that same impairment that I had about a year and a half ago.

Alcohol, sleep, diet, exercise, sleep, and stress.

And I had a bunch of those things all going on.

My parents are habitual drinkers, and when I'd go visit them, I would start to drink more wine, and I started to realize it's just kind of creeping up on me, and I'm like, no, you've got to stop this.

Wine is terrible for your brain.

[13:52] Alcohol is terrible for your brain. I'm not saying... I still drink wine.

I still drink... I don't drink beer, but I still drink wine.

But I try to make sure that I'm moderating it right, but that's what we call subjective cognitive impairment. So I knew I was having trouble, but nobody else would know.

[14:10] So then the next stage, so we're still talking about the functional assessment staging tool, but we're using the adapted one that has the behavioral characteristics that go along with what we discussed last week.

Stage 3: Mild cognitive impairment impacts social and occupational settings.

[14:24] So stage three, this is where it's probably known in the literature as mild cognitive impairment. So, mild cognitive impairment isn't mild, it's a misnomer.

It very much impacts people's lives.

But mild cognitive impairment is the first place where when a person takes a standardized test of some sort on a computer or a test that I would do or something along those lines, this is the first time that a test will actually start to show that somebody is having trouble with their thinking.

And it's called mild cognitive impairment because it's not dementia yet.

Every, statistically 20 % of people will convert from a mild cognitive impairment to a mild dementia every year.

So it does, if you don't change things, if you have been diagnosed with a mild cognitive impairment and you're not actively working on things to change things to prevent your cognition from declining, it will get worse over time.

[15:31] Unfortunately, in the medical vernacular right now, there's this belief that, oh, I've got cognitive impairment, there's nothing I can do.

I've got dementia, there's nothing I can do.

Yes, it is something that medically right now has a fairly predictable path.

But no, it's not that you can't do things.

The earlier you start, which is why I started a year and a half ago, right? the earlier you start to maximize things to keep your cognition sharp, the better it will stay, the better it will remain.

[16:06] There is a lot of research that if you optimize all of the factors, and not just the one factor, but if you actually optimize everything that you can prevent and improve your thinking processes.

And I'd encourage you if you're interested in that to read Dr.

Dale Bredesen's book, The End of Alzheimer's, is very rigorous.

It's not easy, but you know what, neither is dementia.

So even though it's rigorous, I would strongly encourage you, if you're interested, I can kind of talk to you about it a little bit more, but there are things that we can do.

So on stage three, deficits that are noted are in demanding occupational and social settings, right?

This is where we start to see, at a mild cognitive of impairment, this is where we start to see some social deficits, some social interaction problems, right?

For example, the individual may start to forget their appointments.

[17:05] For the first time. They may not be able to maintain their work productivity.

They will start to have trouble moving from familiar to unfamiliar surroundings.

So they may get lost when they're driving, right?

They may get lost when they go to a public, when they're needing to use public transportation.

[17:28] So mild cognitive impairment isn't, Mild cognitive impairment isn't just mild.

It absolutely impacts people.

And if you listen to those three things, the few things, forgetting appointments, starting to have difficulty with productivity at time, at work, I'm sorry, and difficulty traveling to unfamiliar surroundings or unfamiliar locations, all of those things fall in the purview of what we've talked about before, which are the executive functions, right?

Those higher level skills that we all have, time management, emotional regulation.

This is why people who are starting to go through a dementia process, why they get so emotional, because they lose their inhibition switch.

So everybody has an inhibition switch. Normal people have inhibition switches.

Switches, most people can control their inhibition switch, right?

A little kid who's two or three or four or five or six years old hasn't developed their inhibition switch yet.

And so when people struggle to, one of the executive functions is emotional regulation.

It's that inhibition switch, right? And so for example, most of the time my inhibition switch works pretty good, but not all the time.

[18:55] And we all think things that we don't say.

We think things all the time. If we're honest with ourselves, we're not nice people.

None of us are nice. We think nasty things about people. We think nasty things about people we like.

We think nasty things about people we love. We don't always paint them in a good light, right?

But we don't always say that. We don't always say to our spouses, you know, you really hacked me off when you did this.

You just kind of let love cover a multitude of evils. But think about a kid, right, who's not developed their inhibition switch yet.

Emotional regulation is your inhibition switch. They're the one that goes to the store with you and they're walking and they pull on your pants and they say, Mommy, Mommy, Mommy, look at that fat lady over there. Okay?

[19:44] When people start to have mild cognitive impairment, their inhibition switch goes, which starts to impact social settings, right, friends, family. You can't just say what you think, people, because it doesn't always work well, right?

Work relationships, productivity, productivities, planning, organization, all of these higher level skills that you need to be able to have in order to plan and do your job.

And then traveling, right? Traveling is very, very complex.

Like if you have to plan out, I'm going to get in the car, I'm going to take this route to this particular store. there's a lot that goes into driving.

Or you're used to just driving a certain road and then all of a sudden they put a detour up, but the detour is not marked very well.

[20:33] And you turn down a wrong, a different road that you're not used to driving down and all of a sudden you turn around and you get lost.

So that's at stage three. So these are the functional things that go along with these stages, right?

Stage 4: Early dementia affects complex daily living tasks.

[20:46] So the stage four, which is early or mild dementia, early dementia, deficits start to occur in what we call complex tasks of daily living or the instrumental, I've used this word before, instrumental activities of daily living.

So, the complex daily living tasks, things like paying bills, balancing a checkbook, Decreased planning or preparing a meal, being able to use the stove or the oven.

Decreased ability to go grocery shopping.

[21:27] Unable to manage change when you go grocery shopping.

[21:32] Unable to plan ahead what a good meal would look like, right?

Not getting your medications filled in time because you just don't anticipate the secondary consequences of something.

Other things like being able to plan or structure your day adequately so that you're not just sitting and not doing things.

These are all the higher level basic ADL and instrumental ADL skills.

[22:03] And people who are starting to have mild dementia, don't always follow the rules of the road.

I know I'm not popular when I say this, but driving is a privilege, it is not a right.

We do not have the right to drive a car. It is a privilege.

We are given, we have to take a driver's test, right? It's a test thing.

There's a particular reason why a seven -year -old child doesn't drive a car.

A seven -year -old child hasn't developed their secondary consequences, anticipating secondary consequences.

Well, when people start to go through their processes with dementia, they start to lose their problem.

They start to develop difficulty with anticipating secondary consequences of their actions, and they have a hard time judging distance.

And so when you have speed and distance and somebody who is not anticipating secondary consequences.

[23:04] And this is the mistake that most people with dementia and cognitive impairment always make, is they will make, in the United States, we drive on the right -hand side of the road.

I had to look out the window to remember, because I am from South Africa, and I'm used to driving on both sides of the road.

They will cross the traffic. So in the United States, they'll be in the right -hand lane.

Somebody's coming from the front on the left, and they'll turn left right in front of that person and cause an accident.

Dementia Progression: Difficulty with Basic Activities of Daily Living

[23:34] So people at this early stage dementia or early level 4, stage 4, start to have difficulty with being able to engage themselves in recreate.

Or I'm sorry, they're still at this stage able to engage themselves in very familiar recreational activities and their basic activities of daily living.

What are the basic activities of daily living?

Being able to get dressed, being able to go to the toilet, being able to feed yourself, not prepare food.

Prepare food is a higher level IADL.

Get dressed, go to the bathroom, shower, put shoes and socks on, brush their teeth, comb their hair.

They can sequence themselves through those very familiar activities and very familiar leisure activities that they always did, maybe Sudoku or a puzzle or something that they repetitively did.

So at a stage 5, which is also an early stage dementia.

[24:36] But starting to go towards the middle stages of dementia, at a stage 5 a person will start to have difficulty in picking out their clothing, proper clothing for the day, right?

And so we don't think about it, but there goes a lot into deciding what to wear every day.

You gotta know what the season is outside. You've gotta know what the occasion is.

And so people will start to have difficulty choosing the right clothing for the right occurrence, right? So they won't necessarily pick out the right clothing.

They'll think it's raining outside and they won't wear clothes that are appropriate to go out in the rain or the snow or those kinds of things.

So they can still get dressed, but they need assistance in picking out what to wear.

And they will need 100 % help in community functioning.

These are things like getting to appointments. These are things like helping them plan out their activity, that they've got a doctor's appointment.

They may need help with those kinds of things.

So at this level, at an early stage five, a person or a spouse or a care provider or a care partner has to help the person pick their clothing, clothing appropriate for the season or the individual will wear things that don't match together.

[26:04] And most of the time over the stage people will start to forget to take a bath, right?

They can still bathe themselves physically.

[26:15] Mechanically, right, to wash your face, wash your arms. They're physically able to do it, but they'll forget that they've taken a bath.

These are the people that say, but I've taken a shower. What do you mean I haven't taken a shower?

I did. I told you I took a shower.

And you can see they're still wearing the same clothes from three days ago when you came to see them the last time.

[26:38] But arguing with them is not going to make a difference, right?

They will need assistance to locate unfamiliar rooms and locations in unfamiliar settings.

So when people are in an unfamiliar setting, an environment, this is where they'll initially need a little bit more help.

But people at this level can still, they can still learn highly valued information.

If they want to learn at a certain stage of dementia, if the person with dementia wants to learn the information, they will learn it.

If they don't value the information, you can't teach it to them.

They have to want to know the information.

And if they do, then you can still teach them.

The person will need to help people with repetitive training over and over and over again.

We have to do the same thing over and over again.

When I work with students, this is one of the things I always tell them.

They change things up every session. Like, when I work with people with mid -stage dementia, a lot of my sessions look exactly the same, in and out, in and out, because I'm trying to do repetitive training.

I'm trying to make sure that the person learns something by me teaching it over and over and over and over again.

So repetitive activities is more boring for me than it is for the person who has trouble.

[28:03] It's the way that they can still be able to engage in their environment and be able to do things.

So repetitive learning is very important for people at a mid -stage of life.

They can still learn, they just have to want to learn it. They can engage themselves in highly familiar recreational activities, but they have to have these things set out for them.

They won't go and initiate, my living room is right over there, so they won't go and initiate taking something out and putting it on the table and setting it out and doing it.

That takes forethought and planning and organizing, right?

But if you give them the stuff, and it's a very familiar activity, for example, somebody who always sewed, maybe giving them something that was an easier task, easier sewing task, not a highly complex, I'm making lace for a wedding dress, but I'm making a pot holder with big loops, right?

So there are ways that we can make activities easier for them, but it has to be something that they have always done. Now is not the time to learn a new hobby.

[29:16] And I struggle with this as a therapist because there's some tremendously valuable electronic tools, games, and things that can work on people's thinking.

But if a person has never used a computer or even a smartphone or a touch screen of some sort.

There's no tactile, there's nothing that feels the same, right?

It's not got buttons like old -timey phones.

Do you guys remember all the old -timey button phones that you could feel?

And what did they do every time you pushed the button? It made a different tone, right?

So there was touch that we could use and things like that for certain activities.

So I do use electronics with my patients, but I have to be careful because not everybody can do it.

And usually in that case, they may need a care person to be with them, to sit there with them and help them when they get stuck on the computer or the tablet.

[30:18] And they will still have only fair quality. They don't necessarily at a stage five have good quality.

People don't have really good quality in bathing anymore. They don't have good quality in brushing their teeth or combing their hair.

They may see the front, but they don't, you know, comb the back or take care of making sure that there are no rats' nests in the back there.

So it is stage six. So when we start to get into the stage six, this is where things are starting to become moderate to severe or middle to late.

This staging tool talks about a middle stage, middle stage, late stage, and then end stage. They actually break it up.

The functional assessment staging tool is actually in seven stages and this one is in eight.

Assistance Needed in Dressing and Sequencing Clothing

[31:09] At a stage six, when we use the adapted one, which is more a functional occupational therapy tool, the person will start to actually require physical assistance in putting on their clothes.

So what that means is we need to start to say, here, put your arm in the sleeve.

Here, put your arm in that sleeve.

How about we put it over your head? So a way to do it is you can lay things out or just give the person one item at a time.

When I'm independently doing it, I can walk to the closet, it, pick out my clothes, put them on the bed, and then sequence myself through it, right?

At this stage, at the middle stage, the person cannot put their clothes on without you telling them.

Put your bra on, fasten it behind you, fasten it in front, turn it around, put your one arm in, put your other arm in, pull it down, put your one arm in, put your other arm in, put your head over here, your panties, turn it the right way around, put your leg in, put your other leg in, pull them up.

They may need that level of cuing in how to actually get dressed.

[32:16] Functionally, this is where people start needing help with tying their shoelaces, putting on their shoes, putting their shoes on the right foot.

Little kids, when they're little, they don't know left and right, and so they put the wrong shoe on the wrong foot.

They may struggle with buttons and zips because we're starting to lose our fine motor coordination skills.

They may be able to put on a T -shirt, but not a button -up blouse.

They may need help in sequencing how to put on the button -up blouse.

[32:48] They will be able to use their hands and be able to manipulate objects, but they may need help in orienting them, or if there's a problem, they may not be able to identify there's a problem and fix it.

So usually when I work with my patients, I will let them try.

If I see they get stuck, I'll give them a little cue.

If they still get stuck, I'll see why they're stuck, and then I'll try to fix that part and let them finish it if I'm able to let them finish it.

So if a person's really struggling to tie their shoelaces, I'll give them two tries and then if they haven't done it on the second one, I'll go ahead and help them because I don't want them to get frustrated.

I don't want the person to get so frustrated, but I want them to try, but I don't want them to get frustrated and have a problem.

So I try to stop it right before they get frustrated. So you get to learn how to read people very well.

You got to look for the nonverbal signs of they're getting frustrated, they're sighing, They're looking like they're rocking.

There are lots of signs. People show you all sorts of signs when they're starting to get frustrated.

So I will let it go right up to before they get frustrated, and then I'll step in and help them.

But I won't just jump in and help a person at the beginning if they did not need my help.

Getting Lost in Familiar and Unfamiliar Environments

[34:11] They will need always help. Like, if you take somebody at a mid -stage or a stage 6A to a new location, like to my mom when she came to visit us a few years ago, actually this past week here in my house, two weeks ago I think it was, my mom and dad came down for a lunch or something, my daughter was here.

And my mom's been in my house numerous times, but my mom has mid to later stages of dementia. She's got middle stage, she's probably about a 6A of dementia.

And what was interesting is she's been to the bathroom in this house numerous times.

And this last time she came, every single time, and I kid you not, it's a straight shot, hang a left, hang a left in the bathroom.

It's not hard.

And my mom cannot locate the bathroom in my familiar but unfamiliar to her environment.

She gets lost in my house. My mom gets lost.

[35:16] So, people who are in an unfamiliar environment or unfamiliar to them will start to get lost and need cuing, and you need to show them the whole time.

They will need inconsistent help sometimes to go to a familiar environment.

So sometimes then even, and this will happen to people over time, they may start to get lost in their own home.

They may be trying to go to the bathroom and take a wrong turn down the hallway and end up in the bedroom. And then it's like, well, I was going to the bathroom. Where's the bathroom?

Confusion and Disorientation in Familiar Environments

[35:51] So people will start to get lost not consistently at a 6A, but they will start to get lost in their own familiar environment and may need some cuing at home to locate a place that they want to go.

They may attempt to walk to a familiar place.

They may know where they're going, but they may not find it.

They may go lay down on a guest bed instead of laying down on their bed because they see the bed.

They see the bed and they walk down the hallway, they see the bed and they go get in the guest bed because they wanted to lay down and they're not laying down on their normal bed or their normal place where they will lay down.

At this stage, people will still pick things up and use them routinely the way they should, like a pen, a spoon, a glass, you know, normal familiar things and I'm going to take a sip.

Purposeful leisure activities for individuals with cognitive decline

[36:49] And some leisure activities, but they won't know that there's a purpose necessarily to the activity.

So they can do a repetitive thing, but they may not necessarily realize that there's a result.

For example, making a card, right? You might be able to get them to color it, but they may not know that that card is supposed to go to their granddaughter for her birthday, and that it's her granddaughter's birthday.

So another example would be to be able to pick up dice and roll them, but not necessarily know that the game has rules and what those rules are for the game.

So these are a lot more of the functional types of applications of the Functional Assessment Staging Tool.

So I think I love this. I love this. This is one of my favorite tools to use.

So to 6b, last week we talked about the functional assessment staging tool, and this is the adapted one.

So to 6b, they will need help in bathing themselves.

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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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