an overview dementia capable 4 5/2/17 - amazon s3 · music only. 1 an overview of dementia capable...

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An Overview of Dementia Capable Care – Part 4 5/2/17

Course #: ID‐2017‐015

Certificates of Achievement will be available to Administrative Entity staff, Providers, Supports Coordinators, and SC Supervisors after completing all course requirements. Please view and then save or print your certificate in order to receive credit for this course.

For SCs and SC Supervisors, course requirements include successful completion of a pre‐test and post‐test.

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Course #: ID‐2017‐015

This webcast includes spoken narration.

To adjust the volume, use the controls at the bottom of the screen. While viewing this webcast, there is a pause and reverse button that can be used throughout the presentation.

The written version of the narration appears to the right of the screen.

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Course #: ID‐2017‐015

Hello, my name is Dave Maloney from The Columbus Organization, an ODP Training Partner. Along with the other presenters in this series, I am a Regional Affiliated Trainer with the National Task Group on Intellectual Disability and Dementia Practices. We are also Person Centered Thinking Trainers, credentialed through the Learning Community for Person Centered Practices.

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Course #: ID‐2017‐015

As a reminder, much of the information we present today is copyrighted by the American Academy on Developmental Medicine and Dentistry and the National Task Group on Intellectual Disabilities and Dementia Practices. Use of this training material is only authorized to trainers affiliated with the NTG.

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Course #: ID‐2017‐015

By the end of this webcast participants will be able to:

Understand how to apply a person‐centered approach to dementia capable care and

Understand the importance of environmental considerations in providing support to people with dementia

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Course #: ID‐2017‐015

The webcast series is divided into four parts.

Part 1 was an introduction to some basic concepts and misconceptions around aging.

Part 2 focused on what is meant by Dementia Capable Care and the importance of aDifferential Diagnosis.

In Part 3 we explained the role of Health Care Advocate ‐ a critical role for caregivers supporting a person with Dementia and IntellectualDisability.

This is Part 4, in which we will explore the connections to person‐centered thinking and offer some environmental considerations when supporting a person with dementia.

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Course #: ID‐2017‐015

As we begin the fourth webcast, I’d like you to remember Albert, the gentleman whose story we heard earlier. Albert’s experiences can help us to connect the dots to concepts and information we’ll discuss in this webcast.

Do you remember two things we mentioned that were very important to Albert? Spending time with his extended family and being a fan of the Buffalo Bills.

Remember too, that Albert’s caregivers first learned that changes in his abilities and actions were the result of depression and cardiac and vision problems. Later, they learned he had been diagnosed with dementia. People in Albert’s life helped him to make adjustments, like reducing his work schedule and making changes to the environment to minimize the impact of vision problems and making sure he stayed in contact with people who loved him, especially after he lost his mother.

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Course #: ID‐2017‐015

Albert’s story – as he began to experience a loss of ability – illustrates what many caregivers face when supporting someone with health issues and dementia. The path ahead was not about gaining skills and having new experiences, or increasing independence and taking on big new challenges. Albert’s family and caregivers experienced a shift in thinking from rehabilitation – gaining and maintaining skills – toward providing him with comfort, familiarity, and satisfaction as well as health and safety. The word we use for providing care focused on function, safety, and comfort is habilitation. And as always, there has to be a focus on quality of life.

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Course #: ID‐2017‐015

As the focus of care shifted from rehabilitation to habilitation during a time of progressive loss of skill and ability, Albert’s caregivers had to keep a few things in mind.

They had to support Albert with changes in environment and schedule – and they also had to think of ways to help him stay engaged with what was important to him: family, football, time with people he loved and that loved him. People might often see Albert’s big smile, but maybe consistency, routine, and predictability became more important to ensure more good days. Making choices and decisions might be easier with one choice at a time. Maybe there would be fewer bad days if Albert had activities that he could easily succeed in doing.

Albert and his caregivers had to adjust the support he received. It became clear that his needs in the future would be different than his experience in the past. Environments had to be examined in order to allow Albert to stay as independent as possible – perhaps that meant tailoring his environment to give clear cues where to go and what to do. People needed to adjust to listening to what Albert was telling them through actions in addition to words, and give him the response he wanted based on what his actions said. For example, maybe caregivers needed to learn to watch Albert’s face for signs of confusion when he became less able to tell them what he was feeling. For Albert and his caregivers, it was important to know what skills were changing, but it was also important to look for what he could continue to do well. Focusing on Albert’s remaining abilities reinforced his sense of independence and worth.

Most importantly, as people began to see changes in Albert, they had to remember that he was still Albert: Buffalo Bills fan, loving family member, a man with a contagious smile.

These aspects of providing quality care for people with dementia align with the approach of person‐centered thinking: the foundational principle of supporting people with Intellectual Disability. In this way, dementia capable care and person‐centered thinking are perfectly complementary to each other.

Let’s take a look at how some specific person‐centered thinking skills can support dementia capable care. The person‐centered thinking skills we’ll review are taken from the Learning Community US.

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Course #: ID‐2017‐015

Think again about some of the things that we said were important to Albert: time with his extended family, especially special occasions and holidays, and watching Bills games. As his condition progressed, those around him needed to continue to support him in being with family – not just spending time, but in the ways that were important to Albert, even as they needed to also pay attention to changes caused by medical conditions and dementia.

Balancing Important TO and Important FOR is the fundamental concept in Person‐centered Thinking. • Important TO is about what gives life meaning and purpose, important relationships,

things that are essential and highly desired and can provide satisfaction and comfort.• Important FOR includes what needs to be done for health, safety and well‐being; issues

that are important for safety at home and in the community; and being a valued member of one’s neighborhood and community.

It’s all about finding the balance between Important TO and Important FOR and readjusting as things change to maintain the balance. As medical and health and safety concerns became more of an issue over time in Albert’s life, he and his caregivers had to be more careful to preserve those things that were important TO him – while also making sure he was healthy and safe.

Keeping the balance between Important TO (quality of life, relationships, satisfaction and comfort) and Important FOR (the demands of providing health and safety for someone with dementia and related medical issues) takes conscientious and continual attention, finding what works and doesn’t work, and adjusting support to what we learn along the way.

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Course #: ID‐2017‐015

Keeping in mind that balancing Important TO and Important FOR is fundamental, there are other person‐centered skills that help discover information to provide good support for people with dementia. We’re going to talk about a few of the many person‐centered skills using Albert’s story as an example.

Person‐centered skills can help caregivers examine what has happened and plan for changes in the future. For example: if you looked at Albert’s ISP ‐ would you expect to see changes in what was written in What Makes Sense/What Doesn’t Make Sense after people learned he had been diagnosed with dementia? As the condition progressed, did people need to rethink what is important to Know and Do to support him?

How did Albert’s actions and words indicate that he was communicating differently? Did those supporting him need to think carefully about what he was saying and doing, what it meant, and the best way to respond – and update the information in his plan about understanding communication so others would know what Albert was communicating and how to respond?

As changes unfolded for Albert – both cognitively and physically – what important routines did people need to make sure they preserved or adapted?

Over time, Albert’s medical conditions and dementia probably meant that he was increasingly meeting new people – such as clinicians and service providers ‐ and spending time in new and unfamiliar settings. Caregivers had to plan to support Albert in these transitions, which were probably stressful for him, by understanding how to make a not so good day a better day, perhaps by including some of the things that provided comfort and happiness for him.

Focusing on Albert from a person‐centered perspective in addition to meeting health and safety needs helped caregivers remember who he was. This is important for people experiencing the effects of dementia; but it’s also important for caregivers to keep in mind what they have always liked and admired about the people they support, as support becomes more challenging.

There are many other person‐centered thinking skills that would work well to support a person with dementia. But right now, we will be taking up a new topic ‐ Environmental Considerations.

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Course #: ID‐2017‐015

I want you to take a moment to think about what you need to do while watching this webcast:

* If there’s background noise, you need to find ways to tune it out.* Perhaps there are other people talking or walking past you in the place you’re watching thewebcast.

* You have to concentrate to focus on the screen. * Maybe someone is making lunch and it smells delicious – and you find you have to bring your mind back to focus.

The ability to make sense of what’s happening in the environment around us depends on our ability to concentrate – to understand and interpret the sights, sounds, and other things we notice with our senses and decide what to pay attention to. It also depends on how well our senses function; someone who finds background noise especially distracting because of a hearing impairment might have to find ways to adapt in order to better pay attention.

Think again about how, in order to get through your day successfully, you need to manage and discriminate all the input from your senses. We all do this in order to interpret, understand and react to our environment. When our senses are diminished – say, when we have a bad head cold – we may not be interpreting the environment and discriminating input from our senses as well as we usually do. People around us may perceive that we are acting differently while we struggle to make sense of things.

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Course #: ID‐2017‐015

In the first two webcasts, we talked about dementia in terms of physical changes: the causes of dementia are happening in the brain. Dementia not only affects how someone thinks and acts – intellectual ability; it may also affect sight, hearing, touch, or all of the senses. Think about how changes in the brain related to dementia can also affect vision. For example, people with dementia may experience color and shadow differently than they used to, which may in turn change their ability to react in ways that others expect.

People with dementia may not be as capable as they once were to tune out stimulation from their environment. If someone is not able to discriminate and interpret sights and sounds around them, it could be easier to be distracted or confused. If I was supporting someone who was having a hard time tuning out noise around them – and I didn’t realize why – I might interpret this as “not paying attention.”

So far, we’ve talked about overstimulation in the environment. But environments that are under‐stimulating can also cause problems for someone whose senses are diminished. They may have difficulty integrating and making sense of the environment around them. Someone who feels under‐stimulated by his or her environment because of compromised sensory ability might appear withdrawn or disinterested. If we don’t know the underlying sensory issues causing a reaction ‐ OUR interpretation of the person’s actions may lead us to the conclusion that there is a behavior problem.

And so there are several reasons why it’s important to pay attention to environment if someone has been diagnosed with dementia or people suspect they may be. First, sensory issues that cause environments to be over or under stimulating are a quality of life issue. Second: sensory issues that cause people to react in unexpected ways may be misinterpreted as behavior problems. Remember too that dementia affects all aspects of a person’s life and is progressive, so if senses are affected, we would not expect improvement over time. It may be that senses will continue to diminish as the disease advances.

And here we have an opportunity to connect the two core concepts we have discussed in this webcast: thinking from a person‐centered perspective, we would want to look for ways to change the environment, not ways to change the person.

Next we’ll look at some examples. The next few slides will include opportunity for you to think and respond. Have your keyboard and mouse ready.

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Course #: ID‐2017‐015

If you’ve worked in the Intellectual Disability system, this photo may remind you of a day center. It might also remind you of a senior citizen center in the community.

As you look at the picture, think about what I said about dementia: because it affects the brain, it may also affect the senses. What about this setting makes you wonder about how people with a visual impairment might perceive it? I’ll ask you to type some ideas into the box on the screen in a moment.

First, think about vision in the context of changes caused by dementia. Pay attention to things in the photo that might cause difficulty for someone with diminished ability to perceive color differences, light, shadow, and depth?

Type three different ideas into the box and then click submit.

Did your ideas include the fact that the floor and walls are almost the same color – and someone experiencing difficulty distinguishing color might not perceive where the floor ends and the wall begins? Perhaps you noticed the bright glare on the floor and wrote that impaired vision might cause someone walking across it to be unsure of where to step. Or maybe you noticed that there are stark differences in lighting from the front of the room to the back – and wondered if someone with diminished vision might perceive the shadows as even deeper and be unable to see or interpret where the exit door is. Or perhaps you took note of the similarity of the colors throughout the room, thinking that it might be under‐stimulating, or even that it might be difficult to find the way across the room because there’s really no clear path to follow.

Let’s say it again: dementia may affect more than one sense. I asked you to think about someone with visual impairments, but you may also have wondered about how other senses may be affected: would someone with compromised hearing find the background noise in this room with its high ceilings and hard surfaces difficult to discriminate? Could the noise be distracting or confusing?

Click the submit button again to advance to the next slide.

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Course #: ID‐2017‐015

Let’s try another example. Still thinking about vision, take a close look at the hallway in the photo. Imagine if someone you were supporting needed to walk down this hall to his or her bedroom.

In the box, type your response to this question: “What reasons may cause someone to be unable to find his or her bedroom?” Click submit when you are satisfied with what you wrote.

You may have noted some of the same issues we talked about in the previous example: glare on the walls, poor lighting, deep shadows.

You may also have wondered how someone would know which bedroom belongs to the them? There isn’t any way to know. Perhaps there is a way to personalize the pathway or the doors so people can find their bedrooms and not wander into someone else’s space.

Did you look at the end of the hall and think what someone with difficulty seeing light and shadow might think of the dark room at the end?

Did your response include the fact that the color of the carpeting and the lower part of the walls are almost the same – and someone with difficulty distinguishing color differences might be cautious finding his or her way? In fact, the colors are so dark and the hallway in such deep shadow that some who have looked at the photo have wondered if the hallway might be perceived like a trench or ditch.

Someone who is experiencing dementia and perhaps visual problems may find this hallway confusing to navigate.

Click the submit button again to advance to the next slide.

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Course #: ID‐2017‐015

We’ve seen just the tip of the iceberg when thinking about environment and how it affects people with dementia and the sensory impairments that often are part of the disease. There’s a lot more to learn about the connection between dementia’s affects on the senses and how environment can be adjusted to provide better support and safety. The resources I’ll talk about at the end of the webcast will give you a place to start to look for practical ways to modify environments.

Here are a few simple things to do that may help improve the environment in support of people with dementia:

* Keep environments as free from visual clutter as possible to minimize confusion and distraction.

* Organize the environment so that things that belong together and have a common purpose are in the same place. For example, if someone has difficulty remembering a mealtime routine, avoid having plates, utensils and other meal‐related items in areas that are intended for

another purpose.

* If someone is experiencing dementia and has related visual impairments, it’s especially important to ensure paths are clear. Neither of the two examples we looked at included clear paths for people to follow to get where they wanted to go. Having clear walking paths is not

just a safety issue; it’s also a way to support people inexperiencing less anxiety when moving through their environment, and a way to support people’s

independence.

* Glare can be especially problematic for people with visual problems associated with dementia. It not only can cause discomfort, it may be a distraction or a source ofconfusion. Glare can be reduced in simple ways by using low‐gloss and textured surfaces.

So, these are just a few simple ways to think about modifying the environment for people with the visual problems that are often associated with dementia. But don’t forget…

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Course #: ID‐2017‐015

…that dementia can often affect many of the senses, not just vision. We may not be aware on a conscious level that all of our senses are working together to make sense of what’s happening around us in the environment. We naturally integrate the input we receive –tuning in to what’s important and tuning out what’s distracting – and interpret the input in order to understand and respond. Someone who has impairments in vision, hearing, and touch may not be interpreting the environment in the same way. He or she may rely on one sense more than others to take information from the environment, but since our senses work together – if one sense is compromised, others can be affected as well.

If we know that someone we support is experiencing diminished capacity to receive and interpret information from his or her environment, we can adapt the environment and our interaction to increase the person’s understanding and comfort. Compromised sensory capacity is often a part of the aging process, including adults with Intellectual Disability.

Since we know now that dementia affects the ability to process, interpret and respond to input from the environment – and we know that there are ways to adjust and modify the environment based on each person’s unique abilities and limitations – our own eyes are open and we are more likely to be looking at the environments in which we support people in new ways.

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Course #: ID‐2017‐015

We talked a few minutes ago about organizing the environment by purpose. Another way to adapt environments is to make sure there are clear cues that help people know what the environment is for and what they are supposed to do there. The example here is the toilet. In the picture on the left, all of the colors are the same shade. Someone experiencing visual problems might have difficulty finding exactly where to sit, miss the safety bar, or not be able to find the toilet paper.

On the right is an example of how bringing together location and function – with clear visual cues – can assist people in finding the way and using their environments they way they want to. The sign is clear and matches what people will see when they enter the room. Notice how the bright red seat and grab bars are in strong contrast to the toilet. The floor and walls are also in contrasting colors. These modifications are simple and inexpensive.

If we’re supporting someone who benefits from these kinds of environmental cues, it’s important he or she would have a consistent experience from one environment to the next. For example, if caregivers find that modifying a bathroom at home means that the person is more successful and independent in using it, the same modifications should be carried over into the place they spend time during the day. Coordinating consistent environmental cues across the places where people receive support takes commitment and teamwork.

And to connect to the person‐centered concepts we discussed earlier: these are simple changes to the environment, not the person, and could minimize or avoid what might be perceived as “behavior problems” and overall improve the quality of life of the person and the experience of the caregivers.

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Course #: ID‐2017‐015

In discussing environment in support of people with dementia – who may also be experiencing related sensory impairments – our first thought is about the person’s safety. It’s also important to keep in mind that changes to the environment should work to the person’s benefit and be useful and functional for people providing care. Environmental modifications should support safety and comfort for the person but not work against what caregivers need to do in providing support. Modifications that work for the person may also work to make a better day for the caregiver.

Remembering that people with dementia who have visual impairments may have difficulty distinguishing color and depth, it’s very important to look for obstacles and remove them. If there are objects that may pose a threat, they should be locked. Another wise way to disguise objects or areas to avoid would be to blend their color with the surrounding environment, making them less perceptible to someone with visual impairments. Using color as a disguise might also help prevent someone from using an exit that caregivers might not want to be used. Think of a door the same color as the walls around it and how it might be less noticeable and less likely to be used.

On the other hand, if another door in the setting WAS the one we wanted the person to use, painting it in contrasting colors would bring it to the person’s notice. Think about the two examples of door color in the context of a setting where it was important to ensure people didn’t wander from the program without someone noticing – but it’s also important that people can find and recognize the exit to use in an emergency.

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Course #: ID‐2017‐015

A common concern for caregivers of people with dementia is the worry that people will wander. This is a real concern that we should pay close attention to in order to successfully minimize this possibility. Fortunately, some of the ideas that we’ve been discussing about environment can be used to help people find their way in their environments and minimize the possibility of getting lost.

First, assume that someone experiencing dementia may perceive even familiar environments as new,which means that they are making a new map of the environment in their mind each time they are in it. Consistency in the environment – and across environments a person uses – is one way to increase the opportunity to provide familiarity, comfort, and the ability to navigate the environment safely and successfully. So, things that the person relies on to find his or her way – in other words, “landmarks” ‐should stay the same. For example, keeping furniture, lamps, or personal objects in the same places as much as possible may provide the person with a sense of, “Ah. I know where I am and where to go from here.”

When someone does appear to be unsure of the environment, a gentle touch – perhaps on the elbow to guide them – might be welcome.

Modeling is another way to help people we think may be perceiving the environment as unfamiliar –simply show the person how to get what they want or where they want to go.

Guiding through gentle touch and modeling are not unfamiliar techniques to caregivers; but when a person is experiencing dementia and may be remapping even familiar environments all the time, these approaches become important not only to health and safety, but to comfort and ease.

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Course #: ID‐2017‐015

We’re coming to the close of the fourth and final webcast in the Dementia Capable Care series. If you are a caregiver for someone who has or may have dementia – or you are watching this webcast in order to better understand dementia capable care – the information on this slide is intended for you.

Often, systems that provide care for adults with multiple challenges like dementia and Intellectual Disability can operate in silos. We want to encourage you to think about ways to break out of the silos and build bridges between the systems.

There are many examples listed on the slide of supports and organizations that offer insight, expertise, and support to caregivers of adults with Intellectual Disability and dementia: state government, local aging and dementia support networks, and even volunteer organizations.

If you are new to providing support for an adult with dementia, these organizations can be invaluable resources for you as a caregiver and to the person you support.

Also, don’t miss the point that building bridges works both ways: while we may have much to learn from the expertise of others whose work focuses on care for people with dementia, we also can return the support by providing insight into our own systems and supports that other care providers may not yet know.

As the population of people with Intellectual Disability ages and more people begin to experience dementia, collaboration and cooperation among systems will become ever more crucial to providing quality care. This is an encouragement to reach out for support, and to offer it in return.

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Course #: ID‐2017‐015

These webcasts have been a high‐level overview of dementia capable care. There is much to learn and support for people with dementia is advancing at a rapid pace. This slide lists additional resources to encourage you to continue your learning. A copy of these resources is also in the course where you found the webcast.

The National Task Group website link is listed here, as well as a link to the Early Detection Screen for Dementia and a link to more information about supporting people with Down Syndrome and dementia. There are also resources that will help you learn about dementia, environment, evaluation, health care advocacy, and promising practices being implemented on a national level.

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Course #: ID‐2017‐015

The first webcast in the series opened with this quote. As you read it again, think about Albert. His story about experiencing medical challenges and then the onset of dementia helped us learn about the need to focus on obtaining and following through with good diagnostic care and the importance of paying attention to issues of health and safety and the need to be a strong advocate.

But Albert’s story also tells us an important truth about how to support people with dementia: people who knew and loved Albert were able to help him keep a balance between health and safety and quality of life that made him happier by preserving what was important TO him. Albert was fortunate to have a number of people who remembered who he was despite changes due to dementia.

But to a person you know – you may be the world. You may be the person who can make a difference.

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Course #: ID‐2017‐015

This concludes the webcast series An Overview of Dementia Capable Care for People with Intellectual Disability.

Please be sure to complete course requirements and print and save a Certificate of Achievement.

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Course #: ID‐2017‐015

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Thank you for watching this overview of Dementia Capable Care. If you want more in‐depth training, please contact us.


Course #: ID‐2017‐015

The primary content of this webcast was developed by and is the property of the National Task Group on Intellectual Disabilities & Dementia Practices (NTG). This content is copyrighted by the American Academy on Developmental Medicine Dentistry on behalf of the NTG and its use in this webcast is in compliance with NTG’s fair use standards.

The webcast was produced by the Pennsylvania Department of Human Services, Office of Developmental Programs in partnership with The Columbus Organization.

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An Overview of Dementia Capable Care – Part 4 5/2/175/2/17

Course #: ID‐2017‐015

an overview dementia capable 4 5/2/17 - amazon s3 · music only. 1 an overview of dementia capable...

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