Beyond Safe: Rethinking Dementia Care for Real Living

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[gentle music] Welcome to the Pro Aging Podcast. I'm Steve Gurney with Positive Aging Community and the Beacon Newspapers.
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Today, we're diving into a conversation with another pioneer and thought leader shaping how we live life with purpose, no matter our age or ability.
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These discussions, and hundreds of other valuable resources, are available at proaging.com. So let's get started. I am thrilled to have these two women. I've gotten to know them, uh, rather well.
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Uh, they are authors and thought leaders on the topic of dementia and caregiving, and, uh, they had a very positively reviewed, uh, presentation at the Maryland Jill- Gerontological Association, and I told them, I said, "Why don't we, why don't we do that live here for our discussions?"
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Um, so, um, anyways, uh, Barbara and Ruth, great seeing you. Before I, I hand things over and slide behind the curtain, uh, for your presentation, uh, let's get to know the two of you a little bit better.
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Uh, tell us a little bit about yourselves. Okay. Hi, I'm... Uh, thank you, Steve.
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And, um, I'm Barbara Hewlett, and, uh, I've come to the, uh, senior market- marketplace or whatever by, um, through my work for most of my career where I designed healthcare facilities, architecturally designed healthcare facilities f- and including memory care facilities.
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And then my family made it all real and, uh, had a different focus on it, including my late husband, my mom, and several others. So that's how. And, and then when I met Ruth, um, who was...
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I'll let her tell her story, but we got together and, um, created the, uh, uh, Taming the Chaos of Dementia Institute, uh, based on my first book on the topic. So Ruth? Yes. All right.
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Hi, good afternoon, everyone, and thank you, Steve, for, uh, for inviting us today. Uh, I'm Ruth Shay. I'm a geriatric, um, social worker by profession.
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Uh, worked for a long time doing house calls out of MedStar Washington Hospital Center, and I have personal experience as a, uh, I guess a sandwich caregiver, uh, living in a four-generation household for 10 and a half years.
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So thank you. I love it. All right.
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Uh, well, folks, I'm gonna duck behind the curtain and, uh, but before I totally duck behind, I'm gonna make sure that Barbara can share the slide deck and, uh, they have, they have some great content to share with us today.
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And, um, and I believe, I took a peek at it, you're, you got a couple of breaks, uh, th- where you're gonna pass from one to the other.
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And so, uh, what we'll do is, uh, I'll, I'll monitor the chat, and if at those breaks there's some burning questions, that we can have a little discussion and we'll just keep on moving on.
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But just, uh, shout my name out if you need help. I'm, I'm gonna be tuning in as well. Okay. Thank you. Uh, so we're gonna talk about, uh, a new vision in dementia care and empowering normalcy and belonging.
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Next slide. Yeah.
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We're, we're going to talk about rethinking some of the very fundamental issues about dementia caregiving, uh, from both home caregiving and in care facilities, and for how, what we need to be looking for in these care facilities.
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And how we're gonna continue to live, uh, not just be managed. Mm-hmm. So what we're gonna explore together today is we're gonna change the lens of looking from managing to empowering.
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We're gonna learn about Barbara's life work of designing spaces and environments that support living.
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Someone with dementia, uh, that we lose our ability to express feelings with words, so behaviors become the primary way of expressing fear, anger, or frustration.
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And then finally, we'll look at some simple interventions that can make a positive change in daily routines. Next slide.
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Uh, as we look at the frightening statistics that by 2050 12.5 million of us will have Alzheimer's, but still we mostly use just the institutional model of safety and custodial care, but today we're gonna look at another way.
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So we're going to look at one that provides safety, but more of an opportunity providing for our individual to live as fully as possible. Safety, but at what cost?
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The individual care, choice, routine. And we have that. It's often at the cost of scheduled and managed care. Next slide.
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As we're isolating, are we isolating individuals or incorporating individual likes, dislikes, personal history, or personalities? So for decades, we have been asking,
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how do we manage dementia? How do we reduce behaviors? How do we keep them safe? But what if this is the wrong question? Oops, sorry.
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So if we change the question, and we ask how do we have those of us with dementia to continue to live fully, what would that look like? Do we know things that spark joy and contentment?
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Do we know what causes unnecessary worry and anxiety? If we shift our thinking and change the question, how can we help us with dementia to live fully, change can happen.
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We can empower the life of those of us with dementia by how we communicate, how we design living spaces, and how we show our care.
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So a few of the things that undermine empowerment. If we look at the institutional patterns of over-control, lack of individual choice, rigid scheduling, staff-driven decision-making,
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clinical environment with task over relationship focus. Next slide, thank you. Uh, if we shift our focus from
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institution to community, what would happen if instead of individuals, we're neighbors with relationships with others? We had a sense of belonging. Instead of rigid schedules, there were routines.
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We're going to look at some very innovative and outside-the-box concept of living with dementia. Before we start that, we're gonna stop and pause.
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I want you to think of an institution that you are familiar with, and ask yourself, would I want to live here? Do people have choices?
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Is this a place of care or living? And Steve, I think we'll stop h- pause for a moment. If you, uh, you know, if there were any questions or comments. Yeah. Uh, nothing yet.
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Um, but I like your reflection question because I think oftentimes when we're looking at communities and different living environments, it's really easy for people to say that they, um, uh, "Oh, Mom, you're gonna love it here," or, "Oh, this will be a good place for my husband."
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But r- reflecting on would I, would I wanna live here, and, um, let- let's keep on moving, but I'll keep my eyes in y- Okay... I'll keep my eyes open for, uh, chat. So Barbara's taking the next, uh, section.
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Okay. Oh, um... Oh, let's see. I, well, w- well, I think the, this is kind of a peek behind the curtain. Uh, uh, Marilyn asked, "Do you plan to share
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the names of different institutions that are using the model that you're gonna be talking about today?"
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Or, or are there, are you gonna describe a model that is being used by institution, uh, communities in the region or, or throughout the country? Well, I think that's a, a good lead-in to our next section.
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And, um, our, our models in memory care, we're going to s- be speaking s- specifically about, um, facilities and models in memory care, not the whole continuum of care for- Okay... for that.
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And although we're not gonna mention specific names, we will, um, suggest values and things you should be looking for when we talk about this shift in thinking. Um- Okay, great...
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so I wa- I wanted to start with a model that's, uh, been around for quite a while, more than 20 years, and it started in Holland in a, a community called Hogeweyk.
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And, um, it is, it was revolutionary, it is still revolutionary, and it is a model that really, really focuses on normalcy, and it has changed the thinking, actually flipped the thinking from anything resembling an institution to a community, from control that we see in traditional nursing homes to choice.
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And th- also, the very interesting part about this is that it is late-stage dementia. This is not early-stage dementia.
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So this is the point where we run into many of the problems both in caregiving and communication that we'll see.
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And so this particular model has, um, moved to models, uh, throughout the country, throughout the world in sometimes lesser, sometimes different.
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But the idea is to focus on the individual
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Uh, the, those of us that have dementia, and what is it that we still value in life and how can it be achieved in, uh, and within safe boundaries?
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Um, so movement for example, that is seeking exiting, getting restless, um, and we still wanna protect them with some level of safety and how it's done.
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Well in a Hogewey, it uses the principles of staying normal, having choice, smaller scale, living in a community, um, and freedom to live, uh, within safe boundaries.
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And some of these facilities have developed kind of theme park-like, and that's not really part of the model. It is creating this, uh, normalcy. They c- have little shops, they have outdoor cafes.
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Um, now the, there, this is cross-training of staff that can work in the shops and also be, a, a caregiver and a nurse. So there, there are some things that make it work. But the focus is,
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is 100% on pr- providing what is a normal life. And what is a normal life? It includes normal routines of very, um, specific meaningful roles, folding laundry, familiar spaces. That's a kitchen.
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That's a, a, uh, the dining room. That's my bedroom. Um, and, um, creating opportunities for the social interaction, for having events, for having purpose, and allowing as much choice as, as one can manage.
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And it works. Uh, it's quite amazing. Uh, there's a very interesting, um, um, video.
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If you go to YouTube, um, Sanjay Gupta, um, a- did an extensive hour-long interview at Hogewey, and from a medical doctor, talks about why this model works and how you can in- enhance it within other facilities.
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It doesn't have to be totally a village concept to work. And it works because design and the architecture of the space or the environment is really something we don't see.
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We're not seeing it as a caregiver, for example. But it's there working in the background. Every color that's used is there to see something or not to see something.
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It, it reinforces independence, or when it's not used, it creates dependency. The brain,
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it, it is designed for how the brain works, how the brain sees space, and how even when it no longer has cognition to sort out words and strategies, the, um, intuitive aspects of the form of the architecture create meaning for this environment.
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So it relies heavily on visual clues, emotional memory, and the senses. Very important part. And it has, focuses on being a residence over an institutional model.
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It's not designed for the efficiency of staff as much as it's designed for the normalcy of us that have dementia. It works to reduce that cognitive load so the brain doesn't have to figure out,
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what is that? I can't quite make it out. Is it a door or is it a wall? Is it a floor or is it a hole in the floor? Um, so it reduces cognitive overload so the brain can focus on what really matters.
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It uses destinations, and not everything is the same. The dining room doesn't become an activity center. Um, it, it uses dest- destinations that are familiar to the people that are living there.
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A laundry room where you fold clothes. Places have purpose. Places have meaning. And one can identify with these places.
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Even with, uh, those of us who are bedridden, this concept is possible, and it is possible because we continue to think of, of,
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of us with dementia as people, as humans that still have feelings and emotion. We can have empathy for them, and when they can't no longer speak,
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music is a possibility to reach them and other ways of, of reaching them. Uh, we can take, um, our spouse on a fishing trip with virtual reality.
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So we need to think differently and of, of, of how we have been taught and told, uh, of what dementia does and doesn't do to us.
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The senses, using light and color and textures can really provide calm and cues to, clues to what that is. Um, memory boxes can help us define that that's my bedroom or that's my space.
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A design can reduce incompetency. This, this is a, a model that's, we've known about for more than 20 years, and yet still we don't use this concept enough.
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From the bed, the, we can see the toilet And not only can we see the toilet, but the color helps us to find that that's a toilet, and we know that when we have that urge, that's where we need to get to.
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We don't need to ask, "Where is the bathroom?"
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Layout, the way the architecture, um, provides how we move through the space, without dead ends, recognizable paths, recognizable dead e- uh, destinations, clear visual clues.
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You don't have to stop and ask questions as to where things are, and when wandering takes place, it's within a safe, looped environment.
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So again, an opportunity to stop and reflect, um, is asking ourself the questions of would I feel comfortable and confident in this environment?
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Does the space support independence, or is it confusing? Is there a place to sit down by the window to look at the birds, or do I just have to move on, I can't stop?
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Does this environment create stress, or does it help us feel calm? Are there any questions at this before we move on to the next section? Um, yeah. Uh, let's see. Um, uh, a few things.
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Uh, so, uh, Malabi says, um, that I believe her loved one is in an independent living community and has an around the clock caretaker or, or, or pretty much a caretaker from, from
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morning till evening. Uh,
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any, throughout your presentation, if there's any sort of suggestions and words of wisdom for somebody, because I, I hear this a lot too, is, is that we're either caring for a loved one in, in our home, or we are caring f- or our loved one is in an independent living, not a dementia specific, uh, community.
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Uh, that's, that's one thing that kind of came out there. Uh, Peggy was wondering about more about the brain and the design of spaces, and, um, and Steven is kind of looking to connect the dots.
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It's like, as a caregiver for my wife, how can I sort of take this information and be a better caregiver? Thank you, Steven. Thank you all for those great questions. Um, there's, uh,
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there, uh, uh, being a caregiver first is really overwhelming. I've been there. Ruth's been there.
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We know personally what it feels like, and much of what we've learned has been from our loved ones that have taught us these important lessons.
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Um, uh, I think as a, as a family caregiver, you are the most knowledgeable about that person,
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and that is really, really an exceptional gift for your loved one.
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Because you can share that knowledge about your spouse, what they like, not just do they drink coffee or tea, but what do they like? What do they do? What makes them happy?
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What are real pressure points that are, that can send them off or make them afraid? So by sharing that knowledge of your loved one is probably one of the best things you can do in a care facility.
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And we know care, in care facilities staff turnover is, is, is high, and so if we fill out a form or tell somebody when mom moves in of what the issues are, it, chances of a,
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coming down to people that actually have interaction is, is slim.
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So providing as much knowledge as you can, sharing things about your loved one is going to be ultimately one of the most helpful things you can do in a care facility. Yeah.
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And, and we've got several people on the call based on their, uh, their comments that they're, they're caring for people right now in their space.
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And, uh, a- and, you know, especially given the fact that the, the proper...
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Uh, so maybe some reflection and discussion on, uh, how can we apply some of the principles that are there at the Netherlands Dementia Village to our own environments?
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Uh, I think I'm getting a few things about, a, a few comments about that. Okay. And- So some of- Yeah. [laughs] What we can do is, and, and it's hard, I know, I've been there,
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is be as normal as possible. Um, keep your loved one in the loop. Talk to them. Reassure them. Use your body language.
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Telling them that you care, but then looking distracted or busy or annoyed doesn't help. Use that body language, reinforce you care. Touch their arm, touch their shoulder, look into their eyes.
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Tell them how important it is to th- to you that they're comfortable or that they're pleased with something. When, when problems arise, which they will and always do,
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y- you move on as quickly as possible. Use the first, um, f- Distraction, positive distraction you can. If they start with an argument or say something that's not correct, change the subject. Walk outside.
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Talk to the bird or the squirrel. Uh, call the dog over. Whatever you can do, distract from the negative moment, and they will quickly forget.
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And you will be the person that is best able to come up with a positive distraction because you know who they are, and you know what will distract them.
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And if something worked yesterday and not today, try something else. And, um, these are, uh, the, the... Keeping normal, a normal routine, normal meals. Uh, eat dinner with them, breakfast, just as you have in the past.
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Um, so try to keep it as normal as possible. I love it. Um, all right. I, I know we got some other comments, questions, things, but let's, let's keep on going, um, uh, the, um...
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Yeah, uh- Okay. And- Yeah, y- Yeah. In, in this section, we're gonna talk about, uh, behaviors, um, may be expressed without the benefit of words, but using body language.
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So every behavior is a response as a confused brain is trying to sort things out. If we agree that behavior is an expression that has meaning,
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some of the feelings that may be communicated are pain, discomfort, uh, fear of not understanding, abandonment of not being able to get someone's attention for an urgent need, need.
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Confusion, not being able to remember the steps of brushing your teeth or how to hold a spoon and eat.
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Uh, loneliness, lack of engagement, no physical touch, a pat on the shoulder, a holding hand. It could be overstimulation by noise, the number of people, or light.
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Next slide, thank you. We know that deme- dementia causes significant cognitive, uh, changes. Executive function is impaired.
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Memory, thinking, and reasoning skills make it more difficult to perform daily tasks. Filters change with language. Sexuality can be affected.
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Short-term memory is impaired, resulting in frequent repetition or questioning. Note that emotional memory is preserved. They may not remember what you said, but they will remember how you made them feel.
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We have to remember sensory interpretation can be altered, can be affected by hearing loss, adding confusion and social isolation. Speak slightly slower, facing the person so they can lip read.
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And then there's visual impairment can lead to greater disorientation and increased risk of falls. Check the lighting.
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When serving a meal, use a clock to describe 6:00 being where the spinach is, 1:00 is where the glass is. Introduce yourself and face the person while speaking. Next slide.
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Uh, so let's look at some common triggers, and we're gonna put them into four buckets. One are environmental triggers, whether you're too hot, it's too cold, uh, the noise, the light, the clutter.
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The physical bucket of being overdressed, underdressed, pain, hunger, fatigue, perhaps needing to use the toilet. Uh, emotional, anxiety, sadness, grief,
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anger, fear, or frustration. And for some with dementia, the grief is really a, a big thing. They can't remember,
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uh, or we can't remember that someone has died, and when it's mentioned again, that grief is new every time. And social, too many people or not enough, uh, interaction.
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So this slide suggests some possible triggers, but there are many, many more. I love this slide, this, uh, escalation cycle. So we start with, uh, let, let's use the trigger of a shower.
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The shower causes confusion. We don't remember all the necessary steps. It causes anxiety. I can't do this. I don't wanna do this. That causes escalation. I won't remove my clothes.
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It causes a reaction of screaming or crying. And, and think of if you have someone coming in to assist with bathing that you're not familiar with, and they come in and say, "Okay, it's time for your shower.
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Uh, remove your clothes." How would that sit with you? We may forget that the caregiver also goes through this escalation cycle.
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We need to remember that we can Control responses and shape the outcome. It's important we have to avoid overcorrecting, arguing, paying attention to the tone and the body language.
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Presence matters. Just a, a quick aside and a story. My mother's, uh, car, the real rear axle broke and she could no longer drive, and every opportunity she had she would blame me for breaking her car.
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And I'll tell you, that was a trigger for me.
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I reacted to that every time by saying, "Uh, I, I did not break your car," when what I could have done better was acknowledging that she was losing her independence and that that was very important, and I could have done that a lot better.
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So I'm sure there are opportunities that, that we have that we can improve by just pausing, even if you have to step and turn, get out of the room for a moment before that reaction. Okay, next slide.
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Uh, so we need to look for ways to validate more and correct less. Next slide, please. Behavior is the signal, sometimes the unfiltered communication of a need.
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So ask yourself, when behavior escalates, what is my first response? Do I try to correct or understand?
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What might this person be trying to communicate, and how might my response be influencing the outcome?
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So we're gonna take another, uh, pause here if there are any questions or comments. Yeah, and I think that some of these y- uh, I just wanna throw them out there in case you can weave these into your, your presentation.
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But I'm just, uh, r- reading, uh, uh, what is y- you know, a, a common problem, is I'm a solo caregaj- carever- ca- caregiver for my sister with dementia. She's living at home.
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How do I find reasonably priced, uh, memory care, um, in the DC Metro area where they live?
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Uh, a- and, uh, the sister is overwhelmed and, uh, um, and she says, [laughs] "Maybe this is the wrong space to ask this question." No, it's not.
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Uh, I will tell you, we might not have the exact answer for you, but just, uh, in this space, uh, we want questions like this because it makes us all realize we're not alone, and these are real-life problems, uh, uh, Nadine.
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Um, let's see. Uh, Kim was asking, can y- would you all be open to sharing the slides, uh, like a PDF of the slides? Yes. Okay. Yeah.
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And, uh, and this is recorded as well. Um, okay. Uh, so yeah, let's...
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Uh, and, and I, I like how Tina suggests, suggests to Nadine, and I'll drop a link in for the aging life care,
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uh, aging life care managers can sometimes be helpful in navigating that journey of aging in place with somebody with dementia, and I'll drop that in as well. Um, oh yeah, and, uh, I agree.
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David suggests the Little Sisters of the Poor. Uh, amazing residents there in, in DC near Catholic University. Um, all right. All right, so keep on going, y'all.
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And, uh, and check in with me and we'll, we'll, we'll address more of... Okay. So I, I think, uh... Well, first I just wanna comment that finding reasonably priced care is, is hard.
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And another thing, uh, Barbara and I would like to do is, uh, she's developed a checklist of questions to ask when you go to, uh, facilities and trying to sort out where would be the, the best, uh, place for a loved one.
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But building community for those solo, uh, caregivers is so important. And if you have no family to do it, there are caregiver support groups out there.
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Uh, you can look to your faith community and see if there are resources, uh, there. Uh, neighbors, uh, friends, some- sometimes, you know, you have to build your, your own, uh, network.
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But I think the most important thing is you must take care of yourself, too.
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And whether it's, uh, you can't leave to go for a walk, you can certainly do a short meditation, spend time in front of the window, be able to sit and just read a book for a while, and those things can help.
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And connecting with communities like this where you know you are not the only one, uh, going through this. And Barbara's gonna continue now with, uh, our final section on interventions.
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And, and let me jump in because, uh, another question came in that I think y- might be great for you all to address.
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It's, uh- They say, "A psychiatrist advised me to always tell the truth to dementia patients, like answering her questions about the death of our parents. My sister keeps asking me about them.
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Should I tell her that they are okay and alive, or, or tell her the truth that they passed away? Her doctor said to tell the truth." A- any thoughts on that? Uh, I think that's a, a...
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I've, I've heard this question before. Yeah, that, that's a very im- very important, uh, question, and I think it, it will depend on the recipient.
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If the recipient of that is mourning every time again that it is new news, and I did have a caregiver whose mom asked about a sister and dad, and they were both deceased, and every time he said, "Well, they're, uh, they're dead," uh, she just cried and cried again.
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Mm-hmm. So I think that is a time you can use some of these interventions of distraction, and that can be a very appropriate, uh, approach. And I, I think there is, uh,
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something called, you know, professional, uh, you know, fibbing or, you know, just not, uh, der- not answering the question directly, but providing some kind of distraction.
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Barbara, do you have any other comments on that? Yes. That, that happened with every person that was, uh, in my care. But one notable one was with my father-in-law, whose wife died while he had
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dementia, and he went to the funeral. He visited with family. We traveled to Pennsylvania. He was very much part of the whole thing.
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But we got home, and he asked where his wife was, and we said, "Well, Daddy, you remember we went to her funeral." And he got livid and screaming at us, why did we keep this from him?
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And so by telling him that she died again, he may not have been in today's state. He might have been living, as very common with dementia, in an altered timeframe.
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He might have been living 20 years prior.
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So I think to, to actually tell them today what had happened yesterday or 45 years ago in some cases, like my mom kept looking for her mother who was gone for more than 40 years,
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w- we have to look at where that person might be and the truth of where they are in that moment to make that decision. But it is a hard call, and we sometimes make the mistake. And if we make the mistake one day,
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uh, the, the next day we may try what Ruth suggested is a positive distraction, 'cause often that question won't go away. It will return. It will return again and again.
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And it is a difficult question, because time has a different meaning, and we don't always know where that person is in time. So let's- I...
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Yeah, it, and it's called therapeutic fibbing and, uh, [laughs] is what it, it's called. And, uh, and there's a lot of support out there for therapeutic fibbing in this particular, uh, scenario in, in the chat.
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All right. Yeah. Okay, let's move on to some interventions. And, um, interventions are, are really important because they are things that we can actually do to change a really negative experience like, "Where's my wife?"
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Um, a- and, and we have a framework that we look at, the, the dementia mind, our connection with the person, and the environment.
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So what we've learned through design caregiving and experience is that transformation doesn't come from just one place or one thing. It comes from the integration of these three things.
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Or I like to put it in columns, structure it, that there's some very important pillars of empowerment to, which is a foundation of being normal. So we have...
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And, and actually these pillars are actually tools for us to use. And, and, uh, positive distractions is really wonderful and can be as creative as you can possibly be in the moment, which is sometimes really hard.
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But knowing the person is equally important, and we talked about that earlier. And the design of the environment is important to un- in creating that idea of what's familiar.
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Um, often when, and this is especially important when we, um, find we're moving to a new care facility or a care facility from the home.
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Um, and it's important to remember we're not sending them off to college in a new dorm, and the famili- the being familiar and having old friends, like their old, um, um, recliner or their favorite old broken teapot or whatever it is, needs to be part of their environment, and not everything new.
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It needs to have some f- fam- familiar elements. And communication, as we talked about before, is so important.
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The words that we use, the body language we use, the tone that we use all are p- Part of, and this is a tool that we use to create that normalcy and belonging.
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And then the engagements that we have need to be as normal as possible. So knowing the person, that pers- and you are the best person that knows them, th- who they are, what they did. Th- even though, uh,
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they may not act the same as they did before, they are still that person. Um, and that identity doesn't disappear. But the, uh, uh, the dementia self, our dementia self
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is very concerned about their identity. They may be questioning what their identity is.
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So this is a time that we want to make sure that their life story is part of their care, especially when we transition that care into a care facility.
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Uh, w- we feel so strongly about it, we wrote a workbook that, This Is Me, a book to document all the aspects of being who, who we are.
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What, what instrument did we play, or did we like to garden, or did we like to go fishing? And, uh, is our grandkids still really important?
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Uh, these kinds of things are part of who we are, what we did in our working life, so, um, making sure that we know that person. And the environment shapes the behavior.
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It can help reduce confusion, and it can support independence.
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This was an example of a dementia village that takes, um, landmarks from the community, a community, this one's in Cedar Rapids, Iowa, but it takes a clock tower and different aspects.
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So everything isn't in an activity room. It has a destination. Communication is a whole new language that we need to learn.
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We, they are no longer able to communicate in our language. We can't understand them. They can't understand us.
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And so communicated, communication that preserves their personhood, their identity is, is critical. And validating over correcting, even when they're wrong, um, is so important.
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Uh, I h- I had m- my mother insist that I was driving her in the wrong direction, um, to the doctor's office or to the grocery store. I'm not sure where it was now.
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And she got so upset that I wouldn't turn right or left, the, and that I was wrong, that she was threatening to get out of the car in the middle of the street. And th- th- the validating her in her
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way and what she wanted meant that I had to stop and, uh, think of where she was at and how she felt so strongly about the direction I was going.
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And the positive distraction I came up with was calling my brother on the phone and saying, "Uh, Jerry, um, Mom wants to talk to you about going to the doctor."
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And so that distraction put her on the phone, where I was able to then go to the right direction.
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But we have to get, uh, uh, we, when they insist we're doing something wrong, we have to find a way to validate them and still keep our own sanity and safety.
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So oftentimes the emotion of the situation overcomes the logic, and, uh, we have to resort to some very creative, often creative, um, positive distractions.
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M- meaningful activities, uh, is also important. I've seen facilities that in the dining room they say, "Okay, it's activity hour and we're gonna take out and we're gonna do finger painting or coloring."
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That is not meaningful to a person who may have had a high-powered executive position and has never colored in his life. Um, so we need to find activities that engage this particular person.
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Um, for my late husband, who loved photography, I pulled out a big box of old photographs he never did sort. He just loved it and got engaged with that activity.
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Day after day, he would sort, and he would stop and look at photographs, but it was meaningful to him. There's not one size fits all here.
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We have to connect the meaning and the engagement with the person, um, for the engagement.
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Positive distractions, I think, is still, uh, it's still one of my favorite and number one go-tos when, when coming up with an incident, and it's simply redirecting attention.
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And the reason it works is in dementia, the brain has sh- the sh- the short-term memory is the weakest and, and often we forget those immediate issues.
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We have, we forget what we were upset about or what we were angry about, and the positive distraction can actually heal. It's a really, really powerful tool, and it is, it is a go-to that you can think of right away.
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Uh, the dog, um, looking out the window, the weather. All of these can be distractions that can move away from, from the event that was taking place. Um, it's also a de-escalation tool. It...
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R- remember when Ruth showed that escalation slide of, of how this, this sense rises to sometimes very disturbing outcomes, and that's when you need to act even faster and come up with a, a distraction.
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And if one doesn't work, the, uh, another one may. I, I know with my father-in-law, the, the one that worked best was, "Dad, I think it's time for ice cream." He forgot all else and was on the path for ice cream.
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So, um, find your, your lure and help move that person away from the exasperating moment that's hard, really hard for both of you. So the, the interventions work,
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uh, uh, the, um, emotional redirection works because they are emotional, and that part of the brain is still relatively intact.
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So we can reach people through music, through food, through nature, the squirrel, uh, stealing the bird's food, the touch, the hand, uh, the, the pat on the shoulder, uh, reminiscing, showing things in the photo album or even, uh, something around the house that's sitting on the table.
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All of these things that have emotional attachment to make great positive distractions and can help move us away. And I think if we, when we're thinking of positive distractions, think emotional.
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What is there an attachment to? What kind of music? If I put on the Beach Boys, is that gonna spur, um, our spouse to move on to something else?
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Or, or the ice cream, or the, the photograph of a, of the grandson or their wedding picture. Th- anything with emotional attra- attraction is, like, a number one go-to for interventions.
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And, and this, we want to use it when we have problems, uh, those triggers, the agitation, the anxiety, the resistance to the bath, um, when these things start to get out of control, and these interventions can disrupt that behavior and move to calm.
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And, um, we always need to be on the lookout, and that, again, goes back to how well we know the person and w- w- what are they attracted to.
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So you can see these, um, these columns are all foundations for creating normalcy, and these foundations are used in dementia villages, they're used in memory care facilities, they're used in our home, and this is what creates that sense of value to their life, a life worth living, and it's all a connected system.
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We can't just take one and make it work. We need to think of them all together. So why is this important? Well,
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when we're challenged in our caregiving role, which we will always be challenged, and we will make mistakes, but we can reduce this. We can have less agitation. They can be more independent.
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We can be less stressed ourselves, and w- we can have some control because we can alter things in our own environment that will impact the experience. So and, and
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it is not just that we're de-escalating the event. We are improving our own response to stress. We will be less stressed when the people we love are less stressed.
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And, and ultimately, the, the care- caregiving is such a hard task that we need opportunities to be less stressed.
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So th- th- things that we can do even at the bedside, um, in this area is, is important, especially with the sensory environment.
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Uh, we often think that when a person becomes bedridden, that there's not much we can do, and it is, it is hard, and many of the interventions we might have had earlier still work.
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But we can still pick up the phone and call their brother or, or their daughter. We can still impact what they see in natural life. We can still provide a headset with their favorite playlist on it.
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We can still bring meaningful objects into view. We can still talk about the squirrels out the window. And then touch and the textures and the blankets is a whole other area that we can provide that connection with.
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So what this might mean for you, no matter what your role is as a caregiver,
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you, or even if you're not involved in direct care, you can have an immense impact on us that, that
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those of us that do have dementia by how we shape the environment, what we help a person see, your reaction to an e- uh, an event. Um, you, by this and the way you communicate.
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All shape and help shape that experience. So what can you do today? Um,
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maybe in, in your caregiving role, if there's one thing that you do that's disempowering, try to change it. Identify one thing
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that you might be doing that, um, disempowers your loved one with dementia. Create one meaningful destination.
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W- perhaps it's the kitchen, a simple one for dinner, and talk about what we're having for dinner. Talk about where it came from. Talk about the tomatoes you got at the farmer's market.
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Talk about how the peaches grow on a tree like the one you had at home. Talk about mundane things that, th- that may not have a, a whole lot of meaning for you, but this might be that one sensory trigger that helps
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m- make us feel more empowered. And also change one word in your langu- language. Um, ig- maybe it's asking a question. Change how you might ask a question,
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and change your tone of voice with it. Not that you're exasperated and you need to know, but find some small change you can make, just one change at a time.
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And as you do this, you'll find there's a transformation, and there's a transformation on how to live with dementia.
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So key takeaways for our presentation today is remembering to move from managing the situation, especially the custodial kind of care that we must provide, to how can we empower
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ourselves to deal with this journey of dementia. Also remember that behavior that comes about is a communication that we're trying to express.
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And remember that the environment itself, the chairs we sit at, on, what we see in our view shapes the outcomes, and small changes can create meaningful impact.
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So we're at our closing reflection, and I invite you to ask questions of, of both of us here. Um, but think again, what kind of life are we creating
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for ourselves and for all of us in living with dementia? Are we merely supporting safety or are we supporting living to our fullest? And what would we want for ourselves?
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I love it. All right. Um, let's see. James asked, "Can you give, uh, an example of disempowering, a disempowering routine?" Okay. I think that there's a lot of them.
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Probably our, our biggest one is w- how we speak and our body language.
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We may be really, and I know this personally from myself, and when Ruth was talking about the, the gentleman that didn't want to take his bath and the escalating, I was thinking of my late husband who couldn't,
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who just wouldn't... Time for a shower, he just stood there and cried, and said, "I don't know what to do." And, um, I was, we were late for something, and I was not patient, and I,
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I made the situation much worse by rushing him and being perturbed that I had to help him get through the shower. That was very disempowering. We wound up that we could not go to wherever we were going at that moment.
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That was dispow- disempowering for myself and for him. Um, so, uh, also when early or mid phase of dementia when he lost several credit cards within one week,
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I, I was bound to have him understand the significance of this, and I gave my lecture that was not very nice. That was disapow- disempowering. I know he forgot it by the next day.
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I have never forgotten it, and he's been gone more than 10 years. So when you disempower us with dementia, you disempower yourself. It's a self, um...
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Yeah, so [laughs] Ruth, I'm sure you have something you can add here. Well, I'm going to let Steve finish with, uh, if he has anything else. And- Um, well, let's see.
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Well, uh, uh, one thing that I was gonna say about, uh, most of the, the thought leaders that I have on here, the one common theme is you can't argue with somebody with dementia.
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I- is, is that there's, the, y- you're never gonna win. Y- you know, it's, uh, that's, that's one thing, is that it's reframing, as you guys had said.
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Um, and, and Pamela Mills has a great comment back, back on talking about somebody who'd passed away.
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She says, when the person is asking for a person who's deceased, it's because they may be looking for- For a person who helps them feel safe and loved. And
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finding an alternative to that, uh, perhaps it's a, a pet or a stuffed animal or something like that. I mean, I'm, I don't... I'm just sort of spitballing here.
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Um, and, and somebody, it might have been me for the person that was talking about affordability of aging in place and caring for somebody, um, the suggestion of adult daycare came up and, uh, a- and Nadine says, "My sister does not wanna leave the house for adult daycare.
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We only leave the house for doctor's appointments." And man, I'm just... Y- you know, uh, being a caregiver is, it can be a very s- stressful life. Um, let's see. Um, the...
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Someone was asking, do you know of any com- communities that, aside from the dementia village that we talked about, that support this type of approach, uh, to, to care?
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Uh, [laughs] the, the answer is, uh, we do, and there are, uh, there are a few locally. Um, and I don't know whether, uh, you know, could we... can we name, name a name? I tell you what- No...
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I think a more appropriate thing would be w- I'm gonna... Uh, are you all okay if I share the, uh, your email with the f- the folks on this call? Is that okay, and they could drop you an email? Sure. I, I- Sure...
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not that I don't want somebody to get a shout-out, I just sort of feel like it, it can open up a, a can of worms sometimes when we, um, uh, in, uh, share, share that.
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Um, so, uh, okay. Okay, I think I got through most of the comments, uh, but we were on the topic of disempowering. Yeah, I think, uh, so we're back to that, uh, topic.
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We, uh, disempower by our, our voices. We disempower by not letting someone make a choice, and it doesn't have to be an open-ended question. It can be this or this. It can be a, a two thing.
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So when we make decisions for people, we are, uh, disempowering them. Uh, uh, yep. Yeah. Um, okay, let's see. Uh,
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whoops. You said you'd share questions, Jas. Oh, oh, okay. Uh, oh, yeah, um, Mary said, [laughs] earlier, Barbara, I think you said that you had a document with questions to ask when looking for a community.
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Um, is, is that on the website at, um, at Taming the Chaos of Dementia? Good. Thank you, Steve. That's a great question. Um, I wish it was.
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This is a result that came out of a new book that I am in the process of getting published right now. Okay.
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I don't even have a date for its release, but it is one that I have written in, um, conjunction with, um, some colleagues I have in Europe and Asia, and we've been on a mission to understand what kind of facilities are out there.
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This might answer a little bit of your question as to what are these facilities.
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And, um, we have interviewed a number of, of memory care facilities specifically, and to try to find, help you all find the right kind of care facility for your,
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for, for living this dementia journey, and it's not easy.
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There's, there's differentiations between assisted living and independent living and memory care, and we know clearly what they are, or kind of clearly. But when we get down to just memory care, it's very fuzzy as to...
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It's not as clear, and we rely often on marketing materials that the care facility may put out, and yet they may not answer your personal questions about, what's good for my mom?
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And, um, so this is something that we found is a real true problem for caregiving today, is finding a care facility. And even since dementia is such a long-term disease or can be a long-term disease,
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we often start out at home when we first get the diagnosis, but end up in a care facility later on. So all of these environments take part of our decision-making.
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What's good at day or year one versus what's good at day, year 18 is a very different decision.
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And so what we were looking at is putting together a, a, a, a checklist of what to look for for these various phases on the dementia journey, and it is not on the website yet. It is not actually published.
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Um, so but it is, in fact, exist. It's, [laughs] uh, just a matter of time. As soon as we can get it out there, we want to put it out there. But, uh- Excellent.
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And I dropped the, the link to the website, uh, so people can take a peek at that.
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And, and, you know, feel free to, uh, Ruth and Barbara, I dropped their emails in there, so if you'd like to continue the conversation or have anything that we didn't cover here that you're, you're challenged with. Well,
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lots of good, uh, comments about this as a topic, and the, the ideas and concepts that you presented. I, I really appreciate, um, uh,
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the, the caring and thought that you've put together y- on this very important topic. And, uh- Thank, thank you very much for having us. Yeah. Thank you. And- Caregiving is a hard journey. Yes. Yes.
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And, and Louise has a, uh... Oh, here, I'm gonna, I'm gonna drop the email addresses again.
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And, and while I do that, I, I see a nice suggestion from Louise who says, when you're looking at these various, uh, settings, visiting at different times of day, uh, is, is a gr- uh, a great suggestion. Um,
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all right. Um, okay. Well, thank you, uh, Barbara and Ruth. This has been amazing. And, uh, I will get this up as soon as I possibly can. And we will see you all at the next discussion.
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Thank you. Thank you. You bet.