Enter the Gray Area: Communicating with someone living with dementia


“We bring Rachael in for a different perspective,” the nursing school’s professor told her class. “As I said before: do what she says in practice, but remember to write the opposite of what she says when you’re taking your boards.”

The class nodded, but I was shocked. “Wait, nursing schools still teach reorientation? I thought they stopped teaching that years ago!”

“Unfortunately not,” the teacher shook her head. “The textbooks and lesson plans all include information on correcting people living with dementia.”

Years ago, newcomers to the world of dementia caregiving were taught to reorient someone living with a dementia disease. Reorientation is the idea that you correct and argue with the individual in the hopes to “fix” what they believe to be true. For example, if a person with dementia said to you, “I saw my mother yesterday!” you would reply, “No, you didn’t, your mother has been dead for twenty years.”

Reorientation is cruel, unnecessary, useless, and ultimately painful for everyone involved. The person living with dementia will forget what you told them and ask again. You, in turn, will be forced to restate your case.

But what’s the alternative?

After getting my Master’s in Gerontology, I began my dementia care journey at an assisted living and dementia care community in Burlington, North Carolina. I learned, at some point, about using “redirection” and “distraction” when communicating with people living with dementia. These ideas mean that, when a person with dementia presents an untrue fact or belief, you redirect the conversation or change it entirely. For example, if the person were to ask, “When can I go home?” you could say something like, “I don’t know. Let’s go fold these towels.”

I quickly found that these techniques didn’t cut it, either. I once had a resident say to me, “Why does no one around here ever answer my actual question?” This struck me. I thought, yes, why do we feel like we can’t actually answer your question?

We’re taught, too, never “to lie” to someone living with dementia. Then what, I ask, are we supposed to do? Evade every question? Make someone cry by reminding them that their parents died decades ago? Force someone to do the math on their age and the current year?

No. I began to work on what I now teach: the idea that we can embrace the reality of the person living with dementia.

When we embrace the reality of someone living with dementia, we throw out the word “lying.” Instead, we enter the truth of their reality. As I teach my workshop attendees, readers and podcast listeners, if it’s true for them, it’s true for us, as well.

Let’s break this down in an example. Let’s suppose that your mother is 85, has dementia, and lives in your home with you. In her reality, however, she believes that she is 50 years old, works outside the home, and lives in her own house. Which reality is true?

If we embrace her reality effectively, we live with her in her truth. When she asks, “When can I go home?” you say, “Let’s go later.” When she asks you where her parents are you say, “Where do you think they are?” Whatever she tells you is the correct answer. “Yes, that makes sense, I think they’re probably at work,” you agree.

When we reorient someone living with dementia, we correct them: we tell them that what they believe is wrong. When we redirect or distract them, we throw them off balance by avoiding their questions. When we get scared of the word “lying,” we cautiously avoid letting them live their truth.

Dementia care is a gray area and caregiving is an art form, much like a complicated dance for which we can’t quite learn all the steps.

Here’s the good news: we don’t need to know all the steps ahead of time. If we find a way to embrace their reality, we can thrive in that gray area.

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5 steps to get you into the world of someone living with dementia

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I had someone tell me recently that they’d used my Embracing Their Reality techniques when talking to their mother with dementia. “I told her that we were going to see her parents, and she looked confused. She was talking about her parents the week before, so I just started the conversation about seeing them! Embracing her reality didn’t work,” he saidHere’s the problem: he didn’t embrace her reality. All he did was assume that, because she’d talked about her parents the week before, she’d be in the same reality the next week.

Use these 5 “L” steps to embrace someone’s reality effectively:

1. Listen

Don’t assume that you know where your loved one’s reality is that day. You have to listen before you make a big statement that you think reflects their reality. Listen to their context clues: for example, if she’s talking about her parents as if they are still alive, that’s what she believes that day. We can’t hang onto where she was the week or even day before. It just may not be accurate anymore.

2. Legitimize

Legitimize whatever they say to you. If they tell you that their neighbors stole their garden gnome, agree that their gnome seems to be missing, and you’re going to “get to the bottom of it” by talking to the neighbors. You don’t have to 100% jump to conclusions with them, but you do need to listen and legitimize whatever they say.

3. Lean

Lean into what they’re saying so that you can embrace their reality effectively. For example, if today she’s speaking about going to her mom’s house, she probably thinks her mom is alive. Lean into that with a small statement or question, something like, “What were you thinking about doing at your mom’s house today?” This gives her the feeling that you’re listening and agreeing, but it also gives you a bit of leeway: if she was just speaking generally about how she used to go over there, you don’t look totally crazy by talking about someone she knows has died. If she’s talking about her parents and asking you a question like, “Where are they right now?” You can say, “Where do you think they are?”

4. Leap

You’ll know from step 3, Lean, exactly where her reality is. Now, Leap into that reality with her, wherever it is! Talk about what she’s talking about. Don’t try to bring her back to our world. If she’s talking about going to work, talk about that work with her. Ask what projects she’s working on there currently, how her boss has been, and if her coworkers are fun to be around.

5. Learn

Learn from your successes and mistakes when embracing the reality of someone living with dementia. Recognize that while their reality may evolve and change, you’re going to be just fine when you take a moment to figure out where their reality is that day.

Learn more about what I do here.

“Therapeutic lying” is a ridiculous phrase

I work very, very hard to dispel myths about dementia. I work particularly hard to dispel myths regarding communication with individuals living with dementia. One of these myths is the idea of “therapeutic lying.”

Depending on who they learned from, care partners were taught to “never lie” to someone living with dementia, or they were taught to “therapeutically lie.” I’ll tell you right now: neither of these tactics are good options. And I’ll tell you why in a little bit.

“Therapeutic lying” is a phrase many care partners were taught at some point in their caregiving journey. Essentially, it means that you should go along with a person’s reality, but lie to them only if it’s therapeutic. What does that mean? (I certainly don’t know.)

The other option is even worse: you’re taught to “never lie,” which essentially means that you have to tell the individual the truth of our reality. For example, if your mother is asking where her parents are, then you’d tell her that they’ve passed away. DO NOT DO THIS. Ever. Under any circumstances. 

What I teach is something called Embracing Someone’s Reality. Embracing someone’s reality means that you take the word “lying” and throw it away. Instead, enter into their reality. If it’s true for them, it’s true for you. It’s not about “lying” or doing it “therapeutically” — it’s about living in the truth of someone else’s reality.

Dementia caregiving is not black-and-white. It’s such a gray area, and invoking the word “lie,” in either context, is really confusing. Make it a point to change your vocabulary when it comes to dementia care education! Words matter.

Learn more by signing up for my online class, “Everything You Need to Know About Dementia”

What would YOU want, if you had dementia?

I received a great question from a reader just the other day on my blog: 

I was told that I have early onset dementia about 5 years ago. My Dad and 4 of his siblings have died or have Alzheimer’s. I try to learn as much as I can about dementia care. I was just wondering if I should try to teach the people who will be helping me about dementia care or just let nature take its course? My wife isn’t open to thinking about this care yet.

I responded: Absolutely, teach those who will be helping you. Make a list of things you want people to know, like little habits and likes and dislikes you have. For example, I always sleep holding a pillow. A spouse will know something like this about you, but not everyone. It would be great if your wife would start learning now, rather than wait. Hard choices only get harder when we procrastinate on talking about them. If you’re open to more care (home care agency, adult day, assisted living) let your family know this. Families have a hard time making decisions when they think their loved one doesn’t want any extra help (and it sounds like you’re open to it, which is great.)

I wrote “16 Things I Would Want If I Got Dementia” probably five years ago at this point. Despite the fact that I wrote an entire book, am working on two more, and publish blogs posts weekly, my “16 Things” list is STILL the most popular piece I’ve ever written! I think I figured out why, too: it really speaks to people.

Probably the best thing that you can do is to start a conversation. Write down items that you want people to know about you, and talk to your loved ones about what they want you to know.

So, what would you want people to know if you got a diagnosis of dementia?

STAY TUNED: New stuff coming on Dementia By Day!

New website = new offers

I’m really excited because… 

  • I’m moving away from one-time trainings and spending more time on what I really enjoy doing: consulting projects.
  • I now offer a calendar on my site where you can book a phone call with me. This means zero back-and-forth emails about when we’re both available.
  • Step One of my new consulting package is my EVALUATE & ESCALATE offer. It’s normally $1,500, but you can book it for only $975 through the end of May. This offer includes: 
    • A detailed evaluation of your current dementia care program with proposed solutions you can implement, including interior design concepts to make your building more dementia-friendly 
    • 3 staff webinars 
    • 1-month access to my online “Everything You Need to Know About Dementia” course for anyone who wishes to take it (maybe your residents’ or clients’ family members!) 
    • 25 signed copies of my book

www.rachaelwonderlin.com

The 10 most important things about dementia caregiving

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  1. Communicating with people living with dementia can be challenging. Understand that their world may be different from our world, and that’s okay. We want to EMBRACE THEIR REALITY rather than trying to convince them of things that are true in our reality. Just because their reality is a different shape, it doesn’t make it wrong.  
  2. Don’t get hung up on the word, “lying”: realize that if you are telling them the facts of their reality, you are doing the best thing for both of you.
  3. Here are 3 questions you want to use when talking to people with dementia:
    1. “Where do you think they are?” when someone asks you about loved one
    2. “Can you help me?” when getting them to do something with you
    3. “What do you think about this?” when introducing a baby doll or animal
  4. Get to know them on a personal level, and this will help you live in their reality. Ask, “What did you used to like to do?” instead of, “What do you like to do?”
  5. Offer them 2-3 choices instead of asking open-ended questions like, “What do you want to eat for breakfast?” or, “What did you do today?”
  6. TIMELINE CONFUSION is the concept that time isn’t linear in dementia. If the individual cannot identify their loved ones, it isn’t because they don’t know them or love them, it’s because these people don’t fit on their timeline.
  7. Never try to “convince” someone living with dementia of something. Don’t use “logic” to try to help them understand.
  8. No weddings, no funerals, no cemeteries
  9. Not everything is Alzheimer disease! The phrase “Altttttheimer’s and dementia” sounds ridiculous.
  10. Recognize that their timeline and reality may change, and that we can learn to be flexible and change with it. Dementia caregiving is an art form that takes practice and patience to learn.

Want more details? Surprise! Take my $49.99 class for $9.99 with the code IREADITALL because you read this whole article! Sign up before Wednesday’s article comes out to use the code. Shh, it’s a secret. Act soon, ‘cause this code expires 4/24/19.

HOW TO talk to strangers about your loved one’s condition


“I wish I could take her out to lunch more often,” he sighed. “I’m just really worried that she’s going to say or do something inappropriate. One time, for example, we were in the checkout line at the grocery store and she started loudly talking about the woman in front of us. It was so embarrassing. I didn’t know how to tell that woman that my wife has dementia.”

While potentially stressful, the good news is that it isn’t actually that difficult to talk to a stranger about your loved one’s condition. Save yourself some anxiety and an awkward interaction or two with these tips:

  • Recognize that most people are smarter and kinder than you may be giving them credit for. I used to take a group of my residents out for lunch on a regular basis. I usually told the servers ahead of time that my residents were impaired. One day, upon leaving a restaurant, we found that our bill had already been paid by a kind stranger. 
  • Most people don’t know exactly what dementia is, but they can understand it may impair someone’s ability to make appropriate choices.
  • Let someone know ahead of time (such as a server at a restaurant) that your loved one may need extra assistance or that you’ll be ordering for them.
  • Plan ahead when choosing outings. Keep them short and simple.
  • Avoid overwhelming and/or crowded places, such as the mall’s food court at lunchtime. 
  • Choose the best time of day to go out: most people living with dementia get tired or agitated in the afternoon and evenings at some point in their disease process. Try keeping outings to earlier in the day.
  • Finally, check out these cards or make some of your own! You can actually download and print cards from that link. “Pardon My Companion” cards are essentially little business cards you can slip to a stranger who may be wondering why your loved one is saying or doing the things they are saying or doing. Your loved one may not actually have an Alzheimer’s diagnosis, so you may find that it makes more sense to create your own. I recommend Vistaprint’s website for business cards.

Improv comedy and dementia care workshop now online

Our workshop is officially ONLINE which means you can take it from wherever (and whenever) you want! This is a cool opportunity for you to see how improvisational comedy works with dementia caregiving, especially if you can’t make it to Pittsburgh, PA for our workshops. We travel, so we’re happy to come to you, but if you’re just one person it’s more cost-effective to take the class online!

If you see this before the end of the day, use code MARCH28SALE for $25 off the normal price of the class.

HERE’S THE LINK!

Why the loss of control motivates most “behaviors”

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Cecilia was having a hard time. Suddenly, she couldn’t do all the things she used to do. She had once owned her own business, handled all her finances, made her own daily plans, raised children, and more. Now, with dementia, she couldn’t manage those tasks. Now, her family was doing everything for her, and it made her angry. “Stop messing with my checkbook!” she yelled at her son. “When did you last take the trash out?” she asked her husband with a tone of frustration. Often, she stayed in bed, saying she didn’t “feel well.” This was very new for her family—they’d never seen her like this!

It was no wonder that Cecilia seemed annoyed, detached, and anxious! She was once a woman who handled everything in her life, but now, with dementia, she had lost a lot of control. A feeling of control is important to most everyone: we want to know that we have the ability to make choices and change things in our lives if we want to.

When we feel like we have no control, we start to panic. It makes a lot of sense that Cecilia was so agitated and irritable with her family: it stemmed from fear. 

Many of the “behaviors” we see in dementia (hoarding, irritability, accusations, etc.) come from a place of fear, and that fear is usually based on a loss of control. 

How do we help someone who feels this way? The best thing to do is to give them back some of that control. Obviously, you can’t let your confused loved one fill out the checkbook, but you can let them help you make a budget. Ask your loved one “for help” when completing a task, even if you don’t need (or want) help with that task.

This is another reason why chores are such a great thing to try with people living with dementia: they are task-based, often simple, and part of daily life. Even in late stages, most people are able to fold a hand towel or match up socks with some assistance. 

Ask “for help” (not if they WANT to help, but rather if they CAN help you) and see the change in your loved one’s behavior. No one wants to feel like they lack control over the most basic parts of their existence.

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