Is that “behavior” worth worrying about?

I often meet people who tell me about their loved one’s “behaviors” and ask how to “fix them.” My first question is this: Is that behavior worth worrying about?

Let’s take a few examples and decide which ones we should be worried about finding solutions for.

  1. They’ve begun to urinate in the house plants, thinking that they are outside
  2. They yell at the mailman, concerned that he is “keeping” some of their mail
  3. They think their spouse is still alive
  4. They accuse a relative of stealing money from them
  5. They have trouble taking a shower because they don’t like the water hitting them

Which of these five are most concerning to you?

There is no one-size-fits-all answer here. For example, maybe in your house, keeping your loved one living with dementia away from the mailman isn’t a big deal. Or, maybe it is a big deal: you’ve had a great relationship with your mail carrier for years, and this constant bickering is quickly causing rifts in that friendship.

Normally, I’d say that #3 is NOT a big deal: please, please, please Embrace Their Reality. Don’t argue and tell them their spouse is dead, or try to convince them otherwise. However, if your loved one living with dementia is constantly trying to take the car to go visit their spouse at work, you may have a problem. In this case, we need to ensure that the car is not available. We also need to keep them feeling safe and reassured that their spouse will be home soon.

Most of these have pretty easy solutions:

  1. Remove the house plants
  2. Time it so they are occupied when the mailman comes, or explain to the mailman the situation so he isn’t upset
  3. Embrace Their Reality(!)
  4. Let them know that, while you don’t believe it’s true, you will “look into it for them”
  5. Wrap a towel around their shoulders so the water his the towel first, or switch to a bath

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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Do people living with schizophrenia have an increased risk of getting dementia? How big of an impact does depression have on dementia, and vice-versa? What is trauma-informed care?

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To answer these questions and much more, I bring in my long-time friend and mental health expert, Caitlynn.

Caitlynn has a Master’s in Clinical Psychology and lives in Oregon. You can follow her on Instagram at instagram.com/therapylyfe

Never ask someone with dementia if they “remember your name”

If I can, I always opt to ditch my name tag in a dementia care environment. I let my friends with dementia decide what my name is: I’ve been Susan, Gwendolyn, and various peoples’ kids. I’ve been so many identities to my residents, too: a coworker, a boss, a student, a sibling, a friend from home, and more.

Don’t ask your friend living with dementia if they “remember your name” — especially if that person is your parent, spouse, or other family member. It’s quite likely to embarrass them if they can’t place you, and, frankly, it doesn’t really matter what your name is. What matters is how they feel about you.

Here’s my absolute favorite story about what I call, “Timeline Confusion”

Alicia danced down the hallway, both hands steadily on her walker. She moved her hips from side to side, singing a little song, and smiled at everyone she passed. Her son, Nick, was walking next to her.

Nick was probably one of the best caregivers I’d ever met. It wasn’t just that he visited his mother often, it was how he visited her. He was patient and kind—really, he just understood dementia care. He got it.

Alicia was what I like to call, “pleasantly confused.” She thought it was a different year than it was, liked to sing and dance, and generally enjoyed her life.

One day, I approached the pair as they walked quietly down the hall. Alicia smiled and nodded at everyone she passed, sometimes whispering a, “How do you do!”

“Hey, Alicia,” I said. “We’re having a piano player come in to sing and play music for us. Would you like to come listen?”

“Ah, yes!” she smiled back. “My husband is a great singer,” she said, motioning to her son.

Nick smiled and did not correct her. He put his hand gently on her shoulder and said to me, “We’ll be over there soon.”

I saw Nick again a few minutes later while his mom was occupied with some other residents. “Nick,” I said. “Does your mom usually think that you’re her husband?”

Nick said something that I’ll never forget.

“Sometimes I’m me, sometimes I’m my brother, sometimes I’m my dad, and sometimes I’m just a friend. But she always knows that she loves me,” he smiled.

Nick had nailed it. He understood that, because his mom thought it was 1960, she would have trouble placing him on a timeline.

He knew that his mom recognized him and he knew that she loved him. However, because of her dementia, she thought it was a different year. And, in that year, he would’ve been a teenager.

Using context clues (however mixed up the clues were) Alicia had determined that Nick was her husband: he was the right age, he sure sounded and looked like her husband, and she believed that her son was a young man.

This is the concept that I like to call timeline confusion. It’s not that your loved one doesn’t recognize you, it’s that they can’t place you on a timeline.

What matters is how they feel about you. Not your name or your exact identity.

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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

image

  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.

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Is that dementia-related “behavior” worth worrying about?

I often meet people who tell me about their loved one’s “behaviors” and ask how to “fix them.” My first question is this: Is that behavior worth worrying about?

Let’s take a few examples and decide which ones we should be worried about finding solutions for.

  1. They’ve begun to urinate in the house plants, thinking that they are outside
  2. They yell at the mailman, concerned that he is “keeping” some of their mail 
  3. They think their spouse is still alive
  4. They accuse a relative of stealing money from them
  5. They have trouble taking a shower because they don’t like the water hitting them

Which of these five are most concerning to you? 

There is no one-size-fits-all answer here. For example, maybe in your house, keeping your loved one living with dementia away from the mailman isn’t a big deal. Or, maybe it is a big deal: you’ve had a great relationship with your mail carrier for years, and this constant bickering is quickly causing rifts in that friendship. 

Normally, I’d say that #3 is NOT a big deal: please, please, please Embrace Their Reality. Don’t argue and tell them their spouse is dead, or try to convince them otherwise. However, if your loved one living with dementia is constantly trying to take the car to go visit their spouse at work, you may have a problem. In this case, we need to ensure that the car is not available. We also need to keep them feeling safe and reassured that their spouse will be home soon.

Most of these have pretty easy solutions:

  1. Remove the house plants
  2. Time it so they are occupied when the mailman comes, or explain to the mailman the situation so he isn’t upset
  3. Embrace Their Reality(!)
  4. Let them know that, while you don’t believe it’s true, you will “look into it for them”
  5. Wrap a towel around their shoulders so the water his the towel first, or switch to a bath

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.