dementia-by-day:

I’ve debated writing a post like this for some time: a post that really hits the nail on the head with how I feel about the term “lying” in dementia care. So, here goes. I am fully aware that not all professionals in dementia care agree with me, and I know that this is going to annoy some of them. But, that’s okay. This needs to be talked about.

When I first started working in dementia care, I learned about Teepa Snow’s philosophy of “Redirection and Distraction,” which was part of her Positive Approach to Care technique. I also learned about Naomi’s Feil’s “Validation” technique, and began implementing what I’d learned with my residents.

One day, very early in my career, a resident of mine was asking about her husband. “Where is my husband? He was supposed to pick me up an hour ago!” she cried. Using what I’d learned, I sat down with her and began to engage. “Sounds like you miss your husband,” I offered. She looked me dead in the eye, squinted, and bit her lip. “Yeah. And I want to know where he is. Why does no one actually say anything around here?” she demanded. This shocked me. But, I did what I’d learned: I validated her feelings and asked her how she felt. I realized, though, that I hadn’t actually answered her question. I’d just redirected her. 

Another time, I spent two hours trying to get a very irritated resident off of a bus. The bus had taken Eileen, one of my favorite residents, to the doctor’s office. This had not been a particularly enjoyable ride, and by the time she got back to our assisted living community, she was not in a good mood. We tried everything, but could not get this woman off the bus. I tried to redirect her. I tried to distract her. I tried to chat with her about where she’d been and even tried to explain that the bus was not going to be able to take her to her house, which is where she wanted it to go. Finally, I asked the bus driver to drive us around for a little bit. He ended up taking us to the back of the building about ten minutes later, and I told her that we “had to get off here, so that we could transfer to another bus later to eventually take her home.” Finally, hearing this, Eileen got off the bus. We went inside. My staff was thrilled that she was safely inside the building, but I was completely exhausted. I was also confused: had I done this whole thing the wrong way? 

I was so confused by this—this feeling that I’d “lied” to get her to leave the bus with me—that I actually emailed Teepa Snow, who I’d met at a conference. As busy as a woman as she is, Teepa got back to me pretty quickly. “It sounds like you did the right thing. You did what you needed to do,” she replied.

That was great to hear, but it left me thinking…if that, then what? If it was okay for me to do that, but it’s technically a lie, how is that in-line with the dementia care theories I’d learned? 

This was when I started developing my Embracing Their Reality theory. Teaching families and care staff to “never lie!” to people with dementia is too confusing. (See an article by Feil here.) Dementia care is a gray area, and telling people to “always do this, but not this, but sometimes this” just doesn’t work. Caregivers need real, TANGIBLE stuff they can use and apply.

If we were really sticking to the don’t-lie-thing, we would never introduce baby dolls and stuffed animals, right? I mean, that would be lying. That would be telling them that these were real, when we see them as not-real.

If you know me, you know that I’m all about the TANGIBLE. I want you to be able to use my stuff, apply it, and feel good about it. I want you to succeed in your positive dementia care. 

When you embrace someone’s reality, you understand that their reality has shifted, and you must shift with it. Here’s my favorite (and very true) example:

I had a resident whose son had died a few years earlier. This was obviously devastating. In good news, she’d forgotten he died. (Hey, this is a good thing that she forgot!) One day, she came to my office. “Hey hon,” she said. “Do you know where my son is? He hasn’t called in a while.” I paused and considered this. “Where do you think he could be?” I asked. “Well…I guess he must be busy with work,” she replied. “That makes sense, he’s probably at work,” I nodded. “Can I call him?” she asked me. “Sure,” I said, and picked up my work phone. I dialed my own cell phone number and let it go to voicemail. As soon as it did, I handed her the phone. “Here, you can leave him a message,” I smiled. She left her son a voicemail on my phone. “Thanks, hon, I feel a lot better,” she nodded. It never came up again.

So here’s what I teach:

• Throw out the word “lying.” Getting hung up on this word will only stress you out.
  
• We are living in THEIR reality. Just because it’s not true for US, doesn’t mean it’s not true for them. Who are we to say what is true?
  
• When someone asks you a direct question, find out what they believe the answer is, and then do that.
  
• You don’t need to get creative and “make something up out of the blue,” but you do need to be able to “yes, and” your loved one with dementia. Agree and then add on.

I am not, in ANY way, dissing what the very smart people in dementia care who came before me have said. In fact, I’m respecting it because I’m building on it. I wouldn’t be doing what I’m doing today without the dementia care experts before me. But I think there’s more to dementia care than just validation/redirection/distraction/substitution/etc. I think we can all learn to embrace someone else’s reality.