#frontotemporal

Logic and dementia don’t mix. What does that mean? It really means that using logic to “explain yourself” to someone with dementia won’t work out well. So, saying to someone with dementia, “But you can’t eat lunch, because you already ate lunch” won’t compute. They don’t remember eating, they still feel hungry, and they think you’re making it up!

And then what happens? You fight. No one wins, and everyone is mad.

Don’t convince. Just EMBRACE THEIR REALITY.

“I want my pills,” Molly said. “Can you bring me my pills?” she asked a nearby staff member.

“I already brought them to you, you had your pills this morning,” the staff member replied kindly.

“No I didn’t, I want my pills now,” Molly shook her head.

“But I already gave them to you…” the staff member started.

“Hang on,” I offered, walking over. “I have a solution,” I said to the staff member.

“Hey, Molly, I’m going to bring you your pills in a little bit!” I smiled.

“Okay, thanks,” Molly said, and went back to eating her lunch.

Instead of arguing or attempting to use logic with this resident, I embraced her reality. Trying to “convince” her that she already took her medicine wasn’t going to work: she didn’t remember doing it, and so it didn’t happen.

I decided to get into her world and tell her the truth of her reality: that she’d be getting her pills soon. Of course, I never brought them to her, but hearing a positive confirmation calmed her down immediately.

First, let me say that if your friend with dementia is experiencing hallucinations (seeing or hearing something that isn’t there) they may have another medical issue going on, like a Urinary Tract Infection. However, if their diagnosis is Dementia with Lewy Bodies, or if they have been hallucinating all along, this could be a normal part of their disease process.

Hallucinations are different from delusions. A delusion is a fixed, false idea. Everyone with dementia has delusions, such as telling you that they talked to their parents yesterday, even if their parents have been deceased for years. Hallucinations are when someone is hearing or seeing something that isn’t real. They will often talk to or point out the hallucination to others.

What do you do?

My advice is always the same, no matter the hallucination: see it, too.

The most common hallucinations are children or animals, and often these things aren’t scary. I’ve even had people tell me that their loved ones enjoy being visited by little kids, and talk about it fondly. 

It feels easy to agree with this hallucination. “Those kids seem really nice,” you may say. However, when the hallucination is scary, most people don’t want to “agree” with what their friend with dementia is seeing.

ESPECIALLY if it’s scary, you want to see it, too. The goal is to SOLVE the problem that the hallucination is presenting: fear. For example, if she is seeing a man outside her window that frightens her, tell her to come away from the window while you “call the police”. Don’t actually call the police, but pick up the phone and act like you’re making the call.

If he feels like snakes are biting his toes while he sleeps, wash his sheets. Make sure there isn’t a medical condition that causes his toes to tingle. Put socks on his feet. Tell him that you’ll purchase some “snake repellent”. 

Let’s face it: dementia care is hard. Honestly, it’s often harder for caregivers than it is for the people with dementia, especially in later stages of the disease process. 

No one “wants to lie” to a loved one with dementia, but that’s why I always tell families to take the word “lying” and throw it out the window. When you get caught up on the word “lying” it makes it harder to be the best possible caregiver. It makes it hard to live in dementia world.

Embracing someone’s reality and “living in their world” is a lot easier when we recognize that people with dementia aren’t doing or saying things to annoy us. They aren’t being difficult to make our lives more complicated: it’s just how the disease process is. The best way that you can live in someone else’s world is to let them lead and then you learn to follow.

For example, I had a resident once named Sophie. Sophie’s daughter was obsessed with the idea that her mother thought her father was still alive. “I keep telling her the truth!” she’d say to me. “Mom deserves to know the truth that he’s dead!”

I told Sophie’s daughter to try something new: ask Sophie where she thought her husband was. 

“When she says, ‘Where’s dad?’ ask her, ‘Where do you think he is?’ and then go with that answer,” I explained.

Sophie’s daughter had a hard time with this at first. “But what if she says he’s at work? What am I supposed to do, agree with her?” she grimaced.

Yes. Agree with your loved one with dementia. Allow them to guide you, even when it’s hard, and you need to learn to follow along.

It had been six months since I’d seen Dot, my favorite resident. Dot was what I like to call “pleasantly confused.” She was in her mid-90s, had Alzheimer’s, and just enjoyed everything.

One thing that I remember about Dot was that she missed her husband a lot. They had been married for decades, and his passing was probably the worst moment of her whole life. Dot would often say to me, “I miss my husband. He was such a good man.” We’d talk about their trips together: the time he was asked to go on a business trip to Italy, but he said he’d only go “if he could take his wife!” Dot went along, and the two of them had a wonderful time.

I don’t think more than a couple days passed without Dot mentioning how much she missed her husband. She’d always say it with a wistful little smile, like she was remembering the good times. Still, it made me sad.

Six months went by after I moved up to Pittsburgh, PA. When I went back to Greensboro, NC to visit my friends down there, I stopped by the place I used to work to visit Dot.

She recognized me immediately. Interestingly, Dot (and every other resident I’ve ever worked with) never knew my name. She knew me, though, all the same. I was the blonde lady who brought her the newspaper and took her on outings.

Dot had tears of happiness in her eyes as she introduced me to her fellow residents. “This is my old friend!” she told them.

We got to talking, and she told me about how she worked during the day, but stopped here for lunch. I knew immediately her “timeline” had changed since the last time I’d seen her.

“And my husband!” she said, suddenly. “He’s on a business trip right now, but he’s getting back tonight. Oh, I can’t wait to see him!” she smiled.

I was surprised to hear this news, but I smiled, too. He’s back, I thought.

“That’s great, Dot!” I said. “Do you think y’all will go out for dinner?”

We had a great conversation about her husband that afternoon—because he was back in her life. He was alive again.

“I moved my dad into the nicest place ever,” she exclaimed. “They have this beautiful lobby and all of these brand new chairs!”

I have heard family caregivers talk about this idea a lot. They think, “Ah, this place looks so fancy, it must be nice.” This could be true, and the dementia care community that you’re looking at could be great...but often, looks are deceiving. 

Just because a community looks nice for families doesn’t mean that it is dementia-friendly. Many communities that I’ve been to have been recently developed by architects outside of the industry. Despite the fact that architects have a great sense of design and style, they often lack any clues about what people with dementia really need.

When a place looks really nice and pristine, but lacks any real character, you can be sure that it is not actually dementia-friendly. 

I recently toured a community with a beautiful exterior and interior. They had nice furniture, a large bird menagerie, and a nice garden. But...that was it. 

They didn’t have a place for baby dolls, they didn’t have music playing, and they lacked any sort of organized activities. Why? Because it was designed for families to enjoy, not for residents with dementia.

The families are the decision-makers. They decide when and where to move a loved one, and so often they panic when they see things that are actually dementia-friendly. “Well, my mom wouldn’t want to play with a baby doll!” they’ll say, upon seeing a resident pleasantly interacting with what she believes is a real baby.

Some communities have unfortunately caught onto this, and will take away or hide anything that makes the place dementia-positive in the hopes of attracting more residents’ family members.

Do not fall prey to this.

So, things got hectic quickly. Your loved one started acting different. Maybe he or she started losing items around the house. Perhaps they began having mood-related issues. And...guess what else? You don’t have a plan for how to handle any of this. Good news: here’s a step-by-step “what do we do now” plan:

Start by getting a diagnosis. Locate a neurologist, geriatrician, or nearby hospital that specializes in brain function and dementia. People will often tell me that “their primary care doctor thinks it is...” but I don’t trust the PCP for the best info. Dementia is a broad diagnosis, and you deserve to know what type of dementia it is.

Even if the diagnosis isn’t Alzheimer’s disease, look up the Alzheimer’s Association in your area, and then give them a call. They’ll probably know about resources available to you in your specific location.

Find a support group. A great deal of senior living communities offer free support groups to the public. You’ll meet other caregivers and be able to share knowledge, stories, and general information.

Talk to your loved ones about dementia care communities. It’s a hard topic to broach, but talking about it sooner (rather than later) is the best approach. You need to know the ifs, whens, and hows of deciding to move someone to a care community.

Find out about respite care in your area. Is your loved one living at home with you? Are they in their own home? Find out if a local home care company can check on your loved one during the day or night.

Research elder care lawyers in your area. Know your options for getting the Power of Attorney put in your name. You may need it more than you think.

Decide what you’re going to be doing about that person’s driver’s license. It’s another tough call, but you do not want to wait until something terrible has happened before you make a plan.

Talk about the long-term. It’s hard, but you will want to know what type of care your loved one wants when they become unable to voice their opinions on the matter. Do they want a feeding tube when they have trouble eating? Do they want religious services as a part of their hospice experience?

Don’t wait to discuss hospice. Hospice is a wonderful program that is free to you to utilize. If you feel your loved one is declining rapidly, don’t put hospice off until the last minute. They can save you tons of stress and money.

...and that’s okay, because it’s really normal.

This is a hard thing for a lot of caregivers, including ones who work in senior living communities. 

Everywhere that I have worked, I’ve set up different interactive stations for my residents with dementia. These stations include places like a baby doll nursery or even an interactive kitchen. 

Anytime I’ve set one of these places up, some members of the staff complain. “But the residents take the baby dolls!” they’ll say. “They put them in their rooms and then we have to go get them.”

My response is always the same: “So what?”

The point of these interactive stations is for residents to do just that: take items that interest them, and move them around. Is it a little annoying when things go missing? Yes, of course it is. But, that’s the point: residents should be able to interact with their environment.

I have also had family caregivers complain of the same thing with their loved ones at home. “My dad takes all of the socks out of his drawer, and then he puts them in the kitchen,” one woman said to me. “How do I get him to stop doing that?”

While that is an annoying thing (having to go collect socks every day) it is not really that bad of a behavior. Her father probably thought he was being helpful. Dementia is a group of brain diseases—it changes the way that the person interacts with and understands the world. For one reason or another, moving socks from the drawer to the kitchen made sense to this man.

So, the conclusion is this: people with dementia will move your stuff. They’ll pick it up, enjoy it for a while, and then go stash it somewhere else. That’s normal.