Setting People Up for Success in Dementialand (and Elsewhere)

My husband and I were out to eat. We were at an upscale joint where margaritas cost $12 and you’re expected to not wear jeans. The child at the next table, who looked to be two or three years old, was not having a great time.

His parents were repeatedly telling him to eat his pasta, which didn’t seem to appeal to him in the least. They told him to sit still about 800 times. At one point I heard his mom say, “You are embarrassing me here.” And then his dad pulled out the dreaded, “Do you wanna go to time out corner when we get home?”

I’m going to defend the kid here. They brought a small child to a fancy restaurant and expected him to behave flawlessly. Is that really realistic? Should he have been put in that situation and subjected to scolding when he couldn’t behave? Is sitting still for an hour at a restaurant something a little kid is even capable of?

He wasn’t set up for success.

We don’t have kids, but we do have dogs. And one of our dogs doesn’t do well with kids. Gus-Gus is a homely 12-year-old mutt that we intercepted many years when a family member planned to take him to shelter. On so many levels, he’s a perfectly behaved four-legged buddy. However, he doesn’t like kids.

It’s likely a kid wasn’t so nice to him at some point in his past. I mean, he’s never eaten a child. And he’s never even tried to bite one. It’s more of a low rumble of discontentment. But if you visit our home with your kids, he’ll be in the basement. That’s how we set him up for success. If I let him interact with your kids and he’s a jerk, it’s really not his fault—it’s mine. Sometimes setting someone up for success means removing them from a setting that has not served them well in the past.

Before you think I’m going to compare people with dementia to small children and/or dogs and send me mean emails, let me clarify. I’m actually comparing all of us to small children and dogs, whether we have dementia or not. We are all like the kid at the restaurant and my kid-despising dog in that we do better when we are put in situations that are set up to help us be the best versions of ourselves.

And as adults, we take some much responsibility for setting up ourselves for success.

I go through times when I struggle to sleep. Although I don’t blame myself for my sleep issues, I do know there are certainly steps I can take to set myself up for a decent night of sleep. I sleep better if I avoid both caffeine and alcohol. I fall asleep faster if I don’t watch TV right before bed. It isn’t rocket science, but sometimes I fail to set myself up for success.

When trying to reach goals, forget willpower. It’s about setting yourself up for success. If you want to lose ten pounds, you set yourself up for success by preparing healthy meals in advance and joining a gym in a convenient location to your home and workplace. You don’t set yourself up for success by frequently eating at Mexican restaurants and trying to resist the margaritas and tortilla chips.

If you are in the earlier stages of dementia, you can (and should) take some responsibility for setting yourself up for success. If you always get disoriented at a particular restaurant because it’s loud and chaotic, request that you go to a more serene restaurant next time. If going to the movies exacerbates your confusion or anxiety, ask if you and your family can instead watch the show on DVD at home when it’s released. If you know that you’re tired and navigating SuperWalmart on a particular day is going to be too much, tell your family that you’d like to wait until another day. Or let them go without you.

You aren’t being a selfish diva. Keep in mind that when you set yourself up for success, other people win as well. We are all more pleasant to interact with when we are calm, rested, and in situations that we enjoy.

As people progress to later stages of dementia, some responsibility for setting up someone with dementia for success falls to caregivers. We set people with dementia up for success when we accept their limits and plan accordingly. Maybe Grandma can go to the grocery store with us, but the grocery store followed by Home Depot and lunch is just gonna be too much.

As dementia progresses, we may have to limit the duration of friendly visits. Social interaction may become more tiring. We must focus on quality of time rather than quantity. Setting someone up for success may mean cutting a visit short before a person becomes overwhelmed, tired, withdrawn, or irritable. It may also mean avoiding large group visits and asking friends and family to visit one or two at a time.

Years ago, I went to a presentation where a man with Alzheimer’s shared his experiences with the disease. I was fascinated with what he said but even more fascinated with how articulately he said it. Afterward, I had the privilege of going out to dinner with him. I was impressed with his efforts to set himself up for success when he had speaking engagements.

He said he never scheduled more than two a month, and he made sure to not schedule anything the day before or the day after. He told us that he always asked for 20 minutes to sit in a quiet room alone and collect his thoughts before he presented, and he mentioned that it was important he ate in a way that maintained his energy on those days he would be speaking. And he gave himself permission to cut his presentation short on days he just wasn’t feeling it. Although he spoke to our group for an hour, he said he cut his last speaking engagement short after just twenty minutes.

It was a good reminder that people with dementia can do amazing things when they set themselves up for success–and when we support them in doing that.

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