The Little Question That Can Change Alzheimer's Care

One day, my dad, who had dementia, kept moving like one of those figurines in a German clock, over and over in the same formation. Only in this instance, he was literally moving a clock. Four, five, six times, he'd lift an old wall clock from its peg, open up its back, look thoughtful, and then go off to find a tool to fix it. And there it would sit until I eventually put the clock back up, trying to hide my growing annoyance. And soon enough he'd take it back down.

If you want to change the behavior of someone with Alzheimer's, ask yourself this little question: WHY?

Four of my family members, including my beloved dad, had forms of dementia. And I've spent several years interviewing doctors, therapists, family caregivers, and others for a book on the best practical dementia care. All these experiences seemed to boil down to that one word: WHY?

WHY is he doing that? What is it about the disease, about the person, and about the situation (including your own reaction) that's making this happen? With Alzheimer's, there are usually some pretty good reasons behind what seems unreasonable.

Why it helps:

Alzheimer's and other dementias can trigger countless puzzling behaviors: repetition, shadowing, wandering, skin picking, rummaging, hoarding, accusing, crying, talking to the mirror, wearing the same clothes every day, and dozens more. What they have in common is the ability to frustrate the families who cope with them.

Pausing to think about the WHY behind the behavior can extend patience and lift confidence -- and help you discover ways to prevent or change what's happening.

How it works:

In my dad's case, with the clock, I later realized there were several factors at play:

Why the clock? Because it would stop, and Dad (who had no idea what year it was, but checked his watch obsessively and could always tell you the right time) knew its time was wrong. A lifelong handyman, he still had a strong instinct to want to fix it. Because of the effects of the disease, however, his ability to follow through was lost; he could no longer complete a complicated series of steps: See the problem, identify a needed tool, go get it, remember where the tool was, etc. He just took the back off the clock and lost track.

Why the clock? Because it was in plain view on his route from bathroom to easy chair, each trip triggering the cascade of events all over again. (And he used the bathroom many, many times a day.)

Why the clock? Because I, stupidly, kept putting it back on the wall!

It was futile to get mad or tell him to stop messing with the clock (as I uselessly tried at first). He couldn't. Helping him locate the tool was also pointless, because he no longer had the wherewithal to actually use it. (And although he's always been handy with engines and gadgets, I'm pretty sure Dad never actually mastered clock repair.)

Understanding why he was doing what he did pointed to one easy solution: hiding the clock. Once I moved it out of his line of vision, the trigger was gone. He never asked, "Hey! Where's that broken clock I need to fix?" It was out of sight, out of mind.

Where WHY can lead you:

I'll be the first to admit that "Why" isn't a question that produces instant answers. But it does provide lots of insight that can get you there.

These two steps help:

Step 1: Get to know a little about the basics of the disease process -- how it erodes memory and other thinking skills, the ways it can alter personality, the hallmarks of how it typically manifests, stage by stage. (Here, for example, is a quick Alzheimer's stages guide I helped develop.) Also remember that we all act different when we're bored, or frightened, or upset, or hungry, or frustrated, or feeling insecure. Alzheimer's can magnify responses to these states.

Step 2: Play detective and gather clues. Is there something about the room or time of day or the people nearby that are influencing what's happening? Clues like those can point you toward possible things to change or do differently.

To collect those clues, try running through the other W's that are often recited with WHY. Remember WHO you're dealing with. Yes, the person may seem so different now, but many of his or her core preferences, motivations, and traits are still there. Use them to try to figure out the behavior or a diversion. Also ask, WHAT is really bothering you -- the behavior or how it makes you feel or affects your day? This reminds you that you can change your reaction or the environment more easily than you can change the person (who's incapable of stopping just because you ask). WHEN and WHERE help you notice triggers and patterns. Does a behavior happen every day? When the person is sick? When the sun goes down? Out in public? (Or maybe, when he comes out of the bathroom, down a hall with a stopped clock in plain view?!)

All this explains why -- that word again! -- in my book Surviving Alzheimer's, I emphasize what I call the "Why This, Try This" approach to problem-solving, walking through the possible whys to dozens of common behaviors in order to set the stage for tactics to try to prevent or alter them.

Gaining insight into why helps you take things less personally. It can make you feel a little less cross. It helps you to not blame the person with Alzheimer's for behaviors he can't fully control. And it gets you unstuck, so you can deal. With so many benefits to a simple little word, why not?