Reflect, Then Respond 

For simplicity, I’m using male pronouns throughout this blog whenever I refer in general to someone who has dementia. 

Here’s what Julie told one of my caregiver support groups the first time she attended:

“My husband, Alan, and I used to talk about everything. We could finish each other’s sentences. We never argued. But he’s changed so much, I hardly recognize him. Now it seems we do nothing but argue.” 

Relationship problems sometimes accompany early signs of dementia. The easy flow of conversation that has evolved in a longtime partnership begins to hit some snags. 

Your partner doesn’t seem to listen as he used to. You chalk it up to his being tired or working too hard. But it gets worse. You realize it’s more than inattention when he can’t remember his brother’s phone number and later drives a meandering route to get to the drugstore. Within months, he’s diagnosed with Alzheimer’s disease.

Then, with so many factors to consider regarding his safety and independence, it’s easy to overlook the importance of the manner in which you communicate.

Let’s return to Julie’s story. After telling the group that she and Alan do nothing but argue, she went on, “I carefully explain everything to him so he won’t be confused. But when I told him the placemats go on the table before the dishes, he blew up at me. 

“And what’s worse, it also happens out in public! At the supermarket, he puts all kinds of things we don’t need in the cart. I try to reason with him and tell him we already have that at home, but he gets furious and makes a big scene. He’s like a 2-year-old!”

Heads nodded as group members acknowledged they knew just what she was talking about, having lived through it themselves.

Bob offered, “When my wife gets angry for reasons I don’t understand, I try to step back and see what I’m doing wrong. It’s usually when I’ve carelessly criticized her or tried to correct her. She hates to be told she’s wrong. Once, she got so mad, she punched me in the chest. That hasn’t happened again. I’ve come to see that I can’t change her, but I can change what I do.”

At that, Julie spoke up again. “That helps me a lot. Poor Alan, I correct him all day long!” Even her efforts to unconfuse Alan were adding to his stress. 

Things don’t change in one afternoon. It takes many months to put into practice a new way of responding, especially in a relationship of many decades. It’s natural for Julie to expect Alan to act as he always has, and when he doesn’t, to react with critical disbelief. (“Why in the world are you doing that?”) That’s what makes caring for a family member a particular challenge: your expectations are firmly set.

The first thing you need is knowledge. The more you know, the easier it is to accept the fact that things have irrevocably changed. Your loved one is now less able to restrain his impulses or modify his own reactions. The part of his brain that once allowed him to inhibit his less acceptable urges is damaged. He may act on any idea that enters his head. 

In addition, as his world becomes more confusing, he lives with tremendous anxiety and increasingly relies on his caregiver, physically and emotionally. He’s constantly alert for clues from his environment and the people in it regarding his safety and his sense of self-worth. That’s why he reacts so negatively if you criticize him or argue with him. He feels threatened and helpless if you—especially you, his safe harbor—confront him.

His only relief from uneasiness comes when he feels loved, valued and secure. That happens when the people around him give only supportive feedback and don’t argue or find fault with him.

Yes, he gets a free pass on his impulses, while his family members must strictly govern their own. 

That’s a tall order in a situation where the unusual becomes usual, or as one caregiver whose father insisted on wearing his bathrobe to church said, “Who ever knew to expect these things!”

When you do lose your temper, and you will—seeing him put the dirty dishes away in the cabinet, for example—you may be horrified at what your anger unleashes. He may disintegrate into pure rage or abject fear. Or he may weep. In any case, his fragility will be laid bare. 

It’s very important to keep in mind that his rage is not a symptom of his dementia. 

It’s a justified reaction to being humiliated. Alan’s anger when Julie disapproved of what he had put in the market basket was righteous indignation.

The real symptoms of dementia in those two cases are:

• Inability to focus on and fully understand the task at hand (dealing with dirty dishes in one case and choosing only needed food in the other) 
•  Impulsive behavior based on a narrow concept (dishes go in cabinet, food in cart) of what’s to be done. 

Instead of reacting with anger or criticism, try to step back, as Bob said, and reflect that the outcome of this depends on responding in a way that supports this fragile person you love. At first, you may need to grit your teeth to do it. 

If you respond to his intention in cases like these, you’ll get it right. For example:

• “You put the dishes away. Thank you.”
• “You found lots of good things for our dinner. Thank you.”

You can reload the dishwasher later, then start a routine where he rinses the dishes and you put them in the dishwasher.

You can go ahead and buy the extra groceries if they’re things you can use. Or you can say, “I don’t have enough cash to get that today.” 

You’ll want to avoid having it happen again. It might be time to find someone to stay with him—a friend, relative or hired companion—while you do the shopping.

Supporting him means holding your tongue when he does something unexpected; it means helping him save face when he’s made a mistake. 

If you can create an environment in which he feels safe, valued and loved, you’re creating a better world for both of you.