Maria Shriver

Creating New Habits to Relieve the Stress of Alzheimer’s

By Cat del Valle Castellanos

Each September, World Alzheimer’s Month is your chance to join the global fight against Alzheimer’s disease. There are more than 35 million people worldwide living with dementia and more than 5 million Americans are living with Alzheimer’s disease – the most common form of dementia.

We're not supposed to say it, but being an Alzheimer's caregiver can exhaust the patience of even the most saintly.

Alzheimer caregivers are supposed to be calm, perpetually understanding and endlessly empathetic but Alzheimer’s is invasive and exhausting.

Helping Alzheimer’s patients to develop new habits, however, can dramatically improve the quality of their lives and ours.

My quirky Uncle Dick had been a CEO in the steel industry. He left the corporate world to work for the Department of Transportation in DC during the Reagan Administration.

The accomplished uncle, however, is not the one I remember. It was years after he retired that I came to know him, though I was still a child.

At that young age, Alzheimer’s was not in my vocabulary. With our childlike dispositions, Uncle Dick and I shared a love for Legos, ice cream and feeding seagulls at the Sanitary Fishmarket.

Most of the time I just considered him a similarly curious playmate but, eventually, I grew annoyed with his repetitive questions.

“I’m in 1st grade!” I wanted to respond. “The dog’s name is Nike!”

Frustrated, I did what all six-year-old's do in the face of conflict. I told my mom. She explained that sometimes my uncle was forgetful.

Then, with a stern mother-knows-best look, she told me to reply as though I had never heard his questions before.

I sighed and rolled my eyes, though I had been warned they might soon become stuck in that position. I took our puppy for a walk around the yard. Uncle Dick followed.

“Have you heard of Alexander’s ragtime band?”

“Uh...no, I haven’t.”

And so I heard the story of Alexander’s ragtime band. Again.

A few minutes later, Uncle Dick turned to me and said, “Have I ever told you…”

Without mom around to strike me with her motherly glare, I shouted, “Yes!”

“Oh, okay,” he said, content. “Hey, what's the dog’s name?”

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Eventually, young family members grow up and grow patient. That doesn't make Alzheimer's any less irritating. How can we, the caregivers, deal with our frustrations?

According to recent studies, it's possible to relieve some of the stress of Alzheimer's by adjusting the habits of both the caregiver and patient.

In fact, it is not only possible but productive to teach our patients new habits.

Repetitive speech, like my uncle's, is a hallmark of Alzheimer's and can be one of its most frustrating expressions.

Caregivers, however, can ask specific questions about childhood stories, which short-term memory loss sufferers are more likely to recall.

By triggering different memories, frustration is relieved and the patient is empowered.

In The Power of Habit, Charles Duhigg cites a study that provides an amazing example of new habit development in Alzheimer's patients.

The book presents a woman named Beverly who is caring for her ailing husband, Eugene. Doctors told Beverly that Eugene needed more exercise, so she took her husband on a daily walk around the neighborhood.

One day, a visitor went with Eugene on his walk. Curious, the visitor asked, "Where do you live?” Eugene responded that he didn’t know.

Then he walked up the sidewalk, opened the door to his home and went to sit in his regular spot.

Since Beverly had taken Eugene along the same route every day, he was able to subconsciously develop new knowledge from the habit, even though his short-term memory had all but disappeared.

Maybe you're like Beverly, worried that your loved one will leave the house unaided. Instead of tattooing names and numbers on your husband's wrist, try and create a habit of having your husband pick up his wallet with his information every morning.

Others worry that their loved one will forget to take their medication, or worse, take it more than once. In Understanding the Dementia Experience, Jennifer Ghent-Fuller tells us the story of a wife who began using a calendar to keep track of her husband's medication.

The couple agreed that only the wife could cross off a date on the calendar. She would watch her husband take the medication, mark the calendar, then every time her husband became concerned that he hadn't taken his pills, he could see the calendar.

It was a simple idea it and took weeks to develop the habit. In the end, however, it alleviated stress since the husband would no longer become frantic, anxious that he had not taken his pills.

In the early stages of his disease, Uncle Dick would always want to drive the family to our favorite local restaurant, the Sanitary Fishmarket.

Ever the gentleman, he would drive to the front door and let us out before he parked the car.

Of course, when we were ready to leave, the scavenger hunt ensued.

Eventually, we had to face a problem that many encounter: How do you get a loved one to stop driving without triggering a global conflagration?

The key to adjusting habits for those with Alzheimer's is to ease into them.

One woman, who was used to her husband driving, carefully began to ask if she could drive once or twice a week.

Over a period of time, she increased her request until she was driving most of the time. Soon, her husband naturally went to the passenger side door of the vehicle.

What could have been a battle over the loss of independence was eased by adjusting habits.

No Alzheimer's case is simple. None are the same. On occasion, by validating the "truth" of an Alzheimer's patient's world, you can reduce your anxiety and, more importantly, your patient’s.

Until there is a way to win the battle against Alzheimer’s we have no choice but to coexist with this disease, making adjustments when we can and tempering them with love and patience.

As time went on, my Uncle Dick would ask when other relatives were coming to visit; relatives that had already passed away.

When we told him the truth, he became increasingly stressed. In his memories, clear and vivid, it was as if we were telling him the world was flat.

In time, we changed our habits. We came to accept that it was kinder to agree with his reality than force him to embrace ours.

Follow Cat's journey...read her past blogs here.

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Cat del Valle Castellanos is a writer from Washington, D.C.