Looking Back to Move Forward: Why Life Stories Should Guide Dementia Care

By Jay Newton-Small

Editor’s Note: November is Alzheimer’s Disease Awareness Month. To better understand this complex disease and the toll it takes on families, we asked Jay Newton-Small, CEO of MemoryWell, to share her caregiving perspective. Jay is cofounder of MemoryWell, a national network of more than 350 journalists who tell the life stories of those living with Alzheimer’s and dementia in order to improve their care. 

Growing up, my father had been the sweetest man. He was a happy-go-lucky Australian -surfer–turned-diplomat who was the best father any child could want. I realize every case is different, but from my perspective, Alzheimer’s disease transformed my dad into a violent and abusive demon, whom I hardly recognized.

I’m not alone in that: about 20 percent of those living with Alzheimer’s and related dementias get aggressive.

When my father first started getting agitated, I didn’t know how to handle it. His caregivers would try and calm him down, but their entreaties, “Please, Mr. Small, don’t do that. Mr. Small, why don’t you come over here and watch some TV?” “Mr. Small, how about some cake, there’s some lovely cake over here,” all fell on deaf ears.

They would then call me. I would have more success: not only was I familiar to him, even if he didn’t quite know that I was his daughter anymore, but I also knew his story. I quickly figured out that “Dad” no longer worked. So, I used his childhood nickname, “Gray.” “Hey, Gray, look at those kangaroos!” He loved kangaroos and he’d go off where I pointed in search of them, forgetting whatever it was that had triggered his aggression.

But I was a correspondent for TIME Magazine and I couldn’t be there all the time. I traveled one-to-two weeks a month. Things got worse. One day, he punched a nurse, nearly broke her jaw, and escaped his secured facility. Police and fire found him hours later, wandering down a main thoroughfare, pantless, of course. This incident was the final straw and he got kicked out of that community.

The new community I found for him 50 miles north of D.C. asked me to fill out a 20-page questionnaire about his life. This made no sense to me. First, I had terrible handwriting. Second, I was a professional writer and the questions were too hard for me to answer. I challenge anyone to successfully summarize their parents 50+ year marriage in four lines.  

So I handed in the form blank. “Look,” I told them. “I’m a TIME Magazine correspondent and I think it would be easier for me, and for you, if I just wrote down his story.”

They looked at me like I’d grown a second head. But they acquiesced.

His story transformed his care. I printed it out and handed it to all of his caregivers. They remembered it. They told each other about it. Two of his caregivers were Ethiopian and they’d had no idea that my father had lived in Ethiopia for four years early on in his career with the United Nations. They became his champions, spending hours showing him their own family photos of Addis Ababa and Lalibela.

And now when he grew agitated, they could more easily distract him. “Hey, Gray, you want some doro wat?” they’d ask, knowing he loved the spicy Ethiopian dish. The community brought in famed dementia specialist Teepa Snow to work with my dad. Teepa discovered that he hated being touched by strangers, which was a problem because he was incontinent and needed help bathing. But she also found that his manners drilled into him by his mother were an asset.

If someone he didn’t know tried to change him, he would resist, violently. But if they started to talk to him about his life on intimate terms, he would get embarrassed that he didn’t remember them and out of politeness become compliant. So, if you talked to him about getting him dressed to see his mother Clarice and father Cecil, or preparing to go golfing with his brothers Geoff and Trevor, he’d cooperate because he felt you knew  him, or became chagrined that you must know him and he didn’t remember you.

My father was an explorer. As a diplomat, he reveled in other cultures. And that’s who he was until the end. Someone easily distracted by an exotic dish, or an alien landscape. If you knew that about him, if you knew him, he was easy to handle, a joy, even. If you didn’t know who he was, he became a monster.

For him, his story—and the context it brought—made all the difference. 

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