Alzheimer’s, the Brain, and the Soul

Early this year, World Magazine published a brief update on the life of Elisabeth Elliot, a Christian woman widely respected for her sacrifices to advance global missions. She turns 88 next Sunday.

Elisabeth is well known for being married to Jim Elliot, a missionary martyred in eastern Ecuador in January of 1956. After his death, she remained in Ecuador as a missionary, serving the same people who killed her husband. When she returned to the States, she launched an impressive writing and speaking ministry, and remarried in 1969. Her second husband died of cancer just four years later, and in 1977 she married her present husband, Lars Gren.

Reporter Tiffany Owens travelled to Massachusetts to meet Elisabeth and Lars, and shared the encounter in World Magazine:

Lars Gren led me down a dim hallway to a simple room lit magnificently by floor-to-ceiling windows that looked out over the Atlantic Ocean. A slim, elderly woman dressed in black pants and a floral shirt — her hair swirled in a bun — sat near the fireplace. “We have company today,” Gren said, bending down to touch her hand.

His wife, Elisabeth Elliot, nodded but did not reply.

Since the onset of dementia about a decade ago, the best-selling and widely known Christian author communicates mostly through slight hand gestures and facial expressions. For everything else, there’s Lars Gren, her husband of 36 years. He and two caregivers attend to her daily needs. . . .

Elliot stopped giving speeches in 2004 as her health worsened. . . .

Gren says Elliot has handled dementia just as she did the deaths of her husbands. “She accepted those things, [knowing] they were no surprise to God,” Gren said. “It was something she would rather not have experienced, but she received it.”

Hearing these words, Elliot looked up and nodded, her eyes clear and strong. Then she spoke for the first time during the two-hour interview, nodding vigorously: “Yes.”

Elisabeth Elliot’s life reminds us ministry is best done in the shadow of suffering, not in its absence. The same is true of personal maturity. “Many deaths must go into reaching our maturity in Christ, many letting goes,” she wrote years ago, and dementia is now for her a string of daily letting goes’s.

“Ministry is best done in the shadow of suffering, not in its absence.”

But what intrigues me here is that vigorous nod — that “Yes” — from the depth of her being. For all the deterioration of her brain over the last decade, it has not snuffed out her faith.

Why not?

Why, in the moment in which she can testify of God’s goodness, do her eyes clear and her strength renews and her heart speaks? In other words, how does robust faith survive despite the onslaught of deterioration in the brain?

I asked Dr. Benjamin Mast, a licensed clinical psychologist, board-certified geropsychologist, and Associate Professor and Vice Chair in the Department of Psychological & Brain Sciences at the University of Louisville. He serves as an elder at Sojourn Community Church, and he recently put his experience and expertise together in his new book, Second Forgetting: Remembering the Power of the Gospel in Alzheimer’s Disease, published by Zondervan.

What follows is a lightly edited transcript of portions of our conversation.

Dr. Mast, thank you for your time. What do we know about this mysterious disease that destroys the brain?

Alzheimer’s disease is a progressive, neurological condition. That means it’s a brain disease that starts in a particularly small region of the brain and then spreads throughout. The progressive nature means that it continues to get worse and, as the science stands, there is currently nothing that can modify this course or stop the disease process.

Alzheimer’s disease is characterized by very tiny microscopic changes in the brain, so small that they can’t be seen on a standard brain scan. It starts in a particular region of the brain, the temporal lobes, which are responsible for aspects of our memory. From there it spreads to the parietal and frontal lobes. As it does, it continues to take more and more of the person’s abilities, their memories, and their ability to navigate their environment. In some sense, it even seems to rob aspects of our personhood, of who we are.

It is a devastating disease for many people, and there is great fear surrounding it.

The other difficulty is the growing prevalence of this disease in our society. It is estimated that about 5 million people in the United States have Alzheimer’s now. By 2030, that number is expected to at least triple. So it is a growing problem, and a problem we really need to tackle.

Those are staggering statistics. For those 5 million with the disease now, is there any sense of what it’s like to live with Alzheimer’s? Is there a common feeling among those affected?

One of the things that we say about Alzheimer’s disease and the people who live with it is, if you have met one person with Alzheimer’s disease, you have really just met one person. And what we mean is that people have diverse experiences. You will meet one person and they seem very content. Another person feels incredibly tortured.

Some of the common things that I hear people talk about are a sense of loneliness, a lot of fear, and then confusion and disorientation.

The way that memory is initially affected in Alzheimer’s disease is in recent and new information. For anybody to remember what we are talking about right now they have to convert our conversation into a long-term memory. It has to be stored. And people with Alzheimer’s disease have great difficulty with that. So, in a sense, when they are walking around and navigating their daily routine, much of what they experience in the moment is quickly forgotten. So imagine that you can’t remember what happened earlier in the day, or what happened yesterday, or what people keep trying to talk to you about. And the sense of confusion must be very great.

When you minister to someone with Alzheimer’s disease, help draw them back to remembering the Lord.

In Alzheimer’s disease there is a level of unknowability. That is, we can know certain things about what they experience and we can talk with people, but we can’t fully understand what it is like to live with Alzheimer’s disease. We don’t fully know until we experience it ourselves. And, unfortunately, once we experience it, our ability to communicate that experience is greatly diminished. So it leaves us with the difficult situation of trying to love people well by understanding them. But there are limits on what we will be able to access in terms of their internal experience.

You are both a geropsychologist and an elder in your local church, and in your book you bring an invaluable pastoral dimension to this topic. My big question for you is this: How does Alzheimer’s affect the spiritual life of faithful Christians? How does it challenge or change, or even erode, personal faith in Christ?

This question gets asked quite a bit. That is, if a person has been a faithful Christian all his life and now has Alzheimer’s disease, what will it mean for him in terms of his faith walk and remembering the Lord? Again, the experiences of people are quite different.

Some people continue to cling to faith and engage in the practices of their faith. One man I met, a retired pastor with Alzheimer’s disease, continued to do hospital visits with his son. His son would take him to the hospital and this man with Alzheimer’s disease would pray over other people who were sick and offer words of encouragement. He was clearly still walking the life of faith he had walked for a long time.

One woman I was testing, to determine whether she had Alzheimer’s disease, asked to stop the testing. I was giving her various memory tests, and she quit. She said to me, “My memory is just fine for what I need to do.” And I asked her a little bit more about her routine. She lived in a nursing home, and she would get up each day and walk to the chapel, sit down and pray, and read through Scripture, then she would walk back to her room. In a sense what she was telling me was: “I remember enough to know what I want to do each day.” She remembered the Lord, even if sometimes walking back to her room she got confused.

“What spiritual disciplines are regular enough for me that they will ‘stick’ even when I am deep into forgetting?”

But other people have different experiences. It seems that the walk of faith becomes much more difficult for them, and they seem less inclined towards it. And it raises an issue of remembering and faith, and how those two things go together.

When we talk about faith in the Lord, are we talking about remembering him? Are we talking about remembering what he has done in our lives personally, and what he has done generally through his Son Jesus? Is it partly remembering he is present with us, and remembering what he has promised for us in the future? And so, even for people with Alzheimers’s, whose faith appears weaker or less salient, are there ways that we can minister to them and draw them back to remembering the Lord, despite their severe problems with forgetting?

Given that every experience is different, are there any common investments Christians can make now, in the spiritual disciplines, Bible memorization, church attendance, hymn singing, etc, that will prepare us to face Alzheimer’s with tools and habits that will help us spiritually thrive?

This became very personal for me as I was writing my book. I spent time talking with families and people who were affected. And I became so impressed with the way that people would cling to their faith despite this very difficult situation. And you would see these people engaging in acts of faith and religious practices, even if all the other things around them seemed to be slipping away.

And I thought, you know, if I were to develop Alzheimer’s disease, I would want to look like that, and I would want to have these practices in my life to hold on to. But then I thought: I will not have those disciplines in Alzheimer’s disease if I don’t have them now. And so it encouraged me to be thinking about what rhythms of faith I want to have in my life right now. What spiritual disciplines are regular enough for me that they will “stick” even when I am deep into forgetting?

The things that seem to “stick” tend to draw both on what I would call spiritual disciplines, but also what we would call, in the research world of Alzheimer’s disease, procedural and emotional memories.

I said earlier that people have a significant problem with forgetting; that is, forgetting new information. But there are aspects of our memory that are so well worn, so habitual, that they are what we call a procedural memory. So it is not uncommon to see somebody, even in a locked memory care unit of a nursing home, seem as if they are completely unaware of what is going on. But when they hear an old hymn that they know and love, they light up and sing every word of it. It is a beautiful picture of how they have this hymn, this truth, embedded deep within them, and they can access it when they are prompted.

To prepare for memory loss, read the Bible, pray, and sing every day — and tell loved ones about your disciplines.

So what I think about in terms of these disciplines, one point has to do with what rhythms we have in our life in terms of spiritual disciplines — reading Scripture, prayer, songs, hymns. But also, who do we have in our lives? It’s important to let the significant people in our lives know these practices are daily patterns in our lives, so if I were to slip into Alzheimer’s disease, not only would those habits be formed, but I would have people in my life so aware of what my habits are that they could redirect me back to them if necessary.

That’s very wise counsel. You mentioned fear earlier. For Christians who are frightened at the prospect of Alzheimer’s, who have a family history of it, what gospel comfort would you offer to them that’s bigger than this disease?

This isn’t necessarily New Testament gospel, but one of my favorite passages when I think about fear and hope comes from the story of the Israelites as they are preparing to enter the Promised Land (Deuteronomy 7). God has obviously brought them through quite a bit to get there. If I could paraphrase, he says, “You might look at these nations and say, ‘They are much larger than us. We can never possibly defeat them.’” The Israelites are absolutely overwhelmed.

I think many people, as they face the prospect of Alzheimer’s disease, can feel like those Israelites felt: this is absolutely overwhelming.

God’s call to the Israelites is for them to remember all that he has done for them in the past. He calls them to remember how he defeated Pharaoh. He tells them to remember how great and awesome he is, and how he has delivered them from so much. He calls us to remember what he has done for us, and that he will continue to be with us in the present. He will provide for our needs. He will be with us. And he can certainly address new challenges that come along in life.

We draw comfort knowing that Christ is interceding on our behalf, and we can never be separated from his love (Romans 8:31–39).

But we must also remember his promises for our future. God will not forget. No matter what life might look like with Alzheimer’s disease, we know that this is not the end for us. God was with us in the past, he is with us in the present, and he will be with us in the future. And our future with him will be much better than any suffering we may experience in Alzheimer’s disease.

“No matter what life might look like with Alzheimer’s disease, we know that this is not the end for us.”

The key in all this, I think, is that, when you are somebody who may be at somewhat higher risk because you have a family member with Alzheimer’s disease, you may have a slightly higher risk, but you still have a much better chance of not getting Alzheimer’s disease at all. And even if you do, there is no guarantee you will experience it the same way your loved one did.

There are many people who continue to be content and live happy, meaningful lives despite the cognitive problems. The disease looks quite different for different people. In any case, there is grace for a life with Alzheimer’s disease. It doesn’t have to be all suffering. Many people with Alzheimer’s disease don’t want to be described as suffering, because they feel fine. And although they have significant problems, they have found a way to be content.

Listen

Those were a few transcribed excerpts from my 36-minute conversation with Dr. Mast about his book, Second Forgetting: Remembering the Power of the Gospel in Alzheimer’s Disease.

In the interview I also asked him about how significant personality changes should be considered in terms of the perseverance of faith and personal assurance. I asked whether Alzheimer’s typically makes people more kind who were previously easily angered, or people more easily angered who were previously kind. And I ask one question caregivers routinely ask him.

To hear our entire conversation, subscribe to the Authors on the Line podcast in iTunes, download the recording (MP3), or stream the audio here:

Alzheimer’s Disease, the Brain, and the Soul: An Interview with Dr. Benjamin Mast (36 Minutes)