Testimony is important for many Christians. So what happens when you can’t remember how you came to know Jesus as your Savior or recall the things God has done in your life? Psalm 77:11 says, “I will remember the deeds of the Lord; yes, I will remember your miracles of long ago.” What happens to our faith when we can’t remember?
Theologian ‘Tricia Williams asked evangelical believers with dementia that question for her new book, What Happens to Faith When Christians Get Dementia? Their answer was that memories fade, but faith does not.
Williams, a longtime editor for Scripture Union, began focusing on pastoral care for people with dementia after prompting from a colleague who wanted to help his wife. First, she developed Bible reading and prayer resources. Then Williams went on to complete her PhD at the University of Aberdeen in Scotland under John Swinton, a leading scholar on the theology of dementia.
Her work is “always with a pastoral purpose,” she said. With this new book, she wants to help Christians provide better care for believers with dementia and see how the insights of those believers can apply to everyone’s faith journeys. While her current book is aimed at scholars, she’s working on a second book based on the research for a general audience.
Williams spoke to CT about her findings and how to walk with people with dementia.
First, what are some of the symptoms of dementia? How do these symptoms raise worries for evangelical Christians?
Dementia is an umbrella term. Within that, there are a group of illnesses which often have similar symptoms, particularly initially. In my research, my participants had a mixture of Alzheimer’s and vascular dementia. There are other kinds as well.
The person who is living with someone who is developing dementia will notice concentration becoming more difficult and short-term memory loss. Then as dementia progresses, and that might take several years, they will notice memory becoming even more difficult, social habits being more difficult to monitor.
At a workshop I was doing with a church, there was lots of patient, pastoral, kind concern. Then, toward the end of the meeting, a lady who’d been silent, obviously could stay silent no longer, just shouted out, “That’s all fine, but actually I find this incredibly embarrassing because I am not sure how my father is going to behave when we go to church.”
Some of the key questions people have are: Who am I? If your relational capacity is gone, and you can’t think in a straight line anymore, is personhood still there? What is it that makes me human? Then, there’s the question for a believer: So, what happens to my faith? If I can’t remember anymore, if I can’t confess my sins, is my salvation still safe? Then some people might say: Can you come to faith when you have dementia?
You interviewed eight people in early-to-moderate stages of dementia. Can you describe them?
They could still talk to me. Some were just discovering what it meant to live with dementia. One or two others were really fragile, and it was a real struggle for them to try to communicate.
They were all people who at that point knew that they had dementia and could imagine what that might mean. They were all aware of the stereotypical images which society brings to dementia and were all feeling a sense of God’s call in talking with me.
Here’s a couple of them: Rosemary and Ron. These are pseudonyms to protect their privacy and their families.
Rosemary had been an English teacher. She was full of bubbly energy and desperately wanted to talk to me. Her conversation just rattled along. She said, “The main thing is that I want this thing to be to the glory of God.” She hardly seemed to a take breath when she talked to me until she said “Amen” at the end, and she did say “Amen” at the end.
Ron was someone who was much frailer. He went to Rhodesia (now Zimbabwe) and was “born again” at a Billy Graham crusade. He said: “I haven’t got a memory, but I have.” What he meant by that was: Even though lots of everyday things have gone, he will never forget the presence of God with him.
How did you conduct the interviews? Was it hard for people to remember what the question was?
Yes. It was. For some people, it was difficult from them to remember why this stranger was in their homes talking with them. People did forget where we were going. Sometimes people told me an awful lot that I didn’t really want to know because they went on all sorts of tangents. And that was fine. I’d just gently and respectfully bring it back.
Someone told me, “I can still drive at 70 miles per hour down the motorway.” In my head I’m thinking, “Hmm, but should you be?” But the person was telling me that, so I’d think, “Why did they want to tell me that?” They want to say, “I am in control. I don’t need special concern. I’m functioning just the same as anyone else, thank you very much.” So, when something is said off-script, I would still dig to hear why they said that.
I was constantly prompting and bringing back to center. In my head, my framework was: What has been your experience of faith, what is your experience of faith now, and what do you think it will be like in the future?
What did dementia mean for these people’s faith?
Some think once dementia comes, the faith journey is over, whereas actually my research disclosed that faith is alive and well. In fact, people said to me it’s stronger. Alice said to me, “I used to think I was quite clever.” (She was a doctor.) “Now I know I don’t know very much. But I feel [that] though there’s less of me, there’s more of God.”
I’ve also talked about growing in faith, and that might seem really strange. Yet it’s there. From the disorientation, from the confusion that dementia brings into our lives, they were finding a reorientation.
Alice said, “How do I serve God? He’s given me this gift, and I will do what I can with the loaves and fishes he’s given me.” She has this deep concern and deep understanding of some of the horrors of people who go into dementia without faith and is continuing to minster to them out of her own experience.
What lessons can we learn from people with dementia?
One area is memory. We tend to think of that as an autobiographical, linear memory. Memory is not just something that is about facts connected by neurons in the brain. It’s connected to the whole of our bodies. So, I write quite a lot about our embodied memory. A really classic example is Marcel Proust’s memory of a madeleine biscuit. He talks about how just the taste of the biscuit suddenly brings back the memory of his aunt.
That kind of memory is seen in people with dementia too. I can think of all sorts of examples: the way someone dresses. The way they speak to you. Their past histories are written in their bodies. Their manners, their politeness (or not). Their understanding of faith and songs and hymns. It’s all there, deeply within memory.
It sounds like you’re saying that we misunderstand memory, thinking it’s merely mental cognition?
We miss out, in fact. We are whole people. It’s not just that neurons stop working, and therefore the whole person is gone. No. The whole person is there and is valuable. They may be shut off from us, and it may take more patience and more care to communicate. But we can prompt and begin to find that this person, like me, is a Christian, loves God, and is perhaps learning more about God and has more trust in God than I do.
Naomi Feil, a social worker, developed the validation theory for communicating with people with advanced dementia. She just patiently, patiently works with a woman until (in one example) they were singing together, “Jesus loves me; this I know.” Deep, deep in us, there are truths.
My grandmother had dementia, and I remember people singing hymns with her to the end.
My research participants kept quoting references to Scripture and references to song. The words have become their language. Those things are deeply, deeply embedded. Sometimes you might just need to prompt someone to help them and to enter the moment. Just taking a bit of time, you find there is a whole wealth of spiritual experience and story there. They probably aren’t going to get up in front of you and give a coherent sermon, but the life of God is there and is a gift to us. Maybe we have things to learn if we would be patient enough to receive the gifts that this person brings to us.
How can Christians care for those with dementia?
Accompany people with dementia. Some highlighted this. One of the issues is that for people who were not married, going to church or participating in church activities was much more difficult. Rosemary—my ebullient, never-stop-talking lady—she was wanting to still go to church and finding that very difficult. She remembers going up for Communion, but then she panicked because she didn’t remember where she was sitting. She talked about her embarrassment that people were thinking, “That silly women doesn’t know where she’s come from.”
Practically, that’s quite an easy thing to do something about. If people in church are aware, somebody can decide I’m going to take on being your friend and guiding you through the service if you need it.
Also, for family members with people with dementia: Let other people share the burden with you. Maybe both the person living through dementia and their caregiver stop being seen at church and we can forget them. They may feel you won’t understand, and therefore they’re getting worn down by the care. But both the family member and the person with dementia need other people from the body of Christ, sharing that burden.