Finding Grace in the Face of Dementia

Scott Rae: Welcome to the podcast, “Think Biblically: Conversations on Faith and Culture.” I'm your host, Scott Rae, dean of faculty and professor of Christian ethics, Talbot School of Theology, Biola University.

Sean McDowell: I'm your co-host, Sean McDowell, professor of apologetics at Talbot School of Theology, Biola University.

Scott Rae: We're here today with a very special guest, Dr. John Dunlop, he's an M.D., has been practicing gerontology; we'll ask him to define what that is in just a moment. Outside Chicago, and now is associate … he's practicing, in addition to teaching at Yale Medical School; has been for the last several years.

I came into contact with John some time ago when we were both involved in a bioethics institute, Center for Bioethics and Human Dignity. John, I heard you speak on a number of occasions at the center and other events. And so, he's written a new book that I admit is a really hard subject for a lot of us to talk about. And John, given his specialty in gerontology, he's super well qualified to write on this book. The book is entitled Finding Grace in the Face of Dementia.

So John, thank you you so much for coming on with us and agreeing to talk about what I think may be a really hard subject for a lot of people to think about.

John Dunlop: You know, I may be a little morbid, but I just love to talk about this because so many people just don't have a good understanding of what dementia's all about, especially as Christians. And it's just such a privilege to be able to look at the Scripture and look at this difficult topic and begin to make some sense of it.

Scott Rae: So tell us a little bit more about some of your experience as a physician with patients with dementia, and sort of what motivated you to actually write all this stuff down in the book that will be coming out soon?

John Dunlop: When I was practicing in Chicago, probably 70% of my practice was Christians. And when you do geriatrics, I mean dementia's kind of your bread and butter. And a lot of people with dementia, and as Christians they had a lot of serious questions. You know, what is God trying to do? What is the meaning of all this? And I heard a lot of really bad things people would say. You know, “Well, this is not really a person.” And, “This is all a tragic accident.” And they just need to understand that God is in control or God has purposes. And that helps them so much to go through what really can be a tragedy of dementia.

Sean McDowell: John, can you define for us what dementia is, and maybe just help our listeners understand how prevalent this is in the United States, how many people suffer from it.

John Dunlop: Yeah. Dementia literally means "de," lack of, and "ment," brain. So it's really as our brains begin to deteriorate, a lot of people confuse dementia with Alzheimer's because Alzheimer's is the most common cause of dementia — over 70%. But dementia's the larger category, and Alzheimer's is the smaller. So all told, there's about 6 million people in the U.S. who are suffering from dementia that's been diagnosed. And there's a whole lot of more people who have not yet been diagnosed, or will not be diagnosed because they're just not seeking medical care for it.

Scott Rae: John, to take this a little bit further, tell us what do you know about what the experience of dementia is actually like for the person who has it.

John Dunlop: Oh, let me give you a little scenario, Sean. I mean, imagine what it would be like if you were waking up in bed in the morning, and you felt your bladder was full, but you really didn't know where you were, you didn't know where the bathroom was, and you're just confused and in a fog. And then you tried to get up out of bed, and you wet the whole bed. And then a young lady comes in, and she kind of seems vaguely familiar, and she says she's your daughter, and you're not really sure of that; and then she starts to undress you. You know, so confusing, so hard to deal with that type of dementia, when it gets to that stage.

Sean McDowell: Thanks for explaining it that way. That really creates just such a sense of compassion for people that wrestle with this. What it is like for people when they begin to understand that they have dementia? Do they resist it? What are the common responses that when people start to realize, “Gosh, this is hitting me”?

John Dunlop: They really kind of run from A to Z. I mean, some people have known that they were deteriorating. They were concerned that they were not doing something right, and when they're given the diagnosis of, “Well, you really do have memory problems,” or “You do have even dementia,” it's very relieving. In other people, I've seen some really bad experiences with dementia, and for years they've dreaded the fact that it might happen to them. And they are just really defeated, and there's a danger of just giving up when they're told they have dementia. And incidentally, I like to use the word memory problem when I'm talking to the patient; I don't mind using the world dementia. But you know, if you start saying Alzheimer's, that just rings terror in people. So I tend to avoid that term.

Scott Rae: John, with the patients that you see, when you make a diagnosis of dementia, what are some of the most common questions that you get from patients? I think particularly with your Christian patients about the spiritual side of dealing with this.

John Dunlop: You know, they often just say, "Where is God?" [inaudible] tragic mistake; can any good come out of this? Is he still loving? Is he still kind? Is he still able to help? All these questions come up.

Sean McDowell: John, one of the most helpful aspects of your book is that you put a theological lens on dementia. In other words, you help people think about it theologically. What are the elements of thinking about dementia from a biblical and theological perspective?

John Dunlop: Boy, that's a great question. I start with reminding people that we're all made in God's image, and we have God's breath breathed into us. And that imparts a dignity to all persons, and it is equally true as a Nobel Laureate as it is with the most demented person among us. We are still made in God's image. Martin Luther King said it better than anybody else when he said, "There are no gradations in the image of God."

You know, [inaudible] really God is in control; he has purpose in everything. I love Psalm 62:11: "One thing God has spoken, two things that I heard, that you, oh God, are strong, and that you, oh Lord, are loving." Or Psalm 57, "I cry out to God most high, to God who fulfills his purpose for me." Even God has a purpose; he's fulfilling it with dementia. We may cry out, but that doesn't deny that he has purpose. He's using dementia to help develop our characters and transform us. Defeating sin. Many people with dementia, it's a great defeat for their pride. And teaching their caregivers to depend more on him.

Scott Rae: John, let me go back just for a moment to your comment about all of your dementia patients are still made in the image of God, and that there's something about, as we lose our ability to function in certain ways as we get older, we don't, we are not any less in the image of God than when we were younger and at the peak of health. That's a really important idea related to the image of God, that the image of God is not connected to our ability to function in any specific way. Spell out how you sort of understand the image of God enduring without being tarnished or without being minimized as somebody goes through the stages of dementia.

John Dunlop: You know what, I think, first of all, the image of God is not diminished when men fall into sin. And I think it's fascinating in James, it talks about, when someone's really ticked you off, you're really upset with someone, you're ready to curse them, you're cursing someone who's made in the image of God, James says. And there's an equality of that image that's true for everybody, and all men were made in it, and that imparts a dignity to all.

Scott Rae: Yeah, this, I think, I just want to underscore how important this point is for understanding of the image of God, that it's not connected to any specific ability or inability to function. Because if it were, then it would be what we in philosophy call a degree property, which means you can have, it's something you can have more or less of; and I think you're citing MLK. He's exactly right about that because in the Scripture, the image of God is most certainly not a matter of degree. And this, I think a really helpful way to put the image of God in, I think in proper theological perspective.

John Dunlop: Yeah, I mean, I admit, I thought about it incorrectly for years until I really started to study it. And our mutual friend John Kilner wrote a wonderful book on dignity and destiny, humankind made in God's image. And if you struggle with that, that's a great reference.

Sean McDowell: Dr. Dunlop, I'm going to put you on the spot here a little bit, and ask you to maybe role play with me. That if I was your patient, and you revealed to me that I have dementia, and one of the responses that comes out of my mouth rather quickly is, "Oh my goodness, why would God allow this?" I'm not expecting you to have all the answers, because I realize this is a tough question that's so filled with emotion, thinking if somebody's life was turned upside down. How would you respond in that moment?

John Dunlop: I would remind you that God is loving and God is kind. He could have prevented it; it was not because he didn't care, but he was going to be accomplishing a lot of different things through your illness. Part of it was going to be as you potentially become less competent, you may start to trust him more. Part of it may be in those who are caring for you, is they recognize their dependence on God for more help. And part of it may be the larger community around you. Maybe even in your church, as they are confronted with the meaning of someone who is not cognitively able.

Scott Rae: This is so insightful, John. Because I think my guess is most families and patients, caregiver families and patients with dementia, don't really think about growing, thriving, or flourishing in the midst of this. They think about surviving it. And the idea that it's actually possible to have genuine spiritual growth, and for a dementia patient to bring honor to God, I think is a relatively new concept.

I've got two very close friends; one's a family member who's in the middle of this. I admit, that thought never crossed my mind. What does it look like, in your experience, for a dementia patient to live a life, to live out the remainder of their years, with dementia, and honor God at the same time?

John Dunlop: Well, my closest friend always resisted accepting Christ. He always felt that he was quite competent, quite capable and didn't need Jesus to help him. And he began getting dementia, and as he realized this was something totally out of his control, that he couldn't control everything, he turned to Jesus as his Savior. And I think that type of story can be repeated over and over again. That dementia confronts us with our frailty, with our inability, and allows us to depend more on God.

Sean McDowell: That's powerful. And really brings dignity to the person who's struggling with dementia. I really appreciate that you frame it that way. One of the statistics you shared that surprised me in the book is that you said about 30% of caregivers die before their loved one who has dementia. What accounts for this, and then to follow up with that, what advice would you give to caregivers then?

John Dunlop: Yeah, that's a pretty scary number. But, you know, we got to remember that dementia is a disease primarily of elderly people, and caregivers tend to be elderly people. And caregivers and all elderly people tend to have shorter survival. And so, that's just part of it. But beyond that, caregiving is huge stress. The most common cause of depression in 50-year-old women is caring for someone with dementia.

Sean McDowell: Wow!

John Dunlop: That gives some indication of how significant that the stress is. And I think, if you get into caregiving, as Christians, I think people have to realize this is God's call for them, and they may not have chosen it, but God has called them to this ministry. I wish sometimes the church would commission them to that ministry. We do Sunday school teachers and we do pastors, we should do caregivers. But that's my own bias. The caregiver needs to make sure their own needs are taken care of — physical, emotional and spiritual.

Most caregivers try to do too much for too long and end up getting burned out. And I feel that at that such point as you no longer finding joy and fulfillment in what you're doing, it's time to get some help. And looking at some of the resources of the community, the Alzheimer's Association, talking with your church leaders to see where the church can be involved, and not trying to be the hero and do everything on your own.

Scott Rae: John, let me follow up with that. For a caregiver, I'm sure one of the most difficult questions is how to know when your own resources are enough, or when you need to actually place a loved one with dementia in a special facility who can care for them better. How do you help them make that decision?

John Dunlop: [crosstalk], getting in-house home health aide to come and help two half days a week, getting to a daycare program where the person with dementia can go out every day to kind of a day care, are all options before you might consider residential care. But you got to know what's available. And one of my stresses is the caregiver, soon as they start into that job, they need to start investigating what resources are available in their community.

Sean McDowell: At the end of the book, you write a letter to your family. Why did you do that? And what does it communicate? Would you mind sharing that with us?

John Dunlop: Yeah. I wanted my family, in fact, I wanted to be an example for others, to let them know that I appreciated what they were doing, caring for me, even though if I'm demented, I may not be able to say it. That I wanted to thank them. I wanted them to know that, to me, it was very important that they be able to continue as much a normal life as they could, especially if they were doing ministry within the church and God's people. I didn't let them to sacrifice what they were doing to take care of me. And if that meant I was in a nursing home or a dementia care facility, that would be okay. And I wanted them to know that if in later years they did look back after I was gone, and felt that they had made a mistake, and they should have done something different, that I would be forgiving them. It's ... I knew that they did the best they could.

Scott Rae: That letter was very powerful. And I think it's just a good reminder, not only to write a letter like that, but also just to communicate with your family about what your desires might be, should you become unable to make those decisions for yourself.

John, one of the ethical issues that you raise toward the end of the book is when caregivers, who are also in the position of making medical decisions for their loved ones, and they have to authorize treatments for things that may be treatable conditions, but aren't going to do anything to stop the progress of dementia. And you made the statement that should you have advanced dementia, you would rather die of one of these treatable conditions than actually be treated for it. For example, you'd rather die of kidney failure than have dialysis if you were in an advanced stage of dementia. So my question is, what obligations do caregivers have to authorize or not to authorize those treatments at the end of life, as dementia progresses?

John Dunlop: [inaudible] one of my earlier books called Finishing Well to the Glory of God, I focus on a statement that I frequently make, which is, heaven's not so bad you have to fight too hard to keep out.

Scott Rae: Very good, that's a great statement.

John Dunlop: Dementia's a progressive, terminal disease. Unless people die from something else first, they're going to die of dementia. And I think when we're dealing with those types of diseases as Christians, I personally think it's honoring to the gospel that we not just keep fighting, fighting, fighting, but rather allow our lives to come to the end and not being a fight to the finish, but just resting in Jesus.

Scott Rae: So you would say that caregivers would sometimes have an obligation not to authorize those treatments for treatable conditions? In order to not to delay someone's homecoming.

John Dunlop: Yeah. And I think that one of the key questions that so often comes up with dementia is artificial feeding and hydration. Do you put a feeding tube in, or should you not? And that to me is tough; because a lot of Christians look at Matthew 25, and say, well, Jesus says we should feed and give drink to those who are thirsty. Well, he wasn't talking about a plastic tube. He was talking about scones and glasses. And when feeding tubes can get in so much trouble because a lot of diarrhea, and diarrhea leads to bed sores, and bed sores leads to pain. And I just really resist that type of aggressive care that someone with dementia is coming to the end.

Sean McDowell: John, you're bringing a perspective and helping people to look at how when someone has dementia, they can trust God through this process and even grow through the process. I think that's just remarkable, and so insightful and helpful. On the flip side, you have part of the book that says, you know what, there's some practical things people can do to delay the onset of dementia. What are some of those practical things, whether it's activities that people do, or just things that they eat or don't eat that could delay some of the effects of this?

John Dunlop: That gets complicated, but we got to recognize that for Alzheimer's itself, the nerve death that is associated with Alzheimer's, there's really not much we can do. But a huge percentage of people with Alzheimer's also have vascular dementia, that is multiple small strokes. And controlling our blood pressure, controlling our cholesterol, limiting stress, and if we ... a heart rhythm disorder, take a blood thinner, are all things which can dramatically reduce the risk of these vascular complications of dementia. And that part of Alzheimer's, since they're so locked so closely together, can be helped by that.

Scott Rae: Thanks John, that's helpful. One final question for you. For the Christian, what in your practice, what have you found is the difference that eternal hope of heaven makes, both for the person with dementia and for the caregiver?

John Dunlop: Oh, Scott, that makes all the difference in the world. And if the person with dementia is cognitively intact enough to realize it, then we know that once we are in heaven, we're in God's presence; we will all stand there equal before him, healed in body and in mind. And we'll be able to pursue God in his glory throughout eternity. And when we can grasp that, it is so relieving. And I do think as people get into dementia, some of these lessons, if we just repeat them over and over and over again, they will become more resilient in their memories. It's amazing to me how music enters into this. And I love to — I can't sing, people run away — but if you sing, “When We All Get to Heaven,” you know, just play that over and over again.

And I know that my mother, when she was dealing with dementia, just playing the old hymns over and over again that talked about heaven. Just really, even though she wasn't really able to tell me who I was, there was great comfort in that.

Scott Rae: Well, I think, John, that's actually quite a high note to end on here. I want to commend you for your service to the church, with your book, it's just the culmination of years and years of medical experience, but it's also theologically so well done. It's framed really well theologically. I'm ... it's pretty rare that you see something medical like this that's as well done theologically as you've done with the book. So I commend you on both counts for that, for your service to the church on this, and for how well done theologically it is.

I want to commend to our listeners, John Dunlop's book, Finding Grace in the Face of Dementia. If you have a close friend or a family member or a loved one who is staring down dementia and has that in their future, this is an indispensable resource to help you navigate the difficult issues and conversations along the way.

John, thanks so much for being with us on this, and all the best in your practice, and hope the book finds a wonderful audience out there.

John Dunlop: Well, thank you, I'm grateful for any help I can be.

Scott Rae: Amen. This has been an episode of the podcast “Think Biblically: Conversations on Faith and Culture.” To learn more about us and today's guest, Dr. John Dunlop, and his book Finding Grace in the Face of Dementia, and to find more episodes, go to biola.edu/thinkbiblically. That's biola.edu/thinkbiblically. If you've enjoyed today's conversation, give us a rating on your podcast app, share it with a friend. Thanks so much for listening, and remember, think biblically about everything.