Video Transcript: Strategies for Dementia

“As a hospital chaplain, I spent many hours alongside people whose brains were deteriorating, such that memory and cognition were no longer central to the way in which they encountered the world.  As I watched people with advanced dementia sing and worship, I could not help but be caught up in the deep mystery of what it might mean to worship Jesus, when you have forgotten who He is.

“Holding the hand of someone with advanced dementia and coming to realize that they are not someone who used to be, but someone who is important in the present, and indeed has a vocation that will lead them into the future was, to say the least, humbling, challenging, and quite beautiful.  

“I did not know then, I did not then know about the deep connections between these experiences of brain damage and the redemptive power of God's time.  But I did come to know that damage to our brains,” are you ready for this? … “does not take away our humaneness.   Quite the opposite.   It sometimes provided me an opportunity to expand my understanding of what it means to be human.   I began to realize that who we are is not the sum of our neurological configurations.  There is a sense in which this book is working out formally, ideas that I already knew intuitively.”

Isn’t that a beautiful quote?  And again, Tory and I would highly recommend that you read that book Becoming Friends of Time.   Dementia is part of that.   He has a section on persons who have experienced stroke, persons who have a level of intellectual disability that requires pretty significant support to function in everyday life.  But it really is a powerful book to read.  

But I just wanted to spend this time again, talking about strategies; ideas to try.  But first just addressing this, you know, why did we get into this? I mean, if you think about our lives, it makes sense.   Autism.  We've had children with autism in schools, and adults we've known in congregations, and same with persons with intellectual disabilities.  But I think one of the things is just listening to congregations and pastors.  They just were having so many questions.   What do we do with you? How do we interact? How do we continue to worship with and learn together as a community when a person has been diagnosed with dementia?

Then Tory and I got both pulled in on personal levels.  One with a grandparent and me with my father, I know I referenced him earlier in our time together.  So one of the things that I found myself doing is running to my classroom at Zeeland Christian School on my way to visit my father.  And it was like I was borrowing supplies to have a good conversation with dad, and it's like, Oh, wait, there are some strategies that I'm pulling on in order to have conversation with my father.  And then that curriculum that we showed last week, about intellectual disability from Friendship Ministries.   That was the final straw, and that was when we had somebody call and say, Does this information, does this material work when you are using it with people with dementia?  And Tory and I both went, ooh.   You know what?  This gives us a chance to try it out.  

At that point, my father was placed in a Memory Care Center.  And so we field-tested the material and so between visits, in between material curriculum that we had written, that we were field testing with persons with dementia.  And again, just the barrage of questions from pastors, congregation members, we thought this is something we need to think about.  So again, TorY did a great job of explaining a little bit about what it is.  And now I get to think about some strategies that may be helpful, or maybe some that are not.  

And so I just want to point out that one of the things that I absolutely laugh about is when we ask somebody with dementia, do you remember my name? Really? Why would you ask that? What a way to lead in a conversation? There's a sense that we should just wear that name tag – Barb - you know, so that person can call me by that name.  I can just say, Hey, my name is Barb.  But if that's been your intro line, I would just get rid of that one.  We're not doing a memory test.  We're trying to have a connection together.  So I would take that off the list.  

Another thing that I think I found is that sometimes people think that if they talk more loudly to somebody with dementia, that maybe they'll understand them better.  The truth is, there are many persons with dementia who are also experiencing some sensory differences.  And sometimes louder sounds can be confusing.  And now I've got this person yelling at me and are they mad? How do I interpret this? And so with a brain changes, raising your voice does not mean that person is going to have a better conversation with you.  So take that one off the list too.  

The other thing that I just have to point out is that, I've heard so many times, you know, so and so, I've heard, is having a bad day; I think I'm not going to visit.  Remember back to what Tory said about how that pleasure center is something we experience.  If you're an individual who knows that person, who has relationship with that person, the tone of your voice, the way you approach that person, oh, that might just make a huge difference in that person's life.   You bring that pleasure place, and can perhaps altar a bad day, or at least be a reminder to that person of care and love.  And that is always a good thing.  So be careful about avoiding visits because I don't think that makes much sense at all.  I wouldn't use that on your list of why I shouldn’t go.  

But here are some things that we did find do work.  Again, a couple of reminders.  First of all, that all behavior is communication.  And I'll say that when a person behaves a certain way, as a child, we are often saying okay, but what are they trying to communicate? This happens with young children all the time.   It happens with babies, right? A baby cries and we’re there trying to interpret.   Do they need their diaper changed? Are they hungry? Do they want to be bounced, do they have gas?  Whatever.   We’re trying to interpret that cry.

They smile, right? Oh, they're happy, they're pleased.  All of those things are true.  Even without words, babies communicate through behavior.  But that is true all the way up.  And so now we have a population that used to have words.  And this individual used to be able to say, excuse me, the temperature in this room is really quite hot, I need it turned down, but can no longer access those words.  So a lot of times, you'll see behaviors come out.  And we need to remember that it's on us to be doing that detective work of trying to figure out, Okay, let me interpret this, not that they're mad at me and that's why they're yelling or, you know, stopping off, or whatever.  They're trying to communicate something.  And if we can help with that detective process, it would be really, really good.  

The other thing that I think we need to remember is who that person is.   Do you remember, although these are configured now in a beautiful array on this poster, remember that frame of words that we talked about the other day, who we are in Christ.   I believe this is so important that we remember who was in the center of that.   We can put our loved ones face in the middle of that.   We can put that individual who has been diagnosed with Alzheimer's.

Those frame of words, these pieces, these words, were not ours to take or earn.  Those were given to us as we've stepped into that place of being in Christ.  Those are God provided words.   Those don't change based on our ability.  Thankfully, we didn't earn them in the first place.  And so while that individual and some of those brain changes that Tory talked about, do happen, those words don't change.  Still an mage bearers, still a dearly loved child of God.   Still forgiven, still considered important and indispensable.  Still, as John Swinton points out so beautifully, called to do God's Kingdom work.  We have to remember who is that person in Christ?  Put that person's name in the middle of those words.   What an important thing as we go visit, as we interact, as we think about that person's place in our community.  Those words don't change.  

Anyway.  So I think that that is something we need to remember.  So a few more specific things, some that do work.  I said this before.   Wear your nametag and remember, and I believe I touched on this before as well, just because that person can't say your name does not mean that person does not know who you are.  That person may recognize the tone of your voice, the way you say hello, the way you interact.  That person knows who you are.  I knew that my father knew me as he was making eye contact with me no words, the day before he passed, or actually, this was hours before he passed.  He looked at me and he looked at me deeply for a whole hour without breaking eye contact as we sat there, knowing one another in just a different way.  So don't think because a person can't say Barb, or Lois, or whoever you are, that they don't know who you are.   Knowing somebody can take on many multi-sensory forms.   Be there for that person.

I think another thing that we have found does work are pictures.  You know, that's often what I borrowed.  Sometimes I'd make a theme for the day as I was going to visit, but I think this works also after church.   If you are in community and a church setting, this person is part of that community, too, its coffee time, what are you going to do?  You know, what if you have a picture of something, you know, would be meaningful for that person, an example of something you shared together that's in your pocket, now you've got something to focus on and talk about at Coffee time.   What a wonderful gift to be able to share through a picture.  So again, if you can go away from a words-only connection, that can be helpful.   If you're part of a small group with this person, again, to talk around pictures can be helpful.  

I've loved my iPad when I would go for that visit, partly because I could make those pictures large.   You can do that too, in a church setting.  I mean, we carry so many different things and perhaps your phone even has the capability of making a larger portion of a picture.  Sometimes as vision changes, it was important to try to make that photo even larger.  But you know, I would say, again, whatever you can use, whether they're video clips, something, but if you can get it close with that field division, adjust the size that can be helpful to as a person's brain changes over time.  

Another thing that we used a lot, I used a lot, was a prayer shawl.  I don't know if you're familiar with that.  Many churches make those for people, but it's a hand knit opportunity to hold on to.  And the people who make them have prayed over every stitch.  As they're making those prayer shawls, they have knit prayer into that.  And so you know, often I use that was personally but also as part of a Bible study that I'm going to tell you about in a few minutes.  But it was one of those things that, again, we could share, that person could hold that as we prayed.   It was a tangible, touchable thing.

I know there's a pastor that I work with; whenever she goes to bring communion or interact with communion, whether that's part of in church or in a different setting in a home or whatever that may be, she always asked this person to hold a cross as they as they celebrate the Lord's Supper.  And so again, it's a seamless thing as part of the worship service, would you hold this as we think today of the sacrifice of Jesus for each of us, and then goes on to deliver communion, but also would do that if she were visiting personally that person.   So, what can you think of that you could hold that would represent something special or important? Those things have been, they're just tangible ways of interacting with a person that involve visuals, which tends to be a much more stable sense than words that often fade.

One of the things that we discovered was this beautiful opportunity to worship.  And we just have to tell you about this.  Because it was this wonderful language that we could share, even when so many words were lost with this person's life.  So I let you know that we went to sort of field test this material.  Totally, please check this out.  But this is one of those situations where, while we were thinking we were coming to bless a group, what Tory and I found out is that this group blessed us big time.

We had a chance to pilot these materials to see if they were effective with persons with dementia.  So as I mentioned, my father, we had him be part of a sort of a typical four to six member adult small group, he was the only person with dementia in that group.  And then we also said, since we're here anyway, we might as well lead a Bible study for persons with dementia who are also part of this place that may enjoy that.  So we had between 14 and 20 people from week to week, and maybe three or four facilitators who were part of that setting.  And I cannot tell you what I have learned about how deep people who have lived their lives in congregations, in worshiping God, how deep that is, how that language remains when other language is gone.  It marvels me, it's a marvel to me how God constructed that place in the brain that hangs on to those particular memories.  What a phenomenal gift.  

So again, we came in and you know, some things that we just happened to try just because we thought we should.  Again, on a whim, I said, Would somebody like to open in prayer?  Seriously, because nobody really talked much there.  And we'd ask questions and but sure enough, somebody raised his hand, prayed this prayer, five complex sentences that came pouring out of his mouth.  It was just a powerful experience as he led us and individualized it, Lord, as we begin this Bible study time together… Really?   So again, I don't know how long it had been since the man had put together five complex sentences, but the staff there truly was in awe of what was happening in this Bible study.  

The Bible study materials are very visual and so we'd say hey, do you remember this Bible story? Everybody would say no, and then we would run it on the screen.  And people would interact with the words that were spoken as well as the story.  

The materials themselves again, lots of visuals were there.  We talk about emotions, and some people could point to some emotion, pictures that were provided.  But it was just this interactive time.  We had a schedule … yeah, you can believe we did.   A schedule of events that was going to happen.  And people were just delighted to be part of this time.   We, we would stay in that room for an hour and a half! An hour and a half with individuals who are placed in a locked facility.  And the activity director left after one of our times together and she was, her face was just pale, and I said, are you okay? And she said, These people, they walk around so confused all the time, I just can't believe what I just saw.  What she saw was the Holy Spirit invading this time of worship.   What she saw was people engage, every mouth moving with the Apostles Creed, every month moving with the songs that we were singing.   

One woman who wasn't able to move her mouth as much as others, she started taking a pen and drawing these colored pencils.  And we said, has she ever drawn before? They said, No, I've never seen her do that before.  What was God showing her at that time.   I don't know.   

People would hold that prayer saw, we pray for one another.  And I think one of the most powerful things we did was, took our name tags when we can put them on a note card that says please pray for.  And then we put them in a hat.  Everybody chose one and took them back to their rooms.  We saw several of those cards next to a primary chair where that person often set in their room.  And I know that I went to my father's room and I said, Dad, you picked my name.  And again, this was long, long after we really had a lot of meaningful interaction just when I would come and blather on.  He touched patted that card and he said, Honey, you have so many special gifts.  

I treasure that.  But people treasure the chance to do something, to do something tangible.  They had a job, they were to pray for this person.  And several people brought them back the next week.  And they said I've been praying for Bob, who is he again? And they didn't even know who that person was within this Bible study.  But they were praying for Bob all week.   They had the card to prove it.  It was truly an amazing experience.  

As we called people into song, and scripture, prayer, conversation about who God is.  It was just a delightful time.  So I can't recommend this enough.  If you're looking for a tool, even when I would go visit my dad, I'd pull up these lessons on my computer because we could share a Scripture together, we could share a Bible story together.  We could share some fun activities together.   Some of them are sort of playful, and we had a really great time.  But I just can't tell you what I learned from that.  

The power of having worship together.  So much so that it came… this is my father… he had recently fallen so he had a bandage on his head.  And this is about six weeks before dad passed away.  This is my stepmother Ruth who was beside him.  And this is on… I'm glad you're not going to listen to the video clip that we have it on video… but this would be the Banstrer family, grands and great grands..  And what happened on that, it was Christmas, and we said what gift can we give to dad? To grandpa, to great grandpa?  

We knew that opening a gift was far beyond what dad could do.  He wasn't really interacting much with people.   He would say those little social phrases as people would come in.  But we knew he loved to worship and we knew he loves scripture and song.  And so we did a Christmas program.  We did it in a place he was the most comfortable.   We moved the furniture out of the way, and we were just delighted to spend that time with my father.  

And you know, I think one of the things that happened.   Those two little cuties walked in.   He didn't probably know them, their names certainly not.  But he saw they were dressed in those costumes and his first words were Ahhh.  And they came in their costumes, and the baby in the bath towels, and look how we’re dressed.  We sang first verses of Christmas songs interspersed with scripture to the Christmas story.  Dad sang along at each turn.  And I thought bravely at the end, I turned to dad and I said Dad, would you like to close in prayer?  Because at this point, he'd been using his voice a lot he was interacting.  And on that day, six weeks before he passed away, not only did dad do a prayer that was meaningful about the season of the year and the joy this brings us, he did a call to prayer.  Just celebrating that we were there together as a family to celebrate this gift.  Seriously, Holy Spirit.  Thank you for invading our worship and we just, I learned that we need to do this at every turn, especially for those who've been inundated this with this.

Dad has been practicing these Christmas songs since he was two years old, and at 92, they are very much a part of his heart.  But again, we all treasure that time.  And I know, it's soon to be a year since this Christmas performance.  And then soon after that a year since dad passed away.  But one of the things that we will treasure as a family is watching that video, when we were there singing very poorly, but singing together and celebrating Christmas one last time, in that place of being together here.  And now dad having a fullness of joy that we can only imagine.  

Anyway, I wanted to say this, but something else that I was truly thinking about as relates to this topic of strategy is really, are we planning ahead? Have we thought about dementia-proofing our children's ministries? I was thinking that we could get in a room and dad and I could share scripture, we could share similar bank of songs, we could share Creeds.   Are we doing that anymore? That the songs that our children are singing in children's ministry? Will they be here five years from now? Ten years from now when they are 92? What will be at the core of their hearts? And sure, maybe there will be some kind of a cure or pill you can take to not have dementia.  I don't know.  

But I do wonder, are we developing a bank of intergenerational songs, readings, Creeds that we can say together that we can learn together, that intergenerational picture that you notice here is one? Can we all sing that Hark the Herald Angels sing? Do we all know that one? Do we all know Amazing Grace? Or are we all able to share that time together? Do we truly all speak the same language of worship or are there pieces of it that we could all decide to learn together so that across ages and generations, we have the option of entering into that what I have called the level playing field of worship language.  

So some things to think about.   Hopefully, this is helpful to you as you imagine visiting, or as you actually visit, whether that person is part of your church and coming out each week, and maybe you do investigate using that together material is one of your adult Sunday school materials that everyone can participate in, including this individual who's been recently diagnosed.   Maybe you begin to just wear name tags in your community of seniors, because you have a few people that are experiencing beginning signs of dementia, whatever that may be.  

But there's another big piece with persons with dementia and whether that person is still part of coming each week to your community and relying a little more on those visuals.  We talked about pictures, things to hold, or whether that person is part of a care facility.  We just want to give you have some ideas about creating personalized plans and not just thinking about the person with dementia, but thinking for those who surround that person's life as a caregiver.  

So again, enjoy the rest of your day and look forward to finishing up this talk about dementia as we continue this discussion next time.