Video Transcript: Quick Take

Thank you. I have my bag of goodies. True to the teacher heart, we always have bags full of things that we have to bring with us. 

Props, fidgets, books, of course. I am delighted to talk about dementia-friendly  worship practices with you today. If you need a fidget, I have some in my bag. If you haven't found one yet, feel free to come on up. One thing I want to share  with you, first of all, is a quote by Dr. John Swinton that really convicted me as I  began to learn about how inclusive educational practices could apply at all ages  and stages, including in the lives of people with dementia. He says this in his  book, Dementia, Living in the Memories of God. 

Dementia doesn't entail a loss of self. Understood properly, the self remains  intact even in the most severe forms of dementia. Any loss of self relates to a  failure of community. 

I was convicted by that, but he does offer hope. He says our hope lies in the fact that we are living in the memories of God. As long as God remembers us, who  we are will remain. 

I will not forget you, God says. See, I've engraved you on the palms of my  hands. That's a promise from Isaiah 49:15-16. 

Linger on those words as we think about the resources, the worship  engagement of people living with dementia. What do we mean when we talk  about dementia? Dementia is really an umbrella term for a range of brain  diseases. Alzheimer's, probably the most well-known form of dementia. There are over 120 other forms of dementia, all of those under that umbrella  term. So what does it mean? It is a change in the structure and the chemistry of  the human brain. Dementia attacks the left side of the brain first, where  language, understanding, and production is managed. 

The right side of the brain is actually retained somewhat longer, where  rhythm, music, prayer, social chit-chat are managed in the brain. But you will  actually see, if you see scans of a healthy brain and scans of a brain with  dementia, there is more space, there is less matter. So what's happening in that  brain are loss of connections, loss of material that are causing the changes that  happen. 

It's important for us to understand that because we can sometimes get frustrated as we see these changes in our friends, our family, our loved ones in our  congregation. Has anybody here been in the presence of a person with  dementia? Thank you. Thank you.

Do those members still participate actively in your church? A few. And that's why this is important to talk about, isn't it? That's why we're convicted by Dr.  Swinton's words on failure of community. Because so often I hear, mom's not  like she used to be, or grandpa isn't who he used to be. 

That's not necessarily true, is it? But we do see changes. We do see changes in memory, right? We'll see forgetfulness. We'll see changes both in memory  retention, so sort of the filing system of putting memories into place, as well as  recall. 

We'll see changes that can be sort of stuck in time. The positive approach to  care calls this the amber phase of dementia, when you are living constantly in  memories or in the past, remembering people the way they were 20 years  ago, for example. We'll notice changes in vision. 

We lose peripheral vision. We get what I call the vision blur. We can't actually  see what's happening, and all the periphery fade away. We see changes in  social responses. A far greater reliance on that social chit-chat. Well, so I'm fine. 

It's good. Just those little phrases that get you by in small talk, there might be a  greater reliance on those and far less real content in a conversation. You may  also see a lack of niceties when you walk in the room, and it's not, oh, it's nice to see you. 

How's the weather? It's, you've gotten fat since you came last time, right? And  we'll talk more about that in a moment. You'll see a change in words. It was  astounding to me to learn that people living with dementia in the early stages of  the disease will lose one out of every four words you say. 

In the later stages, they will lose up to three of every four words you say. Think  about how that changes how you're going to interact. How much you might say. Right? All of those things. We will see changes in was it going to change? It's  not changing. It's not changing. 

There we go. Now we changed too far. We will see changes in impulsivity,  right? That, my, you've gotten fat since I saw you last time. 

Impulsive things starting to happen as the amygdala starts to take over more  and more of what the brain is actually doing. More fight, flight, freeze type  responses to things. More perceived danger.

All of those things are true. Impulsivity as the filters tend to begin to fade away.  So inhibition disappears. 

And things that used to be polite and very important to this person may now not  be a part of their vocabulary or their daily interactions anymore because all  inhibition is lost. So walking into the room without their pants pulled up now just  happens because they forgot to pull them up and didn't realize that was an  inappropriate thing to do at this point. But it's important to remember this all has  to do with the processing, right? It's not that they have lost the ability to hear or  to see or to do these things. 

It's that the brain's processing of all of these things has drastically changed.  The human brain is an amazing organ. It is constantly trying to rewire routes to  do things. 

But if the brain continues to disintegrate, there are fewer and fewer pathways to  figure out how to get that information from one place to the next, which is why  this disease tends to look very scattered, but there actually is a pattern that you  can see progressing over the years. So how do we interact, right? How do we  continue to connect? First, without judgment or correction. It's important to  remember not to pick fights, even if they start them. 

Let's not try to teach or correct them when they say something wrong or get the  schedule incorrect or whatever it might be. Simply care. An important thing I've  had to learn also is a name tag is really helpful. 

I go to visit my grandmother and I say, I'm Tori. I'm your granddaughter. I'm  Tom's girl. 

It's good to see you today. Can I help you with that? Always interact in giving  warning, labeling, even myself, right? Labeling everything we're going to do,  giving warning to things, thinking about those responses that may be happening, and always, always with gentleness and dignity. A few ways that we can engage  in worship in this way, using some resources. 

For example, the resources that Friendship Ministries has developed got me  very excited. We tested it in memory care units and with loved ones with  dementia, and we found that we could, in fact, engage in Bible study if we had  lots of visuals with us. And again, putting them right in that strike zone of their  visual field.

Let's talk about these emotions. How do we feel? And what is, what is scripture  saying to us in these times? We had to use pictures in order to connect. And I  found that there was a severe lack of devotional material that had images paired with, again, few words, because meaning can be lost in too many words with  people living with dementia. 

So we came up with a devotional with large pictures, large words, short  interaction, a one-sentence scripture, an icon to represent the focus of the  prayer, and a one-sentence prayer, so that a person living with dementia could  have this out on the table, look at it for the day, for the week, reflect on what the  image helped them to connect with, because I found that pictures related so  much more when words were fading in our forms of communication. I've been  working on a project with a group at Holland Home in Grand Rapids, which is a  large organization that serves individuals in care facilities, and they had created  years ago the Handbook for Worship with People with Dementia, and I'm  working with them on a revised edition of that. I'm excited that it's going to be  published in a couple of months. 

It's called the Evening Star Worship Guidebook, and we are just excited about  all of not only the visual aspects of things in that, engagement opportunities,  again using icons to support prayer, but all of the ways that we can train ministry leaders to be equipped with gentleness, warning time, thinking about  how people with dementia are processing the Word of God at this stage in their  lives. Some who have had a lifetime of Scripture and prayer. What can we do in  our churches and with our leaders to connect with individuals with dementia?  Can we have objects to hold on to while we are talking about a topic, or while  we are praying? Holding a wooden cross can sometimes be so meaningful just  to connect in prayer. 

Having a prayer shawl and saying to that individual, I would like to surround  you in prayer. Can I put this prayer shawl on you to pray for you? Or would you  like to hold this prayer shawl as we pray for you? Shall we hold this prayer shawl to pray for someone else together now? And I have to tell you that pictures of  themselves or their families go really far to connecting with someone. When you run out of things to say after 10 minutes, right, so having images with you, and  especially if they're on a device so that you can zoom in, they're going to want to look at themselves, their favorite person in the picture. 

If you can zoom in on a device on those pictures, such a helpful way to just  connect again at a personal level. Instead of asking them to remember anything, simply look at it and and focus on that together. Remember when I said that the 

right side of the brain lasted a little bit longer than the left side of the brain, and  that is where rhythm and music and prayer happen to come from. 

And I was in a room with individuals with dementia, and we said, John, would  you be willing to open in prayer? Now, John had spoken maybe five whole  words in a day most of the time where he lived. And his, some staff members at  his facility were in the room with us, and he opened with full five sentences of a  beautiful prayer opening our Bible study time, and that staff member's jaw  dropped, said, I have never heard him say so many words. Where did that come from? The Lord is good. 

Prayer maintains its place in our lives. And music, if you've ever been around  someone living with dementia and noticed how the spark returns to their face  with music, and if they have been living in a space where worship has been a  part of their history, you will have songs that you can connect with. Even Jesus  

Loves Me, that was our most requested song in our Bible study time in that  memory care facility, and everyone joined in, and they were harmonizing. 

I mean, it was incredible. This group obviously had spent lots of time singing, but it was astounding to just see how music brought people to life. So I encourage  you to worship with people with dementia. 

The other thing to think about is supporting families. This is a long journey. It can last 10 to 15 years. 

It is a challenging journey, and people need support. A simple way to support  people is to have one person per week who connects with that family as the  puzzle piece connector, as I like to say. And if you have one person per week  covering four weeks of the month, you only need four people, and you have an  instant connection, an instant community. 

That might be other couples their age who maybe one will take the spouse out  for coffee and the other will stay with the spouse with dementia at home where  it's safest and easiest. Although I've had young adults say to me, I'm in my 20s  and I'm single, but please don't rule me out from being a part of  

these community teams. There's so much I can learn from these couples and  these individuals who want to share the stories from decades ago that I have no  idea about what happened in those times, so please let me serve as well. 

So community teams are a simple and effective way to continue to  remember our individuals with dementia who may have been vital parts of our  congregations but now feel so isolated because of the changes that they are 

going through. And there are resources to help you with this. There are deep  theological academic resources like books by Dr. John Swinton that I encourage you to read but you're going to need a notebook and you're going to need to  take lots of notes and think deeply with him. 

There are resources like those by my mentor and friend the late Barbara J.  Newman, Accessible Gospel, Inclusive Worship, full of those worship icons and  ways to engage. And her latest publication that just came out in November and I have copies with me here today, Worship as One, Varied Abilities in the Body of  Christ. There are stories in there of our interactions with individuals living with  dementia and how we worship together in such sweet times. 

If you need guidance on care and interaction with adults with dementia, I  encourage you to look up Positive Approach to Care and the resources by  Teepa Snow. And Holland Home has actually put together the Dementia Care  Guide based on her approach and you can download it for free from their  website at hollandhome.org. And it's a full guidebook of what you might notice in individuals with dementia and how you can interact with them in a caring  environment because the positive approach to care says until there's a cure,  there is care. And I wanted to keep this brief to honor how we need to keep our  slides and our presentations moving because you need time to hear from  the other speakers today. 

But I will be at my booth and open to questions if you have more that you want  to hear about dementia. Thank you.