How can congregations support persons with dementia and their caregivers? Elizabeth Shulman offers an organic three-part program to help congregations create ministries to meet the needs of people with dementia and their caregivers.
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How can congregations support people with dementia and their caregivers? In this episode Elizabeth Shulman offers an organic three-part program to help congregations create ministries to meet the needs of people with dementia and their caregivers.
Jessica Anschutz: Welcome to Leading Ideas Talks, a podcast featuring thought leaders and innovative practitioners. I am Jessica Anschutz, one of the editors of the Leading Ideas E- newsletter, and I’m your host for this Leading Ideas Talks. Joining me is Elizabeth Shulman, a pastor, university researcher, healthcare chaplain, and author of Finding Sanctuary in the Midst of Alzheimer’s, which can be used as a program to develop dementia caregiver ministry, or as a guide for individuals or support groups seeking hope in their caregiving journey. Welcome, Elizabeth. I enjoyed reading your book and I look forward to our conversation today.
Elizabeth Shulman: Thank you. I’m so glad to be with you.
Jessica Anschutz: I want to invite you to start off by sharing what inspired you to develop a guide for congregations and individuals to develop dementia caregiver ministries.
Elizabeth Shulman: Okay. I was serving as a pastoral care director for a 600-bed nursing facility — a nursing home facility — in Knoxville, Tennessee, and I did a lot of work in the memory care unit. And, you know, it was Tennessee. It’s the Bible belt. Everyone went to church. As I met with primarily spouses but also kids coming in to see their parents, they talked about how their church was the backbone of their growing up, and now that they were encountering the caring for a loved one with dementia, they were turning to their church for help. And the churches just did not know how to help.
Now, this was 14 years ago. I myself was providing care in a different capacity to my husband, and I realized that our sense of spirituality really impacts us and can just give us an overview of all of our experiences. So, I decided to go back to school and get my doctorate in counseling. My focus was the experience of marriage for spouses because that was kind of my experience and for spouses of Alzheimer’s patients.
So, I did that. I went back to school. Then I interviewed spousal caregivers, and then I also interviewed pastors. And what I found was that churches are wanting to help; they just don’t know how. So, that’s when I went back and wrote the book so that caregivers could share and pastors and other church leaders or congregation members could know how to better and specifically help.
Jessica Anschutz: I found the book to be a wonderful response to those needs. And I want to invite you to share for our listeners about the “Finding Sanctuary” program, and how organic it is to a congregation or a particular community.
Elizabeth Shulman: Okay. Yeah, I tried to make it so that it wasn’t just a set way to do something, but rather it was a way to speak differently to different congregations. It’s essentially three parts. A part for spouses to kind of process their experiences and create a safe space for them to share with others what they may be going through. Then a part for children also to do the same because children and spouses can have very different experiences with caregiving. Their needs are different so they each have their own group to do that. Then, concurrently, there’s a group for pastors or congregation members who feel called to help serve this population but don’t know how, so it walks them through what it’s like for a dementia caregiver both as a spouse or as a child. And then there set of the program identifies gifts that they have so that, the final week, both groups — the spouses and children, the congregation members — all meet together. The caregivers have a list of needs that they have identified, and the congregation has a list of gifts that they have to share. Then they compare, and they see where they can merge to form a ministry that’s unique to their congregation.
Jessica Anschutz: What a wonderfully organic approach. While I knew that more and more people were being diagnosed with Alzheimer’s disease, I didn’t realize that there is now a diagnosis every 65 seconds. And it seems to me that this is a tremendous opportunity for congregations — no matter how large or small they are — to respond. How have you seen congregations respond to the needs of and serve the caregivers in the midst of their communities?
Elizabeth Shulman: I’ve seen them do it in very situation-specific and unique ways. For example, I had one family where the father had been a banker, a bank teller specifically, and he was always counting money. And as he got further along in his dementia, he was always fingering money or paper. And there was a brilliant congregation member who said, “You know, why don’t we just get some play money? I’ll come and I’ll spend an hour a day.” And they would count money. They would come up with costs for items, and he would give them the dollar amount, and she would give him change. And it was a really cool way for them to interact. And she was using her gifts of just coming up with a great idea and then seeing how it worked for this individual.
Now sometimes there’s some trial and error. But you know, I think for those who are willing and interested, God carves a path to have some really tremendous interactions with people despite the dementia.
Jessica Anschutz: Are there ways that congregations have responded on sort of a group level to provide care, or is it mostly an individual response?
Elizabeth Shulman: No, there have been group level. More — finally — as more information and resources are becoming available and I find more so for the person with dementia.
Dementia-Friendly Churches is a program where they help design services that are more dementia friendly — maybe creating a room for a caregiver to sit with their loved one. Group-wise, I’ve seen churches have, on the mornings where they put their bulletins together (maybe on a Thursday morning) so that a caregiver and their loved one who is still able to insert bulletins or stuff mailings. And they will sit as a group and do that together — caregivers and their loved ones — getting coffee, sitting around a table for an hour or two in the morning. And the caregiver and the loved one feels like they’re helping out because they’re putting together a bulletin. You know, it’s their being useful, and they feel worthwhile. So, those are just some examples that I’ve seen.
Jessica Anschutz: And it also benefits the congregation. What a what a wonderful idea. What a wonderful idea. In thinking about supporting caregivers, I want to invite you to talk a little bit about the unique needs of spousal caregivers versus children who are caring for a parent.
Elizabeth Shulman: Okay. You know, with spouses, you have shared such a physically and emotionally intimate relationship, and then the loved one finds themself losing the very person that they would go to talk to for support. And that can be true for children, also. But, specifically, spouses. They’re losing, often, their main sense of support, so to be able to develop friendships or have friendships where you can be open and share about your experience is so important. With children, a lot of times, it’s the different roles you have — the patriarch of the family who now needs help bathing or the person you would go to for wise instruction and they just stare at you blankly. Even within those subgroups, everyone has a story behind their relationship with the person who’s developed dementia. Just honoring that and being honest with yourself about what specifically you are missing or your unique struggles — when you can identify your needs, it’s easier to identify how someone can help.
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Jessica Anschutz: As church leaders seek to better support caregivers, what are the things they should keep in mind?
Elizabeth Shulman: I think they should keep in mind what I just mentioned — that everyone has their own story. And you know we have kind of a blanket impression of what caregivers may need — just general support or whatever — and, again, not assuming that someone should spend more time with the loved one who was physically abusive to them. Everyone’s got a story, so to be open-minded.
I think the best offer of support is just listening initially, and then, then, going from there. And just remember that, a lot of times, there are conflicts within families over caregiving. A congregation member may go to their pastor and have this list of complaints and they absolutely are probably valid. But the person about whom they are complaining may also have some valid issues. So, just to be compassionate and open about all sides of the story is a good start.
Jessica Anschutz: That’s very wise advice and insight. One of the things you lift up in the book is the deep sense of loneliness that caregivers report having and experiencing. How can congregations respond to this and offer support?
Elizabeth Shulman: I think they can do it in a number of different ways. Just speaking openly about it from the pulpit. Say, “You know we have dementia caregivers in our congregation, and I want to acknowledge that. And you may have needs or prayer requests.” And setting up a box for dementia caregivers to share their prayer requests because, from those prayer requests, you gather needs. Also putting little blurbs in the newsletters. You know, a person may not be able to attend church, but if they see something about dementia and caregivers, acknowledging their struggles, just being validated by opening that newsletter and seeing that can be so helpful.
And then by providing resources. There are so many caregiving support groups that are available online. You know, there’s a sense of anonymity, so you can may feel a little more safe until you get used to it. But you know, Facebook and Reddit and the Alzheimer’s Association, all have forms of caregiver online support groups. So, directing them and giving them that specific information can help caregivers feel acknowledged. They know where to reach out to. And it also educates pastors and church leaders.
Jessica Anschutz: Wonderful ideas, and I hope some of our listeners will implement them, if they haven’t already done so. As part of the process that you mentioned for local congregations, you said that the aspect for the church volunteers looks at their spiritual gifts. Why is it important to match the spiritual gifts of the volunteers with the needs of caregivers?
Elizabeth Shulman: It’s important because then both parties benefit and find meaning. It’s one thing to provide a duty to someone in need, but I truly believe that God gives us gifts to use them. And so, if we can identify something we really enjoy doing, a hairdresser may really enjoy washing hair and there’s a husband who has never washed his wife’s hair and has no idea how to do it. And so that woman says, “I’ll come by once a week, and I’ll do her hair.” You know, she’s using her gifts and fulfilling such a desperate need, and it makes her feel good. The husband feels good. And, you know, his wife probably feels pretty good after having her hair washed. So, thinking about what we enjoy doing and how that can be applied to helping someone with dementia I think is just a great starting point, and I think that wherever there is a need there’s a gift that can go with it.
Jessica Anschutz: And it’s something as simple as washing hair.
Elizabeth Shulman: Yeah.
Jessica Anschutz: As you think about the model you developed for Finding Sanctuary, do you see ways that the model could be adapted to address other issues in a community?
Elizabeth Shulman: I do. My model, you know, is based on narratives from caregivers. Each group reads stories that caregivers are encountering, and it couples with scriptures that can meet those needs. Everybody has a story, whether it’s dementia caregiving or parents of young children. You know, we’ve all got stories, and I think scripture is always there to address that. My model though is really identifying the issues but not staying stuck there. I really like using the illustration of cooking and the oil on your stove catches on fire. So many times, when we encounter a problem or a struggle, we focus on that fire — “oh, this is going wrong and this is going wrong” — but we don’t stay there, looking at the fire. We turn away from the fire and look for something to put it out. And I think the same is true for any struggle or problem we have. If we continue to regurgitate it and talk about it, then the more we encounter those struggles. But if we are willing to have faith and turn away and look at scripture, or willing to reframe how we look at a situation, finding the positive. I don’t think Jesus was joking when he said don’t worry. I think he was serious. So, how do we not worry? Taking our attention off the problem — even momentarily — to be willing to look for the hope and look for a solution, I think God will provide. So, my model with this is to identify the problem. Then, how do you find hope? Where can you turn? Then, applying that to the struggle.
Jessica Anschutz: One of the challenges you lift up is that a lot of people have trouble asking for help. How can congregations and church leaders encourage people to ask for help?
Elizabeth Shulman: Right. While it’s hard to ask for help, it’s the caregiver’s responsibility to ask for help. If they’re complaining about not having help but they haven’t specifically asked, then — huh. But going back to the idea of a of a prayer box or even saying “It is so hard to ask for help. But in your caregiving situation, if it would help for someone to come and sit with your loved one for an hour a week so you can run to the store or take a shower, then let us know and we’ll find someone.” Throwing out some of those specific common needs. “If you need a meal brought to your house, let us know, and we will come up with a list of people who can do that.”
Jessica Anschutz: What other creative ways have you seen congregations respond to the needs of caregivers and persons with dementia?
Elizabeth Shulman: I’ve seen a group of men build activity boards — it typically is men, but it certainly doesn’t have to be, putting locks together. You take a giant board, and you bolt different little activities on it, putting a key in a lock, or threading bolts into nuts, things like that, and then taking them to someone whose dementia is advanced to the point where they just like to keep busy with their hands. I’ve seen the same for — what are they called — sensory touch blankets where women will make a two-by-two-foot square of different materials — fuzzy, scratchy — and weave it into a quilt, and it gives someone with dementia different tactile stimulations, which can be helpful for keeping them be calm and doing something active with their hands.
Jessica Anschutz: That would be a wonderful way to engage congregations that have quilting ministries in providing support for persons with dementia.
Elizabeth Shulman: I just want to throw out another one is just a card ministry. So many loved ones can’t attend church anymore, you know. It’s just so they know that they’re not forgotten. I think can be huge. And you know that it’s not difficult and there are people in churches with that skill.
Jessica Anschutz: Absolutely, and I would even go so far as to say there are persons in care facilities that can make phone calls and send cards on behalf of a congregation.
Elizbeth Shulman: Right. Right.
Jessica Anschutz: And what a great way to engage people of all ages in that sort of activity. You could have a Sunday school class make cards that other people could then mail to folks. It could be intergenerational as far as the response goes. As we think about congregations that don’t yet have dementia care ministry, what words of wisdom would you offer to them as they seek to get started and embark upon such a ministry?
Elizabeth Shulman: I think initially just diving in online and looking for resources. There’s this great book called Finding Sanctuary in the Midst of Alzheimer’s, but my website, Elizabethshulman.com, I have devotions. I have a list of hundreds of caregiver needs that caregivers have shared. I would also encourage people to go to a dementia care unit. And, you know, maybe a Sunday school class goes on a field trip, and they go and visit a member that used to be with them, and interact with people with dementia, because I think there’s still this stigma. You know they don’t know how to respond, so “I can’t really say anything that would be beneficial.” And yet you can go, and you can read a story or look at pictures of old cars or talk about war experiences, or you know, just — baptism by fire — go in and surround yourself with people who have dementia. Check in with yourself and see how that feels. But chances are you will overcome some of your hang-ups with people with dementia because you just haven’t exposed yourself to it or interacted with them. So, doing that I think is also a great step.
Jessica Anschutz: What words of advice do you have for those interactions? How should people respond?
Elizabeth Shulman: If you’re interacting, if you get a chance to talk to the family members first and say “What did your loved one used to do for a living? Did they have grandchildren?” Taking, printing off pictures of old magazine advertisements or old cars. There are also lists online of questions to ask. With people with dementia, they tend to lose their memory with regard to things that happened recently. But things that happened way long ago are still intact, so going back — “Who was your favorite teacher? Did you have a pet growing up? What kind, or what was the first car you drove?” You know questions like that can help engage.
Jessica Anschutz: Those are great entry points to conversations. As we think about caregivers, I know one thing that I have seen is that they are often exhausted and there is a tremendous need for self-care. From your experience as a caregiver, what advice do you have to offer to other caregivers?
Elizabeth Shulman: Well, of course, taking time for yourself. It’s like when you have a little child, you sleep when they sleep or do something that you enjoy. But I think a lot of times, it is difficult to find time. So, in real time you can practice reframing and looking at a situation differently. An example I like to use because it’s so prevalent is that caregivers often encounter repetitive questioning. You know, “When’s mom picking me up?” “Well, you know your mom died 40 years ago.” Don’t try. You know dementia care is not about setting people straight or being logical. It’s about offering assurance. So, “when is mom arriving?” “What do you remember about your mom? What car is she going to be driving?”
When you’re constantly arguing with a loved one about something that they are truly unable to understand because of the disease process, it makes no sense. It just aggravates you. It makes you more frustrated. So, if you can go along with the person — “What time is lunch?” “It’s at noon.” I can remember, with my grandma, we would guess what’s the over/under — “How many times is grandma going to ask what time is lunch?” — and make a game for our own sanity. Otherwise, “I just told you it’s….” No, you answer as though she’s asking it for the first time, because for her it is the first time she’s asking. So, if you can kind of reframe and be willing to look at something differently, it can take some of the stress and help with some of the exhaustion. Not all. But, you know, you’ve got to make tweaks where you can.
Jessica Anschutz: Right. And take the opportunities for a break when you can get them. Elizabeth, the title of your book is Finding Sanctuary. Share with our listeners the importance of finding sanctuary, and how you how you interpret finding sanctuary.
Elizabeth Shulman: Finding the title of the book came at the very beginning. When I first started writing it, I thought, you know, I want to provide something about where people feel safe to share, feel a sense of reprieve and just comfort. And that’s what I strove to find with this book — to help people identify how to ask for help so that you can have that hour to recharge but also with reframing or appreciative inquiry.
Focusing on the positive is not ignoring the negative. It’s just giving your mind an opportunity to feel good in the midst of chaos, using your God-given imagination to wake up in the morning and imagine how you want the day to look. Because studies show that people who focus on positive outcomes are more likely to get that positive outcome rather than, you know, making the checklist of all the drudgery things you’re anticipating. Take a risk and anticipate the positive. What if everything does work out today rather than “What if this happens? What if that happens?” You know, just really looking…. When we look for the hope that God provides, we’re much more likely to find it.
Jessica Anschutz: So true. And the importance of positivity can certainly make an impact on caregivers and care receivers. As we think about hope, Elizabeth, what is your hope for congregations when it comes to dementia care ministry?
Elizabeth Shulman: I would hope that every church has a copy of my book and any other dementia care resources on their shelves. I would hope that churches put as much energy and research into dementia caregivers as they do Vacation Bible Schools. You know, every year you know there are the themes and the banners outside the churches. I would love to see that for dementia caregivers.
Jessica Anschutz: I thank you so much, Elizabeth, for your passion, for your care, for your hope, and for taking the time to share with our listeners about the needs of persons with dementia and their caregivers. Any final words from you for our listeners?
Elizabeth Shulman: No, I just am so appreciative to share my story, and I hope that others find it beneficial. And just, I love dementia. I love talking about it, so thank you so much for having me.
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- Nurturing a Dementia-Friendly Church by Kenneth L. Carder
- As Memory Fades, Ministry Grows: Ministry Alongside Persons with Dementia by Jessica L. Anschutz
- Tapping the Gifts of Homebound Leaders by Susan E. Gillies and Ingrid Dvirnak
- Finding Sanctuary in the Midst of Alzheimer’s (Morgan James Faith, 2021) by Elizabeth Shulman, available from the publisher and at Amazon.