Cords of Grace

Congregational care for memory loss

by Debby Frantti and Molly Henning

In 2008 Shirley and Ron approached Pastor Geoff Chapman and Debby Frantti, pastoral care director of St. Stephen’s Anglican Church in Sewickley, Pennsylvania, with a deep concern for the caregivers of people living with dementia. Shirley’s mother was living with dementia, and her husband had recently been diagnosed with Alzheimer’s disease. Ron had been caring for his wife in her journey with Alzheimer’s disease for three years. As a professional counselor, Shirley had been leading a support group for all types of caregivers, but she felt that the needs of those living with dementia were so distinct and demanding that a dedicated support group would help address the day-to-day unknown, the isolation, and grieving involved. We wanted ways to encourage our friends with memory loss and their care partners who needed more than a standard worship service or Bible study to access and recognize God’s unending love for them. With the support of the church and the Pittsburgh Alzheimer’s Association education director, Shirley and Debby began a faith-based support group for both people living with dementia and loved ones who care for them.

We had anecdotal information and personal experience with people living with memory loss but no training for leading support groups that specifically involved this range of people, so we dove in with love for the people and lots of prayer for God’s grace to lead us. We read a lot of books and attended Alzheimer’s Association conferences and a museum docent training class. We prayed more and experimented along the way to find the language and physical aids that would help us connect with our friends.

The Meetings

We meet once a month for about an hour and a half, starting together with a Bible reading and devotional. Our central issue is spiritual support, which is necessary for both groups. At the beginning of our time, we meet together over a brief devotional reading and discussion. Being together gives equal dignity to everyone around the table. This is a time to focus on our value before the Lord. After about 10 minutes of discussion on that theme, we divide. The primary care partners go with a facilitator into one room for a support group meeting. Caregivers deal with exhaustion, isolation, helplessness, guilt, frustration, anger, fear, and grief. Support is achieved largely in expressing these feelings, which must be done separately and confidentially. This opportunity to lament with others allows them to realize that they are not alone in their circumstances and feelings. Although “fixing” is discouraged, hearing how others have solved difficulties may be helpful.

At the same time, in another room we use different means for those with memory loss. They have several facilitators for their own social and spiritual support. Because people with dementia can still talk about what they can see and enjoy music long into the disease, we use related artwork and familiar songs as prompts to discuss the devotional theme. They retain emotional memory and the ability to describe what they know through the senses, so we can have an engaging conversation over a picture related to the devotional theme and encourage group members with God’s love and faithfulness. We can laugh over exercises or sing songs that resonate with emotional memories. We also have some chair exercises and prayer.

With this project we encourage primary care partners and our friends with memory loss by focusing on particular
ways in which God shows love for us.

The facilitator is a small-group leader with the responsibility to create a safe atmosphere of caring empathy, where participants are able to share their burdens and encourage each other. While it is not necessary to be a medical or social service professional to be an effective facilitator, some qualities are crucial. First and most important in our context, the facilitator must love Jesus, be able to articulate his or her faith, and desire to bring the love of God to people in difficult circumstances. The facilitator must be willing and able to point the participants to the Lord for help and comfort. The person who is the guide in these conversations and relationships will provide the best help by personally submitting to the wisdom of God and sharing God’s grace.

Most of our dementia-specific training comes from the Alzheimer’s Association, and some from books we read or conferences. Our conversation starters are open ended questions that can be answered in the moment through emotional or visual prompts—never “Do you remember?” questions. Patience and good humor are key. Reading some good books like John Zeisel’s I’m Still Here or Jolene Brackey’s Creating Moments of Joy will be a great help.

Developing a Resource

We began to compose our own devotionals and added the visual and physical components related to spiritual and general well-being, and we saw people respond so positively that we knew God was working in special ways with us. Others who visited from 30–45 minutes away needed more convenient support. The stigma of dementia is so isolating, and it does not need to be. We began to receive requests to replicate our materials. With understanding and patience, eyes open to the value of every person, it isn’t hard to listen and love people. Cords of Grace: A Faith-Based Support Group Guide for Those with Memory Loss and Their Care Partners is our effort to equip even the smallest church to do that with confidence. A congregation needs only one copy to use the resource.

One of the things we have tried to do in Cords of Grace is explain the basics of facilitating for our groups, which is not so different from facilitating other meetings where member participation is primary. People with memory loss have something to say. It is important to give them opportunity, appropriate structure, and time to do that. The handouts we use can be copied or modified and are found in downloadable format at no cost at our church website, www.ststephenschurch.net/memory-loss-resources.

It is worth mentioning here that there is a secular movement called Dementia Friendly USA, which is looking to improve the quality of life for people with memory loss in community settings. By educating all sectors in helpful ways to interact and communicate, they hope to encourage creative, respectful engagement that will allow people with dementia and their care partners to remain active and independent contributors in their communities. One particular challenge that remains is the stigma of dementia which keeps many from receiving the support and encouragement that they need. We are hoping that the Dementia Friendly movement information dissemination will help that in our community. We have started our training with them for faith-based initiatives.

The Congregation’s Role

The most valuable service we can do for others is to help them hear and understand the hope of the gospel. We all need to know that God loves us with compassion and tenacity. God loves us because it is God’s character to do so. God never forgets us, never gives up on us or casts us aside. God has made us in the divine image and treasures people at every stage of life. God’s love for us all gives us hope, value, and purpose. Some circumstances make it difficult to connect with that truth. With this project we encourage primary care partners and our friends with memory loss by focusing on particular ways in which God shows love for us. We want to reassure them that they are important members of the faith community and of God’s kingdom. Without them, we are diminished, and all of us are enriched when the body of Christ is living in God to its fullest capacity.

As the population of people with memory loss has clearly increased, more and more attention has been given to the issue for individuals and families, but not so much for what the church can do. So many people who care just don’t know where to start. So many who struggle under the weight of memory loss or intense caregiving long to be reminded that God has not forgotten them.

If you are interested in beginning a ministry for people living with dementia and their caregivers, learn as much as you can about dementia, the needs of primary caregivers and local organizations that offer help. The Alzheimer’s Association is not a spiritually oriented organization, but it does recognize and encourage attention to spiritual needs. Your group may choose to become a sanctioned Alzheimer’s Association support group by participating in the training they provide and following their administrative practices. Their seminars and instructional resources will be helpful for those who are new to support group facilitation. Their conferences also provide continuing education credits for professionals. They make print resources available to care partners as well and will list your group on their website (www.alz.org). Public libraries have many helpful books, and local Alzheimer’s Associations loan resources. There are informative articles and videos on the internet sites such as Dementia Friendly USA and The United Methodist Church.

Most of all, take time to pray. There is no substitute for the leading of the Holy Spirit. He will speak to your heart about the needs of your church or faith community.

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