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The VOICE
of the
United Methodist
Disability Connection |
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Greetings in Christ!
You have likely heard that the US is on the brink of an epidemic of people diagnosed with Alzheimer's Disease and related dementias. According to the Alzheimer's Association, 5.4 million Americans, including one in every 8 person 65 and older, are living with the disease. When you look at the demographics of your local congregation, you can assume that some families are affected by dementia. Are they still able to participate in your worship services? Are they missed when they can no longer attend? Do you find other ways to minister with them and their caregivers, and to keep them connected with their faith and your caring?
Many congregations do have outreach ministries geared for persons affected by dementia, and you will read about some outstanding examples this month. Dementia is very much a disability. We who champion disability ministry are called to hold persons with Alzheimer's and related conditions in their rightful place in our congregations. Even as they forget who they are, we can find ways to nurture their spirits and build up their caregivers.
Lynn Swedberg, Editor
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Building a Comprehensive Dementia Ministry
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Caregiver Support
People caring for loved ones with dementia, a 24 hour a day job, often feel isolated. Many churches offer a monthly support group where caregivers can exchange information and  support each other. Brentwood UMC in Brentwood, TN, hosts an Alzheimer's Encouragement group facilitated by a physician. The meetings provide an open floor for asking questions and offering solutions that have worked for participants. Members whose loved ones are in later stages of the disease or have passed away mentor those who are dealing with earlier phases and dilemmas. Groups may open with a devotion and close with prayer. Participants share spiritual as well as practical concerns, as the progression of dementia often triggers a spiritual crisis. Several respite programs run an additional monthly support group for caregivers who use their program.
Training
A number of congregations use the Alzheimer's Association's training materials and courses as a starting point. Pat Thorlton, parish nurse at North UMC in Indianapolis, adapted these materials to stage a four session forum called Caring Conversations. Speakers, including a physician, nurse, social worker and attorney, provided training to the congregation and community. Pat also recommends the book Creating Moments of Joy and other resources by Jolene Brackey (see Resource section below) for teaching skills for working with people who have dementia.
Rev. Lida Merrill of Heritage Christian Services in Rochester, NY, uses Alzheimer's Association and other materials to train care home staff and the public in addressing the spiritual needs of persons with dementia. She encourages use of music of the person's era, finding that "music is a huge connection with a person's spirit." Karla Woodward at the Church of the Resurrection in Leawood, KS, holds regular training sessions for volunteers who make home visits and help with worship services as part of the church's Silverlink program. Brentwood videotaped their initial training session and use it to orient new volunteers. Since the volunteers are working with a vulnerable adult population, all the ministries provide and strictly enforce safe sanctuary training and policies.
Respite
Time off is a huge need for caregivers. Some ministries, including the Alzheimer's Project in Tallahassee, FL, arrange for trained volunteers to provide in-home respite for several hours a month. Other churches have day programs that operate once a month, once a week, or up to four days a week. One caregiver reported that the first day his wife attended was the first time in two and a half years that he had any time to himself. Charges vary, but most programs offer a sliding scale or scholarships so that people needing the program are not turned away.
The programs use a mix of paid and volunteer staff. Some keep planning simple by having participants bring a sack lunch. Other programs offer a balanced cooked meal to decrease caregiver stress and find that members often eat best in a relaxed social setting. Everyone eats together. At Brentwood's Sunny Day Club the only way to tell members from volunteers is by the color of their name on their name tag.
Clients gain as much as caregivers, and begin looking forward to their day out. One participant sets her clothes out the night before to be ready for the day at what she calls "The Happy Place." Leaders select activities to enhance quality of life and utilize remaining skills and gifts  of the participants. A day may begin with prayer and hymn singing, proceed to group exercise, and may include games, gardening, and crafts. Sunny Day leaders report that a favorite activity is visits from preschool children who perform holiday programs or color with group members. Before they leave, the children have hugs for everyone.
"This is a place where people can be who they are and be OK with that" said Brentwood congregational care pastor Rev. Erin Racine. A recent memorial worship service honored members and volunteers who have passed away, reflecting the strong bonds that have developed among volunteers, family, and participants.
Brentwood used the resource book Walking with Grace by Robin Dill to guide them when they set up their program. Robin, program director of Grace Arbor respite at the First UMC of Lawrenceville, GA, has mentored many programs and is available for consultation. She wrote the book after discovering a void when she developed her program. She continually introduces new ideas to keep things fresh. Although secular programs in some communities may provide similar services, she says that "the major component that sets us apart is that the Holy Spirit has full reign." The volunteers gather to pray before the participants arrive, and find "the Spirit gives us creativity, ideas, and the ability to love these folks." Many volunteers who started when the program started eight years ago are still involved.
Transportation
By definition, persons who participate in dementia programs should not be driving. North Church uses the church bus to pick up members, including some with dementia, who need a ride to Sunday worship. Other churches may use volunteer drivers, or the paratransit system. Care facility vans bring many participants to the monthly Silverlink worship service at the Church of the Resurrection. The vans are met by volunteers, who escort attendees into the chapel in the same dignified manner that an usher escorts a wedding guest to their seat: providing an elbow to hold.
Worship
North UMC set up Care Teams to support several members with dementia. For instance, one gentleman with diabetes helped himself to many coffee hour treats while his wife rehearsed with the choir. Care team buddies were assigned to provide companionship and diversion. Another member started shouting during worship, but did better once care team members took turns sitting with him. A few members complained about the disruptions, but became part of the solution when they realized the problem and need. Now that this man is no longer able to attend, he is missed. Team members still visit him in the nursing home, and even planned a birthday celebration for him since he has no local family members.
The Silverlink program at the Church of the Resurrection holds 20 worship services a month at various retirement, assisted living, and nursing homes. Volunteers and student interns assist pastor Karla Woodward. She writes a liturgy and sermon outline each month which is used in each setting but adapted to the abilities and attention span of each gathered group. These orders of worship and other resources are posted on the Silverlink page of the church website. The church also hosts a monthly chapel service for people who are unable to participate in standard worship because of calling out or difficulty sitting still and following the service. Familiar hymns, prayers, and Bible verses help even some who have lost their speech to participate. Karla shares practical tips in her website articles, including using communion wafers because they are easier to swallow, and avoiding having people stand up mid-service because some will take that as the cue to exit.
Top of page (Photos in this article are from the Sunny Day Club at Brentwood UMC.) |
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Important Social Media Updates
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Facebook:
The Committee has a new Facebook page. The old Task Force page will soon be discontinued, and we don't want to lose you. So far only 83 people have "Liked" the new page, while we have 487 followers on the old page.
Please "Like" the new page to continue to get updates on the Committee and disability-related news. The new page is also the place to post questions and start a discussion. 
Click on "Like." After you do this, it will read "Liked." Place your mouse pointer over the "Liked" box and a box will pop up (this is what's illustrated). Left-click and check "Get Notifications" and "Show in News Feed."
Several of our friends who have children with disabilities have new blogs on Facebook.
 You may want to "Like" their pages to receive their posts. Former Committee member Myra Monroe writes Special Assignment and shares spiritual insights gleaned from raising a daughter who has Down syndrome. While her purpose is to offer "Christian devotionals for parents of children with disabilities," other readers will also enjoy her posts.
Another blog, Sherrie Lowly - writer, comes from a UM pastor and mother of a young woman with profound disabilities. Sherrie is "exploring writing for the voiceless - the profoundly 'other' - and those who care for them."
Pinterest:
A growing number of churches and individuals use Pinterest to share programs, ideas, and dreams. The boards are a convenient way to post links to program models and resource information.
The Committee Pinterest site offers 5 boards: Events, Books, News and Concerns, UM Disability Ministries, Sensory Rooms, and Accessible UM Churches. We would love to have you follow us!
Disability Consultant Lynn Swedberg shares her passion for accessibility through boards on Camp and Outdoor Accessibility, Church Accessibility, and Meeting Accessibility.
Please tell us about your use of Social Media to enhance your church's ministry with people who have disabilities! We will share more sites in future newsletters. Write to us at the Committee email address.
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| Upcoming Events | |
That All May Worship - March 14-15, 2013 Norfolk, Virginia
Register and read more information about the conference. "Sharing our Stories; Building our Communities: A conference to promote awareness, provide support, and celebrate the gifts of people with disAbilities in our faith communities."
Speakers include author Mark Pinsky and Dr. Jeff McNair, among others. Sponsored by the Faith Inclusion Network of South Hampton Roads which includes 5 United Methodist Congregations.
UM Association of Ministers with Disabilities - July 10 - 12th, 2013
Quadrennial meeting Birmingham, Alabama
Special guest speaker is Dr. David Watson of United Theological Seminary, biblical scholar on disabilities and organizer of the new Certification for Ministry with People with Disabilities program.
Contact the UMAMD for more information. Deadline to request hotel accommodations is
Feb. 15th.
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Resources
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Publications 
Creating Moments of Joy: A Journal for Caregivers by Jolene Brackey, 4th edition, 2011. Full of practical tips for ways to enhance daily living and quality of life for persons with dementia.
Dementia: Living in the Memories of God by John Swinton, 2012. Published by Eerdmans. This thoughtful book calls Christians to move away from the medical model and instead use a theological approach to addressing the challenges of dementia. We need to sustain the person's identity by finding ways to share our memories of who they are and the life they have lived. Rather than attributing behavior to pathology, we give them the benefit of the doubt. We focus on what people can still do, rather than deficits. The church community needs to re-member the person and their caregivers, creating a place of welcome and belonging. We can more easily continue to visit the persons with dementia when we learn to be with them in the present moment without the need for words or goal-focused activity. Above all, we can affirm that we all are held in God's memory and our identity is safe with the God who knew us before we were born.
No Act of Love is Ever Wasted by Jane Marie Thibault & Richard Morgan, 2009. Available from Upper Room bookstore. Recommended by several sources as helpful for its affirming message and practical suggestions. Chapters on spiritual care, worship in care facilities, and the role of the church are supplemented by an appendix listing successful group activities and worship ideas.
Walking with Grace: Tools for Implementing and Launching a Congregational Respite Program by Robin Dill, published as a downloadable pdf file. Contains forms and information needed for starting a respite program, along with many programming ideas that have worked well in the Grace Arbor day center.
Websites
Alzheimer's Association
On-line Training and Certification On-line and local courses, DVD's, tips, resources and more are available through this comprehensive site.
Medic Alert + Safe Return Program Make sure that your participants participate in this program which helps ensure that in the event they wander and become lost they will be identified and love ones contacted.
Extensive Bibliography on Dementia and Spirituality
Enhanced Moments Website with training DVDs and audiotapes, DVD's with familiar topics such as an abbreviated old time country church service, useful tips and tidbits, and books including Creating Moments of Joy and Enhanced Moments. Ask about a possible discount for non-profit organizations.
General Board of Discipleship, Older Adult Ministries. Find helpful articles on "Caregivers & Caregiving" and "Issues Facing Older Adults". Subscribe to the Center Sage newsletter, and read the Fall 2012 issue which has articles on "Spiritual Neglect and Older Adults", "Caregiver Volunteers", and "Hope Springs from the National Plan to Address Alzheimer's Disease".
Silverlink, Center for Ministry with the Frail, UM Church of the Resurrection. Karla Woodward offers sample worship liturgies and articles on Worship for the Frail, Communicating with People who are Frail, and more. Lindsay Boten posted a project guide for ElderServe: creating a volunteer ministry involving care facility residents who carry out service projects.
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Thanks for taking the time to read about these ministries. Please remember to forward the newsletter to others who might find it valuable, as this is the only way we can expand our subscriber list and get the word out.
May the new year bring blessings for you and your congregation as you discern how to become an ever more inclusive part of the Body of Christ.
Peace,
United Methodist Committee on DisAbility Ministries
Contact us through the Committee email address. |
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