Dementia caregiving is an arduous, emotionally taxing journey filled with constant challenges and a profound sense of responsibility. A support group can provide a sanctuary where caregivers can share their experiences and emotions, finding solace and companionship in a community that comprehends their struggles. Mary McDaniel Cail outlines eight essential steps to help your church create an effective group for those caring for loved ones with dementia.
Dementia caregiving is heartbreaking, frustrating, exhausting, inconstant work with no end in sight other than the death, one skill at a time, of the loved one for whom the care is given. There are, of course, bright, sweet moments, and we trust God to bring it all to good, revealing to us its gifts along the way. But no matter how optimistic and faith-filled a caregiver’s perspective, dementia caregiving is hard, and friends and family don’t always get it. They do not comprehend the overwhelming responsibility, the grief, and the insolvability of many problems it causes. A support group in which caregivers can communicate and exchange ideas, while feeling deeply understood, is reminiscent, somehow, of Jesus telling the wind to be still, at least for a while. Some support groups bond and form a circle of relationships that compensates for a prior social life that caregiving has upended.
Starting a caregiver support group requires a plan, competent leadership, a private space to meet, and members who understand the group guidelines. Some support groups are highly structured, but the groups I have led, or in which I’ve taken part, consist of people with a related concern who want to be in a safe, confidential place in which difficult experiences and feelings can be shared. Many full-time caregivers are with a spouse or parent, day and night, who cannot carry on a coherent conversation. Support groups are thus an outlet for adult social interaction. Although guest speakers addressing relevant topics are beneficial from time to time, support groups are mainly for open, nurturing communication between people who must cope with the dementia and want to talk about it.
These eight steps can help a church launch a successful dementia support group.
1. Define the purpose.
Is the purpose to provide a place where caregivers, whether church goers or not, can help each other in a safe setting, or will the group be religiously oriented, since it is under the auspices of a church? If the group is composed of only church members, an opening prayer offered by the group leader may be comforting, as well as the sharing of prayer requests. Community members who aren’t religious may feel disingenuous, however, if swept unexpectedly into a sacred activity they regard with indifference or disagreement. Communicate the group’s purpose in a way that correctly guides the expectations of prospective members.
2. Determine the meeting time.
Caregiver groups are best scheduled when caregivers can attend, and unfortunately, caregivers are often anchored at home for most of the day. People with advanced dementia cannot safely be left alone. They require either an adult sitter (not always easy to find) or a care arrangement or respite program, whenever the caregiver wishes to leave them even for a couple of hours. You can assign a meeting time and hope for the best but consider putting out an inquiry first by email or a notice in the church bulletin: “Our memory ministry team is planning a dementia caregiver support group for church and community members. If you are interested, or know someone who might be, please contact the church office and tell us your preference for a meeting time (morning, afternoon, or evening) and frequency (once a month or twice a month). More details to come.”
3. Decide how you will train support group leaders and recruit new leaders per group of seven or more members.
The initial inquiry mentioned above should yield an idea of how many people may attend. The optimum number for a support group, based on my experience, is 10, give or take a few in either direction. If many more sign up or show up, either offer two separate groups at the outset (recruiting more volunteer leaders as needed) or arrange to split the large group in half on the night of the meeting. Enlist two leaders for each group. Leading a support group can be deceptively difficult, depending on the personalities and needs of the participants. Having two leaders not only allows for larger groups to be divided if necessary but allays the tension that may be felt by one, should group dynamics prove challenging.
4. Plan for group leader training.
Some people are naturally gifted group leaders: They are compassionate, confident, sensible, outgoing people who relate well to others and can subtly keep control of a group. Most of us, though, need a bit of direction. If there is a psychologist or counselor in the congregation who works with families and groups, count your blessings and try to persuade them to accept the role of training support group leaders. Alternatively, seek out a local expert from the community or regional Alzheimer’s Association.
5. Work out the logistics.
Support groups generally meet for 60 to 90 minutes, depending on how many are present on a given day. Participants need comfortable chairs arranged around a table or in a circle, in a quiet, private room, where there will be no interruptions (for example, not next to the sanctuary when the organist may show up to rehearse). Drinks and snacks are nice if the budget allows. Full-time caregivers often have little chance to get away for a good cup of coffee and a special pastry, and this is a way for “caring for the caregiver,” to use a well-worn phrase, the importance of which cannot be overstated. Small kindnesses matter when life is hard. If the church can afford it, go the extra mile to make caregiver groups special.
6. Clearly state the group’s intention.
Develop a written statement to provide to each group attendee, which includes the purpose, a disclaimer (which may be important for legal reasons), and the expectations, for example: “Caregivers Comfort is a monthly support group for caregivers and family members of loved ones with dementia to share their experiences, feelings, and suggestions in a compassionate setting. We do not provide group therapy or professional advice, just a safe place to be with others who understand. Safe means we expect that we can trust each other to keep the group confidential, we allow everyone enough time to talk, and we don’t criticize, judge, or give each other unwanted advice.”
7. Promote.
Announce the group, its purpose, and the date and time of meetings, perhaps with an invitational flyer. Depending on how wide you wish to cast the net, send it as an email to all church members, and post it in libraries, senior centers, and other places where people visit community notice boards. Make announcements at worship and church functions. Include a notice in the church bulletin. Ask active parishioners to spread the word. Make use of social media.
8. Plan a fixed agenda.
The following is a sample 90-minute agenda along with a brief explanation of each item. An agenda encourages appropriate contributions, provides a tool to review the group’s purpose (third item below), and helps to keep the group on task (Linda A. LeBlanc and Melissa R. Nosic, Behavior Analysis in Practice 12, 2019). It should be shared at the group’s beginning and perhaps posted in view during group meetings.
- Arrival (about 10-15 minutes): Greetings to each other, refreshments.
- Opening (3-5 minutes): Welcome, prayer, or devotion.
- Review of the group’s purpose and introduce new members (about 5 minutes)
- Checking in (about 45 minutes): Each person is given the opportunity to share what has happened since the last group.
- Review and focus (15-20 minutes): The group leader asks about any past concerns, directs more attention to individuals who may need it, or asks questions to encourage discussion around a common theme or problem.
- Closing (5 minutes): Prayer requests or thoughts before ending.
Reprinted with permission from Dementia and the Church by Mary McDaniel Cail copyright © 2023 Fortress Press. This book is available from the publisher, Cokesbury, and Amazon.
Related Resources
- Finding Sanctuary: Ministries with Persons with Dementia and Their Caregivers featuring Elizabeth Shulman — Watch the Leading Ideas Talks podcast video | Listen to the podcast audio version | Read the in-depth interview
- As Memory Fades, Ministry Grows: Ministry Alongside Persons with Dementia by Jessica L. Anschutz
- Nurturing a Dementia-Friendly Church by Kenneth L. Carder
