Alzheimer's caregiving takes a village

Alzheimer's caregiving takes a village

UU World Magazine Fall 2014 , published by the Unitarian Universalist Association

The churches have failed their people in the area of support for persons with Alzheimer’s and their caregivers, says ethicist Stephen Sapp, an expert on aging. Over twenty years ago, when he first became active in the field of Alzheimer’s care, he held workshops to educate religious leaders in his geographic area. Very few attended. Based on my experience and feedback from others in the field, this hasn’t changed. At dementia care conferences and workshops faith communities are largely unrepresented.

The reason for this is not a mystery. It’s the fear factor. People are afraid of Alzheimer’s. According to surveys, Americans are more afraid of getting Alzheimer’s than we are of dying. So we deny it and we avoid it for as long as possible. It’s only when Alzheimer’s knocks at our own door, it seems, that we seek information, support, and healing.

In The Moral Challenge of Alzheimer Disease , Stephen Post urges church communities to become prepared for and proactive in the area of dementia caregiving by:

becoming aware of the realities of the disease;

offering support groups for the family caregivers;

providing respite care for the patients, so the caregivers can rest and rejuvenate.

These actions, according to both Post and Sapp, are the most important things a church can do. Through my experience, research, and work as founder and director of the Healing Moments Alzheimer’s Ministry, however, I have learned that these recommendations are easier said than done. Even the people we expect to care for the sick—pastors, parish nurses, nursing home chaplains and volunteers, and even hospice volunteers—often resist visiting people who are cognitively impaired, mostly because they don’t know what to do or say in the presence of someone without memories or words.

To directly address this resistance, Healing Moments created a unique educational program for UU pastors, care teams, and congregations. We believe it is morally imperative for UUs—as individuals and as religious organizations standing on the side of love—to be involved in the care of our own suffering families. Additionally, by bringing awareness of the diseases of dementia in ways that emphasize the UU Principles of the interdependent web of all existence and the inherent worth and dignity of every person, UU caregivers can emphasize and strengthen our denominational mission to reach out into our communities with a hand that heals.

Be aware of the realities

Help members of your congregation become more aware of the realities of Alzheimer’s and other diseases of dementia by placing pamphlets from the Alzheimer’s Association in your church library. Add other resources on the subject of dementia: books, CDs, videos. Suggest, encourage, and help family caregivers arrange a free care consultation with staff at the Alzheimer’s Association (800-272-3900).

Host a caregiver workshop at your church, or offer a worship service on the topic of dementia (and invite the surrounding community to attend) so more people can learn about the needs and abilities of those with dementia in a heart-opening way. At Healing Moments services in UU churches across the country, my colleagues and I have invited those in attendance who have a loved one with Alzheimer’s or dementia, or who have lost a loved one to some form of dementia, to come forward and light a candle. In every service, at least one-third of the congregation has come forward. This affirms the importance of providing these services as a ministry of compassion to those among us in need of healing.

Provide support and respite care

Families who have loved ones with Alzheimer’s need emotional support as well as information. Groups of congregations—a cluster of UU churches, for example, or an interfaith group of congregations—could sponsor a support group for their families coping with the disease. The Alzheimer’s Association may be able to provide a staff person or a volunteer to lead a support group; alternatively, pastoral care team members could be trained by Healing Moments staff to lead these groups.

Organize and host a Memory Café, a special kind of social gathering for persons with Alzheimer’s or dementia and their care partners. These cafés, which began in the Netherlands in 1997 and are now beginning to thrive in the United States, fill a great need for friendship and socialization, both of which are critical for the afflicted persons as well as their caregivers.

Most importantly, learn the techniques for communicating and connecting with people who have Alzheimer’s so you can go into their homes and provide competent care with confidence and joy, giving family members a break. The reason Alzheimer’s family caregivers cite most often for not attending workshops and support groups—which could ultimately ease their feelings of confusion, fear, and helplessness—is that they can’t leave their loved ones alone and have no one to care for them.

Congregations should focus on assisting families in caring for their loved ones; it takes a village to adequately care for someone with Alzheimer’s. Encourage caregivers to ask for help, and make a concerted effort to respond with “yes” when they do. In addition, extend concrete offers of assistance. “I’ll take Russ for a walk or to lunch today.” “I’ll come on Saturday to help with laundry and housecleaning.” “I’m going to the grocery store on Friday; would Russ like to come with me? Give him your list.” “I’ll come on Sunday to play cards with Russ so you can attend the church service and potluck.”

The worth and dignity of all persons

UU congregations need to embody our First Principle by recognizing and acknowledging that all is not lost through the decline of cognitive abilities. For persons with dementia, even in the later stages of these diseases, their personal essence remains, including their emotions and their desire to remain useful. Congregations can be especially instrumental in supporting the life goal of all persons to make a contribution to the world. For example, at church suppers, find jobs for both persons with dementia and their caregivers that don’t require advance preparation: clearing tables, washing dishes. At services, ask persons with dementia to hand out the order of service, light the chalice, or do a reading. Always provide appropriate assistance. Make maintaining the self-esteem of persons with dementia more important than productivity, and make integrating them into the life of the church a priority.

As Alzheimer’s progresses, it may become difficult for persons with the disease to quietly and cooperatively attend worship. At this stage, persons with Alzheimer’s and their caregivers may tend to isolate themselves. In order to keep them engaged in congregational life, consider redefining the purpose for the family room for fussy children. Ask them to help with the setup or cleanup of coffee hour or other events. Let them know they are still a valuable part of the congregation.

When members of your congregation move to nursing homes, visit them—often. Go at times when they are available to do something with you—even if this is just a trip outside or even a stroll down the corridor. Accompany them to a church service, a meal, or an activity at the facility. Smile and enjoy their company, even if it is quiet presence. Don’t be afraid to be appropriately affectionate—verbally and physically. Brush their hair. Gently massage their shoulders or hands. Watch Lawrence Welk together. Sing and dance. Persons with Alzheimer’s may not know exactly who you are, and may not even remember that you visited. But they will remember how you made them feel in the moment; and these moments of joy will linger long after your visit has ended.

Remember that in every encounter with a person with dementia, there exists, always, an opportunity for healing and an occasion for hope.

This article appeared in the Fall 2014 issue of UU World (pages 9, 11–12). Image (above): Copyright: melpomen / 123RF Stock Photo

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