"The churches have failed their people," says ethicist and expert on aging, Stephen Sapp. "Specifically in the area of support for persons with Alzheimer's and their caregivers."
Over twenty years ago, when Dr. Sapp 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 own 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 Dr. Post and Dr. Sapp, are the most important things a faith community 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, and to be involved in the care of suffering families, educational programs for pastors, care teams, and congregations become a moral imperative. Additionally, by bringing awareness of the diseases of dementia in ways that emphasize the inherent worth and dignity of every person, faith communities can emphasize and strengthen their religious missions - to reach out to those in need with a hand that heals.
Be aware of the realities
In order for faith communities to truly help their members become more aware of the realities of Alzheimer's and other diseases of dementia, information needs to be readily and visibly available. Place pamphlets from the Alzheimer's Association in congregational libraries; add other resources on the subject of dementia: books, CDs, video; and then deliberately notify the congregation that these resources are available for borrowing.
Host a caregiver workshop, and/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 worship services that I lead across the country, typically on Sunday mornings, I invite those 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 and other programs as a pastoral 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. Therefore, faith leaders could suggest, encourage, and help family caregivers arrange a free care consultation with staff at the Alzheimer's Association.
Groups of congregations--a cluster of churches from a specific denomination, 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 trained volunteer to lead a support group; alternatively, pastoral care professionals or volunteers could be trained 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 volunteers from the congregation 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.
Faith communities are being called to focus on assisting families in caring for their loved ones - because the reality is that it takes a village to adequately care for someone with Alzheimer's. Therefore, 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."
Congregations can express our spiritual beliefs by embodying the words of Teresa of Avila: God has "no hands, no feet on earth but yours."
The worth and dignity of all persons
By seeing with the compassionate eyes of God, we can recognize and acknowledge 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, their desire to remain useful, and their ability to give and receive love.
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, we can 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 candles, or do a reading, always with appropriate, respectful assistance. Make maintaining the self-esteem of persons with dementia more important than productivity, and make integrating them into the life of the faith community 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 community.
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 religious 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 and companionship will linger long after your visit has ended.
And especially remember this: In every encounter with a person with dementia, there exists, always, an opportunity for healing and an occasion for hope.
Resources for Faith Communities:
To reach the Alzheimer's Association from any area of the country: 800-272-3900.
For more information on Memory Cafés.
For a free download of the pamphlet Aging, Dementia, and the Faith Community: Continuing the Journey of Friendship by John T. McFadden, M.Div.
The Rev. Dr. Jade Angelica is founder and director of the Healing Moments Alzheimer's Ministry and the author of Where Two Worlds Touch: A Spiritual Journey Through Alzheimer's Disease. Her most important ministry, to date, has been caring for her mother who died from Alzheimer's in 2011.