Providing a Pastoral, Caring Ministry to People Suffering with Alzheimer's Disease
by Joseph W. Hager (July / August 1999 — Volume 15, Number 4)
How pastors and the church can care for those with Alzheimer's Disease through its various stages
Does my family understand me? Do my friends care about me now? Will my pastor visit me?
These disturbing questions could be the cry of people suffering with Alzheimer's disease, a progressive, irreversible neurological disorder.
In a biblical sense, a person with Alzheimer's disease is similar to the man born blind, waiting patiently by the pool of Siloam for someone to help him into the water (John 9). No one sees him because he is there every day. He is ignored. It's easy to ignore a confused person. After all, they won't remember my visit anyway. There are so many other people who need my pastoral caring. This confused person will no longer be able to contribute to the building up of the kingdom of God.
However, people suffering with Alzheimer's disease still need to be fed spiritually. Although Alzheimer's patients will not be able to hold theological discussions, nor comprehend four and five point sermons, pastors can still provide a meaningful, loving, and caring "ministry of presence."
Pastors are trained to preach, teach, and administer the sacraments of God's grace. That ministry needs to include the Alzheimer's patient. Pastors need to find creative ways in which to minister to the confused and continue to feed them the bread of life.
Pastors must keep in mind that a person with Alzheimer's disease becomes confused and regresses in stages. This regression may take six months to a year — or 10 to 15 years. Dr. Barry Reisberg, clinical director of Geriatric Study and Treatment Program and assistant professor of Psychiatry at the New York University Medical Center in New York City, identifies seven stages, although most scientists have identified three to five stages.
To truly minister to the needs of the patient and their family, I believe pastors must clearly understand three basic stages.
The First Stage
People in the first or early stage of Alzheimer's disease have trouble with recent memory. They may forget that they had breakfast and lunch and eat a non-nutritional meal for supper. They'll forget taking a pill a half-hour ago and may end up taking an overdose of pills. They'll forget names of familiar people, such as a spouse, children, relatives, and friends. They'll forget past events, such as the death of a relative.
For instance, they may talk about preparing dinner for their mother who has passed away. They may become hostile and angry if they are corrected. Reality orientation will not work. Telling the person that their mother has been dead for five years doesn't help, and will only upset the patient.
Using Validation Therapy is more helpful. By saying, "You must be very close to your mother," the clergy will leave the person open to talking about that relationship. This will have a calming effect. During the discussion, the patient may become confused and mask their confusion by exaggerating information because they can't remember details.
Alzheimer's patients at this stage may still be attending the Sunday worship services. Even though it is getting more difficult for them to understand, they are able to follow parts of the service. At this stage, long-term memory is very active and alive. They are still connected to the faith in a meaningful way, and the social contact is good for the patient's self-esteem.
Sometimes, however, caregivers may be shy about bringing the patient to church for fear of them saying something bizarre, although an informed pastor and congregation can help make the experience less daunting. The social contact is good for the caregiver as well as the Alzheimer's patient. Social isolation tends to exacerbate memory loss. It's helpful to keep the patient involved in the faith community as long as possible.
Eventually, the caregiver may feel uncomfortable in bringing the patient to the worship service. Once this occurs, have a special monthly worship service for the shut-ins of the congregation with a special invitation to the Alzheimer's patient and caregiver.
Consider shortening the service from 45 minutes to 20-25 minutes. Be sure to pick out familiar hymns to sing. Very often Alzheimer's patients know the words to familiar hymns by memory. Often, they can recall the words to the Apostles Creed or the Lord's Prayer.
If there is a sermon, it should be kept to approximately five minutes. Alzheimer's patients have a limited attention span. Keeping to one major thought is helpful instead of preaching a two or three point sermon. Visual objects to illustrate that theme are also helpful.
For active Christians, the sacrament of Holy Communion is forever buried in their minds, and participation in this rite can be very meaningful. It is most important to remember to treat these persons with dignity. Do not speak down to them or use baby talk with them. When they have lucid moments, their brain recalls the words learned as intellectual, mature adults.
In stage one, their long term memories may be intact. Thus, it is important to keep the person in touch with their faith tradition. Inviting them to the church keeps them from slipping into complete social isolation, and allows them to still have a sense of belonging.
The Second Stage
As Alzheimer's disease progresses, memory loss becomes more severe. In the second stage, the Alzheimer's patient gets more disoriented to time and place. They may not be able to complete a sentence. Some patients become paranoid and suspicious of family members. To cover up their inability to remember, they accuse others of stealing. They may hallucinate. They may get their nights and days mixed up, or leave the house and not find their way home. They may even lose the ability to feed themselves and maintain good health care without supervision.
In this stage, the Alzheimer's patient and caregiver will rarely attend church. The caregiver is burdened with supervising their loved one's every action, 24 hours a day, seven days a week. It's at this stage of the disease that caregivers reach out for help. The stress of caring very often draws their own health down.
Caregivers find temporary relief by placing their loved one in an adult day care program, which gives them some free time two or three days a week. When it becomes too burdensome, they will have their loved one placed in a personal care home or long-term care nursing facility.
Even in stage two, the Alzheimer's patient should still be invited to the weekly worship service. Sometimes they stay for the whole worship service and sometimes they wander out, only to return later. The music center is very alive in their brains. They still can sing the first stanza of a familiar hymn and participate in praying the Lord's Prayer and confessing the Apostle's Creed. They still love to receive Holy Communion, especially if it was a regular event in their lives. Sometimes they paraphrase out loud words spoken in a sermon.
Some persons may even be able to learn new words or parts of the service. Repetition is helpful. In one instance, a pastor was giving private communion to an afflicted parishioner, when she recited the benediction to him as it is used in the LBW. However, in her home congregation, they were using the red hymnal that used the Victorian English for the Benediction. She had remembered the new words from repetition.
It is important for pastors to make monthly visits to the confused person, which will probably be the only contact the person has with the congregation. The person may not remember the visit or even the pastor's name. He or she will, however, remember the pastor's presence and get to know a friendly voice.
Sharing news from the congregation keeps the person in touch with the church. Using the Service for Private Communion in the Occasional Services book is helpful. Find out from the family what the person's favorite Scripture passages are. Reading them in your visits stimulates their memories. A favorite is Psalm 23, but each person may have their own favorite passage.
If the pastor feels comfortable in singing, he/she may try singing one verse of the patient's favorite hymn. Short, meaningful prayers are appreciated by the patient, as well as by family members who are present.
Pastors need to be responsive to the needs of caregivers as well. Most likely, the congregation won't see the caregivers in church because they will be too busy taking care of the needs of their loved one. To keep from getting stressed and burned out, to the point where their own health is jeopardized, they need to have respite from their caring role.
The church may be very helpful by providing companions who will sit with the Alzheimer's patient for two to three hours, once or twice a week, so that the caregiver can go shopping or find a place to relax for a few hours. It's difficult to find volunteers to give this kind of attention to Alzheimer's patients. With orientation and training, however, volunteers will feel more comfortable in offering their services.
Too often, it is assumed that adult children are available to give relief; however, adult children often find they cannot deal with their parent's confusion, and visit less and less. As a result, the lone caregiver, the spouse, takes on the full burden without relief.
So far, there is no cure for Alzheimer's disease, but scientists have made significant progress in understanding the cause of the disease. The church can help families taking care of persons with Alzheimer's disease by providing education about the disease and keeping the families of Alzheimer's patients informed on the latest research.
For example, a church can set up a series of educational events and invite guest speakers familiar with Alzheimer's disease to speak to members of the congregation that have family members with the disease. Resources for speakers include physicians with knowledge of the disease and its treatment, representatives from the local chapter of the National Alzheimer's Association, and other individuals who have cared for Alzheimer's patients.
This type of program provides not only useful information on finding help for the patient and the caregiver, but also reassures caregivers that they are not alone in dealing with the disease.
Another way to help caregivers is by setting up a support group at the church or connecting them to a group that has been established in the community. The local chapter of the National Alzheimer's Association can direct the church to a local community group, or help the church in starting one. It is helpful to do a survey in the congregation first to find which members may be interested and determine the type of information needed.
The Third Stage
The third stage of Alzheimer's disease is the most difficult stage for family and clergy. At this stage, most patients aren't verbally responsive, and are only able to speak on a limited basis. There is very little comprehension. They need complete health care, bathing, feeding, and toileting.
However, pastoral visits are still very important. Even though a person doesn't respond verbally, they may still be able to remember one or two words from their faith tradition. Again, reading a familiar psalm or praying is important to keep the person connected to God.
At this stage, they can't follow the private communion service, but there is still a way to provide a meaningful ministry.
In the Roman Catholic tradition, priests train lay persons as eucharistic ministers to deliver the "body and blood of Jesus Christ" to the sick in private homes, hospitals, personal care homes, and long term nursing care homes. Our Lutheran tradition underscores the concept of the "priesthood of all believers." Pastors should be training lay persons as eucharistic ministers to deliver the communion to members of the congregation who are unable to attend worship services or participate in traditional communion services.
Most of the time, those persons in the third stage are bedridden. They may be asleep during the visit. Gently awaken the person and say their name. Touching the person's arm to get attention is an effective method. Pastors, or lay eucharistic ministers, should tell the individual they have come to give them communion. They should then hold the communion wafer up for the person to see. Intinction should be used because the person is often incapable of taking a communion glass and drinking the wine.
Some pastors may not want to offer communion to persons who can't understand what is going on intellectually. However, they should realize they are offering God's grace to this individual. It is God's action and doesn't depend upon one's reasoning ability.
Most people, nevertheless, will still understand what is taking place. God keeps them connected to the body of Christ. It will be good to invite family members to participate with their loved one in receiving communion at this stage. Alert family members have a need to stay connected to God as well.
Some Alzheimer patients regress back to a fetal position in bed when they approach death. However, the majority of them die from other causes, such as heart disease, kidney failure, aspiration in the lung, or pneumonia.
The services for the "Anointing of the Sick" and the "Commendation of the Dying" are meaningful to the patients and to the patients' families at this stage.
When the patient dies, family members often feel relief and a sense of peace for the person. Later, in the grieving process, the family members may feel guilty for feeling relief. Pastors should touch upon these feelings in a sensitive way in the funeral homily. Let the family member know that it's okay to feel relief that their loved one has taken on the new resurrected body promised by God.
Providing a caring pastoral ministry to Alzheimer patients and their families makes a whole world of difference to them. It's like taking the blind man by the hand and leading him into the pool of water to receive his sight. It keeps the person suffering from Alzheimer's disease and their family connected to God.
Joseph W. Hager is a chaplain with Lutheran Services Northeast, Hazelton, Pennsylvania.
Further Reading on Alzheimer's Disease
1. Adams, Martha. Alzheimer's Disease: A Call to Courage For Caregivers (Abbey Press: St. Meinrad, IN, 1986).
2. Boggs, J. Robert, Jr. I'll Move Over — Story Of a Great Love, P.O. Box 122, Warsaw, Ind. 46581-6273.
3. Caring For the Caregiver, Parke-Davis Research Co. (Warner-Lambert Co., 1994).
4. Danforth, Art. Living With Alzheimer's: Ruth's Story (Prestige Press: Falls Church, VA., 1986).
5. Gruetzner, Howard. Alzheimer's: a Caregiver's Guide and Source Book, American Health Assistance Foundation (Rockville, Md.: John Wiley and Sons Press, 1992).
6. Mace, Nancy and Rabins, Peter. The 36 Hour Day, rev. ed., (Baltimore: John Hopkin's University Press, 1991).
7. Powell, Lenore and Courtice, Katie. Alzheimer's Disease: A Guide For Families (Reading, MA: Addison Wesley Pub. Co., 1986).
8. Reisberg, Barry. A Guide To Alzheimer's Disease: For Families, Spouses, and Friends (New York: The Free Press, 1981).
9. Zarit, S. et al. The Hidden Victims of Alzheimer's Disease: Families Under Stress (New York: University Press, 1985).