Spiritual life still important to people suffering from Alzheimer’s disease

Time and again, James Ellor has asked the question: Does an Alzheimer’s patient have a soul? No one, he said, has ever said, “no.”
   
Still, clergy members and lay people sometimes seem stumped when called upon to offer spiritual sustenance to one of 4 million Americans living with Alzheimer’s disease.
   
Ellor, editor of the Journal of Religious Gerontology, said it doesn’t have to be that way.
   
While Alzheimer’s patients — particularly those who are in the late stages of the disease — may not be able to articulate their religious beliefs, many may still find meaning in singing favorite hymns, repeating Scripture verses or participating in a sacred ritual.
   
“Alzheimer’s patients want to use all five senses,” Ellor said. “The ritual liturgical communities have more, in effect, to offer.”
   
First described in 1906 by Dr. Alois Alzheimer, the disease is the leading cause of dementia, a condition that includes memory loss, disorientation, loss of language skills, impaired judgment and personality changes.
The loss of brain cells leads to a progressive failure of other systems in the body.
   
That means that in time, traditional pastoral care, where a cleric might have a conversation with a patient about his or her faith and any particular concerns, isn’t possible.
   
That’s the challenging part, said Taylor Morgan, a Southern Baptist chaplain and director of pastoral care at Mobile Infirmary Medical Center. “You do have to look at other avenues,” Morgan said.
   
Danny Watkins, chaplain at the University of Alabama at Birmingham’s University Hospital, said although some people with Alzheimer’s may not be able to communicate, connecting the people with their past — such as singing hymns they grew up with — can be effective forms of communication.
   
“In terms of ministry, the Lord’s Supper, putting your hands on their shoulders during prayer — these are aspects of the church they are familiar with,” said Watkins, a member of Riverchase Baptist Church, Birmingham. 
   
Cordell E. Simpson, chaplain at the University of Tennessee Medical Center in Knoxville, recalled a case in which a pastor who had been diagnosed with Alzheimer’s disease was brought to his church each Sunday.
   
Once in the pulpit, the pastor would preach a sermon; later in the service, members would direct him to give the benediction, and he would offer that blessing.
   
But while the pastor could preach a coherent and meaningful message, Simpson said, the man was unable to recognize his wife of more than 60 years.
   
Simpson acknowledged that it can be frustrating to work with patients who, for the most part, are unable to participate in a meaningful conversation and relate their needs.
   
In turn, he said, “you’ve got to be able to hear, see and understand what they’re not saying.”
   
In addition to recognizing those things that brought the patient meaning in the past, Simpson said it’s also important for caregivers to treat individuals as they would want to be treated.
   
“You want to be treated with dignity and respect even if you’re lying in the bed, sick and afflicted,” said Simpson, who discussed new ways to work with Alzheimer’s patients at a recent conference.
Watkins also stressed remembering the caregiver when ministering to Alzheimer’s patients.
   
“Caregivers have a lot of needs, too,” he said. “They’re facing feelings of guilt, restriction and helplessness.The pastor can help be a link between the family and others
who have gone through what the family is going through.”
   
But regardless of a patient’s illness, Mobile Infirmary’s Morgan said, “the needs are the same.”
   
“When we’re ill,” he said, “we can rely on our faith to sustain us. … I think that’s true of whoever the person may be.”
   
Bunnie Sutton, administrator and program director of the Alzheimer’s Foundation of the South in
Mobile, readily attests to the spiritual needs of those who suffer from the degenerative disease.
   
But too often, Sutton said, those needs are ignored. “People seem to be afraid of dementia patients,” Sutton said. “They don’t exactly know how to respond to them or to relate to them or what to say
to them. Therefore, they shy away from them.”
   
Sutton said she witnessed a dramatic difference between how clergy approached her brother, who
had cancer, and her mother, who suffered from Alzheimer’s disease for 17 years.
   
Many came to visit and pray with her brother, she said, but few tended to her mother’s spiritual needs.
“One of the things we say (is), ‘They’re losing their memories, but they’re not losing their souls.’ They still need to be ministered to,” Sutton said.
   
“They still need people to read the Bible to them. They love for someone to sing with them and to them. … We never know all that they’re relating to,” she said.
   
Alzheimer’s patients are often not the only ones to benefit from such care, Sutton and Ellor said.
   
When family members see someone with Alzheimer’s connecting to a familiar religious tradition — be it through prayer, song or the observance of a sacrament — their perceptions change, Ellor said.
   
It “makes a real difference to families,” he said, when they can see a loved one responding in a meaningful way.
After seeing such an incident, he indicated that relationships can improve. Seeing someone take time to minister to a family member with Alzheimer’s can help caregivers in other ways as well, Sutton said.
Many people find it hurtful, she said, when religious communities don’t offer spiritual care to those
who offered much to their congregations when they were well but appear to have been forgotten when Alzheimer’s disease takes its toll. “To just ignore them as spiritual beings on our part in society is just wrong,” Sutton said. (RNS)