People with dementia need continuing access to their faith. However, sermons and other cognition-based methods of ministry are unlikely to help people with dementia to remember their spiritual background or to experience worship anew. Multi-sensory methods help this population remember and feel God's love for them. The multi-sensory book, Remembering The Life Of Jesus, was developed by Dr. Diana Walters to bring ministry to people with dementia and other cognitive deficits in a way that is meaningful to them.
Her approach was validated by careful research. Women with dementia displayed pleasure (smiles or laughter) and alertness (as indicated by eye contact with the presenter or to the materials) five times as long when receiving a visit that used the multi-sensory book than they did during a traditional, didactic, “talking only” Bible lesson that offered the same topical content. People with dementia often are confused by "words only" ministry. They deserve much better.
This research detected other meaningful moments that were not as measurable. Observers frequently noted that the person with dementia appeared to be touched spiritually during multi-sensory lessons. There were tears when a person with dementia spontaneously recalled a Bible verse while she touched lambskin. There was a look of awe as one elderly woman, who had become extremely fearful, read the words "Jesus is with you when you are afraid." There was often a look of peace as the participants' gazed upon the picture of Jesus. The words "He was beautiful" were often murmured. Evidence of spiritual connection as clear as this did not occur during every session, but it occurred often. It was evident that the multi-sensory book was an effective tool in assisting people with dementia to experience their faith.
This research--the development of the book and evidence of how well it works--was done as part of Diana's study at Oxford Graduate School, Dayton, TN. It is a school where adults who are employed full time create answers to social problems, such as the problem that the aging are rarely given opportunity to connect with God in a way that is meaningful to them.
Individuals and church groups who minister to the elderly are sometimes uncertain about how to approach individuals with Alzheimer’s disease or other dementias. Remembering The Life Of Jesus is a tool that can give a pastoral visitor immediate confidence. The book is a guide that opens up the possibility of a spiritual connection for the person with Alzheimer’s disease or other dementias. First of all, though, some general information about dementia will be helpful to the pastoral worker. The following information gives guidance in ministering to people with dementia.
What Are Dementia And Alzheimer’s Disease?
Dementia is the umbrella term for a set of symptoms related to a decline in thinking skills. This decline is caused by the gradual loss of functioning of brain cells. Alzheimer’s disease is the leading cause of dementia, but dementia can be caused by other conditions such as a series of strokes or Parkinson’s disease.
Our general population is aging. According to the Alzheimer’s Association, 10% of people over age 65 and up to half of those over 85 will suffer some form of dementia. Thus, if your church has a ministry to nursing homes or assisted living facilities, quite a few of the people you visit will likely be in some stage of dementia. Even if your church does not have an outreach to nursing homes, many members of your congregation will have dementia at some point or will deal with a parent, sibling, or friend with the disease. Spiritual support is important to both the afflicted and the people who care about the afflicted.
What Is It Like To Have Dementia?
In the early stage of dementia, people with the disease may not remember what happened yesterday—or even half an hour ago because recent memory is impaired. They may forget the names of people who should be familiar to them. It will be increasingly difficult for them to follow conversations, so they may become quieter. They often attempt to hide their confusion and their forgetfulness because they are embarrassed. Sometimes they have a change in personality as their confusion makes them angry or tearful.
In the second stage of dementia, memory loss worsens. They may have something to say, but cannot find the words to say it. Or the words may come out in a jumble that cannot be understood by others even though they know what they want to impart. The person with dementia may not know where they are or what season it is. They may get lost just walking around the block. They may also become paranoid and suspicious of people—they will often misplace items and accuse others of taking them.
In this stage of dementia they often become disoriented, have trouble learning new information, and may forget how to do the things they have done for many years—such as drive a car, cook a meal or, eventually, even how to feed themselves.
In the last stage of dementia, patients speak very little and have little comprehension of what others say. They need to be bathed, fed, and toileted. Near the end, they will be bedridden and, for the most part, unresponsive. However, the comfort of someone’s presence and the sound of music may be meaningful even at the end. Traditional hymns will often continue to reach through the darkness to the person dying of dementia.
As mentioned, people with dementia often become fearful, anxious, or angry. Imagine yourself in a foreign country where you do not speak the language, don’t know your way around, and you are surrounded by unfamiliar faces. Imagine that you know there is something wrong with you, but you cannot communicate to anyone that you are in trouble. Wouldn’t you be anxious or afraid—and perhaps even angry that no one will help you?
Early memories are usually retained long into the disease process. If the person has a religious background, reminders of spiritual beginnings can give them a sense of comfort and peace and help them feel loved. If you assist them to use all their senses—sight, sound, touch, and smell—spiritual memories will often be awakened. When you help a person feel God’s presence, even for only a moment, you have made a difference in his or her quality of life.
Do People With Dementia Benefit From Spiritual Care?
Ask yourself this: If you forgot God’s promises, would you not want someone to help you remember them? If you needed reminders of the Lord’s love and grace, would you not want someone to shine a light into the darkness of the disease and reveal God’s divine presence? Ministry to those with dementia is like a beacon pointing the way through the darkness to God’s love.
People with dementia may forget your visit fifteen minutes after you have left. They may not even remember that you talked with them about Jesus’ love. However, based on biblical promises, we can be confident they have a greater sense of peace or may be less afraid as a result of their renewal of relationship with their Lord. They will not be able to explain what they feel, but research has shown that ministry to people with dementia increases their sense of well-being.
What Do You Need To Know When Ministering
To People With Dementia?
There are many helpful hints to having an effective visit with someone with dementia. Let’s begin with the introduction. Each time you visit the person, introduce yourself and explain why you are there. Call them by name. Don’t ask if they remember you—even if you’ve been coming for years. They might remember the feeling of being with someone nice, but they probably will not remember your name or face, especially in the mid-to-late stages of the disease. They may become upset or embarrassed if you put them on the spot with “you remember me, don’t you?” If they do remember, they’ll let you know.
Speak distinctly and not too rapidly. Be aware of possible hearing loss and try to adjust the volume of your voice accordingly. Although they may seem child-like in many ways, people with dementia are usually aware that they are adults and they need to be treated as such. Talking down to them or using terms such as “baby” or “sweetie” is demeaning no matter what their stage of dementia. They may have a disease that has taken much of their memory, but they have been an employee, parent, sibling, and friend. They’ve paid bills, worried about their families, worked in the yard, gone shopping—just as you have. They don’t need to be babied, they need to be respected.
Avoid using too many pronouns—they may get lost in the “he” and “she’s.” It’s better to overdo first names or say “the pastor” or “that lady in red” and so on to identify people rather than using too many confusing pronouns.
Smile and look friendly. Humor is helpful, and it is as beneficial for them to laugh as it is for us. Touch is frequently welcome, but don’t surprise them with a sudden touch, or by coming up from behind them. Look for cues that they want to shake hands or have their arm patted or need a hug. Above all, the visit should be upbeat and positive. They will receive no benefit from a “fire and brimstone” message when they suffer from this illness.
Even if you are upset or in a bad mood, be aware that people with dementia are often sensitive to the mood around them. If they don’t understand the reason behind an uncomfortable atmosphere, they may still be affected by it. They may become agitated, fearful, or sad if the people around them are feeling angry or upset.
Thank them for the visit. Ask if you can come another time. Help them feel accepted and cared about by your presence.
Finally, never take it personally if the person with dementia is rude or walks away or even becomes angry during a visit. We cannot know what thoughts, memories, or fears enter into the mind of the person with dementia. They often cannot explain that they are in pain, are hot or cold, or need to go to the bathroom. If they display agitation or anger, simply stop what you are doing, and speak in a soothing tone of voice. Try visiting them later or on another day.
Using The Book Remembering The Life Of Jesus
You will notice the extra-large print in the book. Even when the person with dementia has excellent eyesight, the large, bold print is less confusing and easier for them to interpret. Short sentences and the use of few pronouns also help them follow the ideas in the text and in conversation.
Many of the pictures in the book are familiar to older people. As older people usually remember the King James Bible verses best, they were used in Remembering The Life Of Jesus.
After chatting for a few minutes to build rapport, display the book. Tell them you’ve come to share a Bible lesson with them. Allow them time to look at the face of Jesus on the cover and comment if they desire. You might ask them if they would like to read the pages or if they would like you to read to them. Encourage the participant to touch the items on the pages by touching them first and remarking on the texture. They may have a problem with depth perception and not realize that there are objects to be touched.
You could say “this may be familiar to you” when you come to some of the verses or pictures. Or you might comment: “We’ve heard the story of Jesus’ birth our whole lives, but it’s important enough to repeat, isn’t it?” Don’t put them on the spot, however, by asking them “Do you remember this?” At times, the participant may read verses in unison with you. For that reason, do not rush through the reading, but allow the participant to set the pace.
Above all, remember that the book is merely a guide. The book may assist the person with dementia access his or her spirituality. It may merely help him recall precious childhood moments. (The picture of Jesus with the sheep led one gentleman to tell me about raising sheep and pigs as a boy.) However the person responds, your presence will be a blessing to him or her, and it may be the most meaningful visit of the week.
Do not be concerned that persons with dementia may become bored using the same book week after week. Although you may prefer alternating with other material (other Touching Grace books will be available in the future), those with dementia will usually not remember the book or if they do, they are often comforted with things that are familiar.
Diana L. Walters, DPhil