banner-gifts of aging

 

t chapman

Introduction

During my Clinical Pastoral Education (CPE) residency, I engaged in a project doing a musical spirituality group, also referred to as a sing-a-long or Gospel Sing-A-Long, in an Alzheimer's Living Center in California. The procedure was to play a musical cassette recording while singing along with the patients. I would then pray with the entire group of resident participants and visit individually with each one who attended, sometimes praying additionally with specific patients. Projecting the words of the songs onto the walls enhanced all but the first two sessions. The terms resident and patient are used synonymously throughout this report. The names used in this report have been changed to protect patient privacy.

This project developed out of a desire to provide significant ministry to and enjoyment for the residents of the Alzheimer's Living Center. I invested a full CPE unit (eleven weeks) doing patient one-on-one visits and small, informal group meetings that occurred spontaneously in group activity rooms, hallways, and patient rooms. My intent during those eleven weeks was to build a rapport with the patients so they would be familiar and comfortable with me and I with them. I was, of course, also seeking to provide significant pastoral care throughout the period.

Significance of Music


As I began looking for a project for my advanced unit of CPE, I noticed how significant music seemed to be to these patients.

  • I sang to/with many individual patients and they were very pleased with these visits.

  • The patients seemed to always enjoy any musical activities offered by volunteers.

  • I noticed from patient charts, information gathered from patient visits and staff that a significant number of them could be characterized as being religious or having an interest in religious things, especially religious music.

  • Maridith Jannsen, a recreational therapist, spoke with me about her findings regarding the positive response of AD patients to music activities as reported in her master's thesis, "The effects of Recreational Programs on Alzheimer's Patients in Special Care Units."

Because of these factors, I decided to do a spirituality group sing-a-long using religious music.

Description of Project

Project Phases

The phases of this project included:

  • Becoming aware of AD and the needs of the residents
  • Selection and development of materials
  • Doing the sing-a-long worship sessions
  • Documenting and evaluating the responses of the residents
  • Conclusions

 

Spirituality Group Participant Selection

The process of selecting resident participants was as follows:

  1. I looked through the patient charts and identified all patients with an indication of religious interest.

  2. I asked the assisting staff to add to my list all residents who they had identified as having religious interests.

  3. I asked the staff to invite to the spirituality group all residents who had a special interest in music (though almost all respond favorably to music).

  4. I personally invited most of the residents with whom I had built some sort of pastoral relationship.

  5. The group sing-a-longs were open to all patients and many wandered in. We sought to make them feel as welcome as those who were specifically invited or wheeled in. Those who wandered in were specifically invited on subsequent sessions.

 

Description of Disease

Alzheimer's Disease (AD) is named after Alois Alzheimer (1864-1915), a German psychiatrist. He discovered, through autopsy, brain changes in a female patient who had suffered from memory loss, disorientation and progressive dementia. The autopsy revealed abnormal structures called neurotic plaques and neurofibrillary tangles (Curfman-Jannsen, 1990, p. 11).

According to Jannsen, there are three phases of Alzheimer's Disease and each phase has different characteristics.

The early stage is marked by disturbance in thought process,increased disorientation to time, place and events, a shortened attention span, increased irritability, and recent memory loss. This phase usually lasts anywhere from two to four years leading up to and including diagnosis.

The second stage or middle stage is characterized by the following: increased memory loss, shorter attention span, misidentification of people and objects, suspicion and paranoia, almost a complete loss of orientation to time and place, and gait disturbances. This stage can last anywhere from two to ten years. Frequently placement into nursing homes takes place during the latter part of the second stage.

The third stage, commonly called the final or terminal stage has the following characteristics: requires assistance with all daily living skills, speech impairment or complete speech loss, unable to recognize family, forgets own name, can't recognize self in mirror, and total disorientation to person, place, time, and objects. This final stage usually lasts one to three years. Many times these patients are either wheelchair bound or bed bound. (p. 12-14)

 

Preliminary Observations

I discovered from reading and from personal observation that patient interaction with these residents would need to be categorically different from my visits with the typical patient at the hospital where I also served. Whereas the visits with the typical non-Alzheimer's Disease patient involved aiding them in probing their feelings to help them make sense out of their life situation, the AD (Alzheimer's Disease) patient is physically unable to do this kind of mental processing. Furthermore, because of short-term memory impairment, (s)he is usually unable to remember any recent conversation.

Pastoral care, therefore, cannot build on cognitive input from one visit to the next. Instead, each visit or contact stands, largely, on it's own merit. For example, with a non-AD patient, one might draw on what was said in a previous visit as a way of working on what is currently being discussed. Yet, with the AD patient, previous discussions are unavailable as resources from which to draw because of short-term memory loss; they don't remember the previous discussion. Pastoral Care to the AD resident is consequently less cerebral, focusing more on their past memories than on their current life.

As I worked with these residents, I discovered a variation to this. Many of the patients had some, though limited, short-term memory. They did remember me--slightly--even though I visit them only two afternoons a week. Ben would typically say, "We've met before haven't we?" Two different times Richard said to others in my presence, "He's a really great guy. You listen to him," but would not quite remember who I was or why I was there. Each felt they knew me and had some sort of likeable relationship, but they had difficulty in knowing exactly what that was. I reminded them who I was, that we were friends, offered plenty of big smiles, warm handshakes, and shoulder hugs. These and other patients felt very good about themselves at such times and life seemed good to them.

Mike, a higher functioning resident who was a non-religious professional, attended every sing-a-long. He once said, "Are you going to sing again today?" when I engaged him in conversation. Yet, the next week he did not remember that he had ever heard the singing when I asked him if he was going to join us again.

These three examples demonstrate there is enough memory capability in some patients to build a relational base from which to do pastoral care. The basis is limited--they merely felt like they should know me; they felt good about their relationship to me--but it was more than I expected and I found these and many other patients engaging me in conversation every time they saw me. This was evidence to me that they received significant love and acceptance from my pastoral care.

My first and primary patient care goal was to provide comfort and encouragement to the residents I encountered. My plan was to do this through warm, cheerful interactions and plenty of friendly body language. I would invite residents to tell me of their families, early memories of where they lived, worked, went to church, and the like. The patients responded very favorably to my presence and often reported information about their past. Some residents could not remember their family members' names, where they had lived, etc., so conversation with them was more difficult to generate.

Music seemed to play a significant role at this point in many of the patients' lives. I had heard that Alfred, in his early years, had wanted to be a preacher but had spent his work years as a mail carrier and a devoted Christian. Therefore, the first time I visited with him I said, "God really loves you, Alfred. He's right here in this room with us." He immediately began singing in his native German the old hymn, "Nearer My God to Thee." I joined in, singing the same song softly in English as he wept in celebration of the truth experienced. Each time I visited, we sang and laughed and cried as the songs brought memories and emotions to his awareness; and I marveled how he connected with the reality of his spiritual past.

As I began the Gospel Sing-A-Long project, I expected discussions regarding religious concepts to be minimal because of the residents' lack of ability to express or even understand complex ideas. In practice, this worked out about as I expected. Many of the people were greatly encouraged by statements that God loves them and cares for them. I reiterated the key phrase of the song, "O how I love Jesus," and received in return expressions of comfort and delight like "Oh, yes, I do love him." But when I experimented with a longer, more complex statement, ("It is no secret what God can do: What He's done for others, He'll do for you.") not even the most evangelical residents responded with other than "yes," even though it was a very popular song from the late 40's to the early 60's in the evangelical music world. Predictably, when that same phrase was couched within its musical setting, it became very meaningful to the patients. Yet separated from the music, it appeared to be simply too complex for the AD patients to process.

 

Working with Alzheimer's Patients

Communicating with a person with a dementing illness, such as Alzheimer's Disease, can be a difficult and frustrating task. Often in early stages of a dementing illness, people have trouble finding words to express their thoughts, or may be unable to remember the meaning of simple words or phrases. These problems are usually minor inconveniences or frustrations. The later stages may be much more difficult with language skills quite impaired, resulting in nonsensical, garbled statements which are very difficult, if not impossible, to understand. (Alzheimer's Disease Education and Support Services)

As I worked with patients living with Alzheimer's, I tried to follow these suggestions (italicized suggestions taken from Alzheimer's Disease Education and Support Services' "Communicating with Patients Fact sheet"):

  • Think about how you are presenting yourself. I consistently tried to present a warm, cheerful demeanor. People with dementia are often extremely aware of non-verbal signs such as facial expression, body tension, and mood. On one occasion, I had had a busy "on call" the night before and had gotten little sleep. I arrived at the center weary and with a headache. As I got into the second or third song, I noticed the patients were not as responsive as they had been during previous sessions -- there was an absence of the usual big broad smiles, clapping, and singing along. This stimulated me to observe that I was not as cheerful and animated as usual because of how I felt. I immediately became more demonstrative and animated, and they perked up accordingly. I am sure this would be true of any audience, but persons with Alzheimer's, like little children, are not intentional about hiding their feelings so it was particularly evident. How I presented myself had a profound effect on the patients.

  • Use a non-demanding approach -- try humor, cajoling, cheerfulness. Humor or gentle teasing often helps caregivers through difficult moments. Mable saw me talking with four male residents in the hallway outside an activity room and approached the men sternly. Apparently thinking herself a farm owner, she demanded that the men leave because she could not afford to hire them that day. She approached three or four times with the same message while we continued to talk and laugh in the hallway. Eventually she suggested that I was the ringleader and needed to leave also. At this, two of the men became distressed and swore at her as she walked away, but not loud enough so she could hear. I spoke up in a cheerful voice: "Well, guys, she sure has us confused with someone else! None of us has been planning to work for her today, anyway. [And teasingly,] But Earl, if we all had overalls like that I could see how she might get us confused. You sure look like a good worker. Don't you think so, Richard? . . . Say, it's time for our Gospel Sing-A-Long. Let's go in now. You guys can help me get the room set up. I'll make sure you get a snack when we're through. I bet none of you guys have ever passed up that before." To have demanded that she stop harassing these men would have escalated her frustration and that of the men I was visiting with. Yet, this cheerful approach diffused their distress and allowed her fixation about our wanting to work for her to dissipate.

  • Try using touch to help convey your message. Some people shy away from being touched; but most find a gentle, carefully chosen touch reassuring. As we sang, Esther looked uninvolved and unengaged so I told her it was really special to have her with us and gave her a shoulder hug. When I pulled away, she reached back to give me a hug and kiss on the cheek. She was very much engaged after that. We had done about half the music program to that point and now her eyes began to sparkle as she started to sing and clap, something she had not previously done that day. When the music was completed, I always visited with each patient in attendance. With many, such as Lucille, I always gave a handshake and hug. Her body language indicated she felt loved and accepted, and her words were always full of praise to her loving God she had been singing to and about.

  • Begin conversations with orienting information. At first, I sometimes would not remember this and one resident asked after a short time of visiting, "Who are you?" On the other hand, as I developed the pattern of always introducing myself ("Hi, Earl, I'm Pastor Merv. How are you today?"), the residents became much more at ease in my presence. In beginning the sing-a-long, I introduced it by telling them we were going to sing some gospel songs together and they were free to sing and clap and enjoy themselves. Once I forgot to give them the orienting introduction and many looked a little bewildered at first. This simple instruction seemed to give them assurance and confidence. Of course, a few higher functioning patients would remember the event from prior weeks, but the vast majority did not remember having ever done it so repeating the instruction seemed very important.

  • Use simple language and sentences and speak slowly, enunciating individual words clearly. At first, I used my last name when introducing myself because I knew that many of the older generation would never have addressed a pastor by his first name. However, as I interacted with the residents I noticed them latching on to "Merv" a lot more readily than "Friberg." Additionally, for many of the patients "chaplain" is sufficient, but for those with lessened memory capabilities, "pastor" is a word much richer with associations and therefore much more understandable. (For a point of reference, it is helpful to note: For a person of this level of capacity, a caregiver might need to ask, "Do you need to pee?" instead of "Do you need to go to the bathroom?" This is because, as the disease progresses, a person regresses to his earliest language usage.)

  • Look directly at the person and make sure you have his or her attention before you speak. Be at eye level with the person, if possible. Harold usually was quite aphasic, speaking little and sitting with head bowed low most of the time. When he clapped and smiled with head held level during the sing-a-long, other staff and I were excited for him. This was stimulating to him. Afterwards, I walked up to him, the music now stopped, his head bowed low. Cheerfully I stated, "Harold, it was good to have you here today, clapping to the music." No response. I knelt down low so I was in his field of vision and repeated more slowly and with a bigger smile, "Harold, it was good to have you here today." This time, because he could see me and because I spoke more slowly, he raised his head a little and smiled. I added, "I really enjoyed seeing you clap along to the music with the others. That was really neat." He nodded affirmatively, a response we did not often get from him.

  • Give opportunities for involvement but be aware their ability to do even simple tasks may be impaired. Walter, a man who grew up on a farm, was standing by as I was setting up the equipment for the sing-a-long. I asked him if he would like to plug in the electric cord of the overhead projector. He took the end of the chord and looked at me questioningly. I pointed to the receptacle and he nodded that he knew what to do. As he tried unsuccessfully to figure out how to get the three-pronged plug to go into the receptacle, I gently twisted his hand so the plug went in. I smiled and affirmed, "These new fangled things sure are hard to figure out sometimes. I think we've got everything set now, Walter. Thanks. You can be seated right here for the church service." He contentedly took his place in the chair I suggested.

  • When a resident is fixated, try distraction therapy. Patients often get stuck thinking about a certain thing and cannot seem to get it out of their minds. Presenting a substitute issue or activity often distracts them from their fixation and relieves some of their own frustration, not to mention that of the caregiver. Patsy had been fixated, telling me three different times that various ones should not be doing what ever they were doing. I assured her they would be OK. The fourth time she came to me, I took a different ploy (C = Chaplain, P = Patsy):

C: "Patsy, How are you? My, you look good today. I think that is your color!

P: I don't think they should be doing that in here. They should go outside.

C: Oh, do you think so? You know, that is a great observation. I'm glad you noticed that. You are a very observant person, Patsy. Say, are you coming to the Gospel Sing-A-Long? I'd love to have you!

P: (Nodding and smiling after receiving the complement) I think I will.

She came for the first time and enjoyed herself, being completely oblivious to the concern that had distressed her earlier.

I was always "Pastor Bob" to Harry, who was fixated about a supposed flood that had his wife stranded on the other side of the river. He would wander around the facility asking everyone he ran into about the condition of his wife. People had been swept away in the flood and he was concerned that his wife was one. He was unconsolable.

I soon learned from staff that there had been a real flood many years ago, but his wife had died only six years ago and now he was alone. As Harry came to me again about his deep anguish regarding his wife and the flood, I took a different approach, extrapolating on what I knew of the story (H = Harry, C = Chaplain):

H: Pastor Bob, the flood. Nellie isn't here and hasn't been heard from. I'm worried for her, Pastor.

C: Harry, I've just heard good news! They have found your wife and she is ok.

H: How is she? Is she OK? Where is she?

C: Yes, Harry she is OK. She is on the other side of the river and has been worried sick about you but feels better hearing you are OK.

H: Can I see her now?

C: The river still is above flood stage and the bridge is washed out, but as soon as it is safe, she'll be able to come back across the river. It will be a few days, but she is with folks from the church and is okay. (Remembering the family reminded me that he and she often sang the old hymn "It is Well With My Soul.") She says to sing the hymn "It Is Well With My Soul," Harry. Remember: (I began to sing) "When peace like a river attendeth my way. . . ." That's her song for you, Harry. She is okay. She is okay and sends her love to you.

This relieved Harry for the afternoon. He confronted no one else except to tell them she was okay. But when I was back two days later he had forgotten the news and was again agonizing over his concern for his wife. A staff nurse nodded knowingly and apologetically to me when she saw he had cornered me with his same old story. I retold him the same story and sang the same hymn. He was consoled again. This time I met with the multidiscipline team and established a plan that all staff would tell the same story when he brought his concern to them. A couple of the staff even ventured to sing the same song to him. In very short time, he was at peace and never again brought up the story during my twice-weekly spiritual care visits over the next month.

 

Documentation of Patient Response to Gospel Sing-A-Long

The staff and I commonly referred to the Musical Spirituality Group as the Gospel Sing-A-Long. In addition to one-on-one resident visits the same day and one other day of the week, I held the sing-a-long once each week for five weeks as part of my CPE Project requirements and then for several additional weeks following.

The first three weeks were conducted without projecting the songs on the wall. The last six or seven weeks included the use of projected song words.

Documentation of patient responses was limited to attendance records and a few brief notes for all but the last session of the CPE Project. For that last session I created a Patient Response Documentation form to gain a more clinical documentation of patient responses.

The table below (See Table 1) records the number of patients who had various responses during that last session.

Clapping
3
Tapping to the rhythm
5
Smiling
16
Nodding to the rhythm
3
Tears
2
Praying
1
Praising God
4
Singing along
9
Whistling
1

Table 1: Patient Responses.

Twenty-six residents attended the session the day the response charting was done. The average attendance for the five weeks was 29-30. Although the response of the residents was a little less demonstrative on the day the forms were used, sufficient activity was recorded to give a fairly faithful picture of the responses of the residents to the sing-a-long.

The staff person recording the responses stated, "each and every one of the patients in attendance really enjoyed themselves." Comments about the various responses follow.

  • Clapping: Usually more than twice this number clapped during some of the songs. These people were typically smiling as well but not necessarily the same ones who sang.

  • Tapping to the rhythm of the music: These and the clappers seemed to especially enjoy the peppier, up-tempo songs.

  • Smiles: About half the group were typically full of smiles during the sessions. This is in stark contrast to the usual demeanor of the patient population, if one were to observe the facial expressions of the patients as they wander the halls or sit, waiting. This was evidence to me that these patients found joy in participating in this event.

  • Nodding to the rhythm: Again, this is an indication that the resident is engaged and responding to the music.

  • Tears: These were tears of joy as patients were celebrating the reality of the Christian message portrayed in the music. I observed about six different residents who were moved to tears over the five weeks. In each case, they were deeply religious people and expressed words of praise after the session was over. The tears usually if not always came during older, slower songs such as "The Old Rugged Cross", "In The Garden", and "Just A Closer Walk With Thee."

  • Praying: Only one was observed praying on "observation day," but about five or six different persons were observed praying over the five week period. Both men and women were observed praying. Many of the pray-ers were people with evangelical backgrounds, but certainly not every one of them. They were seen praying during and between songs.

  • Praising God: There were typically four to eight persons who were seen expressing praise to God during the singing. Typical expressions were "Praise God," "Praise you, Jesus," "Jesus, Jesus, Jesus," "Thank you, Jesus," "Yes, Jesus," and "Hallelujah." These expressions were never much more than a whisper and were often observed more through lip reading than through audibly hearing them over the music. (Having led this kind of music in front of worshipping congregations for a quarter of a century, my being capable of lip reading those common phrases is not unusual.) This is very representative of evangelical worship patterns, especially of the generation of these residents.

  • Singing: I was surprised at how few residents actually sang along--typically slightly over one third. Before the overhead transparencies were used, even less were able to sing along. Mike, a higher functioning patient was very eager for me to get the words projected. After each of the first two sing-a-longs he said, "the singing was really great but I don't know the songs." After I projected the words on the wall, I spoke with him (C = Chaplain, M = Mike):

C: I guess those words on the wall helped you quite a bit since you didn't know very many of these songs. Is that right, Mike?

M: Your use of words isn't very accurate. I didn't know any. Well, hardly, any way. So, yes, they really helped.

  • Whistling: One resident frequently whistled while walking around the facility so I invited him to come in and whistle along with the music. He enjoyed himself immensely as he did.

Patient observations made on days prior to "observation day":

  • Walter, an Assemblies of God man, was observed speaking in tongues during some of the songs. Though this is not a part of my religious tradition, I knew it signified he really connected spiritually. His heart was worshipping and his inner spirit was connecting with the Spirit of God. Tears flowed down his cheeks and his face was aglow with joy. Afterwards he thanked and thanked me as a parishioner would thank his pastor after an especially moving worship service.

  • Three or four times Anna, a cute little old lady, sat in her wheel chair handling her handkerchief, praising and blessing God. At one point, she raised her hand in witness to the reality of the truth being sung.

  • Alfred, visibly unmoved by the faster paced songs and those songs unfamiliar to him, was moved to tears of joy and singing when some of the oldest hymns were sung. On one song, he sang along in German.

  • Ben had the most fun. He sang boisterously, projecting loudly and beaming with joy as he clapped along. The projection of words on the wall helped him immeasurably as he knew the songs but could not quite remember them.

  • A second gentleman named Walter also thoroughly enjoyed the music and benefited greatly from being able to see the words. This is the church music he sang three times a week (Sunday AM, Sunday PM, and Wednesday PM) all his life so he felt like he was back to his spiritual roots and thanked me profusely each time we had the sing-a-long.


Dance Music and the Gospel Sing-A-Long

Many evangelicals, especially in the first half of the 20th century, believed dancing to be a sinful, worldly activity that invites temptation towards immorality. Some of the residents spent their entire lives believing that and would never engage in dancing or even be in a dance hall. It is not appropriate here to judge that belief system. Rather, it is our task to address how and why the Musical Spirituality Group worked.

When these evangelical residents were encouraged to participate in dance music activities, the assumption of the staff was that the activity would be good socialization for them. Jannsen (1990) rightly observes, "Music and dance can encourage socialization as well as self-expression" (p. 40). Yet, what if a patient sees dance as antithetical to his/her belief system? Then the encouragement to participate could cause confusion, frustration, stress, anxiety, anger, or other negative responses. Many times residents no longer have the mental or physical capacity to express feelings and beliefs as complex as this. If that is so and if the patient is asked to participate, great inner turmoil could result. Once I was standing with Walter, close to where the dancing was in progress. I knew of his religious tradition against dancing but had just heard a staff person explain the socialization goals to the family of a prospective patient so I asked Walter if he wanted to participate in the dance. He, perceiving me to be his pastor from somewhere in his remote past, jerked his head back and he looked startled and perplexed as if to say, "Pastor, what on earth are you asking? Of course I don't want to dance!" I changed the topic to distract him and relieve the anxiety and/or confusion this was causing him. Because of his disease, when I changed the subject he immediately forgot the incident.

We can conclude from this example that the introduction of dance into this patient's schedule would not meet the goal of providing a comfortable, anxiety free or anxiety reducing environment; in fact, when I did introduce the subject, it worked directly counterproductive to those goals.

With another man named Walter, the situation was similar, although he still had his mental abilities to know for certain he did not believe in dancing. (C = Chaplain, W = Walter2):

C: Walter, do you want to go into the activity room and listen to the music as they dance?

W: Naa, I wouldn't want to do that. You know I don't believe in that!

C: Does it bother you that they dance right here?

W: No, as long as they don't ask me to.

Again, this resident would certainly not reap the intended benefit of the socialization goals if he were strongly encouraged to participate in the dance activities.

I am not in any way intending to suggest or imply that a dance program is less than beneficial to participating patients. My observation was that increased interactive stimulation and socialization seemed to be occurring the few times I saw the dance activity in progress.

The sole rationale for discussing the dance is to point out that some (perhaps many) Alzheimer's patients may react negatively instead of positively to the dance activity because of their religious backgrounds and beliefs. Additionally, if either of these or other patients decline to dance for these reasons, they have stood up for their own sense of spirituality--a very admirable thing that ought to be honored and respected.

Conversely, for many of the religious residents (the evangelical "believer," for instance) it is reminiscent therapy to be exposed to the gospel sing-a-long. Their religious belief was not just one compartmentalized aspect of their life, it was the essence of their life. Since religious music was a very primary avenue of expressing their faith, to bring back this music is to bring them back to the central core of their being, thereby evoking praise, joy, celebration, awe and connection to God, others and their personal inner self.


Conclusion

Music can play an important part in the life of a patient with Alzheimer's Disease. It utilizes the remote memory in such a way to bring the person back in touch with his past. Religious music brings the religious person back to the spiritual roots that made him/her who she/he was.

The Gospel Sing-A-Long or Musical Spirituality Group seemed to accomplish that for many of the residents. The smiles, clapping and other methods of responding to the rhythms might have had no spiritual significance--or it might have had plenty. But the praying, praising, and tears of joy were expressions of patients with dementia who, through music, were reconnected to the reality of their spiritual relationship with God. For those residents alone, the project was worth the investment.

The development of the overhead transparencies was a voluminous task but proved to be helpful for many more of the residents than I anticipated; i.e., more of them were still capable of reading than I anticipated. Each one who could read obviously benefited from the addition of projected words (for what is read and heard is more easily comprehended than that which is only heard).

 

Author

Mervyn Friberg, M.Div., B.C.C., is a Chaplain at Legacy Emanuel Hospital in Portland, Oregon.

 

Copyright © 2002, Wayne E. Oates Institute. All rights reserved.