Submitted by Brenda Fountain, BSN, RN
Tags: Alzheimer’s caregiver dementia disease
As a nurse, I have always found it difficult and frustrating to understand the needs of a person with Alzheimer’s disease. Alzheimer’s is the most common type of dementia. It is a progressive degenerative brain disease first discovered in 1906 by Dr. Alois Alzheimer, a German physician. His autopsy of a patient’s brain indicated abnormal amyloid plaques and neurofibrillary tangles on the brain. His patient was a woman in her late 50’s who had regressed in her memory and abilities to childhood. The plaques and tangles are now the indications of Alzheimer’s disease, though study is ongoing regarding the cause of the plaques and tangles. As a nurse, using the medical model of disease and progression should be sufficient to begin to care for people with Alzheimer’s disease.
But it was as a daughter that I really began to understand Alzheimer’s. My mother became a stranger to herself. She didn’t recognize pictures of herself nor her reflection. It doesn’t seem possible, but I watched my mother slowly regress into infancy. I could do nothing to prevent it, so I threw myself into studying everything possible, hoping to understand, hoping to somehow ease my sorrow. The knowledge that I gained did nothing to ease that sorrow but it did help me in caring for and understanding my mother.
In this article, I hope to provide information on caring for a person with this disease through personal experiences and education. According to the Alzheimer’s Association, a 1993 national survey indicated that Alzheimer’s disease could be found in one in ten persons over 65, five of ten persons over 85 and that four million Americans had AD, 19 million Americans had a family member with AD, and 37 million Americans knew someone with Alzheimer’s disease. With the aging of our baby boomers, those numbers are going to escalate at a rate that will be draining the emotions and finances of the people of this country. Becoming more aware of Alzheimer’s and its treatment is a necessity not only for the medical world, but also for every person.
The article “A Trip Back in Time” by Christopher Johnson, PhD is an excellent guide to understanding the process of regression. Dr. Johnson is a professor at the Institute of Gerontology at the University of Louisiana at Monroe. His article provided the first step for me in defining the disease process. It helped me to understand the decline and the moments of clarity that sometimes occur. At age 74, my mother still knew who I was but when asked her age, she responded that she was 43 years old. She did not recognize her grandchildren. How could she, they were only infants or had not been born. But yet, further along in her regression, she suddenly asked if my son was out of the military yet. Dr. Johnson uses spiraling loops to indicate how there can be fluctuations in regression with AD. His model would be very helpful professionally and personally for any Alzheimer’s caregiver.
As with most diseases, there are stages to Alzheimer’s. Reisberg’s Seven Stages of Alzheimer’s Disease (also known as FAST-Functional Assessment Staging) is a very helpful tool that breaks down each stage into specific activities of daily living (ADLs). ADLs can still be accomplished by a person with Alzheimer’s disease dependent on their stage and dependent on our understanding of their stage. Understanding the person’s stage of illness is important to every aspect of their care. Early Stages 1-4 still allows decision-making. The person should be included in decisions that will eventually affect the end of their life. Excluding them isolates them and certainly contributes to early feelings of paranoia. It should be noted that Stage 1 is asymtomatic, which means everyone could have stage 1 Alzheimer’s disease.
While our mother was still cognizant of her reality (Stage 4), my sister and I talked with her about her choices. The move was easier for her and us because we were following her instructions. My mother lived alone until she was unable to perform daily activities (Stage 6c). My sister and I checked on her often and hired someone to help. We did eventually place her in the nursing home of her choice. What we did not fully understand at the time was that the placement should have been more thoroughly researched with her future needs in mind, as well as her present needs. My mother’s choice was a nursing home that was familiar to her and was located close to my sister. The home was pleasant and secure with a kind staff. My sister could see her everyday. I came on the weekends and called my mother every night as long as she could recognize the concept of the telephone. The problem occurred as my mother’s disease progressed. She began to wander into other residents’ rooms thinking that it was her room. She forcefully insisted that the person leave her room by grasping the lady’s already broken arm. Because the staff had not been trained for a true Alzheimer’s unit, they did not know how to handle this problem, nor did they have a dedicated Alzheimer’s unit. She was promptly admitted to a geriatric psychiatric facility.
After an extended hospital stay for medication management for our mother, my sister and I found an exceptional Alzheimer’s unit in a new nursing home. Our experience taught us to search for a small unit, where the residents appeared calm, clean, and happy. They had a ratio of 1 aide to 4 patients. With my mother, there were eight patients in the unit. My sister and I became very close to the aides, due to their exceptional caring for our mother and sometimes due to insults and injuries caused to them by our mother. The home was also closer in distance to me, which enabled my sister and I to effectively switch places in our mother’s care. The change was helpful to both of us. It gave my sister some distance from the problems and allowed assuagement of my guilt for not being close enough to help when needed.
In the later stages of the disease, the person with Alzheimer’s with a little guidance can still perform simple activities. My mother would look at her food tray but be unable to process where to start. By handing her the fork, she was then able to eat by herself. Everything that we do is a process of many very simple steps. Alzheimer’s denies the person the ability to break down those steps. If caregivers observe closely, they can determine where the process breaks down and assist the person with Alzheimer’s to retain as many skills as possible for as long as possible.
Behavior problems can occur for many reasons including medication, environment, over-stimulation, and disease progression. The effects of medication can be different for each person and should be reassessed by a physician often. A change in environment is very disturbing in an already strange world. Admission to a hospital or nursing home has to be extremely frightening. It is a whole new environment with a whole new set of strangers, which can set off the fight or flight response. These patients need to be close to the nurses’ station and they need reassurance that there is someone there that cares about them, stranger or not.
The staff or the family is most often the cause of over-stimulation. I am reminded of an incident at the geriatric psychiatric unit where my mother had been admitted for medication adjustment. My mother wandered behind the nurses’ desk. From my psychiatric rotation as a student nurse, I knew that going behind the nurses’ desk was not allowed. It is considered a threat to the nurses. Three aides tried to pull her back from the desk, instead of one person redirecting her. She could not understand what they were trying to do and in frustration, she swung her arms out to make them go away. It worked. Being 5’10”tall, her reach was rather far. For the longest moment in time, I stood there. I was puzzled to see the aides scatter away from my mother. The realization that they were afraid of my kind, beautiful mother was my undoing. For the first time in my life, I cried tears of silence. I could make no sound as the tears streamed down my face. The staff’s lack of understanding regarding Alzheimer’s disease was the cause of her behavior problem. Geriatric Psychiatric Units need to have more education regarding changing their behavior to prevent their patient’s “bad” behavior.
Family is often the major cause of behavior problems. Imagine having five or six strangers surrounding you, hugging you, telling you that you are their mother and grandmother. In your mind, you are 10 years old; therefore you cannot be anyone’s mother. “Who are these people and why are they lying? They just need to go away. Everyone thinks I’m stupid. Please, someone, make them go away! Please.” *
*An amalgam of my mother’s words.
It is very important that family does not come in mass when visiting someone with Alzheimer’s. My sister and I quickly learned that our mother could only deal with one of us at a time. As our mother forgot who we were, we would just tell her our names and that we were someone who loved her. Trying to orient her to us was worse than useless; it was hurtful to her. You cannot make someone remember you when they have regressed to a time prior to your existence. My sister and I could not hurt our mother by making her feel “stupid”. Therefore, we put aside our feelings and considered what was best for her. I make it sound easy, but it was incredibly difficult. We lost our mother, even though she was standing before us.
This past summer, through the University of Louisiana at Monroe, I attended a course in Scotland on dementia. It was conducted at the Iris Murdock Center for Dementia on the campus of Stirling University just outside Stirling, Scotland. The course focused on person-centered care for people with dementia. I prepared for the course by reading two excellent books regarding Alzheimer’s disease. The Person with Alzheimer’s Disease by Phyllis Braudy Harris focused on the perspective of the individual with the disease. This book gave me insight into my mother’s world. Everything that I had read previously presented the caregiver’s voice. Finally with the help of this book, I found my mother’s voice. The second book that I reviewed for the course was Rethinking Alzheimer’s Care by Sam Fazio, Dorothy Seman, and Jane Stansell. The first book allowed me into the world of the person with Alzheimer’s and the second book instructed me on how to care for this person within their world. Person-centered care would be a wonderful new slogan for nursing. It is more to the point than individualized care and reminds us specifically of the person receiving our care.
As to the disease causing behavior problems, I believe that it depends upon your perspective. Alzheimer’s eventually causes a person to wander, to forget, and to regress physically and emotionally. The behavior is only a major problem if you forget that it is disease-related.
If the person is wandering away from home, they will need to be kept safe. It may be as simple as placing an obstruction at the exits, painting the door the same color as the walls, or as complicated as placing them in a more secure environment. Roxanne Johnson, from Aging Consultants, Ltd. in Monroe, Louisiana, talked about design at the Dementia Course in Scotland. She discussed that environmental design can instigate behavior problems, but design can also be used as a method of preventing behavior problems.
Forgetting is not as much a problem to the person with Alzheimer’s as it is to the family. Shortly after moving into the nursing home, my mother called me into her bathroom to show me something funny. I could not imagine what could be funny in the bathroom. She pointed out that funny old lady (in the mirror) that played with her and mocked her every move. She giggled and laughed. With as much control as I could muster, I said yes that was funny and then excused myself to go smoke a cigarette. I had started back to smoking after having quit for six months. I think that I inhaled about five cigarettes in ten minutes as I paced the sidewalk and sobbed. Then I wiped my face, blew my nose, and plastered on a smile. I went back to my mother and told her how happy I was that she had found a friend.
In that bathroom, she had moments of happiness. I could not steal those moments from her. Regressing to earlier stages of development causes a myriad of problems with mobility, articulation, vision, body orientation, and all activities of daily living.
My mother died 4 years ago. I was with her the day before she died. I felt distressed that day because even singing her favorite hymns did not connect with her at all. Just before I left, she raised my left arm to her mouth. In those few seconds as she raised my arm, I wondered whether she would bite me, kiss me, lick me, spit on me, etc. It did not really matter. It was a connection, albeit a small one. She continued to lift my wrist to her mouth and then sucked on my watch. She died in her sleep that night. Four days later, the day of her funeral, my six-month-old grandson took my wrist to his mouth and sucked on my watch. The nurse in me recognized the level to which my mother had regressed. The daughter in me felt her presence in her great-grandson and was very grateful again for that connection. It felt as if my Mama was trying to tell me that she was OK now.
In a world of unfamiliarity where even the reflection in the mirror is a stranger, the person with Alzheimer’s needs someone to care. They need gentle direction and a loving touch from everyone they encounter to reassure them in a very strange world. It is a world that makes no sense. It is a world going backwards.
- Fazio, S., Seman, D., Stansell, J. 1999, Rethinking Alzheimer’s Care. Baltimore, Maryland.
Health Professions Press.
- Harris, Phyllis Braudy. 2002, The Person with Alzheimer’s Disease: Pathways to
Understanding the Experience. Baltimore and London: The John Hopkins University Press
- Johnson, Christopher., Johnson, Roxanne March/April 2000, Alzheimer’s disease as a “trip back in time”.
American Journal of Alzheimer’s Disease: Volume 15, Number 2
- Johnson, Roxanne. 2004, Speaker on Design and Dementia. New Approaches to Dementia
Summer School. University of Stirling; Stirling, Scotland.
- Reisberg, Barry. 1984. Functional Assessment Staging (FAST). Psychopharmacology Bulletin. 1988:24: 653-659.
Alzheimer’s Association. “Statistics.” 1996