The fourth major theme contained student’s reflections regarding the illness. There were 124 references in 64 sources to this theme. Sub-themes or child nodes were coded as 4a) Recognizing mentor’s symptoms (71 references in 47 sources); 4b)
Expressing clinical concern/opinion (28 references in 20 sources); and 4c) Expressing curiosity about disease symptoms (25 references in 13 sources). What follows are definitions and representative quotes:
4a: Recognizing Mentor’s Symptoms
There were several references of students’ observations regarding a variety of cognitive and behavioral symptoms, possibly partially explained by the journal structure, which requested a ‘description of mentor’s mood and behavior’. It is also conceivable that being directed to provide this data allowed the student to pay careful attention to mood and behavior in a way that they may not have otherwise if not asked directly. The
result allowed the researcher to ascertain the students’ awareness and understanding of their mentor’s symptoms.
While the students received a lecture on dementia as part of their orientation to the buddy program, the relationship and interaction gave them an opportunity to
understand how their mentor experiences the symptoms and lives with the illness. At the beginning of the program year, the PI described the different symptoms they may see in their mentor and that not all dementias present with memory loss in the early stages. For example, one student observed in the later part of the year: “I became again more
cognizant of the extent of his disease and how it was affecting more than just his memory” (701_2012.3.12). Additionally, students were informed that, while
Alzheimer’s disease is the most common dementia in older adults, it is not the only form of dementia.
The students made many observations of symptoms in their journal entries. As shown in Table 5, there were 71 references to the theme ‘recognizing mentor’s
symptoms’ in 47 journals or 44% of the sample. Students would also often bring observations of the symptoms they were seeing in their mentor along with questions regarding the disease to the monthly student process meetings. Depending on their interest, didactic educational lectures were provided at these meetings by clinical faculty (neurology and neuropsychology) and students were given the opportunity to share their experiences with their mentors among each other. The following entries reflect this theme and are separated by the observed symptom. Table 7 contains salient quotes regarding the students’ observations of their mentors’ memory loss.
Table 7. Recognizing Mentor’s Symptoms: Memory Loss
MEMORY
One student during the middle of the year described her observations:
“I definitely noticed that (my mentor’s) memory loss might be getting worse. She was more repetitive with her stories than usual.” (602_2011.2.15)
And the following week she observed:
“She forgot that we had scheduled to meet, so when I got to her apartment, she was not there. I asked the front desk and they found out that she was in the activity room.” (602_2011.2.22)
Later in the year this same student continues to observe:
“I keep noticing that (my mentor) tends to repeat the same stories every time that I visit”. (602_2011.4.27)
Another student remarked early in the year the difference between short and long term memory abilities in his mentor.
“I did notice some short-term memory issues in (my mentor), for example, she could not remember my name or where I had gone to college throughout the entire visit. She also repeated two stories she had told me. Overall it seemed that (my mentor) had more trouble remembering very recent things we had done or talked about. However, (my mentor) could remember more details about her past, the city, and her neighborhood.” (503_2009.11.22)
This student observed her mentor’s difficulty remembering her or the reason for their meeting, in addition to his symptoms of language and memory and how he was coping with them:
“He had to be reminded a few times who I was and why we were meeting. At times he would lose his train of thought or have trouble coming up with a word that he wanted to use, but then he would laugh at himself and take the time to come up with the word or idea.” (605_2010.11.29)
Early in the relationship, this student makes the following observations about his mentor’s memory and an expression of concern regarding his mentor’s memory for the time they are spending together:
“Throughout our conversation I began to notice some signs of memory loss. For example, it took (my mentor) a little while to remember her buddy from last year. This made me wonder how much (my mentor) will be able to remember about me after this year. Also, there were a couple of instances where she asked me a question I had already answered.” (601_2010.11.9)
Later in the year this same student remarked on what she observed as progression from previous interactions:
“I noticed during this visit that (my mentor) had a few more memory problems than she usually does. For example, she kept forgetting whether or not she had ordered soup and changing her mind about whether or not she wanted it, so she ended up confusing the waiter a little bit.” (601_2011.4.5)
Another student noted the short-term memory loss in this way:
“Had a couple of occasions where we would talk for a good 30-40 minutes and then the next time we would talk I would have the same 30-40 minute conversation. (606_2011.1)
Later he and his mentor’s wife went to a play where his mentor was taking tickets and he observed his mentor struggling:
“He had some trouble with his duties: his hands were shaking so badly that he took some time to tear the tickets. Then he would forget which part to give to people. Then he would forget where to put the ticket stub that he kept. Not that this happened for every person, but every now and again. (His wife) asked if I could help him out, but when I offered to help he was pretty firm about not needing help.” (606_2011.1)
Another student described his observations of his short-term memory loss as such:
“It has become much worse, and is starting to manifest in more and more. For instance, he asked me 4 times if I would like mayo with my sandwich. He also went through all the motions of putting his outside clothes on (we wanted to go for a walk because it was a warm day), but he kept asking what the weather was like. Then when he got his shoes on, he sat down on the couch and took them off, totally forgetting that we were going for a walk. Instead, we sat inside and chatted some more.” (701_2012.3.12)
The preceding quotes are representative of students’ recognition of their mentor’s
memory loss, how it is affecting their lives, and how they are coping with it (with humor in some or a lack of awareness in others). In some instances, the student remarked on the effects of repetitive questions and forgetfulness on their conversation and interaction. Compared to other symptoms, memory loss is the most frequent symptom observed by the students. This is not surprising, due to the fact that the majority of the mentors had a diagnosis of Alzheimer’s type dementia, characterized primarily by early deficits in short term memory.
Other symptoms observed by students were changes in visuospatial ability reflected in the following excerpt (see Table 8):
Table 8. Recognizing Mentor’s Symptoms: Visuospatial Ability