A qualitative study that explored how people with AD use spirituality as a coping mechanism was conducted in a central Arkansas metropolitan area using a sample of 15 participants (8 women, 7 men) with AD who were living at home. These participants’ Mini-Mental State Examination (MMSE) (Folstein, Folstein, & McHugh, 1975) scores ranged from 21 to 26, indicating early-stage AD. The experience of conducting a qualitative study of participants with early-stage AD was the inspiration for this article.
Gaining Consent or Assent
Research services at the university’s institutional review board offered excellent resources for developing the informed consent for this vulnerable population. However, locating capacity assessment tools required a literature review. The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) (Applebaum & Grisso, 2001) has high sensitivity and specificity with dementia residents who have a MMSE score >16 (Karlawish, Casarett, & James, 2002); thus, it was chosen for the study. This tool provided a format to quantify potential participants’ understanding of the research consent and was easily customized to reflect the study’s consent form. The assessment tool, although straightforward, was lengthy and took approximately 30 minutes to administer. However, the additional time provided opportunity to establish rapport with the participants and observe their communication skills.
A family representative was requested to be present at the enrollment meeting either to sign as a witness if the participant had capacity to consent or to provide consent if the participant did not have capacity to consent. In the latter case, it was important to have a third person, such as a research assistant, present to witness the signature. Half of the participants in the study had capacity to sign the research consent. Participant consent or assent was confirmed before each interview session as recommended by the Alzheimer’s Association (2004).
For some, AD commonly increases irritability in the afternoon or evening, known as sundowning. It may also disrupt sleep patterns, resulting in decreased and fluctuating awareness in the morning. Therefore, to optimize the interview, it is prudent to consider what time of day a participant is usually the most alert.
In this study, both the participants and their caregivers were keenly aware of this. They wanted the interviews to be successful and asked to schedule the interviews accordingly. Seven participants wanted morning interviews, and 8 requested interviews in the early afternoon.
Confronting Communication Challenges
Acquiring knowledge from the literature about AD’s effects on communication is helpful, but the researcher must also be open minded and acknowledge that the effects of AD will be unique for each individual (Bourgeois, 2002; Davis, 2005). Moreover, the researcher must be flexible to respond to the unpredictability of AD’s effects.
In this study, all interviews were conducted in the participants’ homes. Before starting each interview, approximately 15 minutes was spent engaging in general conversation with the participant to build rapport. This also offered an opportunity to assess each participant’s broad cognitive processing, communication ability, and general mood. For example, 3 participants were alert and responded well to the questions at their first interviews. A week later at the second visits, they did not remember the researcher (L.B.) and were slower to respond to questions.
An effective strategy to confront communication challenges is to restructure questions that may be too abstract for the participant to comprehend. The participants provided cues when they needed a more concrete question. For example, one participant in the study simply replied, “I don’t know exactly how to answer that. I don’t know. That’s hard to say.” Other participant cues were blank looks, participant-initiated changes of topic, or long pauses.
Although there was a preexisting awareness that some participants might respond slowly to questions, the long pauses between the question and the participant’s reply were uncomfortable. There was a tendency to want to lead the response by suggesting answers. However, it is important to allow the participant ample time to answer, thus respecting their dignity. When the pause did not resolve and the participants seemed uncomfortable, reassurance was offered, as suggested by Bourgeois (2002). For example, the interviewer would say, “That’s alright—what can you tell me about...?”, then the conversation resumed. In addition, a few participants requested reassurance of their memory of an event from their caregiver (e.g., “I see my children about every weekend—is that right?”).
Some participants responded to the interview question with an unrelated topic. For example, one participant was asked, “What helps you remember those appointments?” She replied, “My closet is such a mess. That is one thing I’m going to start in the morning, cleaning out the closet. Since I lost weight, there is a lot of stuff I can’t wear. I lost 98 pounds! I worked so hard at doing it.” It was important to allow her to lead the conversation, which revealed a new, meaningful topic of her accomplishment overcoming health problems.
Reminiscence is another valuable interview strategy that can prompt participants’ memories during the interview and elicit information about a person’s history. As the participants in this study reminisced, they spoke eagerly with a stronger, clearer voice and a brighter affect. However, a person with AD may keep repeating the same story line, which occurred with a majority of this study’s interviews. When this happens, the researcher should validate the participant’s experience (Davis, 2005) and then gently redirect the conversation to other pertinent study topics. For example, one woman repeated a story about her family summer home five times within a 45-minute dialogue. This experience was obviously very meaningful to her. The interview was unable to move forward until that important experience to her was validated. The response provided to the woman was, “That was a wonderful time for you. Thank you for sharing that with me. Can you tell me about...?”.
A final issue of concern is an ethical responsibility to minimize risks to the participants when conducting research. In this population, it is important to observe participants’ nonverbal signs of fatigue or anxiety during the interview (Moore & Hollett, 2003). When this occurs, the researcher can offer the participant a choice of continuing or stopping the interview.
In this study, the subtle diminishing volume of 2 participants’ voices was observed and recognized as a sign of fatigue. Observations interpreted as anxiety were the repetitive rolling of a paper by one man and the constant shifting of weight by a woman. These 4 participants chose to continue their interviews. Another participant was tearful during portions of the interview but chose to continue. He offered this explanation:
I feel better about it inside, I guess. Being able to talk with you has helped me a whole lot. I think you have to get outside the family once in a while just to let yourself go and because you worry about yourself and you really don’t want your family to know about it because it’s sad.
The participants were asked one last question: “How do you feel about being in this study?” They all stated that they enjoyed taking part in research and that it gave them a purpose, as exemplified by the following statements: “If anything I say can help others, then it’s a good thing,” “I still have a useful place, in my mind. I can still make people feel good,” and “I just hope it has given you something to work with.” These statements highlighted the importance of conducting qualitative research with those living with AD.