Living a Daily Life With Self-Awareness Among Older Adults With Mild Cognitive Impairment

Research Design

The current qualitative study drew on the grounded theory work of Corbin and Strauss (2008, 2015) to explain how older adults with MCI manage daily life after diagnosis. Research was conducted through theoretical sampling methods and in-depth interviews.

Sampling

The researcher (M.C.) contacted participants with cooperation from the head of a dementia support center located in two districts of Seoul, South Korea. The criteria for selection were older adults with MCI age ≥65 who had been diagnosed with MCI at the dementia support center <1 year before date of data collection as the most current diagnosis. Because MCI can revert to regular cognition or progress to dementia within 1 year, the period after the last diagnosis was made was limited to 1 year. Twenty participants were recruited through a theoretical sampling method based on family members' experiences with dementia and whether participants were supported by their family members. Researchers collected data until theoretical saturation was reached (i.e., when no new concepts were derived from additional interviews).

Participants were approximately 75 years old (range = 68 to 87 years). Participants included 12 men and eight women, and the average time passed since the first MCI diagnosis was 8 months. As for educational background, one participant was uneducated, five graduated from elementary school, nine graduated from high school, and five graduated from college. Six participants lived alone, and 14 lived with others. Among them, 13 participants lived with their spouse, and one lived with his/her mother. All participants resided in Seoul, South Korea. Two participants' fathers had dementia.

Data Collection

Data were collected through face-to-face interviews and field notes from August 2015 to September 2017. After obtaining approval to collect data from the dementia support center, the researcher met only those who volunteered to participate through a recruitment notice in the counseling room of the support center or at participants' homes. The researcher explained the purpose of the study, interview method, and recording process, and received written consent from participants. At the beginning of each interview, the researcher began by talking about the weather or the participant's family to help create a relaxing atmosphere.

The interview questions for open coding included, “How did you feel when you heard about your MCI from your doctor for the first time?” and “Is there anything that has particularly changed in your life since the diagnosis?” The interview items for axial coding after completion of the first analysis included, “What had the most important effect on your acceptance of MCI?” and “If you have changed some things you had been doing previously since being diagnosed with MCI, please explain them giving examples.” Finally, the interview questions for selective coding included, “What do you think is most important in your daily life?”

Participants appreciated the researcher's interest in their problems, and some cried during interviews. During interviews, nonverbal expressions, such as facial expressions, behaviors, vocal tones, and silences, were recorded in the field notes. For example, records indicated that a participant who had experienced cardiac disease in the past said he could overcome MCI as well while clenching his fists or changing his tone of voice.

Each interview lasted 40 to 50 minutes. After the first analysis, two follow-up interviews with all 12 participants were conducted to supplement the data; each took approximately 15 to 20 minutes. When the interviews were completed, recorded interviews were transcribed verbatim. After interviews, gift cards were provided to participants as an expression of gratitude.

Ethical Considerations

Approval for the current study was obtained from the researcher's affiliated institutional review board (IRB). Written informed consent (purpose, method of study, confidentiality of results, refusal to participate at any time) was obtained from each participant prior to the interview. Given that participants were older adults age ≥65, attention was paid to their fatigue states during interviews. The researcher conducting the interview checked whether participants were thirsty so that breaks could be taken as needed. When participants grieved while reflecting on their lives, the researcher would wait until they regained composure.

Enough time was provided to listen to them talk outside the scope of the research topic, even when interviews had been completed. Before interviews, the researcher had concerns about the use of the term MCI. Participants used terms such as MCI, high risk, and intermediate-stage dementia, and they sometimes used demonstrative pronouns, such as “it” and “this.” The researcher conducted interviews using the same terms as those used by participants.

Data Analyses

Data were collected and analyzed simultaneously, and the constant comparative method was used in the analysis according to the open, axial, and selective coding of Corbin and Strauss (2008, 2015). In open coding, codes were verified through line-by-line analysis, concepts were grouped and categorized, and properties and dimensions of each category were expanded. In axial coding, categories and subcategories were linked to understand the relationships between categories and daily life processes of older adults with MCI. In selective coding, the integration of concepts was promoted using a strategy where outlines of the stories from participants were written in the data, and core categories that finally integrated the categories were derived. Focusing on core categories, a final model was formulated to explain living a daily life with self-awareness among older adults with MCI (Figure 1).

Figure 1. “Living a daily life with self-awareness among older adults with mild cognitive impairment” model.

Scientific Rigor

The authors followed five criteria for methodological consistency and applicability of grounded theory studies (Corbin & Strauss, 2015). For suitability of the current study methodology, samples were extracted through the theoretical sampling method, and the depth and diversity of the core categories were presented. For expert and peer reviews, the researchers undertook continuous discussion about the data analysis process with qualitative researchers and three colleagues with experience in qualitative studies. For confirmation by participants, the researcher provided the transcribed interviews and results of the open coding analysis to participants and determined that they agreed with the findings.

To maintain a research journal during the study period, the researchers used memos in which concepts derived from interactions within the data in the form of keywords were entered, and graphical notes were made that explained the relationships between concepts. As for the applicability of the findings, the researchers have proposed strategic interventions for the daily lives of older adults with MCI in terms of nursing education and practice.

Core Category: Living a Daily Life with Self-Awareness

The core category that explained daily life experiences of older adults with MCI emerged as living a daily life with self-awareness. Daily life experience of older adults with MCI was defined as the process of pursuing changes in existing daily life practices and living with self-awareness after being diagnosed with MCI to continue life without being a burden to others. To complement their cognitive functioning and pursuit of a lifestyle suitable for healthy brain activity, participants used various methods to compensate for their memory loss, such as being thankful for their life, making an effort to change their diet, exercising, focusing on interpersonal relationships, and maintaining past hobbies. For most participants, MCI diagnosis changed aspects of their lives, which were now characterized by greater determination and self-awareness.

The meaning of living in this core category is living through hardship (The National Institute of the Korean Language, 2017). According to the theory of symbolic interactions, people consider “generalized others” when they form their actions. Generalized others consist of standards, principles, norms, and thoughts that are jointly maintained by members of a particular social group (Hewitt, 1991). This forms the “me”—one of two selves mentioned by Mead (as cited by Hewitt [1991])—and supports conformity and social control. For older adults with MCI, society as generalized others delivers the message that one has a duty to lead a life that does not cause harm to others. This means that older adults with MCI internalize the concept into “I” and practice daily life with the understanding that their human duty is to lead a life that does not damage others.

Although participants indicated that to maintain daily life family members' interest and help/support from the community were important, they emphasized the effort needed to take care of themselves. Regular walking, a well-balanced diet, enough sleep, weight management, and activities to stimulate the brain are daily life activities that require high levels of awareness.

The results of the current study indicate that when participants practiced less self-awareness, they recognized that their daily life after diagnosis was different from before their diagnosis. In addition, regularity, persistence, and activeness were practical aspects needed to maintain a new daily life. Therefore, the extent in which participants incorporated new methods into their daily lives varied compared to how much help they actively sought, their determination, and whether these new methods were constant factors.

Process of Daily Life Experience Among Older Adults With MCI

Daily life experiences of older adults with MCI were found to undergo a four-stage process: accepting the diagnosis, strengthening their volition, taking care of their health, and maintaining a daily life with self-awareness.

Accepting the Diagnosis. The stage of accepting the diagnosis is a process in which participants with MCI give meaning to their diagnosis. Participants became aware of their condition—either on their own or through family members or test results—and showed differences in the degree in which the diagnosis was accepted depending on certain situations. Participants whose fathers had dementia sensed changes in their cognition and went to a public health center on their own to be diagnosed. These participants perceived MCI as a disease that could be overcome if managed well:

When I was reading the Bible, while turning the pages, I could not remember the words I read earlier at all, and I felt woozy thinking that something must be wrong. This phenomenon persisted for over two weeks.

On the contrary, some participants did not notice any changes until they could not remember monetary transactions, or they experienced a major event such as being reported to the police. These participants denied their diagnosis at first and wondered if they were the only person experiencing MCI. They were relieved after comparing their condition with their friends' conditions. Thus, these participants accepted MCI as a part of aging if they believed anybody could experience it:

When I was about 65 years old, the family said that my relative gave me money, but I did not remember it at all. I forgot it completely. At that time, my daughter led me to see the doctor. When I observed carefully, I found that my friends had memories similar to my memory, although I thought that only I lost my memory at first.

Other participants knew their memory was in poor condition after being diagnosed with MCI. It was unlike before MCI, when they could memorize a new thing without giving it much thought. Participants were shocked at first when diagnosed with MCI, but they decided that worrying would not be helpful and accepted MCI as a phenomenon that could be experienced by any older adult. A participant recalling his/her past perception of older adults stated:

I came here [the dementia center]…by chance. I was notified about participating in a test for the prevention of dementia. When I came here, they tested my memory and produced the result…since worrying does not help.

Strengthening Their Volition. In this stage, participants recognized the need for care after accepting their MCI diagnosis and became determined. Participants reminisced about the people whose care they had prioritized over their own (e.g., parents, spouses, children) and realized it was time to take care of themselves. Participants expressed a strong will to overcome MCI based on past triumphs from their health or well-being (e.g., overcoming heart surgery, taking care of a spouse with cancer, managing the pain of infertility).

Strategies participants used were awareness of the importance of the effort required to overcome their symptoms and examine changes in their cognition. In addition, a MCI diagnosis provided momentum for determining that participants needed to take responsibility for their lives. One participant stated:

I could not have any children after getting married. Not knowing this, my mother-in-law would say, “How can there be no child?” Then, my heart would sink [puts her hand on her chest]. Since I have experienced such resentful hardship, I think that if I make an effort, I will be rewarded for it.

Nevertheless, participants who were supported by their spouse or children were concerned that their MCI would progress to dementia, and that they would become a burden to their spouse/children. These participants focused on managing their health and tried to engage in cognitive learning and exercises, indicating that their spouses/children were at the center of their concerns:

Rather than be surprised, I am worried that I might cause damage to my children due to my condition. After living life fully, I feel I have lived for a sufficiently long period of time.

Taking Care of Their Health. In this stage, when participants become determined, they tend to take care of their bodies. Participants walked regularly and watched their eating habits. Their diets included nuts and vegetables. Improving their eating habits required help from family members. In addition to new eating habits, participants adopted these methods to form healthy habits and improve their brain health. Participants made sure to get enough sleep, to avoid overstressing their bodies, and they managed their weight by improving their diets. One participant stated:

When I go to the hall for the elderly, the lunch is tastier because many people eat together, but I refrain from eating too much to avoid getting fat.

Regular exercise is not restricted when taking care of their health. Above all, participants believed that walking would stimulate the brain to help improve their cognition. Regular exercise included walking up low hills near their homes every morning at a fixed time. One participant stated:

Since I go to mass every day, I walk 15 minutes there and 15 minutes home. Since I go twice a day sometimes, I often walk for an hour per day. It is walking while living.

Participants interested in brain health gathered information by looking at mass media, reading newspapers daily, transcribing the Bible, and searching maps for cities seen on television. As a result, participants were found to be taking care of themselves in relation to other people and the outside world. One participant stated:

I transcribe the Bible by section. I determine the pages to be transcribed every day, and when I complete the transcription of the entire Bible, I will receive a prize from the church.

Maintaining a Daily Life With Self-Awareness. This stage was a process where participants transformed their existing daily life into a daily life with sensitivity to avoid causing damage to others. Participants mainly used the memory assistance method, recorded important events on a calendar, or used a whiteboard as a memo pad. In addition, they would take notes before leaving home to memorize the subway arrival time or transfer station, store appointments on their mobile phone, and use tools to assist their memory, such as setting an alarm or using a timer when cooking. One participant stated:

I keep forgetting things. As soon as I receive a wedding invitation, I write the facts on the calendar above the table. This calendar contains all my important information.

Participants gained intellectual stimulation and strength through constant meetings with people or by participating in regular religious activities. They would also walk around parks in the vicinity of their homes and use exercise equipment at the health center, indicating that they appropriately used surrounding people and environments. Participants were thankful for how their lives once were and the ability to live flexibly.

Participants managed their physical fitness to maintain their new daily lives, were aware that being tired affected their memory, and adjusted their behavior to fit their circumstances. This behavior suggests that this stage was not comfortable or habitual, as the changes they implemented in daily life required an effort to practice self-awareness. One participant noted:

Even when I went to a mountain, I thought I should not overdo myself. I climbed up the mountain about halfway and gave up on reaching the top considering the effort necessary to come down.

Another participant stated:

I did not understand this in the past, when I was in my 60s and 70s, but I came to be less greedy after being diagnosed. I always appreciate what I have.