Perceived experiences of adults with mild cognitive impairment: a qualitative study

Abstract

Introduction

Increasing attention is being paid to preventing the progression of mild cognitive impairment and dementia. Today, there is a growing emphasis on listening to the “voice” of people with mild cognitive impairment to ensure patient-centered care. However, how these individuals are perceived and how they experience their illness remains underexplored, necessitating further research to achieve a comprehensive understanding. The aim of this study was to explore the experiences of adults with mild cognitive impairment, including their challenges, emotions, and personal insights.

Methods

This study was conducted from 2023 to 2024 using a qualitative approach and conventional content analysis. The study involved 16 adults who had been diagnosed with mild cognitive impairment, with a purposive sampling approach that maximized diversity. The data were collected through in-depth, semi-structured interviews and analyzed using conventional content analysis according to Granheim and Lundman.

Results

The results of the data analysis revealed two main categories: emotional schemas in mild cognitive impairment and understanding the meaning of the diagnosis. The subcategories of the main category Emotional schemas in mild cognitive impairment included (1) understanding one’s emotional nature (2), hidden narratives ranging from blaming to seeking empathy, and (3) understanding the need for others. The subcategories that emerged from the “understanding the meaning of the diagnosis” category were (1) finding meaning in the face of cognitive impairment and (2) understanding meaning as a diminishing life experience.

Discussion and conclusion

The findings of this study suggest that the experience of mild cognitive impairment involves more than just cognitive problems. A deeper understanding of these experiences could contribute to the development of more effective interventions and improve the quality of life for adults with mild cognitive impairment.

Introduction

Mild cognitive impairment (MCI) has become an important issue for healthcare systems due to the increasing aging population worldwide, including in Iran, and the growing concern about the impact of cognitive impairment on people’s quality of life [1]. MCI is considered a preclinical stage of Alzheimer’s disease (AD) and refers to cognitive decline beyond what would be expected based on a person’s age and education level [2]. All dementia prevention programs target this stage or even earlier, as there is currently no curative treatment for advanced dementia [3–5]. People with mild cognitive impairment are at increased risk of becoming dependent, especially given the increasing number of cases. This situation places an additional burden on individuals, communities, and health systems [6, 7]. In response, the World Health Organization (WHO) emphasizes the importance of using individual capabilities in care [8].

In the past, cognitive impairment was viewed through a ‘deficit’ lens that emphasized the loss of abilities. This view focused primarily on the disease itself and neglected the unique experiences and ‘voices’ of the individual. Today, healthcare is shifting to a person-centered approach that emphasizes strengths and needs rather than deficits. By valuing the individual’s perceptions, feelings, and experiences, we move beyond mere labeling to a more holistic understanding [9]. Paying attention to the inner world of people with mild cognitive impairment empowers them to take control of their own care and challenges the traditional notion of sole management by caregivers. This perspective, which has historically portrayed patients with cognitive impairment as victims, is currently being re-evaluated [10]. Rather than focusing on a discourse of loss, the authentic ‘self’ of the individual should therefore be the focus of attention.

Bartlett and O’Connor argue for a change of perspective and urge us to stop seeing people as mere individuals and to recognize them as citizens [11]. They suggest that people with cognitive impairments should be recognized as active citizens with equal rights. A meta-analysis emphasizes the importance of contextual factors in shaping the social participation of people with cognitive impairments [12]. To enable these people to lead fulfilling lives, it is important to understand their everyday experiences and work directly with them [13, 14] to facilitate their inclusion in the community [15].

In addition, research has shown that many studies have investigated how common cognitive impairment is, what its impact is, what the future prospects are, and what factors might alter its impact. However, the services available often do not meet the needs of people with cognitive impairment and their families [16–18]. Most quantitative studies and intervention studies have focused primarily on the disease itself, neglecting the personal experiences of those affected. This qualitative study aimed to explore the experiences and perceptions of Iranian adults aged 40 to 60 years with MCI, in order to identify ways to support them.

Materials and methods

This exploratory qualitative study used conventional content analysis [1] and was conducted from 2023 to 2024. Content analysis is a method used to derive reliable and valid results from textual data, generate new knowledge and insights, present real-world information, and provide practical guidance for appropriate action [19]. The study aimed to gain a comprehensive understanding of the experiences of individuals with MCI, an area that has been under-researched nationally. Conventional content analysis was employed to allow themes to emerge organically from participants’ narratives, free from the constraints of pre-existing theoretical frameworks. Unlike summative content analysis, which emphasizes keyword frequency, this approach enables a nuanced exploration of both explicit and implicit meanings, generating rich, data-driven themes that capture the complexity of participants’ experiences. An inductive approach, combined with systematic coding, ensured that the analysis remained grounded in the data, thereby minimizing bias while enhancing coherence and depth [20]. Compared to less structured thematic analysis, conventional content analysis provides a more rigorous and systematic understanding, making it particularly suitable for under-researched topics such as MCI in Iran.

Settings and samples

Purposive sampling was used to recruit individuals with firsthand experience of cognitive challenges. This approach is commonly employed in qualitative research to ensure the inclusion of information-rich cases capable of providing deep and meaningful insights into the phenomenon under investigation [21]. Participants were selected from among outpatients attending neurology clinics affiliated with Tehran University of Medical Sciences, with maximum variation in age, gender, educational attainment, employment status, economic background, and marital status. Eligibility criteria included individuals between 40 and 60 years of age who met the clinical diagnostic criteria for MCI as defined by the National Institute on Aging and the Alzheimer’s Association, and the NINCDS-ADRDA criteria proposed by McKhann et al. Participants were also required to have a Montreal Cognitive Assessment (MoCA) score between 18 and 26.30. Individuals with uncorrectable visual, hearing, or speech impairments were excluded from the study. In-depth, semi-structured interviews were conducted with 16 participants, with recruitment continuing until data saturation was achieved.

Choosing the Age Group of 40 to 60 Years: There is a well-established correlation between the progression of MCI and both the increasing average age of the population and the limited success of clinical trials in effectively addressing this condition. As a result, there is a growing need to focus on prevention and treatment strategies during the pre-elderly stage. These strategies may include lifestyle modifications, increased mental activity, and improved self-management literacy, supported by the development of specific user-centered interventions [22]. Given the potential for the early onset of MCI in adulthood and its progression into older age [23], it is essential to target the adult population in efforts to mitigate cognitive decline. To develop a user-centered gamified intervention based on self-management principles for improving cognitive functioning, the research team investigated the experiences, challenges, and emotional responses of individuals aged 40 to 60. Furthermore, previous research has shown that older adults often engage with games for entertainment or social interaction, while their therapeutic applications have not yet achieved widespread acceptance [24–26]. Therefore, the use of familiar and appealing methods is critical in designing effective therapeutic interventions.

Data collection

Data were collected over a 12-month period from 2023 to 2024 through in-depth, face-to-face, semi-structured interviews. A structured interview guide was created based on the study objectives and existing literature, and it was pilot-tested with two individuals (who were not included in the final sample) to ensure clarity and relevance. Prior to each interview, participants were informed about the study’s purpose and provided written informed consent. The interviews were conducted in Persian, in locations mutually agreed upon by the participants and the researcher (e.g., private rooms in health centers). All interviews were conducted in quiet, comfortable environments to ensure that participants felt at ease. Interviews were audio-recorded with participants’ permission, and the researcher also took reflective field notes during and immediately after each session to capture contextual details and non-verbal cues. Each interview commenced with a broad, open-ended question: “Can you share your experience following your diagnosis?” Follow-up questions were tailored to participants’ responses and aimed to encourage further elaboration (e.g., “Could you elaborate on that?” or “When you say…, what do you mean?”). This approach facilitated a flexible exploration of emerging themes while ensuring consistency across interviews. A total of 19 interviews were conducted with 16 participants, as some individuals were interviewed multiple times to clarify or expand on their previous responses. The duration of interviews ranged from 20 to 50 min, depending on participants’ willingness and ability to engage. Data collection continued until thematic saturation was achieved.

Data collection and analysis were conducted entirely in Persian. All participant interviews, transcriptions, and coding were carried out in Persian, thereby eliminating the need for translation, bilingual experts, or quality assurance procedures related to translation.

Data analysis

Conventional content analysis, following the approach of Graneheim and Lundman (2020), was employed to analyze the data [27]. Immediately after each interview, the audio recordings were transcribed verbatim. Each transcript was read multiple times to gain a comprehensive understanding of the content. Subsequently, the text of each interview was divided into meaning units, which were then condensed and coded. The resulting codes were compared and categorized into subcategories and main categories based on their similarities, differences, and content coherence. Data coding commenced after the first interview and proceeded concurrently with the subsequent interviews. In this study, the first author conducted the initial coding, while the other authors supervised the process. In cases of disagreement regarding the coding, the research team held discussions to reach consensus. Ultimately, codes were integrated and grouped into categories based on their similarities and differences. Data collection continued until data saturation was reached. Following each interview and its initial analysis, the resulting data were compared with the emerging themes and categories from previous interviews. Data collection (i.e., interviews) continued until no new themes, novel ideas, or significant variations in the identified patterns emerged. In other words, when subsequent interviews yielded only redundant information and did not contribute to a deeper understanding of the phenomenon under study, the researchers concluded that data saturation had been achieved. The continuous process of analyzing data concurrently with its collection, along with careful attention to the emergence—or absence—of new themes, served as the basis for determining data saturation in this study. Efforts were made to achieve maximum internal homogeneity within categories and maximum external heterogeneity between them.

Rigor / Trustworthiness

Guba (1981) and Guba and Lincoln (1994) have identified several key concepts — credibility, dependability, transferability, confirmability and authenticity — that describe practical techniques for ensuring the rigor of a study [28]. In this study, Guba and Lincoln’s criteria were used to ensure the trustworthiness and rigor of the data: (a) **credibility**: Triangulation by the researchers, the use of multiple qualitative data sources (including interview transcripts, quotes, and researcher’s notes), member checking, prolonged engagement with the data and peer checking were undertaken; (b) **Transferability**: Detailed descriptions of the study design, participants, context, sampling methods, data collection, and analysis were provided using maximum variation sampling; (c) **Dependability**: Researchers who were not part of the research team reviewed the research protocol; and (d) **Confirmability**: Reflective reports were documented throughout the process of data collection and analysis.

Researcher-participant relationship and reflexivity

The first author, who conducted all the interviews, is a trained qualitative researcher with experience working with cognitively impaired populations. Before each interview, time was dedicated to building rapport and ensuring participants felt comfortable. The researcher maintained a neutral and empathetic stance throughout the interview process, encouraging open and honest sharing without judgment.

To minimize potential power imbalances, participants were reminded that their responses would remain confidential and that they had the right to skip questions or withdraw at any time. The researcher also maintained a reflexive journal to document assumptions, emotional responses, and emerging biases throughout the data collection and analysis. These reflections were discussed with the research team to enhance credibility and transparency.

Ethical considerations

Ethical approval was obtained from the Research Ethics Committee of the Faculty of Nursing, Midwifery, and Rehabilitation at Tehran University of Medical Sciences (code: IR.TUMS.FNM.REC.1403.020) and from the participating clinics. All participants, or their legal guardians, were informed about the study’s purpose, procedures, and the voluntary nature of participation. Written informed consent was obtained prior to participation. Participants were assured that they could withdraw from the study at any time without facing any consequences. The study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki and is fully compliant with these standards. Several strategies were employed to overcome the particular ethical challenges associated with interviewing people with cognitive impairment. These included the researchers’ clinical experience as doctors and nurses, reflective practice, field notes, and feedback based on the researchers’ experience in the field, such as debriefing on recruitment strategies, consent procedures, and the formulation of interview questions [18].

Results

Participant characteristics

The findings of this study are based on 19 interviews with 16 participants, including 11 women and 5 men, who were referred to outpatient neurological centers and had an average age of 53.56 years. Regarding educational attainment, three participants held a doctoral degree, two had a master’s degree, three had a bachelor’s degree, four had less than a high school diploma, and one participant was illiterate (see Table 1).

Table 1.

Demographic characteristics of study participants

No.	Sex	Age	Education	Occupation	Marital status	MoCA score	Number of interviews
1	F	41	College	Employed	Single	26	2
2	F	60	Primary school	Housewife	married	23	1
3	M	59	Primary school	Retired	married	23.6	1
4	M	59	College	Retired	married	24	1
5	F	42	College	Employed	married	26	2
6	F	40	High school	Employed	married	26.3	2
7	F	57	Primary school	Housewife	Single	25	1
8	F	60	Illiterate	Housewife	married	23.6	1
9	F	50	College	Housewife	married	25	1
10	F	60	College	Housewife	married	22.5	1
11	F	40	College	Employed	Single	26	1
12	F	57	Primary school	Housewife	Single	24	1
13	F	60	College	Housewife	Single	23	1
14	M	58	High school	Retired	married	22	1
15	M	49	College	Employed	married	26	1
16	M	55	High school	Retired	married	26	1

Content analysis results

Based on the content analysis, two main categories emerged: emotional schemas in mild cognitive impairment and understanding the meaning of the diagnosis. Each category comprises several subcategories, which are presented in Table 2.

Table 2.

Category and subcategory obtained from the analysis

Main category	Subcategory	code	Dense semantic unit	Example of a semantic unit
Emotional schemas in mild cognitive impairment	understanding one’s own emotional nature	Positive emotion	Satisfaction	Thank God, I am content with God’s will.
		Neutral emotion	Responding with indifference	It’s nothing, the doctor gave me medicine and I’m taking it…
		Negative emotion	Concern about the progression and prognosis of the disease	The future lies hidden in a fog
	Hidden narratives ranging from blame to seeking empathy	To judge	Seen as unreliable by others	They considered me a desperate person, close to death…
	Understanding the Need for Others	Feeling of dependence	Fear of losing others	I don’t know what would happen to me if she wasn’t there…
understanding the meaning of the diagnosis	Finding meaning in the face of mild cognitive impairment	Defining the disease from the individual’s perspective	Mental turmoil	The rocking motion of the boat on the water - The coming and going of fog - gradual fading
	Understanding Meaning as a Declining Life Experience	Experiencing a declining change in life	Functional changes	I forget directions, I don’t drive.
			Cognitive changes	Appointments, class times, ATM passwords… I can’t remember directions.
			Emotional changes	My self-confidence has decreased, I am more fragile and vulnerable.
		Changes in the individual over time	Cognitive changes over time	My memory is less than before.
			Psychological changes over time	At first I was very upset… then I slowly accepted it.

The first category addresses the emotional experiences of individuals affected by the condition. It includes three subcategories: (1) understanding one’s own emotional nature (2), hidden narratives ranging from blaming to seeking empathy, and (3) understanding the need for others.

understanding one’s own emotional nature.

Participants’ initial reactions to the diagnosis included shock, confusion, denial, sadness, fear, and a sense of uncertainty. However, over time, as they became more accustomed to and gradually accepted their condition, they expressed a range of emotional responses. Four participants used positive terms, two used neutral terms, and ten participants described negative emotions.

Positive terms such as «contentment», «faith in God», «gratitude», «pleasure», and «relief» were used to convey affirmative emotional states. Four participants consistently expressed positive responses associated with feelings of peace and satisfaction, particularly when their diagnosis was not Alzheimer’s disease or perceived as life-threatening. These sentiments were conveyed through open conversations and the use of various metaphors. Those who used the term «pleasure» emphasized the importance of living in the moment and enjoying the present.

I am grateful. At least I don’t have cancer. My children are here and take care of me. God is great. What more could I want in life? I’ve had a good life. You have to have faith in God. (p. 4).

Respondents who expressed neutral reactions generally provided superficial assessments of their condition, offering brief or indifferent answers to questions regarding their emotional response. This group did not perceive their condition as a disease, and such responses were primarily observed among male participants:

It is nothing; the doctor gave me some medicine…. (p. 3)

Some participants used words such as «being bothered», «frustration», «big failure», «sad», «upsetting», «regrettable», «unbearable”, «difficult», «shame», «fear», «ambiguity», «worry», «stress», «scary», «loss», «anger» and «dependence» to describe their negative feelings. These responses centered on fear regarding the prognosis of their cognitive disorder and a pervasive sense of uncertainty, which were clearly evident during the interviews (ten participants). Participants articulated concerns about the possible progression and worsening of their condition. The feeling of uncertainty was largely driven by anxiety about an imagined and unpredictable future.

… They say they have Alzheimer’s. They are very sick. I was so afraid that I came to prevent it. So that it wouldn’t happen to me. I came to prevent it, to get treatment… I don’t know at all what the future will look like… Will my disease progress? Can it even be called a disease? Can the current treatments be trusted?… (p. 11)” “… I don’t know what my future will look like. What will happen? Will I be bedridden or not? These things scare me…. (p. 12)

Participants expressed particular concern about how their condition might impact their current quality of life and future cognitive abilities. A prevalent fear was the loss of control over their lives and the potential dependence on others, leading to feelings of being a burden and negatively affecting loved ones. Eight participants perceived an uncertain future, primarily attributing it to the unpredictable course of the disorder and the lack of appropriate support. They used metaphorical expressions such as “gradual fading of existence” and “a halo of clouds”. These participants reported feeling stressed, anxious, and fearful about what lies ahead. Those with prior personal experience of dementia—either in family members or acquaintances—were especially anxious.

…I do not know what will happen. The future lies hidden in a fog, as if I were slowly fading away… My situation is unclear… My mother is right in front of me, but I am the one who takes care of her… " (p. 1,). “…But what if I’m in for worse tomorrow? What if I get lost tomorrow? What if I can no longer control my life? I’m so scared… I tell my kids, if you see that I don’t recognize anyone anymore, don’t feel obligated to me. Put me in a nursing home. I said you owe me that. (p. 2)

Hidden narratives ranging from blame to the search for empathy

According to the participants, the attitudes of people toward individuals with cognitive impairments often included judgment, blame, discriminatory behavior, lack of understanding, and mistrust or skepticism regarding the individual’s condition. Those living with cognitive impairments frequently made deliberate efforts to avoid negative reactions—such as being questioned, judged, underestimated, or perceived as unreliable. These experiences often led to feelings of shame or embarrassment. In some cases, participants chose to conceal their condition for fear of social stigma or unfavorable responses.

…At this time I became depressed. I had just realized that I was gradually becoming forgetful, even though I had been performing my duties satisfactorily and was still employed in my previous job. When my colleagues heard the word ‘dementia’, they thought I was a desperate person on the verge of death. I came to the conclusion that I should not have disclosed my problem to them… (P. 4).

One strategy used to avoid blame was the normalization of cognitive decline, framing memory problems as a natural part of aging and, therefore, not a major issue nor something that could have been prevented. Consequently, they felt that they did not deserve blame. In the case of the fourth participant, this may have also been an attempt to legitimize the information disclosed to the researcher, as the participant was initially hesitant to share details. Only after multiple follow-up conversations and prolonged engagement did they admit feeling annoyed by the judgment of others. To counteract potential prejudice, one participant emphasized her continued independence and ability to manage daily responsibilities despite memory difficulties. Participants also attempted to mask their memory lapses by recalling past accomplishments and asserting that they had never needed assistance.

Do we all have a perfect memory for our entire lives? As we get older, however, these memory lapses can affect any of us. There is no way to prevent them… I can do everything on my own; I’m not defeated. Sometimes I forget things, but I remember them quickly. I also take care of the housework, as my wife has a slipped disk… I was offered a company house near the hospital, but I turned it down. I have a class 1 driver’s license and have licenses for various vehicles. I drove a bus during my military service… (P. 3).

People with cognitive impairments often actively try to avoid negative reactions such as anger or judgment from others during social interactions. These efforts are aimed at preventing feelings of shame or embarrassment in certain situations. To achieve this, they may hide their forgetfulness and frequently respond to questions with phrases such as »I know.«.

… Yes, I know, you asked that… (This response was repeated several times) (p. 3, p. 11, p.12).

As individuals with mild cognitive impairment still retain a broad range of functional abilities and can perform various tasks, those around them often fail to take their memory deficits seriously. One participant expressed frustration over the lack of trust and understanding she received from others, feeling that people did not believe in the reality of her condition. She attempted to demonstrate that she was in control of her experiences and emotions by suggesting that forgetfulness served as a protective mechanism for her mental health, shielding her from painful memories. She used this explanation to legitimize the information she shared with the researcher. Toward the end of the interview, she appeared to exaggerate her capabilities, possibly in an effort to mitigate perceived judgment from the researcher.

… I ask my husband: ‘What is so-and-so’s name?’ or ‘Who is so-and-so’s daughter-in-law?’ He replies: ‘We’ve been to their house so many times, how can you forget? Are you kidding me?’ He doesn’t believe me… My son is a real foodie, so I hide snacks in different places and then forget where I put them. However, my son thinks I’m deliberately withholding the snacks from him. Of course, I say it’s good to forget bad memories — grief, losses and those difficult moments… (P. 6).

One participant, who was also the caregiver for a parent with dementia, noted that both the patient and the caregiver often experience feelings of isolation and rejection. She attributed this to the challenges of managing dementia and the general lack of empathy and understanding from others. The participant described her own feelings of loneliness and emotional strain. She referred to her mother’s condition using the metaphors “gradual farewell” and “fading away.”

… I am gradually losing my mother before my eyes. It hurts me that I can’t do anything about it… My mother has become irritable and sensitive due to her illness. She needs care and support. Others don’t understand that the disease has changed her behavior, so they argue with her and then walk away. I find myself interfering and defending her. I would prefer them to stay away. They don’t understand me… (P. 1).

Understanding the need for others

This subcategory reflects participants’ perceptions of their relationships with those around them. Participants reported a reduction in social interactions. Feelings of dependence and the need for support from others were two important concepts emphasized by participants. Some individuals did not receive assistance in coping with their anxiety and sadness, despite the support they themselves provided to family members. Participants who felt sad and lonely sought the support of those around them. One participant, who was responsible for caring for her ill parent, expressed a sense of belonging and dependence on her parents, despite their cognitive impairments.

… My daughter has leukemia; we’ve been through so much. Now she is slowly learning to walk, but she keeps falling down. My wife takes care of her and returns home the next day… The kids have all moved out. There’s no one around… I’m alone most of the time… (p. 3).

… I cannot bear to leave her. I will take care of her for the rest of my life. I don’t know what I would do without her… (p. 1).

Understanding the meaning of diagnosis

The conflict between expectations of normal aging and the personal experience of cognitive impairment provided the context in which participants made sense of their mild cognitive impairment. This main category consisted of two subcategories: (1) finding meaning in the face of mild cognitive impairment and (2) understanding meaning as a declining life experience.

Finding meaning in the face of mild cognitive impairment

Participants provided a variety of definitions for mild cognitive impairment, reflecting their understanding and knowledge of the condition. Their limited knowledge often led them to perceive it simply as “forgetfulness,” a term they initially struggled to articulate but eventually adopted after further discussion. Some participants used more descriptive metaphors, comparing people with cognitive impairment to the “living dead” (p. 2) or likening fluctuations in mental state to the “rocking of a boat on the water” or the “coming and going of the fog” (p. 4). Others described reaching a “dark dead end” (p. 9) or experiencing a “gradual fading.” Eight participants defined the condition solely in terms of symptoms.

… Something just won’t go into your head. It falters. I am uncertain. I don’t know. I mean, I’m forgetting. I’m becoming forgetful. Gradually, a person becomes like the living dead. You don’t even realize it yourself, but little by little… (p. 2).

Understanding meaning as a diminishing life experience

This subcategory was further subdivided into four subcategories: (1) functional changes (2), cognitive changes (3), emotional changes, and (4) changes in the person over time.

Functional Changes: Participants 1, 3, 9, 10, 11, and 12 did not report any functional changes and used this as a basis for their response when asked to define the disorder. Participants 2 and 4 cited the inability to drive as the only difficulty, attributing it to forgetting routes. Participant 11 also expressed concerns about forgetting to take his medication on time.

… No problems. No changes have occurred. Well, I forget things, but I remember them quickly. It’s not that I put something somewhere and then forget it. I think about it for a moment and remember. I do all my tasks on time. Everything is in its place. I don’t run into many problems… (p. 3).

Cognitive Changes: Cognitive decline was the most commonly reported change among participants. Memory problems manifested as forgetting daily events, names of people and places, birthdays, and recalling information. In addition, participants reported difficulties with concentration, learning new material, and word retrieval while speaking. Many coping strategies were mentioned, such as taking more time, using repetition, thinking systematically over longer periods, setting digital reminders, taking notes, asking others for help, and drawing on religious support.

… I forget things — appointments, online course times, ATM PINs… I can’t remember routes. When I used to hear a name, I could focus on it for a moment and I wouldn’t forget it. Now I can’t remember it even when I concentrate… (p. 5).

Emotional Changes: Participants reported that they experienced significant emotional changes and often losing control over their emotional reactions, which manifested as crying, anger, or laughter. These reactions sometimes led to feelings of shame. In response to disruptions in daily life and setbacks, such as accidents in the home, participants described a range of negative emotions, including anger, frustration, loss of self-confidence, depression, vulnerability, and even hopelessness. In addition, many of them expressed heightened feelings of sadness, anxiety, and fear.

… I’m still the same motivated person I’ve always been. But my self-confidence has diminished. I feel more fragile and vulnerable…” (p. 4). “… I find myself getting angry afterwards. My tolerance has dwindled. Nevertheless, my problem is not serious… (p. 1).

Changes in the Person Over Time: During the interviews, participants discussed their experiences of physical and psychological changes over time. Physical changes primarily included cognitive decline, indicating deterioration in one or more cognitive domains. Participant 1 described the changes in his memory as follows:

… My memory has deteriorated compared to before. When I was in high school, I could read something three times and remember it for the rest of my life. I memorized the material first, then repeated it twice, and by the end of the semester, I still knew it. Now I realize that I have to read it three times every time (p. 1).

The topic of psychological and emotional changes in individuals, the processes by which these changes occurred, and the coping mechanisms adopted by the participants were also discussed. Transitional phases were observed in three participants, often characterized by an initial period of grief, followed by gradual adjustment and eventual acceptance over time. The research team used the term ‘trajectory’ to describe the progression of these individuals over time.

… I was annoyed at first. To be honest, I was afraid of becoming like my mother. Gradually, I accepted my situation and learned to live with it… I felt that I had lost many important things in my life, and this was one of the most important. Eventually, I decided to make progress in my life again… (P. 1).

Discussion

The primary aim of this study was to explore the perceptions, subjective experiences, and emotions of adults with MCI in Iran, a region that remains under-researched. Participants attributed a wide spectrum of meanings to their diagnosis, from equating the syndrome with mere forgetfulness to viewing MCI as a possible precursor to dementia. Consequently, they risked both overestimating and underestimating the significance of their condition. These findings align with Hengstschläger et al. (2023), who highlight the challenges patients face in defining the meaning of MCI [29].

Our results reveal a diverse range of emotions—positive, neutral, and negative—among individuals with MCI, consistent with Connolly et al.’s (2023) systematic review [7]. In contrast, Munawar et al. (2023) reported predominantly positive emotions and relief following an MCI diagnosis in an Irish cohort. Those participants expressed satisfaction or even happiness at not having developed dementia and reported minimal changes in mood or self-esteem, with few unaware of their condition. By comparison, our participants frequently cited religious beliefs and trust in divine providence as sources of comfort, yet none possessed sufficient information about MCI. These discrepancies may stem from differences in methodology, setting, and the sociocultural and support contexts of the study populations [30].

A common theme reported by participants was a decrease in social interactions, leading to increased feelings of loneliness and isolation. These factors, combined with a lack of awareness of MCI and its compensatory and preventative strategies, underscored a deficit in self-management — at least on these dimensions — among patients. These results were particularly surprising to the research team as they were observed even in educated participants. However, the findings of this study are consistent with the qualitative research by Sun et al. (2024) in China [31], which highlighted the lack of attention to patients’ self-management skills in various domains and emphasized the need for further efforts in this area.

According to findings, in Iranian society, strong family ties and collectivist values often lead individuals with cognitive impairments to rely significantly on their family members for both emotional and practical support. However, this cultural emphasis on family honor and social reputation can also contribute to the stigmatization of mental and cognitive disorders, causing some individuals to experience feelings of shame, denial, or social withdrawal. Unlike in some Western contexts, where autonomy is prioritized [32, 33], Iranian society emphasizes family interdependence. Furthermore, limited public awareness about MCI and inadequate access to specialized mental health services may exacerbate the psychological burden associated with the diagnosis. These findings align with studies from other collectivist societies, such as China and India, where stigma and family-based decision-making similarly influence patients’ experiences and help-seeking behaviors [34, 35]. By acknowledging these cultural dimensions, this study provides contextually grounded insights into how Iranian adults with MCI interpret and cope with their diagnosis.

Future research should include regular longitudinal studies examining the presentation of the disease and its impact on health behaviors and coping mechanisms, as well as the promotion of autonomy and shared decision making based on individual preferences. This approach aims to improve the quality of life of adults with MCI in Iran. In addition, similar qualitative research should be conducted among older adults with MCI, as their experiences, needs, and coping strategies may vary due to age-related factors and different stages of disease progression. Understanding these differences can help tailor interventions more effectively across various age groups.

Conclusions

In this study, we used content analysis to delve deeply into the inner experience of adult patients with MCI. Through in-depth analysis and refinement of the data, two themes emerged —emotional schemas in mild cognitive impairment and understanding the meaning of the diagnosis —are closely aligned with the study’s aim, which was to explore the experiences and perceptions of adults with MCI. The findings reflect the emotional responses and the interpretative processes that participants undergo following their diagnosis, thereby addressing the core research objective. The results of this study suggest that the experience of mild cognitive impairment goes beyond cognitive issues. A deeper understanding of these experiences could help in the development of more effective interventions and improve the quality of life of adults with mild cognitive impairment.

Limitations

A major limitation of this study is that the disorder is influenced by various chronic diseases of the subjects. In addition, participants were fatigued during the long interviews, which necessitated longer data collection. Given the diversity of interviewees’ experiences, certain aspects of the concept may have been overlooked during the coding process, a common limitation in qualitative research.

Abbreviations

AD

Alzheimer’s Disease

MCI

Mild Cognitive Impairment

MoCA

Montreal Cognitive Assessment

NINCDS-ADRDA

National Institute of Neurological and Communicative Disorders and Stroke/Alzheimer’s Disease and Related Disorders Association

WHO

World Health Organization

Author contributions

Conceptualization, N.DN., L.P., Z.R, F.B. and M.SH.S., and T.V.R.; methodology, N.DN., and Z.R.; software: L.P.; validation, N.DN., Z.R., F.B., M.SH.S., L.P.; formal analysis, N.DN., and L.P; investigation: L.P.; resources, N.DN. and L.P.; data curation:, N.DN. and L.P.; writing—original draft preparation: N.DN. and L.P.; writing—review and editing: N.DN., L.P., Z.R, and F.B.; visualization: L.P., N.DN. and Z.R.; supervision: N.DN., Z.R., F.B. M.SH.S.; project administration, L.P.; funding acquisition, not applicable. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

The entire procedure adhered to the ethical standards for qualitative research and MCI patients. All procedures were approved by the Research Ethics Committee of the Faculty of Nursing, Midwifery and Rehabilitation, Tehran University of Medical Sciences (code: IR.TUMS.FNM.REC.1403.020). The ability of the participant with mild cognitive impairment to give informed consent was first assessed and confirmed by a neurologist, and the MoCA tool was used to determine the cognitive level and ability to give informed consent. Various methods were used to facilitate obtaining informed consent from participants. These included conducting interviews in the participants’ native language, identifying and addressing potential medical issues (e.g., sedation, dehydration, anxiety), creating a calm environment for the interviews, and scheduling interviews early in the day. In one case, informed consent was obtained from both the patient and her guardian, as the participant was illiterate (p. 8). In another case, informed consent was obtained from the patient’s guardian based on the neurologist’s diagnosis (p. 3). In cases where guardian consent was obtained, both the process and the rationale for acquiring it were thoroughly documented. Participants or their guardians provided informed consent for the interviews and audio recordings.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.