Experiences of caregivers of older adults with Alzheimer’s disease: a netnographic analysis

Ananda Azevedo Santana¹, Rejane Santos Barreto¹, Simone Santos Souza¹, Andrea dos Santos Souza¹, Lucas Benedito Fogaça Rabito², Endric Passos Matos², Rafaely de Cassia Nogueira Sanches²

¹Universidade Estadual de Santa Cruz (BA), Brasil. ²Universidade Estadual de Maringá (PR), Brasil.

Introduction

Alzheimer’s disease (AD) is one of the most prevalent forms of neurodegenerative dementia and is characterized by a progressive and incurable course, with significant repercussions for the quality of life of affected individuals. AD is a condition marked by complex neuropathological and neurochemical processes that lead to the gradual decline of essential cognitive functions, such as memory, attention, orientation, and communication as well as behavioral changes that compromise the autonomy and independence of older adults.¹

Although AD predominantly affects individuals aged 65 years or older, research describes early-onset forms of the disease that account for approximately 10% of diagnosed cases.² This variability in disease presentation broadens the range of challenges faced by both individuals living with AD and their caregivers, requiring differentiated care and support strategies.

The global epidemiological landscape highlights the growing magnitude of this public health problem. Data released in 2024 by Alzheimer’s Disease International estimate that more than 55 million people worldwide are living with dementia.³ In the same year, Brazil published the National Report on Dementia: epidemiology, (re)recognition, and future projections, which indicates a prevalence of approximately 8.5% of AD among individuals aged 60 years or older. The report shows a higher occurrence among women, who account for 9.1% of diagnoses, compared with men, who represent 7.7% of cases. Regional variations were also observed, with a prevalence of 7.3% in the Southern region and 10.4% in the Northeast.⁴

Because of the progressive cognitive decline characteristic of AD, the presence of a caregiver becomes essential to assist older adults with daily activities and more complex tasks. As the disease advances, this need evolves into constant supervision, resulting in a demand for comprehensive and continuous care. In this context, caregivers assume direct responsibility for the well-being of the older person and may perform this role in either an informal or formal capacity, in home or institutional settings. Care may be provided by family members, friends, neighbors, or hired professionals, with or without specialized training.⁵

A central aspect of this scenario is the predominance of women in the care of individuals with AD. Despite changes in family arrangements and women’s social roles in contemporary society, the demands associated with population aging have not been accompanied by substantial changes in the sexual division of caregiving labor. In many societies, the care of an ill family member remains largely assigned to women, reflecting historically constructed inequalities rooted in asymmetric power and gender relations. This reality places female caregivers in a situation of greater vulnerability to physical and psychological illness due to overload and exhaustion.^6-7

Studies consistently demonstrate that caregivers play a fundamental role in the lives of older adults with AD.^7-8 Assuming the multiple responsibilities inherent to caregiving involves complex physical, psychological, and social demands that require appropriate attention and support. These dimensions directly influence caregivers’ daily routines and can significantly compromise their quality of life, creating a cycle of continuous demands that calls for targeted interventions.

Therefore, the need to gain an in-depth understanding of the challenges experienced by caregivers of older adults with AD underpins the present study. Although the complexity of the caregiving process is widely acknowledged, there remains a notable gap in the Gerontology and Nursing literature regarding experiences expressed in virtual environments. These spaces have assumed a central role in contemporary life, serving as venues for seeking support and building support networks among caregivers who share similar experiences, doubts, distress, and coping strategies.

Accordingly, systematic immersion in online interactions allows for the capture of nuances that would be unlikely to emerge through traditional research methods, thereby helping to address gaps in current evidence. Accordingly, this study aims to explore the challenges experienced by caregivers of older adults with AD based on virtual interactions.

Method

This study adopted a netnographic design, a method derived from ethnographic techniques and adapted for the investigation of cultures and communities in virtual environments. In the scientific field, netnography is distinguished by its approach to online communications not merely as content, but as social interactions imbued with meanings and cultural artifacts, in which virtual spaces function as extensions of individuals’ everyday lives.⁹

The growing presence of the internet in contemporary life has reshaped routines and forms of social interaction, giving rise to what is referred to as cyberculture. Within this context, the adoption of a netnographic approach is justified by its ability to systematically investigate these digital dynamics, recognizing virtual environments as legitimate fields for knowledge production, particularly with regard to the existential dimensions of caregiving. In the health sciences, several studies have employed this approach to explore diverse topics, demonstrating its potential to understand experiences, behaviors, and practices mediated by online platforms.^9-10

Instagram was selected as the virtual research setting because it was considered the most appropriate platform for the study design. Launched in 2010, this free social network ranks among the most popular worldwide, with approximately 1.48 billion users in 2022, placing it fourth among the most widely used platforms globally.¹¹ The platform facilitates social interaction through sharing, commenting, and liking posts, and allows content organization through hashtags (#), which group images and texts related to specific themes.^10-11

Data collection followed four stages: (i) definition of the research question, “What challenges are experienced by caregivers of older adults with AD?”; (ii) selection of the social network and identification of a post that addressed the research problem; (iii) reading, observation, and extraction of comments using the Google Chrome extension tool IGCommentsExport; and (iv) application of the inclusion criteria. Comments written in Portuguese, posted by users with public accounts, and addressing experiences or lived realities as caregivers of older adults with AD were included. Comments that did not refer to the user’s experience as a caregiver were excluded.

Initially, a search was conducted on Instagram using the hashtag “#alzheimer” to identify Portuguese-language profiles addressing caregiving. The selected profile had more than 67,000 followers, was created in 2021, originated in Brazil, and portrayed the daily experiences of an informal caregiver with the purpose of supporting other caregivers. Within this profile, a specific post in the reels format entitled “Alzheimer’s Challenges,” published in December 2023, was identified and contained 286 comments.

Comment extraction was performed on February 17, 2024, using the IGCommentsExport tool, which exported data to a Microsoft Excel spreadsheet. Although the tool offers both free and paid versions, the free version limits extraction to 100 comments. As the post contained 286 comments, it was necessary to upgrade the tool to enable full extraction. It should be noted that three comments were not extracted because the tool only allows the collection of comments from public accounts. Thus, the final sample comprised 283 comments.

After applying the inclusion and exclusion criteria, 19 of the 283 collected comments were selected to compose the study’s textual corpus. It is noteworthy that the researchers did not establish any form of interaction with users, assuming the role of nonparticipant observers.

Data analysis and interpretation were conducted based on Bardin’s content analysis technique,¹² structured in three stages. Pre-analysis involved organizing the material and systematizing initial ideas. Material exploration consisted of data coding, identification of meaning units, and construction of analytical categories. Finally, the treatment of results, inference, and interpretation enabled the establishment of relationships between the object of analysis and its broader context, supporting theoretically grounded reflections.

From an ethical standpoint, the study complied with the guidelines of Resolution No. 510/2016 of the Brazilian National Health Council, which exempts studies using publicly available information in the Human and Social Sciences from registration and review by a Research Ethics Committee. Nevertheless, anonymity and data confidentiality were rigorously preserved, in accordance with the principles of the Brazilian General Data Protection Law, including respect for privacy, informational self-determination, and freedoms of expression, information, communication, and opinion.

Accordingly, neither the profile nor the analyzed post was identified. For comment coding, alphanumeric identifiers were used (Comment 1 = C1, and so forth), with numbering distinct from the original order of publication. Furthermore, no information was used in a manner that could be harmful to users or to the investigated virtual community, in line with the ethical guidelines established by Resolution No. 466/2012 of the Brazilian National Health Council.

Results

The exploration of the netnographic material, combined with Bardin’s content analysis, allowed the identification of four analytical categories. Comments selected to compose these categories were presented in their original digital language, preserving abbreviations, symbols, and structures typical of the virtual environment, without any intervention by the researchers, except for a free translation to English.

Category 1: support network as an essential need for caregivers

Analysis of the comments showed that the presence or absence of a support network is a determining factor in caregivers’ experiences. Participants repeatedly emphasized the importance of family and professional support to enable caregiving and to preserve caregivers’ physical and emotional health:

You need help for him to wake up and already have people around. One person alone can’t handle it. My grandmother was privileged; besides us in the family, she had 3 caregivers, one who had just finished the night shift and two during the day, one cooking and the other taking care of her. (C1, free translation)

Happy are those who have a support network, because caring alone will definitely make you sick! (C8)

My aunt has had Alzheimer’s for a few years, and we take care of her, my uncle and I, he is 83 years old. I see every day the care and affection he has for her, but lately I feel he is very agitated and distressed. You know when someone seems ‘out of place.’ I told him how important it is to have a caregiver, because he is also elderly and is not having the opportunity to experience his own aging […]. I know how important it is to care for those who care. (C9)

Category 2: burden and emotional stress resulting from caregiving demands

The analyzed comments revealed a constant presence of physical and emotional burden among caregivers, expressed through feelings of tiredness, difficulty, and exhaustion associated with the demands of continuous care:

I am a daughter and have 2 more siblings. I take care of my father with Alzheimer’s. It’s not easy; he has always been stubborn, and now even more so. (C2)

It is very difficult to take care of a person with dementia. I take care of my husband alone and I know how heavy it is. That’s why I told my children that when I reach old age and can no longer take care of myself, I want them to place me in a nursing home. I don’t want my children to go through what I am going through. We stop living too. (C6)

[…] it is a daily challenge. Here at home, both have Alzheimer’s, my father and my mother. We are doing everything we can to give them the best possible quality of life, but it is very difficult not to lose ourselves in the process. (C13)

In addition to physical burden, participants reported intense emotional stress:

As much as we try to fill ourselves with good feelings, I realize it is as if we live in a BOTTOMLESS BAG. Fear, anguish, and responsibilities haunt us all the time! We fight in every way to meet the needs of our soul, which seems to always be missing something we don’t know what it is […]. (C14)

How challenging the routine is for those who care for people with Alzheimer’s. My sister and I take care of our mother, and sometimes despair hits. (C15)

I still haven’t figured out how to live without being in a state of alert and worry 24h a day. (C17)

My husband has had Alzheimer’s for 8 years. I have gone through many difficult situations and overcome them day by day, hour by hour, so as not to become ill. The fear and anguish of living through all this are indescribable. (C18)

Category 3: personal sacrifice and the experience of living for the other

The comments revealed a pattern of personal self-denial and full dedication to caring for another person, often at the expense of one’s own life:

I often have a feeling of helplessness. I want to help! I want to do more than I can… and in doing so, I end up putting my life aside to live his. It’s so hard… May God give us calm, wisdom, and strength for life’s struggles. (C3)

I am an only daughter and I have the same feeling. I live for her and because of her. I don’t have a life of my own. I’m not unhappy because of this, but I notice time passing and myself standing still in it. Even so, I often try to give more than my best. (C4)

It’s not easy. We have to live one day at a time, and living in a sick household is not easy. We also have to take care of ourselves. (C7)

But it’s not easy, because I have no time for myself. I don’t leave the house because there’s no one to stay with her, and so I go on. (C16)

I am an only daughter and I also take care of my father […]. Only we know the weight of all this! I decided that I won’t have children, because I don’t want to have to take care of and worry about anyone else. I make a daily effort not to forget myself amid so many demands. I wish strength to all of us who came with this life mission! (C5)

Category 4: concerns and coping strategies

Caregivers reported different strategies to deal with caregiving demands, including the use of medications, therapeutic support, and processes of acceptance:

[…] medication for depression and anxiety, I reached that stage. I tried to avoid it as much as possible, used flower remedies, and tried other therapies, but it’s very heavy (C10)

It’s a constant state of alert and anxiety! I was a caregiver for an older woman with Alzheimer’s. I went to therapy and took medication. Very challenging! (C11)

My mother was diagnosed 10 years ago and has been living with me for almost 3 years. I live in constant apprehension, every day is different. I questioned myself a lot and carried a huge bag of resentments and conflicts we had, but today I have given up carrying it. I try to be my best version in this process, a heavy, tiring, and exhausting process! (C19)

One comment was particularly revealing regarding the process of acceptance:

It’s not easy. I took care of my father with Alzheimer’s and now I also take care of my mother with Alzheimer’s […]. When I was faced with my father’s Alzheimer’s, I made a decision that was fundamental for dealing with this disease in the best possible way. I stopped and thought: I cannot reverse this situation, so I had two paths, either I would lament and keep questioning why this was happening to my father and to me, or I would accept it, understand the disease, and live with my father in the best way possible. Choosing the path I followed was a blessing, because when we accept and understand what is happening, everything becomes lighter, things fall into place, and we move forward happy and at peace within our reality. (C12)

Synthesis of results

The netnographic analysis showed that caregivers of older adults with AD experience multidimensional challenges, ranging from the need for social support to the development of personal coping strategies. The four analytical categories highlight the complexity of the caregiving process, underscoring both negative impacts, such as burden, emotional stress, and personal sacrifice, and adaptive movements, expressed through the search for support, the development of coping strategies, and the progressive acceptance of AD.

Discussion

The findings of this netnographic study provide an expanded understanding of the experiences of caregivers of older adults with AD, highlighting central aspects that warrant analysis in light of the scientific literature.

The first category, which addresses the support network as an essential need for caregivers, strongly corroborates findings reported in prior research. The role of the caregiver is widely recognized as fundamental in the daily lives of older adults with AD. As the disease progresses, caregivers, whether family members or professionals, gradually assume cumulative responsibilities that encompass nearly all aspects of care, ranging from basic activities of daily living, such as bathing and feeding, to instrumental activities, including medication management and financial control.¹³ In this context, providing care without a formal or informal support network becomes extremely challenging.

A support network can be understood as a subset of social relationships that perform protective and supportive functions, both informally, through family members, friends, neighbors, and civil society institutions, and formally, through public institutions and services in the areas of health care, social assistance, education, and housing. Social support, in turn, refers to interactions and information that make caregivers feel part of a network capable of minimizing stressors during crises, thereby contributing tangible benefits to daily life.¹⁴

The analyzed comments clearly revealed the risk of illness associated with solitary caregiving in the absence of adequate support. This finding is consistent with prior research indicating that caregivers of older adults with AD are at increased risk of developing psychological symptoms, such as depression and anxiety, as well as physical health problems, with a consequent negative impact on quality of life. As the disease advances and caregiving demands intensify, caregivers frequently experience chronic pain, sleep disturbances, financial difficulties, and social isolation.¹⁵

The lack of support is often attributed to the withdrawal of friends and family members, which directly contributes to increased task overload and feelings of loneliness.¹ When caregivers assume exclusive responsibility for caring for an older adult with AD, they tend to experience significant physical and emotional exhaustion as a result of the continuous demands of daily care.¹⁶

In some cases, the assumption of solitary caregiving is associated with cultural beliefs, moral commitments, and social obligations, particularly when the caregiving relationship is filial or marital, and may also be linked to feelings of reciprocity.² These factors lead many caregivers, especially family members, to provide care alone, motivated by conformity or socially constructed expectations.

Notably, the lack of support from other family members or from public authorities is rarely questioned by caregivers of older adults with AD, who often adopt a conformist or passive stance toward this reality. Neglect or refusal of help in facing this demanding daily task also tends to go unchallenged, frequently influenced by financial constraints that limit access to formal support. Nevertheless, evidence indicates that caregivers who receive assistance with caregiving tasks and have access to a consistent support network report fewer negative experiences and more positive ones related to caregiving.¹⁷

In this regard, the existence of a support network is fundamental for managing the dependency associated with dementia. Caregivers need access to support groups that allow them to clarify doubts about the caregiving process, share concerns, and express feelings related to their lived experience. Moreover, strengthening partnerships among caregivers, family members, and health professionals contributes to reducing daily difficulties and caregiver burden.¹⁸

The second category, related to caregiver burden and emotional stress, highlights core dimensions of the caregiving experience that are also well supported by the scientific literature. Caregivers of individuals with AD live with a continuous, intense workload and high levels of stress resulting from the multiple demands of daily care.

Caregiver burden is understood as a multidimensional phenomenon encompassing both objective and subjective components. Objective burden refers to changes in lifestyle, such as withdrawal from work, alterations in family roles, and impacts on physical and mental health. Subjective burden, in turn, relates to emotional responses to caregiving demands, including feelings of anger, guilt, frustration, anxiety, and emotional exhaustion.^19-20

Participants’ statements, such as “it’s not easy, he has always been stubborn, now even more so” (C2), illustrate the difficulty of dealing with the behavioral changes associated with AD. Caregivers frequently report feelings of irritability and helplessness in response to cognitive and behavioral manifestations that are beyond their control. These behavioral aspects of the disease constitute factors that intensify negative caregiving experiences.²¹

Expressions such as “it’s not easy” (C2), “we stop living too” (C6), and “it’s very difficult not to lose ourselves in this process” (C13) clearly reflect the impact of emotional stress and objective burden on caregivers’ lives. Studies indicate that continuous caregiving can compromise caregivers’ autonomy, restrict social life, generate feelings of loneliness and loss of freedom, and hinder self-care.^{1-2, 12} These consequences may culminate in the inability to leave the house or attend to one’s own needs due to the time and energy devoted to caregiving.²²

The lives of caregivers, especially daughters and wives, tend to be annulled, with their right to self-care and the pursuit of personal projects often denied. The phenomenon of double caregiving burden is also noteworthy, as illustrated by the account in (C13): “here at home both have Alzheimer’s, my father and my mother,” a condition that substantially increases physical and emotional overload.

Such circumstances may result in caregiver self-neglect. By disregarding their own needs, caregivers are at greater risk of overload compared with those who are able to maintain self-care practices.²² For caregivers to have time for themselves, it is essential to adopt coping strategies combined with effective social support.^6-7 In this way, it becomes possible to reclaim personal interests, goals, and aspirations that are not exclusively tied to the older adult under their care.

Stress is described as a state triggered by the perception of stimuli capable of provoking emotional arousal, disrupting homeostasis, and increasing endogenous adrenaline secretion, resulting in a range of systemic manifestations with physiological and psychological repercussions. This process elicits adaptive responses whose intensity and form depend on the interaction between individual characteristics, environmental demands, and the individual’s perception of their own coping capacity.²³

As the disease progresses, caregivers assume progressively greater responsibilities, devoting themselves almost entirely to the older adult with AD.²⁴ Because of the progressive nature of AD, the statement that “responsibilities haunt us all the time” (C14) illustrates the intense emotional and physical challenge experienced by caregivers, who face a continuous process with no clear endpoint, marked by constant vigilance.

Over time, caregiving demands become increasingly complex and exhausting, potentially contributing to the development of psychosocial conditions such as burnout syndrome, resulting from high levels of stress and the sustained effort required by caregiving activities for older adults with AD. Physical and mental exhaustion, experienced as an ongoing battle, leads caregivers to perceive each new day as the restart of an arduous, repetitive, and progressively more burdensome task.^23-24

Caregivers report an intensification of feelings such as fear, anguish, despair, a permanent state of alertness, and a diffuse sense that something is always missing, even if they cannot clearly define what it is. These feelings reflect the emotional complexity faced by caregivers of older adults with AD, associated not only with disease progression but also with factors such as lack of support, caregiving overload, and social isolation, all of which significantly contribute to emotional stress.²²

The report of being in a “state of alert and worry 24h a day” (C17) can be understood in light of the functional consequences of the disease, which include the progressive loss of decision-making capacity and autonomy secondary to gradual cognitive deterioration. This process compromises abilities such as reasoning, memory, emotional expression, and judgment.²⁵ Also noteworthy are the reduction or inability to perform activities of daily living, along with changes in balance and visuospatial perception, factors that increase risks for older adults with AD, such as falls and the development of immobility syndrome.²⁶

The third category, related to personal sacrifice and the feeling of living for the other, reveals profound dimensions of the caregiving experience that extend beyond physical and emotional limits. “Living for the other” emerges as a frequent reality among caregivers of older adults with AD and has already been identified as an important predisposing factor for caregiver burden.⁷

These caregivers recognize that they devote most of their time to caring for the older adult and, as a result, neglect their own self-care. This condition places them in a constant conflict between moral obligation and personal sacrifice, assigning multiple meanings to the caregiving experience.²⁷

Life changes imposed by the accumulation of caregiving responsibilities lead many caregivers to abandon personal interests, projects, and needs, imposing significant restrictions on their personal lives. This reality is exemplified by the comment “I decided that I won’t have children, because I don’t want to have to take care of and worry about anyone else” (C5), which portrays caregiving as a traumatic experience capable of producing repercussions that go beyond daily life and influence decisions about the future.²¹

Regarding the difficulty of leaving the house due to the absence of someone who can assume care of the older adult, the literature points to social isolation and withdrawal from the community as frequent consequences of the caregiving process. The time devoted to care, combined with the need for constant supervision of the older adult with AD, limits caregivers’ social participation and restricts their lives beyond the caregiving context.²²

The fourth category, related to caregivers’ concerns and coping strategies, highlights the adaptive and resilient capacity of these individuals in the face of adversity. The relationship between caregiver and care recipient involves complex dimensions, marked by concerns, constant alertness, daily anxiety, and the accumulation of internal conflicts, which drive the search for coping strategies.^{6, 23}

A high prevalence of psychotropic use, especially antidepressants and anxiolytics, has been observed among informal caregivers, due to the frequent presence of depressive and anxiety symptoms in this group.²⁸ This finding indicates that some caregivers resort to conventional pharmacological therapies as a way of dealing with the emotional consequences of caregiving.

Integrative and complementary practices also emerge as potential strategies to support caregivers from a self-care perspective, including activities such as yoga, massage therapy, reflexology, meditation, and music therapy.²⁹ Although the literature does not identify specific practices as universally recommended, it emphasizes the importance of considering caregivers’ individual needs and preferences, as well as prior assessment by qualified professionals.

Research further underscores the relevance of including caregivers in support groups, which serve as spaces for exchanging experiences and knowledge among individuals who share similar realities. These groups can be essential for strengthening self-esteem and self-confidence, in addition to reducing social isolation and fostering a sense of belonging.²²

The process of emotional self-regulation and reframing of the experience was evident in the statement “I carried a huge bag of resentments and conflicts we had, but today I gave up carrying it” (C19). Assigning new values and meanings to caregiving enables changes in how internal conflicts and adverse situations are addressed, opening space for processes of re-signification even in the face of arduous tasks.

Acceptance of the condition of the older adult with AD emerges as a complex and challenging process, as it involves continuously confronting disease progression and associated cognitive and behavioral changes. Caregivers recurrently experience movements of construction, deconstruction, and reconstruction of meaning, which lead them to recognize, readapt, and adjust to a new reality, culminating, in some cases, in awareness and acceptance of the lived situation.¹⁴

The transformation of perceptions and meanings attributed to caregiving fosters reflection and enables a new understanding of the experience, as illustrated by the statement “when we accept and understand what is happening, everything becomes lighter” (C12). This shift may bring positive repercussions to the caregiving process.

From a positive perspective, some caregivers reported feelings of satisfaction with the role they perform, personal growth, emotional gains, and a perception of greater competence and control over their caregiving responsibilities. These elements may also contribute to strengthening faith, spiritual growth, and improvements in interpersonal relationships.^{13, 30} An increased sense of responsibility and reciprocity was likewise observed.

Faith and spirituality emerged as important mediators in caregivers’ perceptions of care, providing emotional support and confidence to face the future with greater serenity, thereby facilitating acceptance of the lived reality.³⁰ In this context, religious and spiritual support plays a relevant role in the lives of caregivers of older adults with AD, helping them cope with the adversities inherent to caregiving and constituting a potentially beneficial strategy.

As evidenced in the analyzed comments, caregiving for older adults with AD is described as challenging, worrying, endless, exhausting, demanding, emotionally involving, heavy, tiring, and draining, among other adjectives attributed to this practice. This underscores the imperative need to provide support to caregivers. The Brazilian Statute of the Older Adult (Law No. 10.741/2003), in Article 3, establishes it as the “obligation of the family, the community, society, and the State” to ensure protection and support for older adults in response to health-related demands, which inherently includes care for those who provide care. The findings of this study therefore reinforce the urgent need for specific public policies aimed at caregivers as well as social support programs and interventions that recognize the multidimensional complexity of caring for people with AD.

Within this framework, this study contributes by deepening the understanding of caregivers’ experiences through virtual environments, highlighting emotional, social, and subjective dimensions that do not always emerge in face-to-face investigations. By legitimizing virtual spaces as fields for scientific inquiry, the study expands the methodological scope of health research, demonstrating that social media platforms constitute rich and powerful environments for capturing sensitive and complex experiences. These spaces give visibility to voices that are often marginalized in traditional research and underscore the potential of the netnographic approach.

The results have direct implications for health care practice, as they point to the need to strengthen policies and actions focused on the emotional, social, and instrumental support of caregivers of older adults with AD. Health professionals and services should recognize the caregiver burden and psychological distress identified and implement strategies such as in-person and virtual support groups, continuing education focused on managing caregiving demands, guidance on self-care practices, and timely referral to mental health services.

The creation and maintenance of intersectoral support networks involving family, community, and public policies emerge as central elements for mitigating caregiver illness. Furthermore, the findings reinforce the importance of qualified listening practices and caregiver-centered interventions, recognizing caregivers as recipients of care themselves rather than merely task executors.

The methodological limitations of this study are inherent to the use of data derived from virtual environments. Digital platforms are characterized by high volatility, as content can be edited, added, or removed at any time, potentially compromising the stability and completeness of the analyzed records. The spontaneous nature of online interactions, although a valuable feature of netnography, may result in fragmented, imprecise, or unverifiable information, limiting the generalizability of the findings.

Similarly, self-report bias must be considered in social media posts, as participants may omit sensitive aspects of their experiences due to fear of exposure or social judgment. The analyzed sample was restricted to caregivers active on Instagram with public profiles, excluding individuals without access to the platform, with low digital engagement, or who prefer private virtual environments, thereby limiting participant representativeness. In addition, the cross-sectional nature of data collection precludes longitudinal follow-up of changes in caregivers’ challenges, perceptions, and coping strategies over time.

In this regard, future studies are recommended to expand the diversity of virtual environments investigated, including other social media platforms, specialized forums, and closed communities, in order to capture a broader range of experiences and perspectives. The use of complementary methods, such as interviews or focus groups, may enhance data triangulation, while longitudinal approaches could allow monitoring of changes over time. Investigations that consider the influence of sociodemographic, cultural, and religious characteristics on caregivers’ use of social media as well as comparisons between caregivers who use and those who do not use digital spaces, may further deepen the discussion.

Despite these limitations, they do not compromise the analytical relevance of the study. On the contrary, they reinforce that the results reflect the perceptions of a specific group of users engaged with the topic, offering qualified access to the singularity of experiences, meanings, and emotions constructed in this context, and making a significant contribution to understanding the phenomenon under investigation.

Final Considerations

The objective of exploring the challenges experienced by caregivers of older adults with AD through virtual interactions on Instagram was achieved. The study provided a comprehensive view of the difficulties faced by these caregivers in digital environments, highlighting the importance of social and emotional support in reducing burden, managing stress, and developing coping strategies that promote quality of life.

Health professionals play a fundamental role in implementing preventive actions aimed at caregivers by recognizing their vulnerabilities and limitations and by offering support and guidance, either individually or in group settings. This research contributes to the advancement of scientific knowledge by demonstrating the feasibility of netnography as a research method in health, presenting a replicable model for studying other chronic conditions and expanding the understanding of caregiver burden in its existential dimensions.

Future research should explore interventions based on digital technologies, evaluate the effectiveness of structured virtual support networks, and develop longitudinal studies that follow the evolution of caregivers’ needs over time. Finally, the shared responsibility for care among family, society, and the State in relation to older adults with AD is emphasized, along with the need to value caregivers, guarantee their rights, and promote specific policies and intersectoral and interdisciplinary actions directed toward this population.

Authors Contributions

Study design: Ananda Azevedo Santana e Rejane Santos Barreto. Data collection: Ananda Azevedo Santana, Lucas Benedito Fogaça Rabito e Endric Passos Matos. Data analysis and interpretation: Ananda Azevedo Santana, Rejane Santos Barreto e Simone Santos Souza. Manuscript writing: Ananda Azevedo Santana, Simone Santos Souza, Andrea dos Santos Souza, Lucas Benedito Fogaça Rabito e Endric Passos Matos. Critical review of the manuscript: Rejane Santos Barreto e Rafaely de Cassia Nogueira Sanches. Approval of the final version of the text: Rejane Santos Barreto, Andrea dos Santos Souza e Rafaely de Cassia Nogueira Sanches.

Conflict of interest

The authors declare no conflicts of interest.  

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Corresponding Author

Endric Passos Matos

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