Ethical dilemmas in the care of patients with Alzheimer’s disease and related dementias unable to give informed consent: positioning Lebanon within the Global North–South context

Abstract

Background

As dementia progresses, individuals with Alzheimer’s disease and related forms of dementia often lose decision-making capacity, raising complex ethical challenges related to autonomy, surrogate decision-making, dignity, privacy, and justice. This review examines the dilemmas in caring for patients who are no longer capable of providing informed consent, comparing Lebanon’s situation with those of countries across the Global North and South, and proposes practical, culturally grounded recommendations for improvement.

Objective

To conduct a comprehensive thematic review comparing international practices with Lebanon’s ethical, legal, and institutional approaches to caring for individuals with advanced dementia who lack capacity.

Methods

A systematic yet flexible review approach, guided by the PRISMA framework, was applied. Studies focusing on Alzheimer’s disease and other related dementias were retrieved from PubMed, Scopus, PsycINFO, Web of Science, and the Cochrane Library up to April 2025. A total of 121 studies, including 112 international and 9 from Lebanon, met the inclusion criteria. These included qualitative, quantitative, and policy sources. Studies were thematically analyzed for ethical relevance across five themes.

Results

Five major ethical themes emerged: surrogate decision-making, patient autonomy, surveillance and technology, legal frameworks, and cultural and economic factors. A clear North–South divide was observed, with countries in the Global North generally relying on formal legal safeguards, advance directives, and structured institutional ethics oversight. In contrast, Lebanon and comparable countries in the Global South often operated with informal, family-centered models, limited legal clarity, and minimal institutional ethics support.

Conclusion

Lebanon reflects broader Global South patterns: strong familial caregiving traditions, but inadequate legal and institutional frameworks to ensure dignity-based, ethically consistent care. This review proposes culturally sensitive reforms in law, public education, and ethics infrastructure to better protect the rights and dignity of individuals with advanced dementia.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12910-025-01277-3.

Introduction

Background

Alzheimer’s Disease is a progressive, chronic neurodegenerative condition that primarily affects older adults [1]. It causes severe cognitive impairment, with memory, reasoning, language, and decision-making capacity among the most significantly affected domains. As the disease advances, many individuals with Alzheimer’s Disease and related dementias (ADRD) lose the ability to comprehend, weigh, and authorize medical or personal decisions independently, making informed consent increasingly challenging [1].

When this capacity is lost, decision-making responsibility typically shifts to a surrogate, such as a family member, legal guardian, or healthcare professional, who is expected to act in the patient’s best interests [2]. However, this delegation generates complex ethical dilemmas, particularly around balancing the four core principles of biomedical ethics: respect for autonomy, beneficence, non-maleficence, and justice [1].

While the ethical dilemmas in surrogate decision-making and patient autonomy are shared globally, how they manifest and are managed depends greatly on the legal, institutional, and cultural context. Lebanon offers an important case study because it combines modern medical capacity with limited statutory protections [3], minimal institutional ethics infrastructure [4], and strong family and religious influences with economic constraints [5]. Understanding Lebanon’s situation helps clarify how ethical principles are applied in contexts where legal frameworks remain fragmented.

This context raises important questions: How are ethical principles such as autonomy, beneficence, non-maleficence, and justice applied to balance patient interests, family responsibilities, and legal uncertainty? Where does Lebanon stand compared to international practices across the Global North–South axis? And how can Lebanon strengthen its approach to surrogate decision-making for patients who can no longer provide informed consent?

This comprehensive review aims to thematically analyze the application of ethical principles in the care of individuals with ADRD who lack decision-making capacity and to compare these practices in Lebanon with international standards. Furthermore, it seeks to identify the legal, cultural, and systemic barriers to ethical care for ADRD patients in Lebanon and to recommend realistic, culturally grounded improvements for patient-centered, ethically consistent dementia care, based on insights from global literature and local specificities.

Methodology

This comprehensive review was conducted using an inclusive approach inspired by the PRISMA methodology (see Fig. 1) and encompassed both qualitative and quantitative studies, as well as relevant text-based and opinion literature. The review focuses on ADRD to reflect the broad spectrum of conditions that raise similar surrogate decision-making and ethical dilemmas.

Fig. 1.

PRISMA chart of the study screening process

Inclusion criteria comprised studies focusing on individuals diagnosed with ADRD or that used the broader term “dementia” where relevant, who could not provide informed consent. Eligible studies had to address surrogate or substitute decision-making, legal guardianship, or the role of caregivers specifically in the context of ADRD care, and explore ethical considerations directly relevant to this population, such as privacy, autonomy, surveillance, and legal or institutional frameworks. Given the overlap in capacity loss and surrogate decision-making challenges across dementia subtypes, broader dementia studies were included when findings were relevant to ADRD care.

Studies were excluded if they did not address ADRD or general dementia care relevant to capacity and surrogate decision-making, if they focused solely on the technical aspects of monitoring devices without an ethical component, or if they centered only on medical treatments without exploring ethical implications.

Data sources included PubMed, Scopus, Web of Science, PsycINFO, and the Cochrane Library. The literature search covered publications from database inception through April 2025. The search strategy combined relevant keywords and Medical Subject Headings (MeSH) where appropriate, using Boolean operators to capture variations in terminology. Search terms included: “Alzheimer’s Disease,” “related dementias,” “surrogate decision-making,” “substitute decision-making,” “informed consent,” “proxy consent,” “caregivers,” “legal guardianship,” “ethical dilemmas,” “autonomy,” and “privacy.” These were combined using Boolean operators such as AND and OR.

All retrieved citations were imported into Covidence systematic review software to manage the screening, inclusion, and exclusion process in a transparent and replicable manner. Title and abstract screening, full-text review, and resolution of discrepancies were conducted independently by two reviewers, with conflicts resolved by consensus. The PRISMA flow diagram (Fig. 1) was generated using Covidence to illustrate the study selection process.

Following study selection, a thematic extraction process was then applied using Excel to organize the included studies into two primary categories: a global set of international studies and a subset of studies based in Lebanon. Each study was systematically categorized by article type, participant demographics, country of origin, reported results, and the main domains addressed. The final five thematic domains were identified through an inductive coding process carried out by the authors, who also assigned the specific titles to each domain to best reflect the patterns and issues found in the data.

Results

Overview of global literature

A total of 112 global studies were included, encompassing various designs: qualitative interviews, cross-sectional surveys, mixed-methods research, and conceptual analyses (Table 1). In presenting these results, we have organized findings along the Global North–South axis to illustrate key differences in ethical practices, infrastructure, and care models as reported in the included studies. These studies originated from the Global North (EU, USA, Canada, Australia, Japan) and the Global South (India, Brazil, South Africa, parts of the Middle East and North Africa, and Southeast Asia) (Fig. 2). For this review, the classification of countries as “Global North” or “Global South” is based primarily on economic development and healthcare infrastructure levels rather than strict geographic location; for example, countries like Japan and Australia are grouped with the Global North to reflect their high-income status and advanced systems. Care has been taken to ensure that any comparative statements are directly supported by the findings from the referenced studies.

Table 1.

Distribution of the articles according to type and origin

Type of article	Global North	Global South	Lebanon
Case Report	1	0	1
Commentary/Policy Review	1	1	0
Consensus statement	1	0	0
Cross-Sectional Survey	2	1	3
Delphi study	1	0	0
Descriptive Study	0	1	0
Editorial	1	0	1
Epidemiological Economic Study	0	2	0
Ethical Argument	6	3	1
Ethnographic Study	1	0	0
Experience report	1	1	0
Grounded Theory Study	1	0	0
Guideline Development	1	0	0
Intervention Study	1	0	0
Legal review/study	4	3	1
Mixed-Methods Study	3	1	0
National Guidelines	1	0	0
Observational Cohort Study	1	0	1
PhD Thesis	0	1	0
Philosophical Argument	1	1	0
Pilot Study	1	0	0
Policy Analysis	3	1	0
Q-Method Study	1	0	0
Qualitative Case/multi-case Study	20	5	0
Retrospective analysis	0	1	0
Review	18	8	0
Sociological study	0	1	0
Survey Study	1	0	0
Thematic Analysis	4	1	0
Workshop-Based Study	1	0	0
Total	77	35	9

Fig. 2.

World map showing the distribution of the studies

Thematically, the studies covered five primary themes (Fig. 3):

Fig. 3.

Distribution of Ethical Themes in Alzheimer’s Care Research

1. Surrogate Decision-Making and Consent Capacity.

2. Patient Autonomy and Support.

3. Technology and Surveillance in Dementia Care.

4. Legal and Institutional Frameworks.

5. Caregiver Experience and Cultural Factors.

Theme 1: Surrogate Decision-Making and consent capacity

In countries of the Global North, surrogate decision-making is often supported by legal guidelines and institutional protocols [1]. However, as Barth et al. (2024) illustrate through an ethnographic study in Germany, much of the practical decision-making still relies on frontline caregivers’ moral interpretations and informal norms when managing challenging behaviors in dementia care [6]. Similarly, David et al. and related studies in Australia highlight that while formal surrogate decision-making frameworks exist under national legislation such as the Mental Capacity Act, in practice only a minority of residents can give informed consent, and assessments of capacity and best interests are not always consistently applied in daily care [7]. Rosen et al. further demonstrate that practical constraints, including staff efficiency pressures, limited ethics training, and the absence of advance care planning, can weaken the intended protections of surrogate frameworks [8]. Taken together, this evidence suggests that institutional and real-world factors continue to pose significant challenges to surrogate decision-making in dementia care, even in well-regulated settings.

Hall et al. explored how the use of monitoring technologies in long-term dementia care raises ethical tensions, particularly between promoting safety and respecting resident autonomy [9]. Their findings highlight the importance of avoiding assumptions about capacity and the need for clear procedural safeguards to ensure that decisions made on behalf of adults lacking capacity remain legally and ethically sound. While they discuss practical challenges in line with the Mental Capacity Act (2005) principles [10], detailed legal interpretation should be supported by referencing the Act and its Code of Practice directly.

In contrast, the Global South illustrates a more informal approach to surrogate decision-making, often shaped by family norms or physician authority. Costa et al. in Brazil showed that only 25% of physicians emphasized the importance of listening directly to patients, even when family members or legally appointed representatives were present, while 50% lacked awareness of applicable legal procedures [11]. Hegde et al. in India revealed that families often rely on intuition or religious principles to guide surrogate decisions, bypassing legal documentation altogether [12]. A theoretical analysis by Ujewe highlights the absence of clear ethical and legal frameworks for just healthcare in Nigeria, emphasizing the need for culturally grounded guardianship and surrogate decision-making models to guide care transitions and protect patient rights (https://clok.uclan.ac.uk/16731/1/16731%20Samuel%20Ujewe%20%20Final%20e-Thesis%20%28Master%20Copy%29%20January%202016.pdf). To the contrary of these trends, a study from India by Baruah et al. found that carers evaluated doctors by their willingness to share decision-making, favoring collaborative rather than strictly paternalistic approaches [13].

Several studies highlighted the burdens faced by both informal surrogates and professional caregivers involved in dementia care across both regions. In a 2024 study, Ibrahim et al. examined informal caregivers of Alzheimer’s patients in Egypt and reported that the total burden among informal caregivers was relatively high (64.71 ± 26.86%) [14]. Moreover, less than one-tenth (8%) of informal caregivers had a good quality of life, whereas more than half (62%) had an average quality of life. Likewise, Balsinha et al. found that Portuguese primary care teams faced significant barriers to coordinating dementia care, including unclear role definitions, limited dementia-specific training, and a lack of systematic teamwork within multidisciplinary teams [15].

The dataset shows a consistent divide between regions: in Global North contexts, surrogate decision-making for dementia care is generally supported by formal legal and ethical frameworks in principle; however, evidence shows that their practical application is often inconsistent and relies heavily on frontline staff’s moral reasoning and informal norms. In contrast, Global South contexts tend to rely more on family norms, cultural expectations, or ad hoc institutional practices, which can leave ethical responsibilities fragmented and underregulated. Yet across both settings, surrogate decision-makers frequently operate in emotionally charged situations without adequate training or structured support. This shared vulnerability highlights the global need for ethics education and clear, regulated pathways for surrogate decision-making.

Theme 2: Patient autonomy and support

Respect for autonomy is a cornerstone of ethical dementia care, but how this principle is put into practice differs significantly between higher- and lower-resource settings [16]. In the Global North, there is growing emphasis on upholding autonomy and personhood even in moderate stages of ADRDs through supported decision-making models [16, 17]. Supported decision-making means providing practical help such as clear information, communication aids, or trusted persons to enable individuals to express their preferences and participate in decisions as much as possible [18]. This contrasts with substituted decision-making, where a surrogate or legal guardian makes decisions entirely on the person’s behalf, guided by best interests or prior wishes [19]. Evidence shows that supported decision-making better preserves personhood and aligns with ethical and human rights principles, including Article 12 of the UN Convention on the Rights of Persons with Disabilities [20]. Large-scale survey data by Clarke et al. illustrate that many people in the UK and USA wish to make their own decisions about life-sustaining treatment or dying peacefully, even when decision-making capacity is impaired, demonstrating strong public support for preserving autonomy through advance care planning and supported decision-making frameworks [21]. Similarly, Martins Pereira et al. highlight that in Portuguese palliative care settings, patients and families strongly value having their preferences respected at the end of life, consistent with European Council guidance, but they also identify that actual implementation depends on how well ethical guidelines are embedded into local care practices and how decisional responsibility is shared within teams [22]. In parallel, Trachsel et al. point out that for patients with Alzheimer’s or related dementias, fluctuating capacity adds significant complexity, yet respecting autonomy remains an ethical imperative requiring careful, time-specific assessment and often greater reliance on advance directives and surrogate input [23]. Together, these studies show that people want clear influence over end-of-life decisions even as capacity declines, underscoring the need for robust frameworks to uphold personhood. Piers et al. found that older adults and caregivers often want to remain involved in planning care despite borderline capacity [24]. Helgesen et al. and Heggestad et al. illustrate how daily practices that ensure people feel seen and heard help maintain self-worth and autonomy [25, 26]. Similarly, Bravo et al. showed that training staff in structured protocols can embed patient values into care plans [27], while Xie et al. found that caregivers in rural Hispanic communities wanted clear information and an active role in decisions [28]. Finally, research from Belgium and the United Kingdom emphasizes ‘relational autonomy,’ recognizing that people’s ability to make autonomous choices is shaped and sustained by supportive relationships and dialogue, rather than dismissed due to cognitive decline [29, 30].

However, in many Global South contexts, individual autonomy, which is often viewed as morally paramount in Western bioethics, is reinterpreted or given less priority compared to family-centered or physician-led decision-making. For example, Baruah et al. in India found that family members frequently believed shielding patients from a full diagnosis was more ethical than disclosing it, prioritizing family harmony and perceived patient welfare over strict autonomy [13]. Similarly, Michel et al. reported that in South Africa, over 60% of healthcare staff did not formally assess patients’ decision-making capacity before planning care, citing resource limitations and training gaps [31]. In Nigeria, studies highlight a strong preference for paternalistic decision-making, where autonomy is often viewed as a Western concept misaligned with communal responsibility and deference to medical authority (https://clok.uclan.ac.uk/16731/1/16731%20Samuel%20Ujewe%20%20Final%20e-Thesis%20%28Master%20Copy%29%20January%202016.pdf) [32]. While these studies do not focus specifically on Alzheimer’s or dementia care, they illustrate broader cultural and systemic patterns that likely shape surrogate decision-making for patients with cognitive impairment. The authors argue that developing culturally rooted clinical ethics support services should be a top priority for Nigeria and similar African contexts.

Interestingly, several Northern studies identified ethical tensions when respecting autonomy conflicted with other principles. For example, Beattie et al. found that honoring patient choices sometimes led to undertreatment or safety risks, especially for patients who refused interventions but could not reliably assess the consequences [33]. Both the French professional guidelines and Lhermite et al. stress that autonomy must be balanced with protection, safety, and dignity, especially in institutional dementia care settings (https://www.has-sante.fr/upload/docs/application/pdf/2012-04/accompagnement_etablissement_medico_social.pdf) [34]. The national recommendations highlight that respect for a person’s dignity and choices should guide care at every stage but must be weighed against the need to prevent harm when cognitive decline impairs capacity (https://www.has-sante.fr/upload/docs/application/pdf/2012-04/accompagnement_etablissement_medico_social.pdf). Lhermite et al.’s study further shows how French laypeople and professionals often grapple with the ethical tension between respecting residents’ wishes and ensuring beneficence when behavior poses risks, emphasizing the need to reduce conflicts between autonomy and safety [34].

Overall, a pattern emerges: the Global North is more invested in nuanced, supported models of autonomy, while in the Global South, autonomy is often subordinated to collective values or practical constraints. Yet both regions struggle with the realities of upholding autonomy as cognitive decline progresses, highlighting a global need for culturally adaptive, ethically grounded shared decision-making frameworks.

Theme 3: Technology and surveillance in dementia care

The use of technology in dementia care, especially surveillance tools, has become a flashpoint for ethical debates around privacy, consent, safety, and dignity [35]. Typical examples include GPS tracking devices to monitor patients’ location, wearable sensors to detect wandering or falls, and in-room cameras that can monitor movement but, depending on the system, may also capture audio or conversations if not carefully restricted. In the Global North, assistive and monitoring technologies are increasingly integrated into long-term dementia care settings, but the degree of ethical oversight and governance varies widely. For example, Mulvenna et al. highlight how caregivers in the UK and Europe use surveillance and tracking technologies to enhance safety, while pointing out that oversight differs depending on whether monitoring is informal (by families) or formal (by institutions) [36]. Robillard et al. emphasize that although smart systems and AI-driven tools are broadly available across high-income settings, adoption remains uneven due to patchy governance frameworks and ethical safeguards [37]. Huang et al. show how institutional settings in East Asia use technological monitoring and restrictive measures but reveal that oversight and respect for resident autonomy often depend on local cultural norms and staff practices [38]. Digby and Bloomer demonstrate that even in modern geriatric facilities in Australia, patients and carers have mixed views on environmental surveillance and design features, with varying levels of staff oversight shaping how privacy and autonomy are balanced [39]. Read et al. illustrate how UK and European care systems increasingly include people with dementia in planning for surveillance or tracking aids, but actual oversight and responsiveness to individual wishes depend heavily on institutional cultures and family involvement [40]. Finally, Grewal et al. add valuable insight by showing how Canadian caregivers use off-the-shelf technologies, such as smart home devices and wearables, to monitor loved ones at home, yet they highlight barriers like privacy concerns, lack of knowledge, and inconsistent support that influence how technology is used and overseen in informal care contexts [41]. Together, these studies show that while the infrastructure for technological integration exists, the level of oversight, consent, and ethical safeguards varies significantly across settings and care models.

Echoing these concerns, Vandenberg et al. and Boumans et al. found that staff in Dutch nursing homes valued surveillance tools for enhancing safety but worried they could not reliably prevent falls, did not always trigger a rapid response, and risked violating privacy [42, 43]. Similarly, Vollmer Dahlke et al. highlight that intelligent assistive technologies are often welcomed for added security but frequently fail to deliver timely interventions and can undermine resident autonomy and privacy if not carefully governed [44]. Van der Weide et al. emphasize that while monitoring may support safety, it cannot replace attentive human care, and they document staff and families worrying that surveillance alone does not prevent falls and may intrude on dignity [45]. Vinay and Biller-Andorno reinforce these points at the policy level, noting that national dementia strategies increasingly recognize the ethical need for safeguards to ensure that surveillance and remote monitoring do not erode privacy or create a false sense of security when practical response gaps remain [46]. Other studies echo these tensions in practice: Müller et al. found that German caregivers supported GPS tracking when devices were simple and beneficial, but ethical concerns about autonomy persisted (https://www.scitepress.org/papers/2017/62830/62830.pdf). Likewise, Frisardi et al. and Landau et al. describe how GPS tracking can allow patients to walk freely in their neighborhood but emphasize that ethical approval and close caregiver oversight are essential to prevent misuse [47, 48].

By contrast, the Global South reflects an entirely different pattern: interest in assistive and monitoring technologies for dementia care is growing, access remains limited, practical adoption is sparse, and the ethical governance frameworks are still emerging [49]. Agrawal et al. highlighted that in India, families and caregivers sometimes rely on simple GPS tracking devices or wearable locators as a practical means to manage wandering and elopement risk in people with dementia. However, they point out that these tools are often used without clear ethical guidelines or formal consent procedures, and mainly as a last resort when other strategies fail to ensure safety [50]. In a study from Nigeria, care workers reported a total lack of legal or ethical guidelines on surveillance, creating confusion even about the use of basic tools like bed alarms. Some respondents described cases where hidden cameras were installed in residents’ rooms without their knowledge or permission [51].

One mid-ground case, Bantry-White E (2018), outlined an ethical framework for implementing electronic monitoring tools. Although based in Ireland, its suggestions were meant to apply globally: participatory planning, ongoing consent evaluation, and the inclusion of both carers and patients in device deployment [52]. These findings demonstrate a North–South divide in both infrastructure and ethics: the North debates how to use technology ethically, while much of the South lacks the policy groundwork to determine if or when such use is acceptable. Notably, however, the ethical tensions, including privacy loss, dehumanization, and over-monitoring, were shared across settings, highlighting a universal dilemma about balancing safety with dignity for this vulnerable population.

Theme 4: Legal and institutional frameworks

A robust legal and institutional framework is essential for ensuring ethical, consistent, and patient-centered decision-making in dementia care. This includes legislation governing informed consent, advance directives, guardianship, healthcare proxies, and the operation of ethics committees [53–56]. For example, Tetrault et al. emphasize that advance care planning and informed consent procedures must be firmly embedded within care structures to protect patient autonomy as decision-making capacity declines [53]. Schmidhuber et al. demonstrate that without clear legal guidance and adequate public education, advance directives may fail to achieve their intended role in upholding patient wishes [54]. Rutenkröger highlights the ethical imperative for well-designed shared decision-making frameworks and professional consultation to ensure that advance directives retain their moral authority when capacity is lost [55]. Lauridsen et al. further argue that robust institutional mechanisms, including guardianship laws and ethics committees, are critical for navigating the complex tensions between precedent autonomy and the patient’s best interests in advanced dementia [56]. Together, these findings illustrate why coherent legal and institutional structures encompassing informed consent, advance directives, guardianship arrangements, healthcare proxies, and ethics oversight are fundamental to upholding ethical and patient-centered dementia care. At the same time, the presence or absence of these structures significantly influences how surrogate decisions are made and how ethical dilemmas are resolved. However, it is important to recognize that legal frameworks alone provide only a baseline: what is legally permissible or required may still fall short of what is ethically acceptable. Ethical responsibilities in dementia care often demand a higher standard of attentiveness, respect for personhood, and commitment to the patient’s dignity than the law alone can guarantee.

Globally, the literature illustrates that legal and institutional frameworks for dementia-related decision-making vary considerably. In the Global North, particularly in countries like the United States, legal pathways to uphold patient autonomy are generally well-defined and institutionalized. For example, mechanisms such as advance directives, durable powers of attorney for healthcare, and guardianship courts are established under state legislation to support surrogate decision-making when capacity is lost [57]. Jennings et al. (2019) found that within a comprehensive dementia care program, 64% of enrolled patients had documented advance care preferences, which helped guide end-of-life decisions and reduce family conflict, yet they also noted that the general uptake of advance directives among people living with dementia remains relatively low [58, 59]. The Patient Self-Determination Act (1990) further obliges U.S. healthcare institutions to inform patients of their legal right to make advance care decisions but does not provide specific guidance on how patients should complete these documents or navigate complex decisions as dementia progresses [60].

In France, the Leonetti Laws formalize end-of-life rights and the use of advance directives [61, 62], while Guerrier et al. described how French hospitals convene ethics committees for complex cases [63]. Germany recognizes binding healthcare proxies and guardianship instructions; Biermann et al. found these tools help preserve patient autonomy, especially when combined with institutional ethics consultation [64]. In Canada, provincial laws such as Ontario’s Health Care Consent Act specify who may act as a substitute decision-maker (https://www.ontario.ca/laws/statute/96h02; https://www.ontario.ca/laws/statute/92s30). In Denmark, the CARE intervention demonstrated that targeted ethics training improves ethical self-efficacy among dementia care professionals with initially low confidence, although not for all [65]. More broadly, Olejarczyk et al. emphasized that patient rights may be supported by legal principles, yet gaps remain between legal rights and daily ethical practice [66].

In Finland, Raivio et al. reported that 37.8% of home-dwelling people with Alzheimer’s living with a spouse had a financial power of attorney, but only 4.3% had a court-appointed guardian. Only 9.9% had discussed legal planning with a physician, despite 47.9% wanting to do so, highlighting the need for earlier, clearer conversations to preserve autonomy and reduce caregiver stress [67]. In Spain, Calcedo et al. outlined ‘incapacitation’ procedures and consent hierarchies, distinguishing full guardianship from support-based frameworks to balance autonomy, safety, and legal clarity [68, 69]. In Sweden, Sandberg et al. noted three decision-making themes for home care staff: involving the person, acting in their best interest, and questioning the viability of consent [70]. Similarly, Östlund et al. found that caregivers relied on empathy and imagination when guiding ethical decisions for dependent patients [71].

Across these countries, institutions are required or encouraged to:

• Provide written information about consent and surrogate roles.

• Assess capacity formally using standardized tools.

• Document surrogate discussions.

• Consult hospital ethics committees when disputes arise.

In many low- and middle-income countries, comprehensive legislation for surrogate decision-making in incapacity remains absent, fragmented, or poorly enforced. Where frameworks exist, they are often not dementia-specific, poorly implemented, or unknown to professionals and families. For example, while India’s Mental Healthcare Act (2017) includes advance directives and nominated representatives (https://www.indiacode.nic.in/bitstream/123456789/2249/1/A2017-10.pdf), Hurzuk et al. found that even when policies exist, confusion and low awareness about dementia-specific legal rights persist, limiting practical use [72]. Brijnath et al. illustrate that in urban India, dementia care remains largely informal and shaped by strong family duty norms, with minimal professional training or grassroots support, forcing families to improvise care decisions without clear ethical guidance [73]. Dijkxhoorn et al. further highlight that persistent stigma, embarrassment, and limited awareness undermine formal pathways, a pattern highly relevant for dementia in low-resource contexts [74].

This challenge is echoed across other settings. Siette et al. show that deep-rooted stigma and language barriers in culturally diverse communities discourage families from using advance care planning, highlighting the need for culturally tailored training and outreach [75]. Jakobsen and Sørlie demonstrate that even in well-resourced systems, staff may feel ethically unprepared and unsupported, leading to inconsistent practice around autonomy and dignity [76]. Tsoh et al. compared China, Japan, Thailand, and Australia, noting how guardianship is legally distinct from a healthcare power of attorney and how clarity varies across contexts [77].

In Brazil, Sudo et al. explain that despite the Civil Code’s functional approach to guardianship, practical barriers, like the lack of validated capacity assessment tools, often lead to defaulting to plenary guardianship rather than nuanced, patient-specific choices [78]. Dooley et al. similarly observe that in urgent care, decisions often reflect immediate medical needs and institutional policy rather than advance directives or legal frameworks [79]. In Nigeria, Ozota et al. note the absence of binding legislation for healthcare proxies for cognitive impairment, leaving patients exposed to inconsistent care and staff vulnerable to moral distress [80]. In South Africa, the National Health Act provides for informed consent but does not clearly define substitute decision-makers for adults with permanent incapacity [81]. Finally, Hochwald et al. found that despite being in high-income country settings, practitioners mirrored the situation in Global South countries and frequently relied on family caregivers as de facto surrogates, even when these lacked formal legal authority or clear ethical legitimacy under existing laws [82].

Taken together, these examples underscore that without addressing stigma, strengthening workforce training, and building robust legal and institutional safeguards, frameworks for surrogate decision-making in dementia care risk remaining underused or ineffective in practice.

Overall, legal infrastructure remains one of the clearest indicators of the North–South ethical divide. In the Global North, laws and institutional supports help standardize care and guide professionals through difficult decisions. Gjellestad et al. [83] showed that statutory guidelines help nurses handle resistance to care consistently; Smebye et al. [84] and others noted that clear laws can support balancing autonomy with beneficence and non-maleficence, but do not erase moral distress in family conflicts or end-of-life choices. Backhaus et al. [85] emphasized that regulation helps standardize care quality, and Rostad et al. [86] showed how formal care ethics frameworks embedded in policy can guide day-to-day practice, yet the emotional and moral tensions persist. Ethics committees, ombudsman offices, and clear legal recourse can reinforce these systems, but literature on end-of-life care consistently shows that uncertainty and conflict remain.

By contrast, in many low- and middle-income countries, comprehensive laws or guidelines for surrogate decision-making may be absent, fragmented, or inconsistently enforced. Where legal frameworks do exist, they often lack dementia-specific provisions or remain unknown to professionals and families, leaving families and providers to rely heavily on informal consensus, cultural traditions, or discretionary physician judgment. This patchwork approach can place significant moral and practical burdens on caregivers and institutions and heighten the risk of inconsistent care or the erosion of patient rights.

To bridge the gap between formal legal frameworks and everyday ethical practice, several studies recommend concrete reforms. De Sabbata (2020) [87] proposes aligning national laws with the UN Convention on the Rights of Persons with Disabilities to shift from substitute to supported decision-making models. The International Summit on Intellectual Disability and Dementia [88] calls for participatory governance, with direct involvement of people with intellectual disability and dementia in research and policy. Bentwich et al. [89] highlight how caregivers’ views on autonomy and dignity vary culturally, underscoring the need to design frameworks that respect cultural and religious values yet balance them with universal human rights. We endorse these principles, culturally adaptable frameworks, participatory governance, and inclusive research as critical directions for future policy and practice. However, we stress that integrating cultural or religious values must not come at the cost of undermining patient autonomy and dignity.

Theme 5: Caregiver experience and cultural factors

Cultural and religious values profoundly shape how dementia care is delivered and how ethical conflicts are resolved, particularly in countries of the Global South. Bentwich et al. describe the views of Muslim caregivers in Pakistan and Egypt, finding that decisions were guided more by religious teachings and familial honor than by formal medical ethics [89]. In India and China, family-based and harmony-oriented decision-making remains culturally significant, as elders often defer major health decisions to adult children or the wider family network. Although these studies do not focus exclusively on Alzheimer’s disease, they illustrate the broader cultural context in which surrogate decision-making occurs, highlighting the primacy of family, elders, and sometimes spiritual leaders in guiding treatment pathways that inevitably shape dementia care too. For example, the World Alzheimer Report describes how families in many Asian contexts manage disclosure carefully, often choosing not to fully inform the person with dementia to protect them emotionally, reflecting a norm of non-disclosure rooted in filial piety and collective well-being (https://www.alzint.org/u/WorldAlzheimerReport2019.pdf). Caldwell et al. found that Chinese caregivers emphasized family duty and often delayed nursing home placement for a relative with dementia due to collective disagreement, showing how collective family consensus overrides individual wishes when needed [90]. Sharma and Kemp illustrate that in Indian families, the practice of seva (filial piety) continues to guide support exchanges and caregiving decisions, reinforcing elders’ dependence on adult children and co-residence as an expression of respect and duty [91]. Chen and Fan explain how the Confucian moral framework in China underpins a family-based, harmony-oriented bioethics, where the family remains the primary unit for critical medical decision-making, with patients often shielded from distressing information to maintain psychological balance [92]. Taken together, these cultural frameworks emphasize protection, filial duty, and family harmony, often elevating collective decision-making and non-disclosure as morally preferable to full individual autonomy.

In the Global North, while cultural sensitivity is encouraged, ethical reasoning is typically rooted in individual rights and institutional codes. For example, Kerbaş et al. demonstrated that staff in Germany were trained to recognize and respect spiritual beliefs while adhering to formal ethical policies that prioritize patient autonomy (https://www.england.nhs.uk/wp-content/uploads/2021/05/HBN_08-02-1.pdf) . Kolapo et al. discussed culturally competent mental health commissioning and person-centered care frameworks for diverse communities (https://www.lenus.ie/bitstream/handle/10147/624752/53657-IASW%20Christmas%20Journal%202018-A5-V4.pdf) ; however, these contributions address mental health more broadly and are not Alzheimer’s- or dementia-specific. This highlights an important gap in condition-specific evidence on how culturally competent approaches are integrated within dementia care in high-income contexts.

A growing body of authors, including De Sabbata (2020) on the UN Convention on the Rights of Persons with Disabilities framework [87], Watchman et al. (2019) on participatory ethics for people with intellectual disability and dementia [88], and Bentwich et al. (2018) comparing formal caretakers’ approaches across cultures, argue that ethical frameworks must be culturally adaptive yet remain aligned with universal human rights standards [89]. Similarly, the UK’s Health Building Note 08 − 02 (https://www.england.nhs.uk/wp-content/uploads/2021/05/HBN_08-02-1.pdf) and Houston et al. (https://www.lenus.ie/bitstream/handle/10147/624752/53657-IASW%20Christmas%20Journal%202018-A5-V4.pdf) underscore the importance of culturally sensitive and dementia-friendly design principles, demonstrating how care environments can support identity and dignity through appropriate environmental cues and layouts. The article by Houston et al. in the Irish Social Worker journal highlights the need for reflexivity in practice, urging social workers to critically examine their own biases and cultural assumptions to bridge cultural and relational differences in care ethics (https://www.lenus.ie/bitstream/handle/10147/624752/53657-IASW%20Christmas%20Journal%202018-A5-V4.pdf). Kolapo further argues that culturally competent commissioning is inseparable from person-centered care and must actively embed cultural and religious considerations into service design and delivery [93]. Tekbaş et al. illustrate that integrating religious beliefs into clinical practice is essential for truly participatory and ethical care, reinforcing the call for models that respect spiritual diversity while upholding legal safeguards [94]. Together, these insights show that reflexivity and cultural responsiveness must shape not only physical spaces but also everyday practice and policy in dementia care.

Ultimately, this theme highlights a spectrum: in many low- and middle-income settings, local cultural norms and family traditions often function as the primary source of ethical guidance, while in higher-income contexts, culture tends to shape or adapt the application of formal legal codes and institutional standards. A globally relevant ethics of Alzheimer’s care must navigate and reconcile these different approaches, ensuring that patient dignity and autonomy are protected while respecting diverse cultural and moral landscapes.

Results from Lebanon-Based literature

A total of 9 studies were identified that focused specifically on dementia care, decision-making, or ethical frameworks in Lebanon. These included cross-sectional surveys, editorials, case studies, and modeling analyses. Among the estimated 1,329,729 individuals with dementia in Arab countries, Lebanon had the highest prevalence at 4.88%. Lebanon’s dementia care cost was 0.44% of GDP, the highest in the region [5].

Unlike the global dataset, Lebanese studies are fewer in number and less empirically dense; however, they provide valuable insights into the ethical tensions, cultural pressures, economic constraints, and legislative gaps that uniquely shape Alzheimer’s care in Lebanon. The studies are grouped thematically below.

Theme 1: Surrogate Decision-Making and consent capacity

In the Lebanese context, surrogate decision-making is widely practiced but remains legally ambiguous. Hammoud et al. explored shared decision-making in long-term care planning involving caregivers and medical professionals [95]. Although caregivers frequently consulted physicians, decisions were primarily driven by family consensus, often excluding the patient. Many patients asked questions but exhibited a form of reverse paternalism, a pattern where patients choose to transfer decision-making authority back to families or physicians, with 28% relinquishing decisions entirely and 38% deferring to doctor recommendations. The study also revealed limited awareness of informed consent and patient autonomy, with formal guardianship arrangements and advance directives rarely implemented.

A related example, although outside the ADRD context, illustrates how these informal practices play out in complex cases. Arawi et al. describe how a child with complex neurological symptoms was cared for at the American University of Beirut Medical Center, where the family and medical team jointly decided to withdraw aggressive treatment after extensive bedside ethics consultations and dialogue with religious authorities [96]. This case shows how, in Lebanon, serious medical decisions, even those involving life support, often unfold through informal trust and cultural deference to medical authority rather than structured legal or institutional pathways. While this scenario involves a pediatric patient, where parents naturally make decisions based on best interests rather than substituted judgment, it still highlights broader systemic gaps: the lack of clear legal safeguards, formal surrogate pathways, and consistent ethics committee involvement likely affects decision-making for other vulnerable populations too, including adults with dementia.

Theme 2: Patient autonomy and support

Studies suggest that autonomy in dementia care is inconsistently respected in Lebanon. A cross-sectional survey of 254 Lebanese adults revealed poor public understanding of Alzheimer’s disease: 61% had low knowledge scores, and only 17% were aware of advance directives [97]. This lack of public awareness directly impacts patient autonomy, as families are often unprepared for the ethical challenges of consent loss. Another cross-sectional observational study by Chaaya et al. showed that caregivers of dementia patients reported decisions were frequently made without consulting the patient, even in early disease stages [98]. The Zarit Burden Interview (ZBI) scores were highest among those providing hands-on care, suggesting emotional overload and decision fatigue, which may further marginalize patient participation [98]. One way to address this is through supportive decision-making, which differs from substituted or best interest decisions: supportive decision-making helps people with dementia participate in choices for as long as possible by providing help such as communication aids or trusted persons. Unlike substituted judgment, which means a surrogate decides based on what the patient would have wanted, or best interest, which means deciding what maximizes the patient’s welfare when their wishes are unknown, supportive decision-making actively maintains the patient’s voice in decisions to the greatest extent possible.

Theme 3: Technology and surveillance in dementia care

Lebanese studies addressing technology and surveillance are scarce. However, an editorial by Arawi et al. raised concerns about the growing use of unregulated surveillance tools in private institutions (https://www.aub.edu.lb/fm/shbpp/Documents/New-Code-of-Medical-Ethics-text-ENGLISH-.pdf) [99]. Although surveillance is often intended to enhance safety, it is frequently introduced without ethical review or informed consent, particularly in lower-resourced facilities, where families may feel pressured to accept any available form of monitoring. The editorial called for the Ministry of Public Health to issue national guidelines on the use of surveillance in elderly care settings, especially those housing patients with severe cognitive impairment [99].

Theme 4: Legal and institutional frameworks

One of the most critical findings across Lebanese studies is the absence of any enforceable legal framework for surrogate decision-making, guardianship, or advance directives. For example, Kerbage et al. emphasized that Lebanese civil law lacks statutes specific to psychiatry, incapacity, or healthcare consent [3]. They note that this legal gap is partly due to the coexistence of multiple sectarian personal status laws, which together do not comprehensively address modern ethical dilemmas in neurodegenerative disease. However, this is context-specific and does not imply the same pattern in all countries. The Lebanese code of medical ethics, maintained by the Lebanese Order of Physicians, does offer professional ethical guidance for clinicians, but this code is not legally binding or enforceable in the same way as statutory law. Furthermore, Elbejjani et al. criticized the lack of hospital ethics committees empowered to resolve surrogate conflicts or refer disputes to judicial review. Without such institutional support, decisions in dementia care are typically made on a case-by-case basis by attending physicians, which can lead to inconsistent outcomes [4].

Theme 5: Caregiver experience and cultural factors

Lebanon’s ongoing economic crisis and cultural emphasis on family solidarity further complicate dementia care. Qassem et al. projected a doubling of dementia prevalence in Lebanon by 2040, warning that the current healthcare infrastructure is not equipped to manage the economic, ethical, or clinical demands of this increase [5]. The authors expressed concern that economic hardship was leading to informal institutionalization, where families relinquish care responsibilities without proper oversight. The article argued that without state funding or ethical regulation, dignity and autonomy are compromised by necessity. Hamieh et al. revealed that 48% of surveyed physicians had made unilateral care decisions for patients with dementia, citing “lack of family engagement or capacity,” yet none reported consulting legal advisors or ethicists beforehand [97].

Synthesis of Lebanese findings

The available Lebanese literature indicates that the ethical landscape of dementia care remains fragmented and inconsistent. Decision-making processes are frequently shaped by economic pressures, emotional burden, and prevailing cultural norms, rather than by statutory requirements or enforceable ethical standards. In comparison to the Global North, Lebanon lacks key legal instruments such as clear provisions for surrogate decision-making, guardianship, and advance consent, as well as institutional mechanisms like ethics committees and ombuds services that can ensure accountability and consistency in practice. In comparison to the Global South, Lebanon shares several common constraints, including a strong reliance on family networks, significant religious influence, and limited regulatory oversight. However, Lebanon’s pluralistic legal system, shaped by multiple overlapping sectarian personal status laws, creates an additional layer of complexity that hinders the development and implementation of uniform, coordinated reforms in dementia care.

Discussion

This review explored the complex ethical dilemmas in caring for Alzheimer’s patients who are no longer able to provide informed consent, highlighting how real-world practices often fall short of ethical ideals. Beyond mapping the five core themes, this synthesis illustrates the persistent gaps between law, ethics, and daily decision-making, especially in settings like Lebanon, where modern medical capacity exists alongside fragmented legal and institutional oversight. These findings point to the urgent need for context-sensitive legal reforms, better ethics education for healthcare professionals, and participatory structures that genuinely include patients and families in surrogate decision-making. They also highlight that ethical frameworks must be adaptable yet grounded in universal rights to navigate the tensions between cultural norms and patient autonomy, particularly as surveillance and consent technologies evolve. Addressing these dilemmas will require not only legal instruments but also institutional support, professional training, and culturally responsive models that can be sustainably implemented across diverse healthcare systems.

Surrogate Decision-Making: between framework and improvisation

In the Global North, surrogate decision-making is generally guided by robust legal and institutional structures. Advance directives, power of attorney, and ethics committees allow for shared, documented decision-making that aligns with patient values. However, even within these structured systems, tensions persist, particularly when cognitive capacity is borderline or when family and staff disagree [7, 21]. In contrast, the Global South relies heavily on family networks and clinician discretion. Decisions are often driven by emotional proximity, social duty, or necessity.

Lebanon mirrors this southern trend but adds layers of legal opacity. Decisions are negotiated informally between families and physicians, often in the absence of legal guardianship or institutional ethics support. This informality may align with familial values but can expose patients and caregivers to inconsistency, emotional burden, and potential exploitation.

Autonomy: supported vs. Surrogate-Centered models

Globally, there is a growing emphasis on supported decision-making, especially in the early stages of Alzheimer’s disease [100]. Countries in the North have operationalized this principle through staff training and participatory care models. Countries in the Global North have operationalized this principle through staff training and participatory care models. For example, Montani et al. describe how “France’s Espace Éthique Alzheimer” workshops create structured spaces for professionals to discuss real dementia cases collaboratively, enhancing ethical reflexivity [101]. Löbe and AboJabel’s scoping review shows that across Northern Europe, staff are trained to use intelligent assistive technologies in ways that respect autonomy and privacy, supporting empowerment [102]. Ris et al. highlight that in Scandinavian home care, staff training focuses on working with families as co-decision-makers, reinforcing shared responsibility [103]. Similarly, Italy’s national dementia plan emphasizes practical staff training and participatory guidelines to protect dignity in everyday practice (https://www.demenze.it/documenti/schede/ann_21_03_04.pdf). However, autonomy remains fragile: the risk of under-treatment, tokenism, or misjudgment of capacity still looms.

In many southern contexts and in Lebanon, autonomy is underemphasized or culturally reframed. Studies show that public understanding of patient rights is low, and decisions are often made unilaterally by caregivers under stress. This practical marginalization of autonomy, while perhaps culturally accepted, raises ethical concerns when patients’ known or likely wishes are bypassed without systematic formal review.

Surveillance and technology: regulation vs. Improvisation

Surveillance technologies like GPS tracking and smart monitoring devices are increasingly common in high-income countries [104]. When well-regulated, safeguards and professional codes can enhance patient safety while helping to preserve dignity and autonomy in dementia care. For example, Smebye et al. demonstrate that negotiated care plans and home-based monitoring devices can support people with dementia to live at home safely, but they also show that such measures can create privacy concerns and that response times are not always reliable in practice [84]. De Sabbata et al. discuss how the Italian Code of Medical Deontology demands strict patient consent and proportional use of surveillance to protect privacy and dignity, yet highlight that real-world application is complicated by patients’ fluctuating capacity and the risk of function creep when data protections are weak [87]. Similarly, the New Lebanese Code of Medical Ethics underscores that consent, professional secrecy, and respect for patient will are central to maintaining dignity in regulated systems, but also acknowledges that in urgent or complex situations, physicians may face ethical tensions when balancing timely intervention with confidentiality and patient rights [100]. Taken together, these sources show that while regulation plays a vital role in protecting patients, it does not fully resolve the practical and ethical dilemmas around privacy, timely response, and autonomy in dementia care [84, 87, 100].

In Lebanon, technology use is inconsistent and often unregulated. Surveillance is sometimes introduced in institutions without informed consent or ethical oversight. This mirrors similar patterns seen in India and Nigeria, where tracking tools fill a safety gap in resource-limited settings but generate new ethical risks [105, 106].

Legal frameworks: clarity vs. Vacuum

Legislation such as the Leonetti Laws (France) or the Health Care Consent Act (Canada) helps create predictable and ethically sound decision-making processes by providing clear legal guidance and procedures. In contrast, the Patient Self-Determination Act (US) functions primarily as an information mandate, requiring that patients be informed of their rights to make advance directives but offering no specific framework to guide surrogate decision-making in practice [61]. Ethics committees and guardianship systems offer recourse when disputes arise. Such frameworks were shown to reduce conflict and increase patient-centered outcomes [66].

In the Global South, legal structures are often fragmented, inaccessible, or culturally incompatible. Lebanon typifies this gap. The country lacks a national policy on surrogate consent or dementia care. Decisions are shaped by religious courts, physician ethics, or family preference, none of which are subject to formalized or standardized review. This lack of enforceable norms creates inconsistency and moral distress for caregivers.

Culture and crisis: ethics under constraint

Cultural values influence ethical decisions everywhere, but their dominance in the Global South is striking. Caregivers from India, Pakistan, Egypt, and Iran, for example, prioritized religious guidance over legal norms (https://islamiclaw.blog/2017/12/22/legal-incapacity-and-the-concept-of-hajr-under-iranian-law-an-analysis-of-civil-code-in-relation-to-mental-health/). In Lebanon, authors described how economic collapse and caregiving fatigue may lead to ethically challenging decisions such as bypassing consent to admit a patient to a care facility or withholding aggressive treatment without discussion.

Economic strain further erodes ethical capacity. Qassem et al. projected a doubling in dementia prevalence by 2040 with no corresponding increase in ethical oversight or care infrastructure [5]. While the Global North generally has more structured systems to guide ethical decision-making in dementia care, Passmore et al. highlight that resource constraints, underfunded services, and practical disconnects between guidelines and real-world practice can still pose significant ethical challenges, particularly when managing severe behavioral symptoms and preserving dignity in under-resourced regions [107]. Sowmini and De Vries similarly show that in the Netherlands, despite strong formal frameworks, institutional care remains costly and can be difficult to access for marginalized or rural communities, revealing persistent ethical tensions in practice [108]. Together, these studies remind us that ethical dementia care depends not only on formal systems but also on sufficient resourcing, equitable access, and contextual responsiveness. In Lebanon and many parts of the Global South, however, these dilemmas are often compounded by systemic gaps in policy, infrastructure, and institutional memory, which further limit consistent ethical practice.

Ethical reflection

This thesis does not aim to impose Northern frameworks on Southern contexts. Rather, it advocates for ethically adaptive systems that are locally rooted but globally informed. Lebanon’s caregiving culture is a strength, but it needs to be supported by legal clarity, ethics education, and public dialogue. Ethics should not be improvised in moments of crisis; they must be cultivated through institutional design, cross-sectoral cooperation, and sustained commitment over time.

Recommendations

To align with global standards while honoring Lebanon’s unique cultural and legal realities, we strongly recommend a multi-level, culturally grounded reform strategy for dementia care. These reforms should be phased according to anticipated cost and implementation time, as shown in Fig. 4.

Fig. 4.

A Prioritized Framework Based on Implementation Feasibility, Time, and Cost Considerations

First, public awareness campaigns about advance directives and capacity planning should be prioritized as an immediate, low-cost step. These should include community workshops and collaboration with religious leaders to reduce stigma and encourage early family dialogue. While advance directives remain crucial for protecting patient autonomy, we acknowledge their well-documented limitations in dementia care: they often fail to anticipate complex scenarios or changing family dynamics. Therefore, they should be supported by regular review and open family discussions.

Second, professional training should integrate medical ethics and culturally relevant case studies into undergraduate and continuing education. This medium-cost, medium-term reform can equip clinicians to navigate family hierarchy and religious factors while balancing patient rights. Caregiver training should also address capacity assessment, substitute and supportive decision-making, and conflict resolution.

Third, a robust legal framework is essential but will require longer-term, higher-cost reform. We recommend enacting clear laws for appointing healthcare proxies and guardianship pathways that are harmonized across Lebanon’s sectarian courts. These reforms must be developed in consultation with religious and community leaders to ensure cultural acceptability while upholding universal patient rights. The ethical debates around family-based hierarchical decision-making must be acknowledged, with procedural safeguards to protect patients from undue influence or neglect.

Fourth, ethics committees should be mandated in all hospitals to resolve complex surrogate conflicts and ensure consistent, ethically sound decisions. This medium-cost step should be combined with staff training and protocols for referring cases to judicial review when needed.

Fifth, technology regulation must be updated to address surveillance tools and consent procedures. This should be led by the Ministry of Public Health, which should develop practical, culturally sensitive guidelines that balance privacy and safety.

Sixth, a comprehensive National Dementia Strategy should be launched as a longer-term, higher-cost commitment. This would include a national registry, regular monitoring of care standards, and specific measures to expand access for under-resourced rural and low-income areas.

Finally, global partnerships should be built to adapt international best practices to the Lebanese context. Hosting regional ethics forums and learning exchanges will strengthen local capacity while ensuring reforms remain culturally acceptable and grounded in universal human rights.

These steps will require multi-stakeholder commitment: from policymakers to healthcare institutions, religious courts, civil society organizations, and patient advocacy groups. Only through coordinated, culturally grounded reforms can Lebanon bridge the gap between legal mandates, ethical frameworks, and everyday dementia care practice.

Limitations

This study has several key limitations that should be considered when interpreting its findings. Some of these limitations are broadly relevant across the Global North and South, while others are more specific to Lebanon’s context. First, the reliance on cross-sectional surveys and qualitative case studies, common in the broader literature, limits the ability to establish causal relationships or track changes over time; this affects both Global North and South research. Second, small sample sizes and the underrepresentation of certain subgroups, such as rural populations, are particularly relevant to Lebanon, where research capacity and national registries remain limited. Third, the scarcity of local studies on specific topics, such as surveillance technologies and ethics committee functioning, is a Lebanon-specific gap that constrains the evidence base for locally grounded recommendations. It should be noted that several included studies from Global South contexts are not specific to ADRD but instead address general surrogate decision-making and clinical ethics practices. This reliance on broader context evidence reflects a significant research gap: in many low- and middle-income countries, condition-specific studies on surrogate decision-making in ADRD care remain limited or undocumented. This highlights the urgent need for locally grounded, dementia-specific research to inform culturally relevant policy and practice. Fourth, cultural biases in the literature, including an overemphasis on Western ethical frameworks, can affect studies globally but are especially salient in Lebanon, where strong family-centered traditions must be balanced with universal rights principles. Additionally, the study’s focus on ADRD, while important globally, necessarily excludes other forms of dementia that may present different ethical challenges in any setting. Finally, the proposed recommendations remain untested, and their feasibility is especially uncertain given Lebanon’s ongoing economic crisis and fragmented healthcare system, a limitation that is highly specific to this setting. These limitations highlight the need for more comprehensive, context-sensitive, and longitudinal research, both globally and locally, as well as pilot testing of ethical interventions in real-world practice.

Conclusion

This comprehensive review examined the ethical dilemmas surrounding the care of Alzheimer’s patients who are no longer capable of providing informed consent. By analyzing global studies and 9 Lebanon-based studies, the research identified key thematic domains: surrogate decision-making, autonomy, surveillance technology, legal frameworks, and cultural/economic influences. Across these themes, a stark North–South ethical divide emerged, reflecting differences in legislation, institutional capacity, and cultural orientation.

In the Global North, ethical care is supported by formal legal tools, multidisciplinary ethics consultations, and a growing movement toward supported decision-making. Despite occasional tensions, these systems promote patient dignity, shared responsibility, and procedural fairness. In contrast, many countries in the Global South, including Lebanon, operate within ethical vacuums lacking statutory protections, institutional support, or public awareness. While family remains central to caregiving in Lebanon, this relational model is strained by legal ambiguity, resource scarcity, and emotional burnout.

It is important to note that some of these challenges are specific to Lebanon’s confessional legal pluralism and economic precarity, while others such as resource constraints and tensions between autonomy and family hierarchy are shared by under-resourced communities globally. These limitations highlight the need for context-sensitive reforms that respect cultural realities while upholding universal rights.

Lebanon’s situation is both unique and representative. Its absence of guardianship law, limited use of advance directives, and fragmented systems create an environment where ethical care often relies on improvisation rather than structure. Yet Lebanon also possesses a strong caregiving ethos, a growing medical education sector, and a population willing to engage with reform.

This review provides both a diagnosis of Lebanon’s ethical challenges in dementia care and a realistic, culturally grounded roadmap for reform. Alzheimer’s patients who can no longer speak for themselves deserve systems that speak for them: legally, ethically, and compassionately wherever they live.

Abbreviations

AD

Alzheimer’s Disease (sometimes referred to as Alzheimer syndrome in the text)

PRISMA

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

ZBI

Zarit Burden Interview

ID

Intellectual Disability

EU

European Union

USA

United States of America

MENA

Middle East and North Africa

GPS

Global Positioning System

PDA

Durable Power of Attorney

GC

Guardianship Courts

GDP

Gross Domestic Product

Authors’ contributions

Zeinab Al Mokdad: Conceptualizing the study, conducting the literature search, and drafting the initial manuscript.Ali Msheik: Designing the study, synthesizing data, and revising the manuscript critically for important intellectual content.Lubna Tarabay: Extracting data, performing thematic analysis, editing the manuscript.Fadi Abou-Mrad: Providing clinical expertise in neurodegenerative disorders, supervising the medical context, and reviewing the manuscript critically.Patricia Fadel: Supervising the overall research process, guiding the interpretation of findings, and finalizing the manuscript for submission.

Funding

This study did not receive any funding.

Data availability

Data is provided within the manuscript or supplementary information files.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.