Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review

Abstract

Background

Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC).

Objectives

Provide an overview of the existing scientific data on caregiver’s knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject.

Methods

A narrative literature review was conducted to address the research question: “What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?” Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics.

Results

Of the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices.

Conclusion

With the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-025-01862-8.

Introduction

Major neurocognitive disorders are chronic degenerative diseases characterized by a progressive and irreversible decline in cognitive functions, eventually leading to the inability to make decisions and give consent [1–4]. As the disease progress, individuals living with this disease require increasing support. This role is partially or fully assumed by a caregiver, defined as a non-professional individual, often a family member, who provides unpaid care to a person in need [2, 5]. Caregivers are frequently involved in decision-making processes for their loved one regarding care and service provision, the implementation of palliative care, and the introduction of end-of-life care in the terminal phase of the illness [6–8]. In a palliative and end-of-life care (PEoLC) context, this may include decisions such as whether to initiate medications to treat an acute health problem, adjust or discontinue medications for chronic conditions, introduce pharmacological treatments for comfort, or manage hospital transfers [7–9]. This place a substantial responsibility on caregivers [6].

Since they make decisions based on their own knowledge, skills, preferences, and values [9], it is essential to gain a deeper understanding of their knowledge, attitudes, and representations regarding PEoLC, as their decisions can directly impact both the quality of care and the life expectancy of the person they support [6].

Given that a brief overview of the literature did not identify any existing reviews on this topic, conducting a literature review was considered necessary to enhance understanding of caregivers’ perspectives on PEoLC for individuals with major neurocognitive disorders. The aim of this study was to provide an overview of existing scientific data on caregivers’ knowledge, attitudes, and representations of PEoLC for individuals with major neurocognitive disorders, and to analyze this information in order to gain a deeper understanding of caregivers’ positioning on the subject.

Methods

Study design

A narrative literature review was conducted to provide an overview of the available published scientific data on the knowledge, attitudes, and representations of caregivers regarding PEoLC. This research design was selected because it allows for the coverage of a broad range of topics and the identification of a diverse body of literature, with the aim of comprehensively analyzing and synthesizing existing knowledge [10, 11]. The research question was: “What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?” This review involves two main steps [1] To establish a mapping of published scientific articles on the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders concerning PEoLC and [2] to

Selection criteria

A PICO framework was defined: (Population) caregivers; (Intervention) palliative and end-of-life care; (Context) major neurocognitive disorders; (Outcome) knowledge, attitude, and representation [12]. For this study, the conceptual definition of knowledge, was based on the model of death literacy by Noonan et al. (2016). It encompasses understanding palliative care, available health services, medications, and equipment, as well as public health policies and end-of-life planning processes, including wills and funerals [13]. Attitude was conceptually defined as a feeling or an opinion about something or someone, or a way of behaving that is caused by it [14], and representation as an organized and structured set of opinions, attitudes, beliefs, and information [15–17]. Inclusion criteria were articles addressing the knowledge, attitude, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics (e.g., palliative care approach, treatment withdrawal, medically assisted dying, palliative sedation, advance care planning, etc.). In this review, the palliative care approach is defined in this article as the key principles of palliative care in the context of dementia, as proposed by the European Association for Palliative Care. These principles include consistent, person-centered care, collaborative decision-making, establishing care preferences and advance care planning, ensuring essential comfort and symptom control, offering psychosocial and spiritual support, and early identification of the dying phase [18]. Moreover, medically assisted dying includes medical assistance in dying, euthanasia, and assisted suicide. Studies that did not meet these criteria, that did not provide primary data (e.g., editorials, opinion pieces) and systematic reviews addressing a particular end-of-life practice were excluded.

Sources of information and search strategy

To gain a comprehensive understanding of the subject, a search was conducted on three databases – PubMed, CINAHL and PsycINFO – on September 6, 2023. These three extensive databases were chosen for their broad and comprehensive coverage in the fields of health and sciences social sciences [19, 20]. The search strategy was designed based on a concept plan created in collaboration with a health sciences librarian. The search strategies included both free and controlled vocabulary in English. Keywords used were caregiver, dementia, palliative care, end-of-life care, knowledge, attitude, and representation (see Appendix 1). Articles published before 2000 were excluded to ensure a contemporary perspective on the subject, particularly reflecting current PEoLC practices and values, including medically assisted dying practices.

Article selection process

The search results from the databases were imported into Covidence software, where duplicates were manually removed. Additionally, some abstracts required a manual search to retrieve the full-text articles. Two team members performed independently a preliminary screening of titles and abstracts to exclude articles not meeting the inclusion criteria. A full-text review of the articles was then conducted iteratively and independently by the same team members to determine their relevance based on the predetermined inclusion and exclusion criteria. Discrepancies regarding the inclusion of articles were resolved through team discussions, with consultation from another team member when necessary.

Data extraction and analysis

The main characteristics of the included studies (author, country, year, design, objective, methodology), participant characteristics (age, gender), and main findings were extracted by the lead author. The articles were then categorized according to the concepts and PEoLC topics to create a mapping of the literature. A content analysis was subsequently conducted to delve into the data on knowledge, attitudes, and representations of PEoLC, inspired by the inductive approach described by Elo and Kyngäs, which involves preparation, organization, and reporting [21, 22].

Results

The search strategy yielded 1,436 articles, with 536 duplicates subsequently removed. Thus, 900 articles were screened by title and abstract, resulting in an initial selection of 101 studies. Eligibility assessment excluded 76 articles based on the established criteria. Studies with the wrong context (not addressing major neurocognitive disorders) or population (unable to distinguish caregivers in the results, general population, or healthcare providers) were not retained. Additionally, articles with interventions not included in the inclusion criteria (e.g., Do-Not-Resuscitate directive) or outcomes (e.g., caregiver’s experience, not addressing caregiver’s knowledge, attitudes, or representations) were excluded. Consequently, 25 articles were selected for analysis. The details of this selection process are presented in Fig. 1.

Fig. 1.

PRISMA Flow chart

Study characteristics

The selected articles were published between 2006 and 2022, most (n = 19) after 2016. The studies were conducted in the United Kingdom (n = 8), United States (n = 5), Canada (n = 4), Belgium (n = 3), Israel (n = 2), Brazil (n = 1), Netherlands (n = 1) and Italy (n = 1) (see Table 1). The research designs were predominantly qualitative (n = 17), with data collection methods primarily involving interviews (n = 14), focus groups (n = 1), a combination of those methods (n = 1) or nominal group technique (n = 1). Most studies had fewer than 60 participants (n = 16).

Table 1.

Characteristics of included studies

Year of Publication	Number (n)	Percentage (%)
2006–2015	6	24%
2016–2022	19	76%
Country*	Number (n)	Percentage (%)
Belgium	3	12%
Brazil	1	4%
Canada	4	16%
Italy	1	4%
Israel	2	8%
Netherlands	1	4%
United Kingdom	8	32%
United States	5	20%
Design	Number (n)	Percentage (%)
Qualitative	17	68%
Quantitative	8	32%
Data Collection Method	Number (n)	Percentage (%)
Interviews	14	56%
Focus group	1	4%
Interviews & focus group	1	4%
Nominal group technique	1	4%
Questionnaire	8	32%
Sample size**	Number (n)	Percentage (%)
< 21 participants	8	35%
21–40 participants	3	13%
41–60 participants	5	22%
61–80 participants	3	13%
81–100 participants	0	0%
> 100 participants	4	17%
Participants (caregivers)**-***	Number (n)	Percentage (%)
Total number of caregivers	1545	100%
Gender
Male	400	27%
Female	1069	73%
Relationship with the senior with major neurocognitive disorders
Spouse	723	54%
Children	508	38%
Other	111	8%
Age	years
Mean age	64
Range	20–92

* Based on where the study was conducted

** Three studies utilized the same sample, which was counted only once. Furthermore, the sample size reflects the total number of participants included in each study

*** Based on the available data

Participant characteristics

Caregivers made up the entire sample (n = 12) or a subgroup (n = 13) of the selected articles, totaling 1,545 participants (see Table 1). Of these, 73% were women. The average age of participants was 64 years, with a range from 20 to 92 years. The relationship between the senior with major neurocognitive disorders and the caregiver was primarily spousal (54%) or parent-child (38%).

Mapping of included studies

Table 2 presents a summary of the included articles, according to the concepts and subjects they explore. Most of the analyzed articles addressed multiple concepts and topics simultaneously. Specifically, knowledge, attitudes, and representations were covered in 48% (n = 12), 80% (n = 20), and 72% (n = 18) of the reviewed studies, respectively. In addition to the palliative care approach (n = 12), the selected articles explored various PEoLC practices, including advance care planning (n = 11), hospital transfer (n = 3), treatment withdrawal (n = 2), artificial nutrition and hydration (n = 4), continuous palliative sedation (n = 1), and medically assisted dying (n = 7). Since there is a lack of evidence regarding the benefits of artificial nutrition and hydration in the context of neurocognitive disorders, this intervention is considered in this review to be invasive, with assisted oral feeding by a third party as an alternative [18, 23].

Table 2.

Overview of scientific articles on caregivers' knowledge, attitudes, and representations of palliative andend-of-life care

Articles	Concepts			Subjects
	Knowledge	Attitudes	Representations	Palliative care approach	Advance care planning	Hospital transfer	Treatment withdrawal	Artificial nutrition/hydration	Palliative sedation	Medically assisted dying
Bravo et al (2018)[34]		x	x						x	x
Bravo et al. (2019)[42]		x								x
Bravo et al (2021)[43]		x					x			x
Davies et al (2017)[45]			x	x
Dening et al (2013)[47]			x	x	x					x
Gabbard et al. (2020)[26]	x	x	x	x	x
Hill et al (2017)[37]		x	x	x	x
Hochwald et al. (2021)[35]		x	x	x		x		x
Kermel-Schiffman and Werner (2020)[48]	x		x		x
Kupeli et al (2019)[46]		x	x	x				x
Kwak et al. (2019)[36]		x		x
Lawrence et al (2011)[29]	x		x	x	x
Moss et al (2018)[33]	x	x	x	x	x
Pei et al (2022)[27]	x	x						x
Pettigrew et al (2020)[24]	x	x	x	x
Poole et al (2018)[39]		x	x	x	x	x
Rurup et al (2006)[40]		x	x					x		x
Sussman et al (2021)[38]	x	x	x		x
Thuné-Boyle et al (2010)[41]		x	x			x	x	x
Tomlinson et al (2015)[44]		x	x							x
Van Rickstal et al (2019)[32]	x	x	x		x
Van Rickstal et al (2020)[30]	x				x
Van Rickstal et al (2022)[31]	x	x			x
Vilela and Caramello (2009)[28]	x	x								x
Zaponni et al (2018)[25]	x	x	x	x

Regarding the palliative care approach, this was frequently analyzed from the perspective of representation, mostly in terms of perception and understanding (n = 10). Among the PEoLC practices, knowledge (n = 7) and attitudes (n = 7) regarding advance care planning, as well as attitudes towards medically assisted dying (n = 6), were the most studied topics. In contrast, knowledge about artificial nutrition and hydration (n = 1) and medically assisted dying (n = 1), attitudes towards continuous palliative sedation (n = 1), and representations of hospital transfers (n = 1) were the least studied themes. Additionally, the included studies did not address knowledge and representation of treatment withdrawal and continuous palliative sedation, as well as knowledge about hospital transfers.

Content analysis of caregivers’ knowledge, attitudes, and representations of PEoLC

To better understand caregivers’ perceptions of PEoLC, a content analysis was conducted to explore and analyze their knowledge, attitudes, and representations in the included studies.

Knowledge

The reviewed articles indicated that caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. More specifically, two studies reported that most caregivers (62–85%) declared they had partial or good knowledge of the subject [24, 25]. In contrast, Gabbard et al. (2020) found that only 34% of participants considered their knowledge to be adequate [26].

Regarding caregiver’s knowledge of PEoLC practices, Pei et al. (2022) found a low level of knowledge about the use of tube feeding, while Vilela and Carameli (2009) reported that only 25% of participants could correctly define euthanasia [27, 28]. Studies on advance care planning revealed a lack of knowledge on the subject, with most participants being unfamiliar with the term “advance care planning” or its purpose [29–32]. Furthermore, Moss and al. (2018) noted that participants struggled to differentiate an advance directive from wills, as both were associated with documenting wishes and preferences, whether health-related or not [33].

Attitudes

Within studies addressing caregivers’ attitudes towards PEoLC practices, one study reported a certain consensus among participants concerning palliative sedation. Indeed, 69% of caregivers were supportive of this practice if it was provided to a terminally ill person with major cognitive disorders experiencing evident suffering, with the goal of alleviating that suffering [34].

Otherwise, articles examining caregivers’ attitudes towards EoLPC practices reported more divided perspectives regarding palliative care approach, advance care planning, artificial nutrition and hydration, hospital transfers, medically assisted dying and treatment withdrawal. More precisely, caregivers’ attitudes toward care goals varied across studies, with the preference for comfort care over life-prolonging treatments ranging from 40 to 90% [24, 25, 35, 36].

Most studies addressing advance care planning highlighted a positive attitude towards this practice, emphasizing that caregivers acknowledged the importance of documenting patient preferences [31, 33, 37, 38]. However, Sussman et al. (2021) and Van Rickstal et al. (2022) observed that participants did not consistently initiate these discussions with their loved ones [31, 38]. Additionally, Gabbard et al. (2020), Poole et al. (2018) and Van Rickstal et al. (2019) reported a more divided stance on advance care planning among participants [26, 32, 39]. In these studies, caregivers expressed varying opinions regarding the significance and usefulness [32, 39], while 43–45% of caregivers said that there was no need to discuss goals of care with the physician [26].

Variation in caregiver’s attitudes toward artificial nutrition and hydration were observed. In Rurup et al. (2006), 65% of participating caregivers agreed with the statement: “When a patient in the advanced stages of dementia refuses to eat and/or drink, this should be respected at all times” [40]. Conversely, in studies examining attitudes toward tube feeding in the context of difficulty eating and drinking, authors found that 33–35% of participants opted for tube feeding, while 24–33% preferred oral feeding by another person. Additionally, 33–41% remain neutral or did not take a position [27, 35]. For their part, Thuné-Boyle et al. (2010) reported that many participants thought that tube feeding should be offered as long as patients are comfortable [41].

Regarding hospital transfers, Poole et al. (2018) reported that all caregivers surveyed preferred end-of life care to be provided in their loved one’s current living environment, regardless of the type of setting, rather than opting for a hospital transfer [39]. Hochwald et al. (2021) reported that 74% of caregivers whose loved one received standard home care favored hospital transfer compared to 20% of those whose loved one received palliative care at home [35].

Moreover, caregiver’s perspectives and levels of acceptance regarding medically assisted dying varied across studies. Bravo et al. (2018; 2019; 2021) found that 50% of caregivers supported medical aid in dying at an advance stage and 72% at a terminal stage of illness [34, 42, 43]. In contrast, many participants in the study by Tomlinson et al. (2015) expressed discomfort with assisted dying [44] and 78% opposed euthanasia in the study by Vilela and Caramelli (2009) [28].

Support for medical aid in dying among caregivers for individuals with major neurocognitive disorders who had written advance directives ranged from 68 to 91% [34, 40, 42, 43]. Conversely, Tomlinson et al. (2015) indicated that all participants supported the view that individuals with major neurocognitive disorders should receive medically assisted dying while they are still capable of giving consent, although this may lead some people to request assisted dying earlier than they would wish in order to avoid being ineligible later on [44].

Caregivers’ attitudes towards treatment withdrawal were examined in the context of health deterioration in individuals with major neurocognitive disorders requiring antibiotics [43]. Some caregivers expressed ambivalence towards treatment withdrawal, with an acceptability ranging from approximately 30–45% at an advance stage and 23–58% at the terminal stage of illness [43]. In the study by Thuné-Boyle et al. (2019), participants considered the use of antibiotic important, with 95% agreeing that individuals with neurocognitive disorders should always receive antibiotics for infections such as pneumonia [41].

Representations

While caregivers shared some consensus on what defines quality palliative care, their beliefs varied regarding the palliative care approach and PEoLC practices. Authors identified elements that caregivers considered essential in providing quality palliative care for their loved one. Participants emphasized that palliative care should prioritize respecting the individual’s identity and uniqueness beyond their illness [29, 33, 39, 45–47]. This involved addressing basic needs, supporting social and recreational activities, ensuring physical and psychological comfort, and respecting the cultural beliefs of individuals with major neurocognitive disorders [29, 31, 33, 37, 39, 45–47]. Palliative care was ideally provided by trained, respectful, and compassionate professionals, preferably in the home or a comparable setting [31, 33, 37, 39, 45–47]. However, Gabbard et al. (2020) and Hill et al. (2017) highlighted that caregivers acknowledged cognitive decline can hinder engagement in leisure activities and the incorporation of cultural beliefs at end-of-life [26, 37].

Some authors highlighted variations in caregivers’ beliefs about the palliative care approach. While 43% of participants associated palliative care with oncology patients or those at end of life [25], 10% believed it hastened death, and another 10% perceived comfort care as a form of abandonment [24].

About artificial nutrition and hydration, some caregivers considered this practice as a “basic” life-prolonging measure that should be accessible to everyone, including those with major neurocognitive disorders [35, 41]. From this perspective, withholding a feeding tube was considered unacceptable or even criminal [35, 41]. Conversely, other participants viewed tube feeding as a violent act of forced-feeding a vulnerable person [35] and that forgoing artificial nutrition and hydration was almost always followed by a peaceful death [40].

Moreover, Poole et al. (2018) noted that participants perceived hospital transfers as distressing and disruptive for individuals with major neurocognitive disorders, given the unfamiliar environment and the presence of strangers [39].

In the Kermel-Schiffman and Werner (2020) study, some participants viewed advance care planning as means of maintaining decision-making autonomy and responsibility for end-of-life care in the event of incapacity [48]. It was also viewed as means of avoiding pain, excessive intervention, and prolonging a meaningless life [48]. Other caregivers voiced doubts regarding the extent to which advance care planning can ensure control, viewing it instead as a process lacking clear outcomes and subject to potential misinterpretation by healthcare professionals [47]. Furthermore, Sussman et al. (2021) and Van Rickstal et al. (2019) observed that some caregivers perceived future planning discussions as potentially harmful, as they could confront the senior with major neurocognitive disorders with anticipated losses [32, 38]. As a result, avoiding advance care planning discussions was seen as a way to protect their loved one [38].

Studies found some consensus among participants regarding the right to choose one’s own death for all individuals, including those with neurocognitive disorders [34, 40, 43, 44]. From this perspective, several caregivers in the Dening et al. (2013) study felt that medically assisted dying was a way of maintaining control [47]. However, in the Tomlinson et al. (2015) study, some participants viewed assisted dying as meaning that the life of a loved one with major neurocognitive disorders was no longer valued [44]. Additionally, some participants viewed this practice as contrary to the principles of care that prioritize the preservation of life, believing that death should be accepted rather than controlled. Treatment withdrawal was also perceived as a form of euthanasia [44].

Discussion

This review aimed to explore and synthesize current knowledge on caregivers’ knowledge, attitudes, and representations regarding PEoLC for individuals with major neurocognitive disorders. It highlighted significant disparities in the scientific literature, with a disproportionate focus on advance care planning compared to other practices, such as palliative sedation or treatment withdrawal. The past decade has seen a rise in literature on advance care planning, partly due to the opportunities it provides to individuals with major neurocognitive disorders to participate in PEoLC decisions [49, 50]. Conversely, the specificities of PEoLC in context of major neurocognitive disorders may have led to less research on some practices, such as palliative sedation, which may complicate its use [51, 52].

Analysis of the caregiver’s knowledge of palliative care approach revealed that they had a general understanding of the topic and shared comparable definitions of what constitutes quality palliative care. Interaction with the healthcare system is a significant predictor of knowledge of palliative care approach [53]. Individuals with major neurocognitive disorders tend to use more healthcare services than those without this diagnosis, and this utilization tends to increase as the disease progresses [54–58]. Through their role and the support they provide to their loved ones, caregivers are often exposed to healthcare services, which can enhance their understanding and facilitate the acquisition of general knowledge about palliative care [5, 53].

However, caregivers were found to have limited knowledge regarding specific PEoLC practices. These knowledge gaps were accompanied by ambivalent attitudes and polarized representations. While many caregivers understand the basic principles of palliative care, implementing decisions consistent with comfort care goals remains a challenge, likely due to insufficient knowledge or experience with complex interventions [13, 59, 60]. These findings suggest a greater need for tailored information and support. Several studies included in this review highlighted the lack of, or the need for, more discussion and information about PEoLC practices between caregivers and the healthcare teams [24, 26, 27, 35, 37–39, 41, 46, 48].

Differences in caregivers’ attitudes towards end-of-life care may be related to their understanding of major neurocognitive disorders. Although not the focus of this review, awareness of the specificities and terminal nature of major neurocognitive disorders increases the likelihood of receiving comfort care [61]. Conversely, failing to recognize the disease’s terminal stage can lead to missed opportunities for appropriate palliative care treatments [62, 63].

Implications for practice

The findings underscore the importance of strengthening caregiver support through tailored educational strategies that focus on the specifics of PEoLC and the unique needs of individuals with major neurocognitive disorders [64]. Healthcare professionals should adopt proactive approaches to provide clear information on therapeutic options, including their benefits and limitations. More specifically, they should facilitate case-specific discussions about the goals of care that take into account the disease progression and incorporate the values, preferences and changing circumstances of patients and caregivers [65, 66].

Healthcare professionals should also develop tailored resources addressing less understood PEoLC practices, such as advance care planning, treatment withdrawal and symptom management during terminal phases. These resources should focus on practical application and decision-making to empower caregivers in complex care situations [6, 23, 67].

Because caregivers make decisions based on their knowledge, skills, preferences, and values [9], educational strategies could be designed using the model of death literacy, which encompasses the knowledge, skills, and experiential understanding necessary for individuals to comprehend and make informed decisions about end-of-life and death care options [13, 68–70].

Strengths and limitations

This study presents several strengths that contribute to its relevance and impact. First, it offers a comprehensive overview of the existing scientific literature on caregivers’ knowledge, attitudes, and representations regarding PEoLC for individuals with major neurocognitive disorders. By including both the overarching palliative care approach and specific PEoLC practices, such as advance care planning and medically assisted dying, this review provides a holistic perspective on a complex and evolving field. Additionally, mapping and content analysis of the reviewed articles provide a deeper understanding of caregivers’ realities and needs, highlighting gaps in knowledge and areas requiring further investigation. However, knowledge, attitudes, and representations of PEoLC were analyzed independently. As a result, the interplay between these concepts in relation to caregivers’ perspectives on PEoLC could not be explored. This limits the understanding of how certain myths, such as the belief that PEoLC means that nothing more can be done, influence their attitudes and representations.

The focus on a population that plays a central role in PEoLC decision-making for individuals with major neurocognitive disorders adds to the study’s relevance, given the increasing prevalence of these diseases and the growing emphasis on patient-centered care [23, 71–73]. Furthermore, by addressing caregivers’ knowledge gaps and ambivalence, the study provides actionable insights that healthcare providers could use for interventions and support strategies for caregivers [67, 73].

However, some limitations need to be addressed. Conceptually, the exclusion of articles focused on caregivers’ experiences, and the lack of focus on their understanding of major neurocognitive disorders itself may have narrowed the scope and limited insights into the broader context that influences caregivers’ knowledge and attitudes.

Methodologically, this review did not include a quality assessment of the articles, which could have strengthened the evaluation of validity, reliability, and generalizability of the findings [74–76]. Additionally, most of the included studies assessed the level of knowledge through participants’ self-assessment, which may overestimate caregivers’ actual understanding due to subjective biases [77, 78].

Another limitation is that the study samples were culturally diverse but predominantly female, reflecting caregiving demographics but potentially skewing the results [79–81]. This gender imbalance may not fully capture the experiences or perspectives of male caregivers, thereby limiting the generalizability of the findings to all caregivers [81].

This review is also limited by the uneven representation of PEoLC practices in the literature, with advance care planning being more extensively studied than other interventions. This disparity may have affected the breadth of conclusions drawn about less frequently studied topics, such as palliative sedation or treatment withdrawal.

Lastly, this review did not consider the cultural and legislative differences in which the selected studies were conducted. For example, in certain studies that examined this topic, medical assistance in dying was not always legally sanctioned. Previous research indicated that people’s medicolegal setting is likely to have an impact on the framework they employ when making end-of-life decisions [30, 82]. Thus, the heterogeneity of the cultural and legislative contexts of the articles included in this review may influence participants’ knowledge, attitudes, and representations, which may impact the interpretation of the results of this analysis.

Despite these limitations, this study provides a solid foundation for future research and interventions aimed at addressing the informational and support needs of caregivers. Further research that incorporates diverse methodological approaches, understudied topics, and more balanced demographic samples will be essential to advancing the field.

Implication for research

The findings of this review highlight several key areas for future research to better understand and address the knowledge, attitudes, and representations of caregivers regarding PEoLC for individuals with major neurocognitive disorders. Among others, future studies should investigate the dynamic relationships between caregivers’ knowledge, attitudes, and representations of PEoLC. Understanding how these factors influence each other could provide valuable insights into the caregivers’ decison-making processes and their ability to align care decisions with the preferences and needs of individuals with major neurocognitive disorders.

Broadening research to encompass caregivers’ experiences and their understanding of major neurocognitive disorders is also essential. Greater awareness of how caregivers perceive the progression and terminal nature of major neurocognitive disorders could help identify barriers to timely palliative care implementation and improve communication strategies with healthcare providers.

Moreover, research should prioritize examining less-studied PEoLC practices, such as palliative sedation, treatment withdrawal, and symptom management in advance stages. These practices often present significant challenges for caregivers and require tailored guidance and education.

Lastly, longitudinal research is needed to assess how caregivers’ knowledge, attitudes, and representations evolve throughout the disease trajectory of their loved ones. Such studies could provide valuable data on how to adapt interventions over time to meet caregivers’ changing needs.

By addressing these research priorities, future studies can contribute to a deeper understanding of the realities faced by caregivers and provide evidence-based recommendations to improve their support and education. Ultimately, these efforts will enhance the quality of care for individuals with major neurocognitive disorders and their families.

Conclusions

This review provides a comprehensive analysis of caregivers’ knowledge, attitudes, and representations regarding PEoLC for individuals with major neurocognitive disorders. It highlights disparities in research depth across PEoLC practices, with an extensive focus on advance care planning but limited attention to palliative sedation, treatment withdrawal, and medically assisted dying. While caregivers generally understand the palliative care approach, their knowledge of specific PEoLC practices remains limited. Attitudes and representations varied widely, reflecting both the complexity of major neurocognitive disorders progression and the challenges caregivers face in navigating care decisions. The findings underscore the need for enhanced support and education, with healthcare professionals playing a critical role in equipping caregivers with the necessary resources. Future research should explore underrepresented PEoLC practices, examine the evolving interplay of caregivers’ knowledge, attitudes and representations to develop adaptive interventions for their needs. By advancing these priorities, the field can contribute to enhancing the quality of life for individuals with major neurocognitive disorders and their families, while fostering a more compassionate and informed approach to palliative and end-of-life care.

Authors’ contributions

RP and DT designed the literature review. The article selection process was conducted by RP, CF and DT. Data extraction and analysis, and the writing of the manuscript was carried by RP with the contribution of DT. Manuscript review and feedback was conducted by DT, SCP, GB, CF and GR. All authors read and approved the final manuscript.

Funding

The authors thank the Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL) and Université Laval for financially supporting this publication.

Data availability

All data supporting the findings of this review are available within the article and its Supplementary Material. The research strategy is detailed in Appendix 1. All included articles are cited in Table 2 of the manuscript.

Declarations

Ethics approval and consent to participate

This study was conducted in accordance with the ethical standards of the Declaration of Helsinki and the Tri-Council policy statement of Canada.

Consent for publication

Not applicable.

Competing interests

The authors declare no potential conflicts of competing of interest concerning the research, authorship, and publication of this article.