Informal Caregivers' Experiences of Decision-Making in End-of-Life Care for People with Dementia: A Qualitative Meta-synthesis

Article information

J Korean Acad Psychiatr Ment Health Nurs. 2025;34(4):402-424

Publication date (electronic) : 2025 December 31

doi : https://doi.org/10.12934/jkpmhn.2025.34.4.402

¹Professor, Department of Nursing, Hannam University, Daejeon, Korea

²Associate Professor, Department of Nursing, Hannam University, Daejeon, Korea

Corresponding author: Park, Jaewon Department of Nursing, Hannam University, 70 Hannam-ro, Daedeok-gu, Daejeon 34430, Korea. Tel: +82-42-629-8478, Fax: +82-42-629-8480, E-mail: jwpark@hnu.kr

Received 2025 November 16; Revised 2025 December 12; Accepted 2025 December 14.

Abstract

Purpose

This review synthesized qualitative evidence on informal caregivers' experiences in decision-making about end-of-life care for people with dementia.

Methods

A meta-aggregation approach based on the Joanna Briggs Institute methodology was applied. Literature searches were conducted across 11 databases including PubMed, as well as ProQuest Dissertations & Theses Global, OpenGrey, and citation searches for grey literature. The search and study selection were carried out between February 13 and June 28, 2025.

Results

Twenty-one qualitative studies involving 502 informal caregivers were included. Three synthesized findings emerged from nine categories: (1) formation and readiness in end-of-life care decision-making, including role assignment, prior discussions, and preparedness; (2) factors and emotional impacts, encompassing barriers, facilitators, decision-making bases, and emotional consequences; and (3) caregivers' needs in end-of-life care decision-making, reflecting their desire to make appropriate decisions for people with dementia and the requirements to do so.

Conclusion

This review offers a comprehensive understanding of caregivers' experiences and provides practical insights for healthcare professionals. The findings support the development of guidance to assist caregivers, reduce decision-making burden and emotional distress, and promote more meaningful and satisfactory end-of-life care decisions.

Keywords: Caregivers; Decision-making; Dementia; Terminal care; Qualitative research

INTRODUCTION

Dementia is an umbrella term for a group of diseases, including Alzheimer's disease, vascular dementia, frontotemporal dementia, and dementia with Lewy bodies [1]. Although the underlying brain pathology differs, dementia is characterized by progressive neurodegeneration and cognitive decline [2]. The terms, definition, characteristics, and classification criteria of advanced dementia vary across severity scales [3] such as the Clinical Dementia Rating Scale [4], the Global Deterioration Scale [5], and the Functional Assessment Staging Scale [6]. In general, people with dementia (PWDs) in the end-of-life (EoL) stage often experience severe impairments in communication and decision-making [7,8], as well as declines in overall bodily function and health complications, such as difficulties with eating and swallowing, infections, respiratory problems, and pain [3,7].

EoL care supports patients and their families during the terminal stage of life to address physical, psychological, social, and spiritual needs [9]. EoL care, palliative care, and hospice care share the goal of improving patients' quality of life (QoL) [10,11]. Palliative care manages symptoms throughout the disease trajectory [8,10], whereas hospice care targets patients with a life expectancy of less than six months, emphasizing pain relief and psychological support over life-prolonging treatments [8,11]. EoL care encompasses both palliative and hospice care, focusing on support during the final days or months [9]. Since the mid-1970s, patients have been encouraged to express their wishes and establish goals for EoL care through advance directives (AD) or advance care planning (ACP) [12]. As dementia progresses and the cognitive and decision-making abilities of PWDs gradually decline, family members come to play an increasingly important role in ACP [13]. More recently, ACP in dementia has been redefined with an emphasis on family involvement [14], and the early initiation of discussions about EoL care for PWDs is strongly encouraged [8].

Dementia is incurable, progresses unpredictably, and typically advances gradually over many years, making it difficult to determine when PWDs enter the EoL stage [3,7,15]. These characteristics of dementia hinder PWDs and their informal caregivers - who are usually family members or close friends serving as primary unpaid caregivers - from engaging in advance discussions about EoL care. Communication and decision-making impairments during the EoL stage further challenge caregivers in discerning PWDs' wishes [3,15]. Nevertheless, informal caregivers are often assumed to have the best understanding of the PWDs' wishes, preferences, and values because of their long-term caregiving experience [1,16]. They are also entrusted with decisions regarding life-sustaining treatments (LST) or hospice referral [3,7,8,15,17]. Caregivers must make these decisions amid uncertainty, confusion, and emotional distress [3,18], and disagreements among family members may lead to interventions that do not reflect PWDs' wishes, causing unnecessary suffering [8,15]. Thus, EoL care decision-making for PWDs is a complex. Moreover, this process threatens the psychological health of caregivers by causing burnout, anxiety, and depression.

Informal caregivers require appropriate guidance when making EoL care decisions for PWDs [3,17]. The European Association for Palliative Care (EAPC) provided recommendations for palliative care to PWDs [19] and for promoting ACP in dementia [20]; however, these do not specifically guide informal caregivers in EoL decision-making. Previous studies have explored factors influencing LST decisions [21], attitudes toward LST [17,22], challenges in tube feeding decisions [23], hospice care decision-making needs [24], and experiences of guilt [25] and support [26] among decision-makers. Existing syntheses have examined facilitators and barriers to family caregivers' decision-making, which was not limited to decision-making on EoL care for PWDs [16] and substitute decision-makers (SDMs)' experiences during the EoL stage of PWDs [18]. However, these prior studies provide limited evidence for guiding informal caregivers' decision-making for PWDs' EoL care. Therefore, evidence-based recommendations grounded in caregivers' perspectives are needed to support their EoL care decision-making for PWDs.

The meta-aggregation approach developed by the Joanna Briggs Institute (JBI) aims to generate recommendations for clinical practice and policy [27]. This study employed meta-aggregation to synthesize qualitative evidence on informal caregivers' experiences regarding decision-making in EoL care for PWDs. Given that EoL care encompasses physical, psychological, social, and spiritual dimensions [9], the experiences of decision-making should be considered comprehensively, beyond specific issues such as LST or hospice referral. Moreover, the experiences of caregivers with formal legal authority [18,28] may differ from those without clearly defined decision-making authority. In particular, the uncertainty, confusion, and psychological impact experienced by caregivers without formal legal authority during EoL care decision-making for PWDs can be more severe than those of caregivers who do possess such authority. Therefore, this study focused on synthesizing the experiences of informal caregivers who are not legally authorized to make EoL care decisions for PWDs.

The guiding research question was "What are informal caregivers' experiences of decision-making in end-of-life care for their relatives with dementia?" While previous syntheses have examined caregivers' decision-making experiences across general care contexts, this review specifically focuses on EoL care decision-making for PWDs. By integrating findings on the decision-making process, influences shaping decision-making, and the emotions and needs experienced during decision-making, this study provides an integrated and comprehensive understanding of informal caregivers' experiences. The findings provide foundational evidence for developing practical recommendations that guide informal caregivers' decision-making, reduce their burden and distress, and promote more satisfying decision-making experiences. They also support the development of strategies to enhance informal caregivers' psychological well-being during EoL care decisionmaking for PWDs.

METHODS

1. Study Design

This study aimed to synthesize qualitative evidence on informal caregivers' experiences of decision-making regarding EoL care for PWDs, using the meta-aggregation approach as presented by JBI [27]. The systematic review and qualitative synthesis were conducted in accordance with the JBI Manual for Evidence Synthesis [27].

2. Inclusion and Exclusion Criteria

The inclusion criteria were established according to the PICo (participants, phenomena of interest, and context) format described in the JBI Manual [27]. The PICo for this review was as follows: informal caregivers (participants); decision-making regarding EoL care for PWDs (phenomena of interest); and all settings, including hospitals, nursing homes, and community settings (context). The inclusion criteria for this review were as follows: studies that (1) targeted individuals who provided unpaid care for a relative with dementia, and (2) explored the experiences of decision-making regarding EoL care for a relative with dementia in any setting, without restrictions on culture or region. In cases where the research participants included PWDs or healthcare professionals (HCPs), only the informal caregivers' experiences were extracted and included in the synthesis. Only qualitative studies, irrespective of specific methodology, were included.

The following studies were excluded if they:(1) focused solely on the experiences of HCPs, PWDs, or individuals with legal authority to make decisions on behalf of PWDs; (2) targeted all nursing home residents or hospitalized patients regardless of dementia diagnosis; (3) addressed euthanasia or assisted suicide; (4) focused on EoL care in specific situations such as COVID-19; (5) were conducted for intervention development; or (6) did not address decisionmaking in EoL care in the study's purpose, research questions, or findings.

3. Literature Search and Study Selection

The literature search was conducted following the threephase process suggested by JBI [27]. In phase one, two reviewers independently screened the titles and abstracts of articles in the PubMed and CINAHL databases to identify appropriate search terms.

In phase two, two reviewers collaborated to develop a search strategy for each database. After confirming the strategies with a librarian, reviewer 2 conducted the searches in each database. The databases searched included Pub-Med, Embase, Ovid MEDLINE, CINAHL, Web of Science, Scopus, KISS, Kmbase, KoreaMed, RISS, and ScienceON. A search strategy was developed for each database, combining Medical Subject Headings (MeSH) or EMTREE terms with text words for "dementia," "informal caregiver," "end-of-life care," and "decision-making," using Boolean operators. The terms used in the search strategy were as follows: for "dementia", "dementia", "dementia*", "Alzheimer*", and "Alzheimer disease" were combined with "OR"; for "informal caregiver", "caregivers", "caregiver", "informal caregiver", "carer*", "family", "famil*", "family member*", "family care*", "family caregivers", and "relative*" were combined with "OR"; for "end-of-life care", "terminal care", "palliative care", "hospice care", "end-of-life care", "end of life care", and "endof-life treatment*" were combined with "OR"; for "decision-making", "decision making", "decision-making", "decision*", "decisional conflict*", and "decision-making conflict*" were combined with "OR"; and the four concepts - "dementia", "informal caregiver", "end-of-life care", and "decision-making" were combined with "AND". An example of the search strategy and its results from PubMed is provided in Appendix 1.

In phase three, two reviewers independently conducted a grey literature search using ProQuest Dissertations & Theses Global and OpenGrey and performed a citation searches for the reference lists of the included studies. The literature search and selection were conducted from February 13 to June 28, 2025.

4. Quality Appraisal

Quality appraisal of the selected studies was conducted using the Critical Appraisal Checklist for Qualitative Research developed by JBI [27]. This tool consists of 10 items to assess the quality of qualitative literature, with each item rated as 'yes', 'no', 'unclear', or 'not applicable'. Detailed criteria for conducting the quality assessment of the selected studies were established through consensus between the two reviewers. Because the inclusion of studies with limited 'yes's ratings across multiple appraisal items may weaken the credibility and applicability of the synthesized findings, it was necessary to determine the proportion of items rated 'yes'. Thus, cases in which the quality assessment yielded fewer than five 'yes' responses were excluded from the synthesis. Moreover, JBI's metaaggregation derives findings by extracting the authors' analytic interpretations of the data from each article, along with illustrations [27]. Illustrations represent direct quotations of participants' voices, fieldwork observations, or other supporting data [27]. Therefore, regardless of the total number of 'yes' responses, cases in which item 8 - "Are participants, and their voices, adequately represented?" - was not rated 'yes' were excluded from the synthesis. After two reviewers independently conducted a qualitative assessment of each paper, the assessments were finalized through discussion between the two reviewers.

5. Data Extraction and Synthesis

The elements for extracting the general characteristics of the studies included in the synthesis were determined collaboratively by two reviewers, based on the JBI Manual [27]. The general characteristics of the studies included the author and year of publication, country, methodology, participants, context related to PWDs, data collection, data analysis, and study aim. Reviewer 2 extracted the data, and reviewer 1 subsequently verified it.

Data synthesis followed the three steps suggested by JBI [27]. In step 1, two reviewers independently read the results sections of the studies to extract findings and their illustrations. Themes, descriptions, interpretations, and metaphors related to informal caregivers' EoL care decision-making were extracted from the original studies. Two reviewers independently assessed the credibility of the extracted findings and their supporting illustrations, using three criteria: unequivocal, credible, and not supported. The reviewers then compared their credibility assessments and reached a consensus on each finding through discussion. In step 2, the findings and their illustrations, whose credibility was evaluated as unequivocal or credible, were repeatedly reviewed, and the findings were organized and categorized according to similarity in wording or meaning. Reviewer 2 conducted the assembly of findings and the development of categories, and reviewer 1 verified them. The categorization was finalized after four rounds of discussion between the two reviewers. In step 3, reviewer 2 developed the synthesized findings based on the relevance of the categories, and reviewer 1 verified the results. The synthesized findings were finalized after four rounds of discussion between the two reviewers.

6. Confidence Assessment of the Synthesized Findings

The confidence of the synthesized findings was assessed using the ConQual approach developed by the JBI [27]. For each study included, overall quality was initially rated from high to very low, with qualitative studies rated high and expert opinion rated low. Dependability was then evaluated using five questions from the JBI Critical Appraisal Checklist regarding the congruence between the research question, data collection, analysis, and researcher's position and influence (Q2, Q3, Q4, Q6, Q7). Dependability levels were adjusted according to the number of 'yes' responses: ratings were maintained for 4~5 'yes' responses, downgraded by one level for 2~3 'yes' responses, and downgraded by two levels for 0~1 'yes' responses. Credibility was then determined by the types of findings: if all findings were unequivocal, the rating was maintained; a mix of unequivocal and credible findings led to a one-level downgrade; and a mix of credible and unsupported findings led to a three-level downgrade. Finally, an overall confidence level (high, moderate, low, or very low) was assigned to each synthesized finding. Because the ConQual approach assesses the level of confidence for each synthesized finding, it enables HCPs to determine the confidence level of the evidence when applying the synthesized results to clinical practice [29].

RESULTS

1. Study Selection

A total of 2,286 studies were retrieved from databases, and 740 duplicates were removed by reviewer 2. Two reviewers independently screened the titles and abstracts of 1,546 studies, excluding 1,430 that did not meet eligibility criteria. Reviewer 2 attempted to retrieve full texts for 116 studies but could not obtain 25 (13 available only as abstracts; 12 not in English or Korean). Two reviewers then independently assessed 91 full texts, excluding 67 for the following reasons: not relevant population (n=7); not relevant phenomenon of interest (n=37); and not qualitative research (n=23). No additional studies were identified through grey literature or citation searches. Ultimately, 24 studies (23 journal articles and one dissertation) were included in the quality appraisal as potential studies for synthesis (Figure 1).

Fig. 1.

Flow diagram for study selection.

2. Quality Appraisal of Selected Studies

Among the 24 studies, one [E1] had fewer than five 'yes' responses, and two [E2,E3] were rated 'unclear' for item 8; therefore, three studies were excluded from the synthesis (Figure 1). Of the 21 studies included, three [S3,S8,S20] were rated 'yes' for all 10 items. Regarding each item, Q2, Q3, Q5, Q8, and Q10 were all rated 'yes' in all 21 studies. In item Q1, philosophical perspective was unclear presented in three studies [S2,S7,S16]. In Q4, the data analysis process for S16 was not specifically stated. In item Q9, there was unclear ethical approval for S2. Most studies did not explicitly state the researchers' cultural or theoretical positions (Q6) or consider the researchers' influence on the study (Q7). The quality appraisal results are presented in Table 1.

Table 1

Quality Appraisal of Studies Included in the Synthesis

3. General Characteristics of Included Studies

Table 2 summarizes the general characteristics of the 21 studies included in the synthesis, published between 2000 and 2023. Studies were conducted in the United States (n=8), the United Kingdom/England (n=5), Canada (n=2), and one each in Italy, Singapore, Malta, Australia, New Zealand, and the Netherlands. The total sample comprised 502 participants. Twelve studies focused on late, severe, or advanced stages of dementia, two covered the entire disease course, and four addressed the context of PWDs' death. The contexts in which caregivers' experiences of decision-making were explored included nursing homes (n=10), communities (n=5), and hospitals (n=3), as well as hospice centers, mental health services, general practices, dementia clinics, and geriatric institutions. Data were collected via semi-structured or in-depth interviews and focus groups, with one study including blog posts and another incorporating observations. Analytical approaches included thematic analysis, phenomenology, grounded theory, qualitative content analysis, Miles et al. (2020)'s model, qualitative descriptive approach, and framework analysis.

Table 2

General Characteristics of Studies Included in the Synthesis

4. Synthesized Findings

A total of 139 findings were extracted, including 132 unequivocal and 7 credible findings. Nine findings rated as not supported at the level of credibility were excluded from the synthesis. Finally, three synthesized findings were developed from 9 categories (Table 3).

Table 3

Synthesized Findings

1) Formation and readiness in EoL care decision-making for PWDs

The first synthesized finding, "formation and readiness in EoL care decision-making for PWDs," was derived from three categories addressing how caregivers are assigned decision-making roles, whether prior EoL care discussions occurred, and caregivers' readiness to accept responsibility for making EoL care decisions.

(1) Given the role of decision-making in EoL care on behalf of PWDs

Caregivers were assigned roles in EoL care decisionmaking on behalf of PWDs [S7,S9]. This responsibility was conferred in three ways, either formally or informally [S7, S9]: they were named by PWDs before cognitive decline; assumed decision-making as an extension of their caregiving role; or voluntarily took on the role of decisionmaker.

I mean…somebody has to make the decisions, and it's me. Three years ago (mother) gave me Power of Attorney. She was pretty clear. We went to an attor-ney… we were able to get through that because, you know, (she) was pretty clear… at that point. (p. 254, S9)

(Caregiving and decision making) go together for me…. I look at them the same. I mean somebody has to make a decision and we can't deal with our elders and their health like it's fly by the seat of your pants kind of thing you know what I mean.(p. 88, S7)

Nobody really wanted to step up honestly. Nobody really wanted to step up. So, I did. (p. 88, S7)

(2) Previous discussion about EoL care for PWDs

Caregivers were classified based on whether they had prior discussions about EoL care with PWDs. Some had engaged in formal or informal discussions, facilitated by ACP [S19,S21], while others had not participated in such conversations with PWDs or ACP [S13,S19]. This was because PWDs were focused on the present and avoided discussing EoL care [S19], or because caregivers felt uncomfortable and were reluctant to discuss PWDs' EoL care [S5,S13].

We knew that beforehand, my mother had already said, no resuscitation, then we stated this and she agreed to that, no more fuzz to her body.(…) Yes, that was documented.(p. 925, S19)

My mother never wanted to talk about that. She never said, like, I would want it in this or that way, or end-of-life treatment in this or that moment. It was not a topic for discussion, no.(p. 926, S19)

(3) Readiness to accept responsibility for making decisions about EoL care for PWDs

Caregivers' readiness to assume responsibility for EoL care decision-making fell into two categories. Some caregivers were prepared and accepted the role comfortably [S7,S8]. However, most were unfamiliar with the decisions they faced, felt inadequate to act on behalf of PWDs [S6, S11], and assumed the role without fully understanding it [S6,S7]. Decision-making was particularly difficult for those unprepared [S16], and many preferred to be informed when PWDs were near death and to make decisions at that time [S20].

It is my responsibility to make those hard decisions. I cannot pass that task on to anyone else. (p. 158, S8)

I wasn't ready (laughs). Honestly, I, I, was not ready. (p. 88, S7)

2) Factors and emotional impact in EoL care decision-making for PWDs

The second synthesized finding was "factors and emotional impact in EoL care decision-making for PWDs" generated from four categories. The four categories included barriers and facilitators in decision-making, bases for decision-making, and emotional impact associated with decision-making.

(1) Barriers

Uncertainty. Caregivers experienced considerable uncertainty in EoL care decision-making for PWDs [S1,S6,S8, S12,S14,S17,S19]. Due to PWDs' cognitive and communication impairments, caregivers were unsure about PWDs' health conditions, QoL [S6], and how to best address their needs [S14]. They also questioned how their decisions might affect PWDs' life and death [S1,S17,S19], particularly when evaluating whether treatments such as artificial nutrition, antibiotics, or CPR would provide comfort [S8,S11,S12]. Withholding treatment was often viewed as unethical, as caregivers feared it signified abandonment or hastened death [S4,S12]. Even when PWDs' EoL wishes were known, caregivers faced ethical ambiguity [S19]. In some cases, treatment costs further complicated decisions, as uncertain prognosis hindered cost estimation and planning [S7,S13]. This uncertainty complicated caregivers' decision-making, and they struggled to make decisions under such circumstances [S6,S8,S12,S13].

The line between giving and not giving treatment is broad and gray. It is not clear cut. (p. 161, S8)

A lack of knowledge. Most caregivers had a poor understanding of the trajectory of dementia, the dying process, and health conditions at the terminal stages of dementia [S5,S12,S16], and they made decisions based on limited knowledge [S5,S12]. Additionally, caregivers were unaware of the purpose and process of applying LST or how it would impact PWDs [S4,S5,S15,S16], leading them to choose aggressive treatments that were contrary to the patients' wishes or intended goals of care [S4,S5,S15].

She seemed to have picked up a chest infection. Now, I'm not sure whether, just a few days before she'd had a flu injection, whether that that was a possible cause... (p. 267, S16)

Negative interaction with HCPs. Negative interaction with HCPs was also a barrier to caregivers' decision-making regarding EoL care for PWDs [S7]. Limited communication and contact with HCPs [S1,S12-S14], conflicts arising from HCPs' aggressive and unilateral treatment decisions [S4,S6-S8], and a lack of continuity of care [S12,S14, S16] contributed to this issue. Although caregivers expected HCPs to provide education, advice, and guidance, these expectations were unmet [S1]. Due to this limited communication and contact with HCPs, caregivers did not fully understand the PWDs' condition [S12], HCPs failed to grasp the needs of caregivers and PWDs [S12,S16]. As a result, caregivers felt unprepared to make decisions regarding PWDs' EoL care [S8,S13].

HCPs often continued aggressive treatments despite PWDs' deteriorating health, poor QoL, and lack of survival prospects [S8], and such interventions were frequently administered without caregivers' consultation or consent [S4,S6,S7]. Regarding the lack of continuity of care, doctors changed frequently [S12], and communication among staff and institutions was limited [S14,S16]. Caregivers repeatedly had to recount the same information [S14], and PWDs were often labeled by their disease rather than recognized as an individual [S14]. Collectively, these negative interactions with HCPs hindered caregivers' decision-making [S7, S14] and made the process increasingly difficult [S3,S7,S14].

I called the ambulance, and they took her over to the hospital. Before then, she was eating her food when I pureed it in the mixer and stuff. But when she got to the hospital, they said she wouldn't eat, so when I got there the second day, (I saw), they had put the tube feeding in her stomach. And they didn't even ask me about that!. (p. 90, S7)

Disagreements and conflicts between family members. When making decisions on behalf of PWDs, caregivers often encountered disagreement with other family members [S8,S11,S13]. Disagreements among family led to decisionmaking difficulties and family conflict [S8,S10,S11,S13]. These disagreements and conflicts caused caregivers considerable distress and pressure [S4,S18], and at times led them to make decisions they did not fully endorse in order to avoid further conflict [S4,S7].

She (stepdaughter) wouldn't dream of discussing. Or, if you tried it, she would just tell you to - 'You're going to try to get rid of him (person with dementia), you know, you're going to kill him off.' You know, that would be her response. (p. 12, S13)

(2) Facilitators

Support from HCPs [S7,S12,S18] and communication with family members [S7,S15,S20] facilitated caregivers' decision-making. Caregivers felt supported by positive interactions with HCPs, HCPs' kindness, and acknowledged the burden of decision-making from HCPs [S7,S18]. Trustbased communication with HCPs contributed to satisfaction with the treatment provided to PWDs [S15]. Commu-nication with family members about PWDs' preferences and the perceived right decisions also provided caregivers with a supportive foundation for decision-making [S7,S20].

(Doctor) was absolutely lovely with us, spoke very gently with us, explained everything and we said 'yes, it's time, we know it's time'. I cried that day and he said, 'Look, you've been the "strong one" the whole way' and I said 'I know'.(p. 1648, S18)

(3) Bases for decision-making

When making EoL care decisions for PWDs, caregivers primarily relied on PWDs' expressed wishes [S9,S15,S16], conveyed through conversations [S8,S9,S18,S20] or ACP [S8,S9] prior to health deterioration. When PWDs' wishes were unknown, caregivers made decisions in the best interests of PWDs based on what they believed reflected PWDs' values and preferences [S9,S15,S20], while also considering the PWDs' health status, QoL, and comfort [S9,S18]. For caregivers, the PWDs' QoL was a crucial factor in justifying decisions regarding the level and intensity of treatment [S6,S8,S11,S16]. As the PWDs' health deteriorated and QoL could no longer be expected, caregivers shifted their decision-making criteria toward the PWDs' comfort [S6]. At this point, caregivers made decisions to avoid the PWDs' pain, distress, and suffering, to maximize comfort [S5-S7, S12], and to respect the PWDs' peaceful death rather than prolonging life [S4,S9,S12].

Dad was clear that he did not want life sustaining measures. He said it repeatedly. So I know what to do when we get there. (p. 172, S8)

(4) Emotional impact associated with decision-making

When assigned the role of decision-maker, some caregivers expressed positive emotions, viewing it as the last meaningful act they could perform for PWDs [S8]. However, most experienced negative emotions, including conflict, burden, stress, and overwhelm [S8,S12,S15,S16]. Specifically, caregivers were afraid that they might make wrong decisions that could have negative consequences for PWDs or even lead to PWDs' death, and that they would regret making such decisions [S4]. Caregivers had difficulty controlling their own emotions while trying to make the best decisions for PWDs [S13]. After decisions were made, some felt satisfaction and relief, believing their choices aligned with PWDs' wishes [S7,S18], but most reported regret and persistent negative emotions [S7,S10]. The decision-making process also had adverse physical, emotional, and social impacts, causing sadness, guilt, and distress [S13].

It is a gift to do this for him (husband). One of the last things I can do for him.(p. 160, S8)

I have an overwhelming sense of responsibility. What if I am wrong and make a bad decision?.(p. 160, S8)

3) Caregivers' needs in EoL care decision-making for PWDs

The last synthesized finding was "caregivers' needs in EoL care decision-making for PWDs" generated from two categories. The categories included 'doing the 'right thing' for loved ones' and 'need for more support, information, and understanding of PWDs'.

(1) Doing the 'right thing' for loved ones

Caregivers were uncertain about what was right for PWDs, but they desperately wanted to do the right thing for PWDs [S12,S13]. Caregivers also hoped they had done everything they could for PWDs [S5].

There is a judgement there that you have to ask yourself - 'When I'm saying what is right, is it what is genuinely right for her or is it right for me?' And those are sometimes competing priorities. I like to think that they are more or less the same. But there are times when they might not be.(p. 12, S13)

(2) Need for more support, information, and understanding of PWDs

Caregivers required more support and information to make decisions [S10,S15]. They sought dialogue and guidance regarding their decision-making role [S12] and preferred consulting with others rather than deciding alone [S5,S13]. Regular meetings with HCPs were desired to obtain clear explanations and sufficient information about PWDs' dementia progression, functional and medical changes, and treatment options [S2,S6,S17]. Caregivers wanted to fully understand this information, participate in treatment decisions, and have their opinions reflected in outcomes [S3,S6,S15]. Trusting relationships with HCPs, along with empathy and psychological support, were also essential [S2,S3,S7]. Furthermore, caregivers emphasized that understanding PWDs and their wishes is critical for optimal decision-making [S8,S13,S14]. While ACP was recognized as helpful in protecting PWDs [S21], caregivers highlighted that documentation alone is insufficient and must be accompanied by thorough dialogue between PWDs and their families [S8].

Well, for me, I think that in terms of the relationship (with the) family, it might have been good to have meetings with the staff, to see what is going on with (my relative), treatments, the evolution of the disease as well as getting to know each other a little bit. It would reassure us. We can see that they really are interested in the patients and in us as well. But sometimes we get the impression that we are important but when it comes to the care of the patients, we don't have a lot to say. Perhaps if we met regularly, we'd have a little more say in the decisions being made. (p. 238, S3)

5. Confidence of the synthesized findings

Table 4 presents the ConQual scores of the synthesized findings. As all included studies were qualitative, the initial ratings for the three synthesized findings were high. However, because the number of studies with 4~5 'yes' responses did not exceed those with 2~3 'yes' responses, the dependability of all three findings was downgraded to moderate. The first and third synthesized findings, composed entirely of unequivocal findings, were ultimately rated moderate, whereas the second synthesized finding, which included seven credible findings, was rated low.

Table 4

Confidence of the Synthesized Findings

DISCUSSION

This study identified three synthesized findings derived from nine categories of informal caregivers' experiences with EoL care decision-making for PWDs. The first synthesized finding examined how caregivers were assigned decision-making roles, their readiness to accept this responsibility, and whether prior discussions about EoL care had taken place. The EAPC recommended supporting the emerging role of family caregivers as decision-makers in palliative care for PWDs [19]. However, caregivers who were clearly nominated or voluntarily assumed the role and who had engaged in prior discussion may approach decision-making differently from those who were unprepared or had not discussed EoL care. A study reported that proxies found decision-making difficult when they were unaware of PWDs' wishes and felt uncomfortable by the responsibility [25]. Therefore, HCPs should first assess how caregivers were assigned the decision-making role, their prior experiences with discussing EoL care, and their readiness to accept this responsibility, and then tailor their approach based on each caregiver's situation. It is necessary to initiate prior discussions about EoL care through regular meetings with PWDs and caregivers, beginning at the time of dementia diagnosis or at trigger points such as symptom worsening or changes in the PWD's functional roles.

In the second synthesized finding, barriers and facilitators in EoL care decision-making for PWDs were identified. Uncertainty emerged as a major barrier; caregivers were unsure about PWDs' health status, QoL, best decisions to meet PWDs' needs, potential impacts on comfort, life, and death, and the expected costs of care. Ethical uncertainty also complicated decision-making. In the qualitative synthesis of SDMs' experiences in the EoL stage of PWDs, Cresp et al. [18] reported that uncertainty was a major barrier and often caused dilemmas in decision-making. A lack of knowledge was another barrier identified in this review. Caregivers' limited understanding of natural death and LST led them to make decisions that conflicted with their wishes and ultimate goals for PWDs. A crosssectional study found that when family caregivers did not anticipate the PWD's death within one year and had not received information about treatment options from physicians, they were 7.4 and 3.7 times more likely to perform CPR on PWDs [21].

Although the findings do not establish a clear causal relationship between uncertainty and lack of knowledge, these factors appear interrelated and hinder caregivers' decision-making. In the study by Cresp et al. [18], SDMs experienced uncertainty about PWDs' prognosis due to limited knowledge of the dementia trajectory and terminal status, and this uncertainty made them reactive in their decisions. Similarly, in a review examining surrogates' uncertainty across quantitative and qualitative evidence, a lack of knowledge of the clinical situation of PWDs was identified as an antecedent contributing to uncertainty in EoL care decision-making [30]. Therefore, HCPs should have sufficient time to educate caregivers about the trajectory of dementia, PWDs' health condition and dying process, and the risks and benefits of each treatment option [25,26]. HCPs should also make time to counsel caregivers on making the best decisions for PWDs based on this education. Especially, HCPs should inform caregivers that uncertainty is natural due to limited communication with PWDs in the EoL stage and that EoL decisions are inherently value laden [26]. HCPs must support caregivers to reduce uncertainty and make the best possible decisions despite it. Education and consultation for caregivers should be systematically organized into a program within the health system.

In this review, interaction with HCPs acted as both a barrier and a facilitator in caregivers' EoL care decisionmaking. Caregivers were supported by positive interactions with HCPs, including kindness, acknowledgment of their burden, and trust-based communication. In contrast, limited communication and contact with HCPs, as well as conflicts caused by aggressive and unilateral treatment decisions, hindered their decision-making. Consistent with previous findings [26], proxies felt discouraged when HCPs dismissed their opinions or recommended LST against the PWDs' wishes. This review also showed that discontinuity of care often led HCPs to treat PWDs merely as a disease, creating additional barriers for caregivers. Noh and Kwak [26] reported that when HCPs do not treat PWDs solely as disease, caregivers are more confident in accepting treatment recommendations. For HCPs' guidance to be meaningful, they must first demonstrate understanding of and interest in both PWDs and their caregivers and establish rapport [26]. They should then provide positive interaction through faithful communication and ongoing contact while developing the treatment plan [25]. HCPs need to listen to caregivers' opinions about treatment options, respect their decisions, and collaborate with them to establish shared goals and treatment plans for PWDs' EoL care. Furthermore, the EoL care pathway should be established with PWDs and caregivers as early as possible, incorporating the PWD's wishes, goals, and plans for EoL care. To ensure continuity of care, the EoL care pathway should be shareable among HCPs across community health centers, long-term care facilities, and hospitals when needed [1]. To support this, models and a national system for the EoL care pathway need to be developed [1,2].

The findings of this review indicate that family members function as both barriers and facilitators in caregivers' decision-making. Consistent with previous studies [18,26,31], close communication and collaboration with family members supported decision-making, whereas disagreement, criticism, and conflict hindered it. Family conflict often delayed decisions and led to aggressive treatments that were distressing to PWDs [31]. If disagreement among family members stems from differing values regarding dignified dying or varying understandings of treatment options, mediation by HCPs to facilitate open discussions and shared decision-making may be appropriate [31]. However, when conflicts intensify and lead to mutual criticism among family members beyond simple disagreement, active psychological nursing interventions, such as family therapy, may be beneficial. In addition, caregivers may struggle to accept differing opinions from family members who were less involved in care [26], and levels of understanding about the PWDs' condition may vary among family members [26]. Thus, when discussing treatment plans, HCPs should engage both primary caregivers and other family members to promote informed participation and consensus [31].

In this review, caregivers primarily based decisions on PWDs' wishes, consistent with a previous study [17] in which 88% of relatives agreed that HCPs should routinely ascertain PWDs' wishes for EoL care upon nursing home admission and follow their ADs. These findings highlight the importance of discussing PWDs' wishes before communication and decision-making abilities decline. However, as noted in the first synthesized finding, reluctance or avoidance by PWDs or caregivers can hinder such discussions, often due to stigma, taboos surrounding dementia, or anticipatory grief and fear related to terminal illness [8]. Nonetheless, preliminary discussions facilitate clearer understanding of PWDs' wishes, preferences, and values, reduce anticipatory fears, and establish explicit goals for EoL care [8]. Therefore, HCPs should implement strategies to promote active participation of PWDs and caregivers in advance care discussions.

In this review, PWDs' QoL and comfort were key factors guiding decisions on treatment level and intensity. A qualitative synthesis of SDMs' experiences reported that balancing active treatment with withholding treatment relied heavily on interpretations of PWDs' QoL [18]. Similarly, 95% of PWDs' relatives agreed that PWDs' well-being should be prioritized when deciding to withhold treatment [17], and expert consensus suggested that maximizing comfort was the primary goal in EoL care for PWDs [19]. However, QoL may be perceived differently across individuals and cultures, and the QoL of PWDs at the end of life must inevitably be interpreted by others. Furthermore, given this study's finding that disagreements and conflicts among family members cause considerable distress for caregivers during decision-making, the QoL of PWDs should be assessed collaboratively by the primary informal caregiver, other family members, and HCPs.

Regarding decision-making, caregivers in this review experienced both positive and negative emotional impacts. Some caregivers reported positive feelings, viewing decision-making as the last meaningful act they could perform for PWDs. A qualitative study exploring proxies' guilt in EoL decisions [25] found that proxies felt honored rather than guilty, believing they understood the PWDs and were entrusted to ensure their wishes were respected. In contrast, consistent with this review and previous studies [28,32-34], many caregivers experienced negative emotions related to their decision-making role. Caregivers feared making decisions that might hasten or cause death, leading to long-term regret [28,34]. This fear produced feelings of overwhelm, stress, and burden [32-34]. Although caregivers felt satisfaction and relief when decisions aligned with PWDs' wishes, most still reported regret. In Poole et al. [35], caregivers valued documented EoL wishes and preferences, which supported confident decisionmaking, whereas those without explicit discussions felt inadequate in advocating for PWDs, resulting in distress [35]. These findings highlight the need for HCPs to discuss with caregivers the emotional experiences associated with decision-making and their underlying causes [25]. HCPs should also promote confident decision-making by providing emotional support, education about EoL health issues and treatment options, and opportunities to explore PWDs' wishes and preferences.

The final synthesized finding of this review highlighted caregivers' need for additional support and information in decision-making. A study reported that 75% of PWDs' relatives agreed that guidelines are needed for making decisions regarding LST for PWDs [17]. The Ottawa Decision Support Framework (ODSF) provides a structure for identifying decisional needs and guiding decision support interventions for patients, families, and practitioners facing difficult health decisions [36]. According to ODSF, decision support by HCPs should include discussing decisional roles, providing information, verifying understanding, establishing rapport, and facilitating interactive communication [36]. Davies et al. [37] developed a decision aid based on the ODSF to support family caregivers in making decisions about PWDs' EoL care. Their follow-up study confirmed that the decision aid was helpful for family caregivers in enhancing conversations and confidence regarding the health issues of PWDs, and in supporting decision-making about EoL care while managing the emotional impact of those decisions [38]. Therefore, in EoL care decisions for PWDs, HCPs should help caregivers clarify their roles through open conversation and guidance, provide sufficient information about the PWDs' disease trajectory and treatment options, ensure caregivers' understanding, and support them in making informed decisions.

The findings of this review also highlighted the need for psychological support from HCPs and a better understanding of PWDs and their wishes. ACP in dementia is defined as a continuous communication process in which PWDs, families, and HCPs engage in ongoing dialogue about preferences, values, and goals for future care and treatment [14]. As dementia progresses, PWDs' engagement in ACP decreases during the EoL stage, while the roles of caregivers and HCPs increase [14]. Therefore, HCPs should establish early partnerships with PWDs and caregivers, maintain continuous communication to understand PWDs and their wishes, and provide psychological support to caregivers facing increasing responsibility in EoL care decision-making.

This study is significant in synthesizing informal caregivers' experiences of EoL care decision-making for PWDs, based on data from 21 articles. The findings provide valuable insights for HCPs to develop recommendations supporting caregivers. However, this review has several limitations. First, many studies included in the synthesis either did not report or were unclear about the researcher's theoretical or cultural position (Q6) and the researcher's influence on the study (Q7), which may have reduced confidence in the synthesized findings. Second, although the inclusion criteria did not restrict the context to a particular culture or region, only studies published in English or Korean were included. This limits cultural diversity and may have introduced bias in understanding caregivers' decision-making experiences. Finally, the studies included in the synthesis were conducted predominantly in North America and Western European countries. As such, the findings may have limited applicability in reflecting the dynamics of EoL care decision-making for PWDs in other cultural contexts; therefore, caution is warranted when interpreting these results.

CONCLUSION

This study synthesized qualitative evidence on caregivers' decision-making regarding EoL care for PWDs. In psychiatric nursing practice, this study can contribute to the mental and psychological health of caregivers by providing a basis for educating, advising, and counseling them on decision-making regarding EoL care from the time of dementia diagnosis through to the death of PWDs. Based on the findings of this review, several areas for future research are suggested. First, studies should further examine caregivers' experiences of EoL care for PWDs in Asian countries to build more comprehensive evidence. Second, recommendations for HCPs should be developed to guide caregivers' decision-making, drawing on the barriers, facilitators, and caregivers' needs identified in this review. Research is also needed to establish strategies that promote proactive discussions about EoL care for PWDs, clarify caregivers' decision-making roles, and enhance their psychological well-being. From a broader perspective, efforts are required to develop an EoL care pathway model that supports PWDs' wishes and strengthens caregivers' decision-making.

Notes

The authors declared no conflicts of interest

AUTHOR CONTRIBUTIONS

Conceptualization or/and Methodology: Park, J

Data curation or/and Analysis: Lee, H & Park, J

Funding acquisition: None

Investigation: Park, J

Project administration or/and Supervision: Park, J

Resources or/and Software: Park, J

Validation: Park, J

Visualization: Park, J

Writing: original draft or/and review & editing: Lee, H & Park, J

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Appendix

Appendix 1. A Search Strategy and Results from PubMed (as of February 28, 2025)

Appendix 2. List of Studies Included in the Synthesis

S1. McLennon SM, Davis A, Covington S, Anderson JG. "At the end we feel forgotten": needs, concerns, and advice from blogs of dementia family caregivers. Clinical Nursing Research. 2021; 30(1):82-88. https://doi.org/10.1177/1054773819865871

S2. Zapponi S, Ferreira A, Galvagni P, Roccatagliata C, Rodolfi S, Spina M, et al. Application of palliative care in demented patients: the caregivers' point of view. Acta Biomed for Health Professions. 2018;89(Suppl 7):78-88. https://doi.org/10.23750/abm.v89i7-S.7895

S3. Caron CD, Griffith J, Arcand M. Decision making at the end of life in dementia: how family caregivers perceive their interactions with health care providers in long-term-care settings. Journal of Applied Gerontology. 2005;24(3):231-247. https://doi.org/10.1177/0733464805275766

S4.Malhotra C, Mohamad H, Østbye T, Pollak KI, Balasundaram B, Malhotra R, et al. Discordance between dementia caregivers' goal of care and preference for life-extending treatments. Age and Ageing. 2021;50(4):1382-1390. https://doi.org/10.1093/ageing/afab049

S5. Forbes S, Bern-Klug M, Gessert C. End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship. 2000;32(3):251-258. https://doi.org/10.1111/j.1547-5069.2000.00251.x

S6. Caron CD, Griffith J, Arcand M. End-of-life decision making in dementia: the perspective of family caregivers. Dementia. 2005;4(1):113-136. https://doi.org/10.1177/1471301205049193

S7. Hart AS, Matthews AK, Arslanian-Engoren C, Patil CL, Krassa TJ, Bonner, GJ. Experience of African American surrogate decision makers of patients with dementia. Journal of Hospice & Palliative Nursing. 2022;24(1):84-94. https://doi.org/10.1097/NJH.0000000000000822

S8. Klein ML. Dementia caregivers: an exploration of their knowledge beliefs, and behavior regarding advance care planning for end-of-life care [dissertation]. [Virginia]: Virginia Commonwealth University; 2014. 254 p.

S9. Elliott BA, Gessert CE, Peden-McAlpine C. Family decisionmaking in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences. 2009;23(2):251-258. https://doi.org/10.1111/j.1471-6712.2008.00613.x

S10. Armstrong MJ, Alliance S, Corsentino P, Lunde A, Taylor A. Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: an interview study. Dementia. 2022;21(1):287-303. https://doi.org/10.1177/14713012211038428

S11. Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E, et al. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. Bmj. 2010;341:c4184. https://doi.org/10.1136/bmj.c4184

S12. Gessert CE, Forbes S, Bern-Klug M. Planning end-of-life care for patients with dementia: roles of families and health professionals. OMEGA-Journal of Death and Dying. 2001;42(4): 273-291. https://doi.org/10.2190/2MT2-5GYU-GXVV-95NE

S13. Davies N, De Souza T, Rait G, Meehan J, Sampson EL. Developing an applied model for making decisions towards the end of life about care for someone with dementia. PLoS One. 2021;16(5):e0252464. https://doi.org/10.1371/journal.pone.0252464

S14. Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, et al. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations. 2018;21(1):118-127. https://doi.org/10.1111/hex.12593

S15. Dimech J, Agius E, Hughes JC, Bartolo P. Challenges faced by patients, relatives and clinicians in end-stage dementia decision- making: a qualitative study of swallowing problems. Journal of Medical Ethics. 2021;47:e39. https://doi.org/10.1136/medethics-2020-106222

S16. Thune-Boyle ICV, Sampson EL, Jones L, King M, Lee DR, Blanchard MR. Challenges to improving end of life care of people with advanced dementia in the UK. Dementia. 2010;9 (2):259-284. https://doi.org/10.1177/1471301209354026

S17. Schlag KE, Britt KC, Kwak J, Burrows DR, Fry L. Decisionsupport needs of caregivers considering hospice enrollment for a family member with dementia. American Journal of Hospice and Palliative Medicine®. 2022;39(7):812-821. https://doi.org/10.1177/10499091211056035

S18. Moon F, Kissane DW, McDermott F. Developing a complexity- informed approach to hospital end-of-life care for people with dementia and their families. International Social Work. 2023;66(6):1639-1654. https://doi.org/10.1177/00208728221108934

S19. Dekker NL, Bolt SR. Relating to the end of life through advance care planning: expectations and experiences of people with dementia and their family caregivers. Dementia. 2022;21 (3):918-933. https://doi.org/10.1177/14713012211066370

S20. de Vries K, Drury-Ruddlesden J. Advance care planning for people with dementia: ordinary everyday conversations. Dementia. 2019;18(7-8):3023-3035. https://doi.org/10.1177/1471301218764169

S21. Ashton SE, Roe B, Jack B, McClelland B. End of life care: the experiences of advance care planning amongst family caregivers of people with advanced dementia - a qualitative study. Dementia. 2016;15(5):958-975. https://doi.org/10.1177/1471301214548521

Appendix 3. List of Studies Excluded after Quality Appraisal

E1. Gessert CE., Elliott BA, Peden-McAlpine C. Family decisionmaking for nursing home residents with dementia: rural-urban differences. The Journal of Rural Health. 2006;22(1):1-8. https://doi.org/10.1111/j.1748-0361.2006.00013.x

E2. Carter G, McLaughlin D, Kernohan WG, Hudson P, Clarke M, Froggatt K, et al. The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: a qualitative study. Journal of Advanced Nursing. 2018;74(7):1595-1604. https://doi.org/10.1111/jan.13576

E3. The A, Pasman R, Onwuteaka-Philipsen B, Ribbe M, van der Wal G. Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study. BMJ. 2002;325:1326. https://doi.org/10.1136/bmj.325.7376.1326

Article information Continued

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

Fig. 1.

Flow diagram for study selection.

Table 1

Quality Appraisal of Studies Included in the Synthesis

Author (year)	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10
McLennon et al.(2021)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Zapponi et al. (2018)	U	Y	Y	Y	Y	N	N	Y	U	Y
Caron et al.(2005a)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Malhotra et al. (2021)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Forbes et al.(2000)	Y	Y	Y	Y	Y	N	U	Y	Y	Y
Caron et al. (2005b)	Y	Y	Y	Y	Y	N	U	Y	Y	Y
Hart et al.(2022)	U	Y	Y	Y	Y	Y	N	Y	Y	Y
Klein (2014)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Elliott et al.(2009)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Armstrong et al. (2022)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Livingston et al.(2010)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Gessert et al. (2001)	Y	Y	Y	Y	Y	N	U	Y	Y	Y
Davies et al.(2021)	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Lamahewa et al. (2018)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Dimech et al.(2021)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Thuné-Boyle et al. (2010)	U	Y	Y	U	Y	N	N	Y	Y	Y
Schlag et al.(2022)	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Moon et al. (2023)	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Dekker & Bolt(2022)	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
de Vries & Drury-Ruddlesden (2019)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Ashton et al.(2016)	Y	Y	Y	Y	Y	N	N	Y	Y	Y

N=no; U=unclear; Y=yes.

Q1=congruity between philosophical perspective and research methodology; Q2=congruity between research methodology and research question or objectives; Q3=congruity between research methodology and methods used to collect data; Q4=congruity between research methodology and analysis of data; Q5=congruity between research methodology and interpretation of results; Q6=statement of researcher's cultural or theoretical location; Q7=statement of the researcher's influence on the research; Q8=representation of the participants and their voices; Q9=ethical approval; Q10=relationship of conclusions to interpretation of the data.

Table 2

General Characteristics of Studies Included in the Synthesis

Study No.	Author (year)	Country	Methodology	Participants		Context		Data collection	Data analysis	Aim
Study No.	Author (year)	Country	Methodology	Sample size (Women: Men)	Characteristics	Stage of PWDs	Settings	Data collection	Data analysis	Aim
S1	McLennon et al. (2021)	United States	Qualitative study	6 (6:0)	Informal caregivers of PWDs	Before, during, and after death of PWDs	Not reported	Caregivers' written description from blogs	Thematic analysis	To identify EoL needs, concerns, and advice of family caregivers for PWDs
S2	Zapponi et al. (2018)	Italy	Qualitative research	29 (26:3)	Caregivers of patients with senile dementia receiving treatment at hospitals	Not reported	Nursing home, hospice center	Semistructured interview	Phenomenological approach	To investigate the point of view of caregivers of PWDs receiving palliative care
S3	Caron et al. (2005a)	Canada	Qualitative research	24 (17:7)	Caregivers involved in care decision-making for PWDs	Late-stage dementia	Long-term care facility	In-depth interview	Grounded theory	To identify experience and preoccupations of family caregivers about EoL issues, and specifically, about treatment decision-making processes
S4	Malhotra et al. (2021)	Singapore	Qualitative study	26 (20:6)	Family caregivers of community dwelling PWDs	Severe dementia	Community	Semistructured in-depth interview	Thematic analysis	To explore discordance between EoL care goal and treatment preferences, specifically: exploring factors influencing preferences for life-extending treatment ; and exploring the reasons for preferring life-extending treatment even though the goal of EoL care is not life extension
S5	Forbes et al. (2000)	United States	Qualitative study	28 (20:8)	Family members of individuals with severe dementia residing in nursing homes who have decision-making responsibility for PWDs	Severe dementia	Nursing home	Focus group interview	Qualitative content analysis	To describe decision-making process regarding EoL treatments
S6	Caron et al. (2005b)	Canada	Qualitative study	24 (17:7)	Caregivers involved in care decision-making for PWDs	Late-stage dementia	Long-term care facility	In-depth interview	Grounded theory	To examine concerns and experience of family caregivers regarding EoL, and specifically, to explore the decision-making process
S7	Hart et al. (2022)	United States	Qualitative exploratory case study	8 (6:2)	Surrogates for PWDs' EoL treatment decision-making	Advanced dementia	Not reported	Interview	Miles et al. (2020)'s data analysis model	To describe experience in their roles as surrogate decision makers in making EoL decisions for PWDs
S8	Klein (2014)	United States	Qualitative study	22 (17:5)	Family caregivers caring for PWDs	To early from end stage of dementia	Nursing home, community	Face-to-face semistructured interview	Grounded theory	To explore what caregivers know about ACP, how they participate in the informal ACP process, and how they understand their role as decision makers
S9	Elliott et al. (2009)	United States	Qualitative research	39 (32:7)	Family members of individuals with severe dementia residing in nursing homes	Advanced dementia	Nursing home	Focus group interview	Thematic analysis	To describe the family members' ethical thinking in EoL decision-making process for PWDs
S10	Armstrong et al. (2022)	United States	Qualitative research	30 (27:3)	Informal caregivers of people who died with dementia with Lewy bodies in the prior 5 years	After death of PWDs	Not reported	Semi-structured interview	Qualitative descriptive approach	To investigate the EoL experiences of informal caregivers of people with dementia with Lewy bodies
S11	Livingston et al. (2010)	United Kingdom	Qualitative research	Focus group interview: 43 (31:12); and individual interview: 46 (32:14)	Informal caregivers who make decisions about PWDs care	Different stages of dementia	Mental health services, general practice, neurology dementia clinic	Focus group interview, in-depth individual interview	Thematic content analysis	To understand the difficult decisions family caregivers, make on behalf of PWDs and to identify facilitators and barriers to decision-making.
S12	Gessert et al. (2001)	United States	Qualitative methods	28 (not reported)	Family members who have made or soon will make EoL decisions on behalf of PWDs	Severe dementia	Nursing home	Focus group interview	Qualitative content analysis	To identify family members' experiences of their role as EoL decision makers for PWDs
S13†	Davies et al. (2021)	England	Qualitative study	21 (17:4)	Informal caregivers or surrogate decision makers for PWDs	Late stage or EoL stage of dementia	Memory clinic, general practice	Semistructured interview	Thematic analysis	To explore decision-making process and factors influencing decision-making in EoL care for PWDs, and to develop a decision-making model in the context of dementia EoL care
S14†	Lamahewa et al. (2018)	England	Qualitative methodology	Focus group interview: 7 (not reported); and individual interview: 3 (not reported)	Family caregivers with experience providing EoL care to PWDs	Not reported	Hospital, community	Focus group interview, semi-structured individual interview	Thematic analysis	To identify influences on decision-making for family caregivers at EoL for PWDs
S15†	Dimech et al. (2021)	Malta	Qualitative approach	6 (3:3)	Family members who have made or soon will make decisions about managing PWDs' swallowing difficulties	End-stage of dementia	Geriatric institution	Semistructured, individual interview	Qualitative thematic analysis	To investigate family members' decision-making processes regarding swallowing difficulties in individuals in the end-stage of dementia
S16†	Thuné-Boyle et al. (2010)	United Kingdom	Qualitative study	20 (13:7)	Informal caregivers of people with advanced dementia	Advanced dementia	Hospital	Semistructured interview	Framework analysis	To investigate informal caregivers' EoL care needs and challenges to provide appropriate EoL care for PWDs
S17†	Schlag et al. (2022)	United States	Qualitative study	Focus group interview: 9 (9:0); and individual interview: 4 (4:0)	Family caregivers caring for PWDs	Advanced dementia	Long-term care facility, community	Focus group interview, individual interview	Qualitative content analysis	To identify family caregivers' decision-support needs about hospice enrollment for PWDs
S18†	Moon et al. (2023)	Australia	Qualitative research	12 (Not reported)	Bereaved families of PWDs	PWDs who received palliative, comfort, or EoL care before death	Hospital	Semi-structured qualitative interview	Thematic framework	To explore how family members make decisions regarding EoL treatments for PWDs in hospital
S19†	Dekker & Bolt (2022)	Netherlands	Qualitative research (a secondary analysis of previously conducted qualitative studies)	Study 1 (ethnographic study): Not reported; and study 2 (Qualitative descriptive study): 32 (not reported)	Family caregivers caring for PWDs	Not reported	Nursing home, community	Semistructured in-depth interview, observation	Thematic analysis	To explore how EoL care planning is developed as part of ACP for PWDs and how this relates to the family caregivers' experiences
S20	de Vries & Drury-Ruddlesden (2019)	New Zealand	Qualitative research	23 (22:1)	Family caregivers caring for PWDs	After death of PWDs	Not reported	Interview	Thematic analysis	To identify experiences of support and preparedness for family members before, during and after the death of PWDs
S21	Ashton et al. (2016)	England	Qualitative study	12 (Not reported)	Family caregivers who participated in ACP related to EoL care for PWDs	Advanced dementia	Nursing home	Semi-structured in-depth interview	Content analysis	To explore family caregivers' experiences of ACP for PWDs
Total				502

EoL=end-of-life; PWDs=people with dementia.

ACP=advance care planning; EoL=end-of-life; PWDs=people with dementia;

^†

In addition to informal caregivers, healthcare professionals or people with dementia also participated in the study. This table only includes information related to informal caregivers.