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Journal of Rural Medicine : JRM logoLink to Journal of Rural Medicine : JRM
. 2026 Jan 14;21(1):58–66. doi: 10.2185/jrm.2025-022

Provision of palliative care for patients with advanced dementia across various long-term care settings in Japan: a facility-based survey

Yoshihisa Hirakawa 1, Ayane Komatsu 2, Tami Saito 2, Takashi Yamanaka 3, Jiro Okochi 4, Masafumi Kuzuya 5, Hisayuki Miura 6
PMCID: PMC12816965  PMID: 41568115

Abstract

Objective

This study aimed to assess the proportion of long-term care settings that deliver palliative care services to older clients with advanced dementia and identify trends across different facility types in Japan.

Participants and Methods

A nationwide cross-sectional facility-based survey was conducted between November 2022 and January 2023. The survey targeted 3,000 long-term care facilities, including 1,000 geriatric hospitals, 1,000 geriatric health service facilities, and 1,000 home nursing care stations. Palliative care practices were assessed using an eight-item scale covering pain assessment, symptom management, spiritual care, and family support.

Results

Less than half of the geriatric hospitals supported family participation or addressed the spiritual needs of older clients with dementia, although most conducted pain assessments and prescribed analgesics. In the geriatric health service facilities, fewer than half used pain assessment tools or supported family caregivers’ distress and involvement. In contrast, more than 80% of the home nursing care stations reported implementing most of the listed palliative care practices.

Conclusion

Palliative care provisions for older adults with advanced dementia vary considerably across long-term care settings in Japan. These findings highlight the need to develop specific strategies to enhance palliative care delivery in institutional and community-based settings.

Keywords: dementia, long-term care facility, home nursing care, palliative care, spiritual care

Introduction

Older adults with advanced dementia often experience complex and multifaceted care needs at the end of their lives, including pain, eating problems, aspiration, pressure ulcers, behavioral and psychological symptoms of dementia (BPSD), burdensome transitions, and limited access to palliative care1, 2). Despite growing awareness of these challenges, palliative care for people with dementia remains underdeveloped in many care settings3, 4). Transitions between care environments, such as from home to institutional care, can disrupt the continuity and quality of palliative care; however, little is known about how these transitions affect care delivery5, 6). Palliative care aims to improve the quality of life in individuals with life-limiting conditions by addressing their physical, emotional, and spiritual needs. For patients with advanced dementia, palliative care must be tailored to their unique disease trajectory, which often includes prolonged decline and impaired communication1, 2). However, the provision of palliative care in long-term care (LTC) settings varies widely, and many older adults with dementia receive inadequate symptom management and psychosocial support7,8,9,10).

In Japan, LTC settings, including geriatric hospitals (GHs), geriatric health service facilities (GHSFs), and nursing homes, are increasingly used as places of care and death for older individuals8, 11). These facilities differ in their medical and caregiving functions: GHs provide medical management and rehabilitation; GHSFs offer intermediate institutional care; nursing homes focus on custodial support. Understanding how palliative care is implemented across these diverse settings is essential for improving end-of-life care for people with advanced dementia. Compared with Western countries, such as Canada, the United Kingdom, and the United States, Japan has a lower proportion of in-home or facility deaths12). This discrepancy highlights the need to better align care services with patient preferences and palliative care needs at the end of life13, 14).

Previous studies have estimated the level of palliative care engagement in LTC settings8, 15, 16), whereas others have attempted to implement and evaluate multicomponent palliative care educational programs17, 18). However, data on how palliative care is provided to older adults with advanced dementia in different LTC settings in Japan are lacking. This study aimed to assess the proportion of LTC settings that provide palliative care services for older clients with advanced dementia and to identify distinctive trends across these settings. By clarifying the current landscape of palliative care provision, this study seeks to inform future policies and practices to better meet the needs of this vulnerable population.

Participants and Methods

Study design and participants

This cross-sectional study involved a nationwide, facility-based survey conducted between November 2022 and January 2023. A self-administered questionnaire was mailed to 3,000 agencies: 1,000 group-home GHs, 1,000 GHSFs, and 1,000 home nursing care stations (HNCSs). These agencies were selected using systematic sampling from publicly available national databases: the Japan Medical Analysis Platform for GHs (https://jmap.jp/), the directory of the Japan Association of Geriatric Health Services Facilities for GHSFs, and an open database managed by the Japanese Ministry of Health, Labour and Welfare for HNCSs (https://www.mhlw.go.jp/stf/kaigo-kouhyou_opendata.html). The sampling frames included 3,500 GHs, 3,566 GHSFs (excluding two facilities owing to temporary closure), and 14,068 HNCSs. The head nurse of each facility, designated by the facility director, was invited to participate. As the survey was anonymous, a reminder was mailed to all 3,000 agencies after the nomination deadline in December 2022 to encourage questionnaire returns. This study targeted healthcare professionals rather than individual patients. All questionnaire items were designed to explore professional practices and perspectives related to palliative care for older adults with advanced dementia.

Development of the questionnaire

A qualitative study was conducted before the nationwide survey to ensure the clinical relevance and conceptual validity of the questionnaire. This preliminary investigation aimed to explore expert perspectives on palliative care practices for older adults with advanced dementia, with particular attention to pain assessment and management. A literature review was first conducted in April 2021 to identify key components of “total pain” in dementia palliative care—namely physical, psychological, social, and spiritual dimensions19). This review targeted Japanese books and Japanese translations of English texts on palliative care for older adults with advanced dementia. The findings from this review not only informed the development of reference materials for subsequent interviews but also directly contributed to the formulation of questionnaire items. Specific concepts and terminologies identified in the literature were incorporated into the survey to ensure alignment with established clinical and ethical frameworks. Between January and March 2022, individual in-depth interviews were conducted online with healthcare professionals with substantial experience in primary palliative care for dementia20) (Table 1). Participants were recruited through convenience sampling from the authors’ professional networks. Each interview lasted 30–45 minutes and was conducted by the first author, a geriatrician with expertise in qualitative research. The interviews explored how professionals assess the total pain experienced by patients and their families, strategies for symptom management, such as drip infusion and opioid use, the role of team-based care in addressing complex needs, support mechanisms for family members, and communication and relational interventions aimed at strengthening patient–family relationships and enhancing care quality. The interview data were shared among the research team to gather additional insights and perspectives. Based on interview findings and literature review, an expert panel of dementia care specialists used the Delphi technique to reach consensus on the key components of palliative care practice21). These components were then translated into questionnaire items for the nationwide survey. The final questionnaire was reviewed and refined by the research team to ensure its clarity, relevance, and alignment with clinical realities. For the purposes of this study, advanced dementia was defined as a Functional Assessment Staging score of 6 or 722).

Table 1. Characteristics of the interviewees.

Participant No. Profession Specialty Sex Age range City Setting Experience in dementia care (in years) Other relevant information
1 Physician Emergency medicine Female 40–44 Tokyo Home Unknown Home care physician with abundant clinicalexperience in emergency rooms
2 Physician Geriatricmedicine Female 40–44 Tokyo Hospital 8 University faculty member with abundant clinical experience in home care
3 Physician Home care medicine Male 40–44 Tokyo Hospital Unknown Geriatrician with ample experience in hospital, facility, and home care
4 Physician Palliativemedicine Male 55–59 Akita Hospital 15
5 Physician Palliativemedicine Male 40–44 Miyagi Hospital 10 University faculty member with ample experience in home care
6 Nurse Palliative care/Geriatric care Female 55–59 Hokkaido Hospital Unknown Works at a geriatric hospital
7 Nurse Geriatric care Female 45–49 Hokkaido Home 3 Works at a home-visit nursing station affiliated with a hospital
8 Nurse None Female 50–54 Morioka Hospital 30 Is certified as a care manager and social worker and has experience in home-visit nursing care and community-based integrated care
9 Nurse Palliative care Female 50–54 Akita Hospital 13 Works at an outpatient ward and room for community health
10 Nurse Geriatric care Female 55–59 Saitama Home 25 Works at a home-visit nursing station affiliated with a group home for older people with dementia
11 Nurse Geriatric care Female 40–44 Aichi Hospital 10 Works at a dementia care unit
12 Nurse Dementia care Female 40–44 Aichi Hospital 8 Works at a dementia care unit
13 Nurse Dementia care Female 35–39 Aichi Hospital 10 Works at a dementia care unit
14 Nurse Dementia care/Geriatric care Female 60–64 Hiroshima Home 20 None
15 Nurse Geriatric care Female 40–44 Nagasaki Hospital 20 Works at a room for community health
16 Physical therapist None Male 40–44 Miyagi Home 6 None
17 Caremanager None Female 45–49 Akita Home 20 Chief care manager in charge of education
18 Caremanager None Female 45–49 Miyagi Home 15 Has work experience in long-term care facilities for older people with dementia
19 Caremanager Dementia care Female 40–44 Miyagi Home 18 Has five years of experience of working in along-term care facility
20 Social worker None Female 60–64 Chiba Home 10 Works at a community center
21 Social worker None Female 45–49 Nagano Hospital 30 Works at a room for community health
22 Social worker None Female 40–44 Niigata Home 10 Works at a home clinic providing palliative care
23 Social worker None Male 30–34 Gunma Hospital 10 Works at a room for community health in arehabilitation hospital
24 Social worker None Male 40–44 Kanagawa Facility 10 Founder of small-scale long-term care facilities
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Measures

Palliative care practices

Current palliative care practices for older adults with advanced dementia and their families were assessed using an eight-item, four-point Likert scale (yes, rather yes, rather no, no). The questionnaire explored various dimensions of care, including whether pain assessment was routinely conducted and whether multidisciplinary team meetings were held to address the concept of “total pain”. It also examined the use of standardized pain scales and the prescription of painkillers, including opioids, as part of symptom management strategies. In addition to the physical aspects, the survey investigated attention to patients’ spiritual needs and the implementation of pain and stress management approaches for family members. Furthermore, it assessed the extent to which families were involved in palliative care processes and whether multidisciplinary team meetings were convened to address BPSD.

Background characteristics

The questionnaire also collected data on the participants, facility characteristics, administrative structures, and educational systems. The participant characteristics included age, sex, and nursing experience. Facility characteristics included the year of establishment, ownership, presence of other healthcare facilities within the same organization, facility function (GHSFs only), number of full- or part-time nurses, nurse-to-assistant ratio, and monthly client volume. Administrative data included the staff of certified nurse specialists (geriatrics, dementia, and palliative care), routine assessments for dementia and palliative care, online reception support, community-based advance care planning (ACP) support, availability of planning forms, and advisability of end-of-life palliative care services (GHSFs only). Educational systems include training programs on dementia care, eating assistance, oral care, pressure ulcer prevention and management, decision-making support, ACP, and end-of-life palliative care.

Results

Of the 1,000 facilities in each group, 100 (10%), 170 (17%), and 230 (23%) responded, respectively. The respondents’ characteristics are presented in Table 2. Many GHs and GHSFs are run by medical corporations as private, not-for-profit entities. HNCSs have recently been established through small-scale private corporations. GHs and GHSFs are likely to be affiliated with hospitals, whereas HNCSs are likely to be affiliated with designated home care support offices. In these offices, care managers provide older clients who require home care with home care planning and care coordination services. Although one-fourth of the GHs had one or more certified dementia nurse specialists, few provided education on dementia and palliative care across all study settings. As for service availability, community-based ACP support services were not common across GHs, GHSFs, and HNCSs. However, two-thirds of the GHs and GHSFs used a standardized ACP format, and one-fourth of the GHSFs had regressive policies toward palliative care service provision until death at their facilities.

Table 2. Characteristics of participating facilities.

GHs GHSFs HNCSs
(n=100) (n=170) (n=230)
n % n % n %
Governing body Medical cooperation 75 75 124 72.9 67 29.1
Social walfare cooperation 3 3 22 12.9 12 5.2
Incorporated association 8 8 10 5.9 17 7.4
Private cooperation 0 0 0 0 102 44.3
Others 14 14 13 7.6 23 10
Establishment –1999 49 49 84 49.4 41 17.8
2000–2009 12 12 29 17.1 23 10
2010–2019 10 10 19 11.2 67 29.1
2020– 1 1 0 0 19 8.3
Number of nurses –9 3 3 25 14.7 169 73.5
10–19 28 28 126 74.1 42 18.3
20–49 27 27 11 6.5 2 0.9
50–99 20 20 1 0.6 0 0
100– 16 16 0 0 0 0
Affiliated institution General hospital 42 42 76 44.7 52 22.6
Clinic 10 10 31 18.2 25 10.9
Home nursing care station 35 35 50 29.4 - -
Home care support office 41 41 111 65.3 117 50.9
Certified nurse specialist staffing Geriatrics 2 2 1 0.6 1 0.4
Dementia 25 25 5 2.9 3 1.3
Palliative care 17 17 1 0.6 11 4.8
Education Dementia care 21 21 24 14.1 23 10
Palliative care 5 5 7 4.1 20 8.7
Service availability Online reception support 72 72 133 78.2 19 8.3
Community-based advance care planning support 19 19 22 12.9 42 18.3
Advance care planning form 64 64 113 66.5 86 37.4
Palliative care service to death (GHSFs only) - - 133 78.2 - -
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GHs: geriatric hospitals; GHSFs: geriatric health service facilities; HNCSs: home nursing care stations.

Less than half of the GHSFs used pain assessment tools in their facilities for symptom assessment and analgesic prescriptions by physicians (Table 3). Similarly, less than half of the GHSFs assessed and supported family caregivers’ pain and distress and supported family participation in palliative care for their clients. In addition to multidisciplinary BPSD management conferences, more than 80% of the HNCs practiced all of the listed palliative care practices: pain and symptom assessment in palliative care, multidisciplinary pain and symptom management discussions in palliative care, use of pain assessment tools, opioid and non-opioid analgesic prescriptions by physicians, spiritual support, assessment of and support for family caregivers’ pain and distress, and family members’ participation in palliative care for patients with dementia. Only one-fourth of HNCSs held multidisciplinary BPSD management conferences.

Table 3. Practices of palliative care from the perspectives of participating facilities.

GHs GHSFs HNCSs
(n=100) (n=170) (n=230)
n % n % n
Pain and symptom assessment in palliative care Yes 31 31.00 37 21.80 133
Rather Yes 51 51.00 78 45.90 77
Rather No 10 10.00 28 16.50 9
No 7 7.00 26 15.30 7
Multidisciplinary pain and symptom management discussion in palliative care Yes 25 25.00 38 22.40 80
Rather Yes 40 40.00 66 38.80 105
Rather No 26 26.00 37 21.80 35
No 8 8.00 27 15.90 9
Use of pain assessment tool Yes 39 39.00 10 5.90 95
Rather Yes 32 32.00 30 17.60 93
Rather No 20 20.00 59 34.70 29
No 8 8.00 71 41.80 12
Opioid and non-opioid analgesic prescribing by physician Yes 69 69.00 54 31.80 137
Rather Yes 15 15.00 32 18.80 67
Rather No 7 7.00 22 12.90 12
No 8 8.00 62 36.50 14
Spiritual support Yes 12 12.00 12 7.10 76
Rather Yes 37 37.00 34 20.00 100
Rather No 34 34.00 67 39.40 39
No 16 16.00 56 32.90 15
Assessment of and support for family caregivers’ pain and distress Yes 18 18.00 21 12.40 108
Rather Yes 41 41.00 63 37.10 94
Rather No 29 29.00 54 31.80 19
No 10 10.00 31 18.20 9
Family member’s participation in palliative care for patient with dementia Yes 11 11.00 23 13.50 83
Rather Yes 26 26.00 49 28.80 104
Rather No 43 43.00 50 29.40 29
No 19 19.00 44 25.90 13
Multidisciplinary BPSD management conference Yes 20 20.00 49 28.80 15
Rather Yes 25 25.00 48 28.20 44
Rather No 30 30.00 45 26.50 126
No 18 18.00 26 15.30 39
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GHs: geriatric hospitals; GHSFs: geriatric health service facilities; HNCSs: home nursing care stations; BPSD: behavioral and psychological symptoms of dementia.

Discussion

This study marks the initial exploration of the current state of palliative care for older adults with advanced dementia. Staff education regarding dementia and palliative care is lacking across GHs, GHSFs, and HNCSs. Although many have reported the implementation of a standardized ACP format, very few have acknowledged the provision of spiritual care to older clients with dementia. This study demonstrated the variations in current palliative care practices among these settings in Japan. Despite increased attention during the COVID-19 pandemic, community-based ACP support services have not been widely provided to GHs, GHSFs, or HNCSs. Given the frequent transitions of older individuals with advanced dementia between healthcare settings, sharing ACP information among clinicians across healthcare settings is essential for understanding individual preferences for end-of-life care. HNCSs cover a broad range of palliative care domains for patients with advanced dementia, focusing on caring for family caregivers, the spiritual domain of patients, and pain management. However, few GHs and GHSFs support family participation and spiritual care.

The results highlight a notably low prevalence of dementia care and palliative care education across healthcare settings (i.e., acute care hospitals, nursing homes, and home care support services), which may stem from a lack of clear definitions of staff education. Previous reviews have identified that only a small proportion of healthcare professionals receive structured palliative care training specific to dementia, despite its recognized importance23, 24). The interpretation of the results should be generalized with attention to the informal or “hidden” curriculum. This involves the influence of peers, role models, and norms and practices related to the values, attitudes, beliefs, and behaviors that constitute the culture of palliative care for people with dementia. Studies have shown that the hidden curriculum, transmitted through organizational culture and implicit norms, can significantly shape professional identity and attitudes toward end-of-life care, and even contribute to burnout among junior staff25, 26).

Although many reported using a standardized ACP form in their workplace, very few facilities provided spiritual care to older clients with dementia. There are two possible explanations for this. First, ACP could be examined within a narrower scope. Historically, the measure of ACP success has been the documentation of living wills or advance directive forms. These documents use checkboxes to outline individual preferences for life-sustaining treatments, such as cardiopulmonary resuscitation and mechanical ventilation27). A living will is a legal document that details a patient’s decisions on issues such as pain management or medical treatments that the patient would or would not like to receive as death approaches. Advance directive forms allow individuals to designate a surrogate decision-maker in cases of decisional incapacity28). However, the definition of ACP is now broader than a singular moment or document that supports patients in understanding and sharing their values, life goals, and preferences regarding future medical care27). Second, the lack of a clear definition of spiritual care may have hindered facilities from recognizing spiritual care practices for older people with dementia. Although spirituality attends to an individual’s religious needs as they cope with illness, loss, grief, or pain29), it is often thought of as religiousness alone30).

These results imply that HNCSs can cover a broad range of palliative care domains for patients with advanced dementia, focusing on care for family caregivers, the patient’s spiritual domain, and pain management. Generally, nurses are central to primary healthcare and form a part of their local community, sharing their culture, strengths, and vulnerabilities. Therefore, they can curate and deliver effective interventions to meet the holistic needs of patients, families, and communities31). In one study32), nurses in home care facilities were more likely to provide patients with social and spiritual care at the end of their lives than those in hospitals. The higher tendency of HNCSs to provide care for family caregivers and spiritual care for patients could be because people often prefer to stay at home and spend the last months of their lives in their own places. Patients at home feel more at ease and can discuss their preferences, needs, and values, which influence the provision of social and spiritual care.

The results further revealed that few GHs and GHSFs supported family participation in palliative and spiritual care. There is a wealth of literature investigating the role of family involvement in LTC facilities following the placement of a relative with dementia33). Barriers to family participation in facilities include lower visit frequency, poor communication with staff, and social distancing measures owing to the COVID-19 pandemic34, 35). The lower rate of spiritual care provision among GHs and GHSFs could be because healthcare professionals in such facilities have easier access to other members who provide spiritual support to patients.

Poorly treated pain is not only distressing but also impairs social interactions, quality of life, appetite, and sleep and is implicated in BPSD36); therefore, both pain and BPSD should be assessed in the palliative care of patients with advanced dementia. Interestingly, the HNCSs in this study often conducted multidisciplinary pain and symptom management discussions in palliative care, whereas they organized multidisciplinary BPSD management conferences less frequently. The discrepancy between symptom management discussions and BPSD conference attendance could be because care managers in home care support offices are obliged to host regular multidisciplinary case conferences under the Japanese LTC insurance system. Hence, nurses in HNCSs attended, rather than hosted, multidisciplinary BPSD conferences.

The strength of our study lies in its rigorous data collection and analysis, which were maintained as we collected quantitative data from a nationwide sample. The research team members thoroughly discussed the selection of questionnaire items until full consensus was reached. Moreover, our research team has diverse professional backgrounds, including physicians, nurses, care managers, social workers, lawyers, and volunteers.

This study has some limitations. The palliative care provision for patients with dementia across all types of LTC settings was affected by the COVID-19 pandemic. Furthermore, the low response rate of the survey may have introduced some bias into the results because of the differences between responders and non-responders. Additionally, the research team, including the Japanese authorities of palliative care for older adults, may have introduced social desirability bias by overreporting good behaviors or underreporting bad behaviors. Bias is more likely to occur when the topic of the survey is ethically sensitive, such as death. Moreover, owing to the lack of data on the quality and quantity of care provided, the study results should be generalized with caution. Furthermore, because the respondents were only head nurses, the answers may not necessarily reflect the actual situation because of a lack of multidisciplinary or on-site perspectives. Other professionals might have expressed opinions that differed from those of the respondent nurses. The study also did not include other relevant facilities, such as nursing homes and group homes, for older individuals with dementia owing to time and financial restrictions. Finally, recall bias could have been a problem as the study relied on self-reporting. Some respondents may have worked at facilities with regressive policies toward palliative care provision, which could have caused them to recall their palliative care practices incorrectly.

Conclusions

This study demonstrated that current palliative care practices for older adults with dementia vary among GHs, GHSFs, and HNCSs in Japan. The HNCSs covers a broad range of palliative care domains for patients with advanced dementia, including spiritual care and family caregiver care. However, few GHs and GHSFs provide support for family participation in palliative and spiritual care. This finding underscores the need for targeted improvements in palliative care for patients with dementia in LTC settings in Japan. Further studies should include other relevant facilities for older individuals with dementia to generate more generalizable results.

Conflicts of interest

The authors declare no conflict of interest.

Funding information

This research was funded by the Health Labor Sciences Research Grant (grant no. 21GB1001).

Ethics approval and consent to participate

The qualitative components of this study were reviewed and approved by the Bioethics Review Committee of Nagoya University School of Medicine, Japan (approval no. 2015-0444). The quantitative component (facility-based survey) was conducted in accordance with the Declaration of Helsinki and was approved by the Ethics Committee of the National Center for Geriatrics and Gerontology (protocol code 1648). For the qualitative study, written informed consent was obtained from all health professionals participating in this qualitative study. They were informed of the study objectives, their right to withdraw at any time, and their ability to skip questions or topics they did not wish to discuss. For the facility-based survey, consent was obtained from the individuals responsible for completing the questionnaire at each participating facility. The purpose of the study and the voluntary nature of participation were explained, and submission of the completed questionnaire was considered implied consent.

Consent for publication

All authors reviewed the final version of the manuscript and consented to its submission for publication in the Journal of Rural Medicine.

Author contributions

Conceptualization, Y.H., T.Y., S.H., J.O., M.K., and H.M.; methodology, Y.H., A.K., and T.S.; formal analysis, Y.H., A.K., and T.S.; investigation, Y.H. and S.T.; resources, A.K., T.S., and H.M.; data curation, T.S.; writing—original draft preparation, Y.H.; writing—review and editing, Y.H., T.Y., S.H., J.O., M.K., and H.M.; supervision, H.M.; project administration, H.M.; funding acquisition, H.M. All authors have read and agreed to the published version.

Acknowledgments

The authors thank all participants and facilities for the time and effort invested in this study.

Data availability statement

The data generated and analyzed in this study are not publicly available because of privacy concerns. In the qualitative component, the transcripts contained personal and professional information that could potentially identify individual participants. For the facility-based survey, responses included organizational details that may compromise the anonymity of the participating facilities. Requests for access to anonymized data may be considered on a case-by-case basis and may require approval from the corresponding ethics committees.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data generated and analyzed in this study are not publicly available because of privacy concerns. In the qualitative component, the transcripts contained personal and professional information that could potentially identify individual participants. For the facility-based survey, responses included organizational details that may compromise the anonymity of the participating facilities. Requests for access to anonymized data may be considered on a case-by-case basis and may require approval from the corresponding ethics committees.

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