Abstract
Background
Pain identification and treatment are important for managing the neuropsychiatric symptoms of dementia and improving quality of life in people with the condition. Quantitative clarification of facilitators and barriers to pain identification and treatment is warranted for multi-component programme implementation. This study aimed to identify the factors related to pain identification and treatment in both care recipients and providers, through the implementation of a multi-component dementia care programme for managing neuropsychiatric symptoms.
Methods
This study used longitudinal data from naturalistic long-term care settings between April 2022 and March 2025 in Tokyo, Japan. A total of 1,282 care recipients with 3,497 evaluations was included. Care professionals from community and residential care providers participated in a multi-component programme for managing neuropsychiatric symptoms associated with dementia. They provided information concerning care recipients using a web-based tool. Care professionals held interdisciplinary discussion meetings to evaluate neuropsychiatric symptoms, identify their underlying causes and establish an action plan to address the identified causes. We conducted a multilevel binomial regression analysis using pain identification and treatment as dependent variables. The independent variables included sex, type of dementia and type of provider at the between-person level. Within-person-level variables included the types of caregivers involved in the meetings, prescribed medications, the number of identified causes other than pain and the levels of neuropsychiatric symptoms per evaluation.
Results
Of the 3,497 evaluations, 1,617 (46%) identified pain, and 517 (32% of evaluations with pain identified) targeted pain in the action plans. Pain identification was more likely to occur in individuals with greater number of identified causes underlying neuropsychiatric symptoms, fewer symptoms of apathy and those in residential care providers compared to home care management agencies or individual home care providers. Pain treatment was significantly more likely to appear in action plans that included care managers in interdisciplinary discussion meetings, in individuals with fewer identified causes underlying neuropsychiatric symptoms, fewer symptoms of hallucinations, and in those receiving care from residential care providers rather than home care management agencies.
Conclusions
The involvement of care managers in interdisciplinary discussion meetings may facilitate pain treatment to address the neuropsychiatric symptoms of dementia. Educational strategies are warranted to help front-line care workers improve their pain management skills.
Supplementary Information
The online version contains supplementary material available at 10.1186/s12904-025-01950-9.
Keywords: Dementia, Neuropsychiatric symptoms, Pain management, Programme implementation, Psychosocial interventions
Background
Given the the predicted future increase in its prevalence [1] and progressive nature, dementia represents a public health priority necessitating a comprehensive palliative care approach worldwide [2]. Neuropsychiatric symptoms, including behavioural and psychological disturbances, occur frequently in individuals with dementia [3] and present significant challenges to long-term care and can lead to reduced quality of life [4–6]. Current clinical guidelines recommend psychosocial interventions that are tailored to the underlying causes as the first-line approach for managing neuropsychiatric symptoms [2, 5, 6], that often involve meeting basic health needs [5–8] and should be encompassed in palliative dementia care management interventions [2, 9].
Pain is a known trigger for neuropsychiatric symptoms. Pain has been found to be prevalent and associated with an elevated risk of depression and behavioural changes in studies conducted on nursing home residents with dementia [10–14]. However, cognitive impairment or dementia in care recipients presents challenges to the professional assessment and identification of pain, due to changed perception of pain [15, 16] and decreased communication skills [17–19]. Any identified pain should be treated, and interventions to manage it can be diverse [20].They must be incorporated into an interdisciplinary approach that combines multiple-component interventions, such as addressing physical needs, providing meaningful activities and ensuring better social interactions tailored to individual needs [21].
It currently remains unclear to what extent pain is properly identified and addressed during the implementation of multi-component dementia care programmes for managing neuropsychiatric symptoms. The existing literature on this subject is predominantly based on qualitative studies and professional perspectives [22–24], highlighting good multidisciplinary communication and collaboration as key facilitators of effective pain management in people with dementia [22, 25]. Quantifying the determinants and understanding the facilitators and barriers to pain identification and treatment may provide important recommendations for feasible programme implementation, effective staff encouragement in pain management and quality improvements in the daily care of people with dementia [26]. Given the pressing need for innovation to improve quality of life in people with dementia [27], facilitators and barriers to pain identification and treatment to decrease neuropsychiatric symptoms should be considered a compelling research priority.
This study aimed to identify the factors related to pain identification and treatment in both care recipients and providers using data from a multi-component dementia care programme to manage neuropsychiatric symptoms.
Methods
Design and setting
This study used an observational longitudinal design based on routinely collected data from the psychosocial dementia behaviour analysis and support enhancement (DEMBASE®) programme in Japan. This programme was developed to provide a palliative approach to home-dwelling people with dementia [28] through a joint collaboration between the Tokyo Metropolitan Institute of Medical Science and the Swedish BPSD registry [29]. Based on the results of one cluster randomized controlled study indicating effectiveness for reducing neuropsychiatric symptoms [30], the Tokyo Metropolitan Government introduced the DEMBASE programme into the daily practices of professional caregivers in 2018 [31–33]. The national benefit schedule for long-term care introduced the programme in April 2024, allowing residential care providers to apply for reimbursement for implementing the programme. We have presented our study following the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines (Supplementary Table S1).
Inclusion and exclusion criteria
We included data collected in this naturalistic long-term care setting between April 2022 and March 2025 (Fig. 1). In April 2022, the DEMBASE programme introduced an interface related to targeted underlying causes in an action plan for managing neuropsychiatric symptoms, into the web-based tool. Our exclusion criteria were as follows: (1) data input before April 2022 and (2) incomplete data with no action plans (empty/blank entries).
Fig. 1.
Flow chart of the study process. The psychosocial dementia behaviour analysis and support enhancement (DEMBASE®) programme was developed through a collaboration between the Tokyo Metropolitan Institute of Medical Science and the Swedish BPSD registry. In April 2018, the Tokyo Metropolitan Government introduced the DEMBASE programme into the daily practices of professional caregivers. The original database included information regarding care recipients and evaluations spanning from April 2018 until March 2025. In April 2022, the DEMBASE programme introduced the input of targeted underlying causes in an action plan for the management of neuropsychiatric symptoms into a web-based tool. We retrieved data collected between April 2022 and March 2025 to access information concerning pain treatment in the action plans
Participants
Participants were care professionals who completed the e-learning course to gain accreditation for using the web-based tool, which was funded by the Tokyo Metropolitan government. Municipal governments that applied to the DEMBASE programme recruited care professionals working at accredited long-term service providers to participate in the programme. We included all of the professionals who applied to participate in this study. Under the funding rules established by the Tokyo Metropolitan Government, the DEMBASE programme was made available to both community care and residential care providers.
At the end of study period, in 52 cities (84%) of Tokyo Metropolitan region at least one provider had registered to the programme. The 932 providers registered to the programme accounted for approximately 5% of all providers in Tokyo metropolitan region [34].
Programme implementation
The DEMBASE programme consists of: (1) an e-learning training course; (2) an interdisciplinary discussion meeting to evaluate neuropsychiatric symptoms, analyse underlying causes and establish an action plan; (3) a web-based tool for assessment; and (4) a debriefing meeting after implementation. The timings of the training course and debriefing meetings varied by municipality.
The training course included pain as a common underlying cause of neuropsychiatric symptoms, as well as the process for conducting interdisciplinary discussion meetings and using the web-based tool. The training course explained typical behaviours that may indicate pain and potential sources of pain (Supplementary Panel 1) and presented an example of an action plan to address identified pain (Supplementary Panel 2). An expert panel adapted the content of the training course in the Swedish programme to fit the Japanese cultural context and country-specific healthcare system. The panel comprised physicians, nurses, care managers, personal care workers, social workers and occupational therapists.
Professionals who completed the training course held an interdisciplinary discussion meeting with other care professionals to evaluate the neuropsychiatric symptoms of each participant with dementia, specify the underlying causes and establish an interdisciplinary action plan to address them. The medications prescribed to each participant were also assessed. We recommended that care professionals conduct at least two follow-up evaluations with intervals of 4–6 weeks. The web-based tool provided visualised longitudinal changes in neuropsychiatric symptoms to inform interdisciplinary decision-making. If the level of neuropsychiatric symptoms assessed was not reduced, they reviewed the underlying causes and revised the action plan during discussion meetings.
Pain identification was measured based on underlying causes recorded by care professionals using a 23-item checklist. The checklist includes key cues to help identify each underlying cause of neuropsychiatric symptoms (Supplementary Panel 3). The web-based tool allows the recording of underlying causes for each evaluation, with a total range of 0–23 causes. The expert panel reviewed literature and developed the 23 categories for the underlying causes by referring to the findings on associations between neuropsychiatric symptoms and basic physical needs [35], as well as environmental sources of discomfort [36, 37]. Regarding pain assessment, the checklist included possible signs and causes of pain based on the Abbey Pain Scale [38]. In the analysis focusing on pain identification and treatment, we calculated the number of identified causes underlying neuropsychiatric symptoms other than pain, ranging from 0 to 22.
Data collection
Professionals input the information collected during the discussion meetings into the web-based tool. The tool then categorized and recorded care recipient characteristics, the types of caregivers who attended the meetings, neuropsychiatric symptoms, identified the underlying causes, targeted causes in the action plans it developed and prescribed medications.
Measurements
Care professionals specified which identified underlying causes their action plans would target. The web-based tool allowed them to record a maximum of three targeted causes per assessment, per recipient. We assigned each evaluation record to one of the following three groups: (1) pain was not identified as an underlying cause (no identification); (2) pain was identified but not targeted in the action plan (no treatment); or (3) pain was identified and targeted (identification and treatment) (Fig. 1).
Care professionals used the Neuropsychiatric Inventory—Nursing Home version (NPI-NH) to assess the incidence, frequency and severity of neuropsychiatric symptoms. The original NPI-NH contains 12 items that rate the frequency and severity of neuropsychiatric symptoms in individuals with dementia [39–42]. The scores for each item ranged between 0 and 12, with higher scores indicating more severe symptoms. The total score was calculated by summing the 12 items of the frequency and severity scores and thus ranged between 0 and 144. The Japanese version of the NPI-NH has been reported to have good validity and reliability [43].
Care professionals recorded the drug names and daily dosages for each prescribed medication using a web-based tool. In this study, we categorized prescribed nervous system medications based on the Anatomical Therapeutic Chemical classification system. We then calculated the percentages of prescriptions for analgesics (N02), antipsychotics (N05A), anxiolytics (N05B), hypnotics and sedatives (N05C), antidepressants (N06A) and antidementia drugs (N06D).
The types of caregivers who attended the meetings included care managers, personal care workers, nurses, medical doctors, physiotherapists, occupational therapists and family members of care recipients. In Japan, personal care workers provide direct personal care and assistance with activities of daily living to older adults and do not have nursing qualifications. Care managers handle monthly care plans, which include the types, frequency and amount of long-term care insurance services per care recipient.
The care recipient characteristics recorded included age, sex, type of dementia and type of care provider. We selected these variables based on their potential relevance to pain identification [11, 17] and their availability in the database.
Statistical analysis
We calculated the descriptive statistics of the care recipient characteristics and the distributions of the identified and targeted underlying causes in the action plans. Means and standard deviations were calculated for continuous variables, while numbers and percentages were calculated for categorical variables.
We performed multilevel binomial regression analysis separately for pain identification and treatment. First, to investigate the factors related to pain identification, we combined the treatment and no-treatment groups into a single identification group, estimating odds ratios and 95% confidence intervals with the no identification group as the reference category. The independent variables included care recipient characteristics at the between-person level. Within-person-level variables included the types of caregivers involved in each meeting, the prescribed medications, the numbers of identified causes underlying neuropsychiatric symptoms other than pain and the levels of neuropsychiatric symptoms per evaluation. Second, to investigate factors related to pain treatment, we used the treatment group, with the no-treatment group as the reference category. This model also included the independent variables and within-person-level variables described above. To perform multilevel modeling, we rephased the data in a panel format wherein each row represents one evaluation time, allowing each care recipient to appear multiple times.
Data management was conducted using Stata 18.0 (StataCorp, TX, USA). The regression analysis was performed using Mplus for Windows, version 8.10 (Muthén & Muhén, Los Angeles, CA, USA). Statistical significance was defined as a two-tailed P value of < 0.05.
Results
A total of 1,282 care recipients and 3,497 evaluations registered between April 2022 and March 2025 were included in this study (Fig. 1). The 1,282 care recipients included 912 women (71%) and 370 men (29%), 720 individuals with Alzheimer’s (56%) and 754 users of residential care services (59%) (Table 1). Pain treatment medications had already been prescribed to 156 (12%) of the care recipients at the time of the first evaluation during the study period (Table 1).
Table 1.
Characteristics of the 1,282 participating care recipients
| N (%) or mean (SD) | ||
|---|---|---|
| Age at first evaluation, year, mean (SD) | 85.2 | (7.7) |
| Sex, N (%) | ||
| Female | 912 | (71.1) |
| Male | 370 | (28.9) |
| Type of dementia, N (%) | ||
| Alzheimer’s disease | 720 | (56.2) |
| Vascular dementia | 82 | (6.4) |
| Lewy body dementia | 49 | (3.8) |
| Frontotemporal dementia | 13 | (1.0) |
| Other, unspecified | 418 | (32.6) |
| Type of care provider | ||
| Community care provider | 528 | (41.2) |
| Home care management agencya | 146 | (11.4) |
| Individual home care providerb | 213 | (16.6) |
| Multiple home care providerc | 169 | (13.2) |
| Residential care providerd | 754 | (58.8) |
| Number of evaluations included in the study period, N (%) | ||
| One | 422 | (32.9) |
| Two | 476 | (37.1) |
| Three | 162 | (12.6) |
| Four | 59 | (4.6) |
| Five or more | 163 | (12.7) |
| Neuropsychiatric symptoms at first evaluation during the study period, range 0–144, mean (SD) | 23.0 | (20.1) |
| Each symptom, range 0–12, mean (SD) | ||
| Delusions | 2.3 | (3.7) |
| Hallucinations | 1.1 | (2.6) |
| Agitation/aggression | 3.2 | (3.8) |
| Depression/dysphoria | 1.5 | (2.6) |
| Anxiety | 2.7 | (3.6) |
| Elation/euphoria | 0.6 | (1.8) |
| Apathy/indifference | 1.9 | (3.4) |
| Disinhibition | 1.7 | (3.3) |
| Irritability/lability | 2.7 | (3.8) |
| Aberrant motor behavior | 2.0 | (3.7) |
| Sleep and nighttime behavior disorders | 1.7 | (3.0) |
| Appetite and eating changes | 1.5 | (2.9) |
| Prescription at first evaluation during the study period, N (%) | ||
| N02, analgesics (pain medication) | 158 | (12.3) |
| N05A, antipsychotics | 201 | (15.7) |
| N05B, anxiolytics | 44 | (3.4) |
| N05C, hypnotics and sedatives | 149 | (11.6) |
| N06A, antidepressants | 79 | (6.2) |
| N06D, anti-dementia drugs | 367 | (28.6) |
| Number of identified causes of neuropsychiatric symptoms at first evaluation, 0–23, mean (SD) | 5.4 | (3.0) |
The incidence, frequency and severity of neuropsychiatric symptoms were assessed using the Neuropsychiatric Inventory—Nursing Home version
SD standard deviation
aHome care management agencies handle monthly care plans for home care recipients and are independent of home care service providers
bIndividual home care providers provide direct care to individuals living in their own homes
cMultiple home care providers offer packages of home-based care services to community clients
dResidential care providers offer residential care packages to individuals who reside in facilities and handle monthly care plans for their care recipients
The underlying causes other than pain identified in the 3,497 evaluations included defecation (48%), sleepiness or tiredness (48%), feeling uncomfortable (47%), pain (46%), lack of social interaction (43%) and urination (41%). Pain was identified in 1,617 evaluations. Of the 1,617 evaluations, 517 targeted pain in the action plan (32%) (Table 2). Of the 3,497 evaluations, 1,761 (50%) were those of residential care recipients and registered between April 2024 and March 2025. Based on the distribution of pain targeted in the action plan, we classified the evaluation records into three groups: no identification (N = 1,880), no treatment (N = 1,100) and identification and treatment (N = 517).
Table 2.
Identified and targeted causes in action plans to manage neuropsychiatric symptoms among 3,497 evaluations
| No. | Underlying cause | Identified, N (%) | Targeted in an action plan, N (% of identified) |
|---|---|---|---|
| 4 | Defecation | 1,675 (47.9) | 170 (10.1) |
| 6 | Sleepiness or tiredness | 1,666 (47.6) | 347 (20.8) |
| 15 | Feeling uncomfortable | 1,633 (46.7) | 351 (21.5) |
| 14 | Pain | 1,617 (46.2) | 517 (32.0) |
| 23 | Lack of social interactions | 1,489 (42.6) | 647 (43.5) |
| 5 | Urination | 1,428 (40.8) | 238 (16.7) |
| 22 | Being bothered by another person | 1,248 (35.7) | 671 (53.8) |
| 3 | Rash/fungus | 940 (26.9) | 181 (19.3) |
| 2 | Hydration | 899 (25.7) | 180 (20.0) |
| 1 | Meal | 824 (23.6) | 261 (31.7) |
| 19 | Being cold/hot | 747 (21.4) | 73 (9.8) |
| 17 | Body positioning | 717 (20.5) | 93 (13.0) |
| 11 | Blood pressure | 715 (20.4) | 95 (13.3) |
| 8 | Hearing problem | 630 (18.0) | 202 (32.1) |
| 16 | Medication is not reviewed | 573 (16.4) | 21 (3.7) |
| 7 | Eyesight problem | 468 (13.4) | 84 (17.9) |
| 18 | Lightning | 288 (8.2) | 38 (13.2) |
| 13 | Breathing problem | 256 (7.3) | 51 (19.9) |
| 12 | Blood sugar | 208 (5.9) | 24 (11.5) |
| 20 | Furniture hindering the movement | 186 (5.3) | 27 (14.5) |
| 10 | Pulse | 142 (4.1) | 4 (2.8) |
| 9 | Temperature | 99 (2.8) | 20 (20.2) |
| 21 | Physical restraint | 48 (1.4) | 8 (16.7) |
No. indicates the order of the underlying causes on the 23-item checklist. Items 1–17 indicate basic physical needs and items 18–23 indicate environmental sources of discomfort
The interdisciplinary discussion meetings often involved personal care workers (90%), nurses (44%) and care managers (41%). Home care management agencies frequently included care managers (74%). Few evaluations involved medical doctors (N = 24; 0.7%) (Table 3).
Table 3.
Types of caregivers who attended the interdisciplinary discussion meeting across types of providers
| N (%) | |||||
|---|---|---|---|---|---|
| Community care | Residential care | ||||
| Category (multiple answers allowed) | Total | Home care management agency a | Individual home care provider b | Multiple home care provider c | Residential care provider d |
| N of evaluations | 3,497 (100.0) | 268 (100.0) | 484 (100.0) | 378 (100.0) | 2,367 (100.0) |
| Professional caregiver | |||||
| Care manager | 1,438 (41.1) | 197 (73.5) | 91 (18.8) | 70 (18.5) | 1,080 (45.6) |
| Personal care worker | 3,145 (89.9) | 186 (69.4) | 255 (52.7) | 369 (97.6) | 2,335 (98.6) |
| Nurse | 1,524 (43.6) | 96 (35.8) | 325 (67.1) | 199 (52.6) | 904 (38.2) |
| Occupational therapist | 157 (4.5) | 9 (3.4) | 45 (9.3) | 8 (2.1) | 95 (4.0) |
| Physiotherapist | 140 (4.0) | 9 (3.4) | 28 (5.8) | 11 (2.9) | 92 (3.9) |
| Medical doctor | 24 (0.7) | 5 (1.9) | 3 (0.6) | 0 (0.0) | 16 (0.7) |
| Informal caregiver (family) | 60 (1.7) | 23 (8.6) | 33 (6.8) | 2 (0.5) | 2 (0.1) |
aHome care management agencies handle monthly care plans for home care recipients and are independent of home care service providers
bIndividual home care providers provide direct care to individuals living in their own homes
cMultiple home care providers offer packages of home-based care services to community clients
dResidential care providers offer residential care packages to individuals who reside in facilities and handle monthly care plans for their care recipients
Pain identification (including instances where it was not targeted in action plans) was significantly more likely to occur in individuals with greater number of other identified causes underlying neuropsychiatric symptoms, fewer symptoms of apathy, unspecified dementia, individuals receiving pain medication and those in residential care providers rather than home care management agencies or individual home care providers (Table 4). Additionally, a higher rate of pain identification was significantly associated with the absence of medical doctors in discussion meetings (Table 4).
Table 4.
Care recipient, professional, and provider characteristics associated with identification of pain
| Odds ratio | 95% CI | P-value | |
|---|---|---|---|
| Within-person level | |||
| Informant who participated in the interdisciplinary discussion meeting | |||
| Care manager | 1.05 | 0.59 to 1.87 | 0.867 |
| Personal care worker | 2.67 | 0.76 to 9.34 | 0.124 |
| Nurse | 1.24 | 0.73 to 2.10 | 0.435 |
| Occupational therapist | 0.72 | 0.22 to 2.29 | 0.572 |
| Physiotherapist | 1.06 | 0.35 to 3.22 | 0.922 |
| Medical doctor | 0.06* | 0.01 to 0.84 | 0.036 |
| Informal caregiver (family)a | 3.64 | 0.62 to 21.43 | 0.153 |
| Baseline assessment | 1.09 | 0.78 to 1.53 | 0.620 |
| Neuropsychiatric symptoms, each symptom, range 0–12 | |||
| Delusions | 1.06 | 0.98 to 1.14 | 0.176 |
| Hallucinations | 1.01 | 0.90 to 1.13 | 0.834 |
| Agitation/aggression | 1.04 | 0.95 to 1.14 | 0.429 |
| Depression/dysphoria | 1.07 | 0.96 to 1.19 | 0.205 |
| Anxiety | 0.93 | 0.86 to 1.01 | 0.084 |
| Elation/euphoria | 0.94 | 0.81 to 1.09 | 0.389 |
| Apathy/indifference | 0.91* | 0.84 to 0.99 | 0.028 |
| Disinhibition | 1.07 | 0.98 to 1.17 | 0.112 |
| Irritability/lability | 1.00 | 0.92 to 1.08 | 0.898 |
| Aberrant motor behavior | 1.02 | 0.93 to 1.12 | 0.731 |
| Sleep and nighttime behavior disorders | 1.04 | 0.95 to 1.14 | 0.411 |
| Appetite and eating changes | 1.02 | 0.93 to 1.12 | 0.619 |
| Age at evaluation, year | 1.02 | 0.97 to 1.06 | 0.512 |
| Prescription | |||
| N02, analgesics (pain medication) | 4.59** | 1.72 to 12.25 | 0.002 |
| N05A, antipsychotics | 0.86 | 0.40 to 1.85 | 0.690 |
| N05B, anxiolytics | 1.61 | 0.34 to 7.58 | 0.547 |
| N05C, hypnotics and sedatives | 0.82 | 0.31 to 2.22 | 0.700 |
| N06A, antidepressants | 0.79 | 0.27 to 2.29 | 0.658 |
| N06D, anti-dementia drugs | 1.02 | 0.51 to 2.04 | 0.966 |
| Number of identified causes of neuropsychiatric symptoms other than pain | 1.83*** | 1.61 to 2.07 | < 0.001 |
| Between-person level | Coefficient | 95% CI | P value |
| Sex, male | −0.29 | −1.04 to 0.46 | 0.448 |
| Type of dementia, reference = Alzheimer’s disease | |||
| Vascular dementia | 0.83 | −0.48 to 2.15 | 0.213 |
| Lewy body dementia | 0.96 | −0.69 to 2.61 | 0.254 |
| Frontotemporal dementia | −0.59 | −4.07 to 2.88 | 0.738 |
| Other, unspecified | 0.95* | 0.20 to 1.70 | 0.013 |
| Type of provider, reference = residential care provider | |||
| Home care management agency | −1.58** | −2.69 to −0.46 | 0.006 |
| Individual home care provider | −1.28* | −2.34 to −0.23 | 0.017 |
| Multiple home care provider | −0.42 | −1.42 to 0.57 | 0.406 |
Multilevel binomial logistic regression analysis
Pain was identified in 1,617 action plans and not identified for 1,880 action plans
Neuropsychiatric symptoms were evaluated using the Neuropsychiatric Inventory—Nursing Home version
CI confidence interval
*, **, *** Significant at P < 0.05, < 0.01 or < 0.001, respectively
aInformal caregivers (family members) were not eligible for the e-learning course; however, they could be invited to attend the interdisciplinary discussion meetings if the participating professionals deemed their involvement necessary for identifying causes and establishing action plans
Among the evaluations that involved care managers at the interdisciplinary discussion meetings, pain treatment was significantly more likely to be included in action plans rather than being absent (Table 5). Pain treatment was also significantly more likely to occur in individuals with fewer number of other identified causes underlying neuropsychiatric symptoms, fewer symptoms of hallucination, unspecified dementia and those in residencial care providers than home care management agencies (Table 5).
Table 5.
Care recipient, professional, and provider characteristics associated with treatment of pain
| Odds ratio | 95% CI | P-value | |
|---|---|---|---|
| Within-person level | |||
| Informant who participated in the interdisciplinary discussion meeting | |||
| Care manager | 7.07*** | 2.46 to 20.37 | < 0.001 |
| Personal care worker | 0.62 | 0.10 to 3.91 | 0.607 |
| Nurse | 1.82 | 0.73 to 4.54 | 0.201 |
| Occupational therapist | 0.11 | 0.01 to 1.06 | 0.056 |
| Physiotherapist | 1.26 | 0.13 to 12.34 | 0.842 |
| Medical doctor | 0.00 | 0.00 to 0.00 | 0.999 |
| Informal caregiver (family)a | 6.86 | 0.51 to 93.13 | 0.148 |
| Baseline assessment | 0.87 | 0.45 to 1.68 | 0.682 |
| Neuropsychiatric symptoms, each symptom, range 0–12 | |||
| Delusions | 1.04 | 0.90 to 1.20 | 0.589 |
| Hallucinations | 0.79* | 0.65 to 0.97 | 0.022 |
| Agitation/aggression | 1.06 | 0.88 to 1.27 | 0.543 |
| Depression/dysphoria | 1.09 | 0.92 to 1.30 | 0.320 |
| Anxiety | 0.88 | 0.74 to 1.03 | 0.117 |
| Elation/euphoria | 0.97 | 0.72 to 1.31 | 0.849 |
| Apathy/indifference | 1.03 | 0.89 to 1.19 | 0.721 |
| Disinhibition | 0.92 | 0.77 to 1.09 | 0.332 |
| Irritability/lability | 0.94 | 0.79 to 1.13 | 0.530 |
| Aberrant motor behavior | 0.90 | 0.75 to 1.08 | 0.265 |
| Sleep and nighttime behavior disorders | 1.02 | 0.86 to 1.21 | 0.786 |
| Appetite and eating changes | 1.05 | 0.88 to 1.24 | 0.600 |
| Age at evaluation, year | 1.01 | 0.93 to 1.08 | 0.874 |
| Prescription | |||
| N02, analgesics (pain medication) | 1.98 | 0.38 to 10.43 | 0.418 |
| N05A, antipsychotics | 3.29 | 0.81 to 13.42 | 0.098 |
| N05B, anxiolytics | 0.52 | 0.07 to 3.77 | 0.517 |
| N05C, hypnotics and sedatives | 0.54 | 0.12 to 2.32 | 0.404 |
| N06A, antidepressants | 0.26 | 0.03 to 2.55 | 0.245 |
| N06D, anti-dementia drugs | 0.92 | 0.21 to 4.05 | 0.907 |
| Number of identified causes of neuropsychiatric symptoms other than pain | 0.71*** | 0.58 to 0.86 | < 0.001 |
| Between-person level | Coefficient | 95% CI | P value |
| Sex, male | 0.35 | −0.94 to 1.64 | 0.598 |
| Type of dementia, reference = Alzheimer’s disease | |||
| Vascular dementia | 1.22 | −0.72 to 3.15 | 0.216 |
| Lewy body dementia | 0.90 | −1.90 to 3.69 | 0.530 |
| Frontotemporal dementia | −0.90 | −8.40 to 6.59 | 0.814 |
| Other, unspecified | 3.08*** | 1.82 to 4.35 | < 0.001 |
| Type of provider, reference = residential care provider | |||
| Home care management agency | −3.11** | −5.27 to −0.94 | 0.005 |
| Individual home care provider | 0.06 | −1.74 to 1.85 | 0.950 |
| Multiple home care provider | 0.10 | −1.65 to 1.85 | 0.913 |
Multilevel binomial logistic regression analysis
Of the 1,617 evaluations with identified pain, pain was targeted in 517 action plans and not targeted for 1,100 action plans
Neuropsychiatric symptoms were evaluated using the Neuropsychiatric Inventory—Nursing Home version
CI, confidence interval
*, **, *** Significant at P < 0.05, < 0.01 or < 0.001, respectively
aInformal caregivers (family members) were not eligible for the e-learning course; however, they could be invited to attend the interdisciplinary discussion meetings if the participating professionals deemed their involvement necessary for identifying causes and establishing action plans
Discussion
Pain was commonly identified as an underlying cause of neuropsychiatric symptoms among care recipients registered in a multi-component dementia care programme in Tokyo, Japan. However, pain treatment does not often appear to be a target in interdisciplinary action plans. Pain identification and treatment was more likely to occur in residential care settings. Pain treatment was more likely to be included in evaluations that involved care managers during interdisciplinary discussion meetings. A higher number of other identified causes underlying neuropsychiatric symptoms and greater symptoms of hallucination was associated with a lower likelihood of pain treatment in action plans.
To the best of our knowledge, this is the first study to quantify the factors related to pain identification and the intention to address it in order to manage neuropsychiatric symptoms associated with dementia. Our findings add practical implications to the suggested facilitators, including professional experience and communication among care workers, based on the perspectives of professionals working in the field [23, 26]. Care managers may be able to help front-line care workers, establish flexible action plans that include pain treatment under the public Japanese long-term care insurance programme. Although multiple-home and residential care providers often affiliate with care managers in their organizations, the involvement of care managers in these discussions appears to be insufficient (19–46%). Recommendations for interdisciplinary discussion meetings should be incorporated into training courses to encourage professionals to involve care managers when discussing action plans. Notably, pain identification and treatment were more likely to occur in residential care providers than community care providers. Residential care services are supposed to provide 24/7 observations of residents, that may foster care professionals’ experience and knowledge contributing to pain identification and treatment. However, the integration of palliative care into community-based models is imperative to enable people with dementia to remain in their communities [44, 45]. As people with dementia living at home have been found to experience more pain than their counterparts in nursing homes [46], targeted training in pain identification and management should be prioritised for community care providers to address the challenges.
A higher number of identified causes underlying neuropsychiatric symptoms, and greater symptoms of hallucination was associated with a lower likelihood of pain treatment in action plans. Multiple identified causes may indicate the complexity of care needs, which can affect the priority of pain treatment, even if pain is among the recognized causes. Hallucinations may also play distracting from pain management. Furthermore, the care professionals involved in this study did not prioritize pain in the action plans over interpersonal factors, such as “lack of social interactions” and “being bothered by another person”, despite the high prevalence of identification. The tendency toward action plans may reflect a lack of medical skills or confidence addressing health needs among the care professionals in this study, who were mostly personal care workers with low levels of training in nursing care [23, 26].
However, front-line staff play a key role in recognizing and reporting possible pain to medical staff [26, 47]. The national full-time equivalent (FTE) workforce statistics in October 2022 showed that most of the nursing home workforce are personal care workers (61%) rather than nurses (6%), nursing assistants (3%) and medical doctors (2%) [48]. Pain management training, in terms of addressing neuropsychiatric symptoms, warrants the use of sustainable training models for front-line care workers that are adapted to the varying needs encountered across home and residential care settings [49].
Our observations were based on Japanese long-term care settings, which inherently included few individuals with immigrant backgrounds (0.5% of insured adults in 2023) [50]. However, one study reported that an immigrant background was found to be associated with higher pain intensity among older Australian aged care residents [14] —representing an important observation that should not be excluded when considering pain identification and treatment in multi-cpomponent dementia care programmes.
Strengths and limitations
Despite its strengths, this study had certain limitations that warrant consideration. First, the identified underlying causes may have motivated interventions, in practice, that were not recorded because of the constraints of the web-based tool—wherein only the top three identified causes were recorded. However, considering the high prevalence of pain despite the infrequent use of pain medication (12%) in this study, as well as the known impact on neuropsychiatric symptoms [12] and current global recommendations [5, 7, 8], pain treatment should be given a high priority in action plans.
Second, our observations were limited to the available data collected through the programme’s implementation. Consequently, we could not gather information on professionals’ perspectives regarding the selection and prioritization of identified causes. Additionally, our study lacked information on the level of professional experience [26] and the use of pain assessment tools within the organization [23], both of which could facilitate pain management in individuals with dementia. Future research quantifying the impact of these factors on pain management could provide further implications for programme improvement.
Third, pain targeted in the action plans might not always result in the implementation of pain treatment, which could be more common in baseline-only evaluations. Although our sample size (N = 3,497) strengthened statistical power, some variables, such as the involvement of doctors in discussion meetings, had a limited number of observations. Therefore, these results should be interpreted with caution.
Fourth, our findings were based on data collected from a small part (5%) of providers in Tokyo Metropolitan region in Japan, limiting the generalisability of the sample and results. Furthermore, the financial incentive scheme for residential care providers to implement the programme might have affected how underlying causes were identified and treated. The long-term impact of the scheme on the programme implementation needs to be identified.
Nonetheless, we used data from the implementation of a multi-component dementia care programme in real-world long-term care settings that included both home and residential care providers. This allowed us to identify both facilitators of and barriers to pain management in real-world daily practice, rather than in the context of experimental pain-specific interventions.
Conclusions
This study investigated care recipient- and provider-related factors related to pain identification and treatment in a multi-component dementia care programme aimed at managing neuropsychiatric symptoms. These findings highlight the role of care managers in terms of treating pain as an underlying cause of neuropsychiatric symptoms. Training for front-line workers is warranted to enable them to establish optimal action plans for pain management.
Supplementary Information
Acknowledgements
We want to thank all participants for their contribution.
Abbreviations
- DEMBASE
DEMentia Behaviour Analysis and Support Enhancement
- STROBE
Strengthening the Reporting of Observational Studies in Epidemiology
Authors’ contributions
Conceptualisation: MN, YS, YM, TJ, AO, KN, WA and AN; data curation; MN; formal analysis: MN; funding acquisition: MN, AO and AN; investigation: AN; methodology: MN, WA, JTvdS and AN; project administration: YS, YM, TJ, KN, MW, JTvdS and AN; resources: YS, YM, TJ, AO, KN, MW, JTvdS and AN; software: MN and AN; supervision: YS, YM, TJ, AO, KN, MW, WA, JTvdS and NA; validation: WA, JTvdS and AN; visualisation: MN and WA; writing – original draft: MN; writing – review and editing: all authors.
Funding
This study was supported by the Japan Society for the Promotion of Science [grant numbers JP23K21579, JP22KK0258], Japan Agency for Medical Research and Development [grant number 22579506] and Tokyo Metropolitan Institute of Medical Science.
Data availability
The data that support the findings of this study are available from the Tokyo Metropolitan Institute of Medical Science but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of the Tokyo Metropolitan Institute of Medical Science.
Declarations
Ethics approval and consent to participate
The Tokyo Metropolitan Institute of Medical Science collects and provides de-identified data regarding the programme’s implementation in naturalistic long-term care settings. The data set is anonymized and does not contain any personal information. Upon data entry, care recipient ID was automatically assigned to each recipient, that was managed by the provider. Therefore, the database does not contain any IDs used for long-term care or healthcare insurance systems that are linked to participants’ names. As a result, this study did not require ethical approval, as per the Ethical Guidelines for Medical and Biological Research Involving Human Subjects in Japan of 23 March 2021, Part 3-1-C-(iii). The research was conducted in accordance with the Declaration of Helsinki. Informed consent was obtained from all the professionals, care recipients, and/or their family members before any data collection. Professionals provided consent digitally before applying for the e-learning training course. Care recipients and/or family members provided written consent.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.GBD 2019 Dementia Forecasting Collaborators. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019. Lancet Public Health. 2022;7:e105–25. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.van der Steen JT, Radbruch L, Hertogh CM, de Boer M, Hughes JC, Larkin P, et al. European association for palliative care (EAPC). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European association for palliative care. Palliat Med. 2014;28:197–209. [DOI] [PubMed] [Google Scholar]
- 3.Zhao QF, Tan L, Wang HF, et al. The prevalence of neuropsychiatric symptoms in Alzheimer’s disease: systematic review and meta-analysis. J Affect Disord. 2016;190:264–71. [DOI] [PubMed] [Google Scholar]
- 4.O’Donnell E, Holland C, Swarbrick C. Strategies used by care home staff to manage behaviour that challenges in dementia: a systematic review of qualitative studies. Int J Nurs Stud. 2022;133:104260. [DOI] [PubMed] [Google Scholar]
- 5.Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020;396:413–46. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Livingston G, Huntley J, Liu KY, Costafreda SG, Selbæk G, Alldi S, et al. Dementia prevention, intervention, and care: 2024 report of the lancet standing commission. Lancet. 2024;404:572–628. [DOI] [PubMed] [Google Scholar]
- 7.Lin RSY, Yu DSF, Li PWC, Masika GM. The effectiveness of non-pharmacological interventions targeting neuropsychiatric symptoms among persons with preclinical and mild dementia: a systematic review and network meta-analysis. Int J Geriatr Psychiatry. 2021;36:479–92. [Google Scholar]
- 8.Koch J, Amos JG, Beattie E, Lautenschlager NT, Doyle C, Anstey KJ, et al. Non-pharmacological interventions for neuropsychiatric symptoms of dementia in residential aged care settings: an umbrella review. Int J Nurs Stud. 2022;128:104187. [DOI] [PubMed] [Google Scholar]
- 9.Sachs GA, Johnson NM, Gao S, Torke AM, Hickman SE, Pemberton A, et al. Palliative care program for community-dwelling individuals with dementia and caregivers: the IN-PEACE randomized clinical trial. JAMA. 2025;333:962–71. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Wei YJJ, Chen C, Fillingim RB, DeKosky ST, Schmidt S, Pahor M, et al. Uncontrolled pain and risk for depression and behavioral symptoms in residents with dementia. J Am Med Dir Assoc. 2021;22:2079-2086.e5. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Atee M, Morris T, Macfarlane S, Cunningham C. Pain in dementia: prevalence and association with neuropsychiatric behaviors. J Pain Symptom Manage. 2021;61:1215–26. [DOI] [PubMed] [Google Scholar]
- 12.Habiger TF, Achterberg WP, Flo-Groeneboom E, Mannseth J, Husedo BS. Managing pain and psychosis symptoms in nursing home patients: results from a cluster-randomized controlled trial (COSMOS). J Am Med Dir Assoc. 2021;22:1692–8. [DOI] [PubMed] [Google Scholar]
- 13.Choi A, Martyr A, Clare L, Fossey J, Khan Z, McDermid J, et al. Impact of psychotic symptoms and concurrent neuropsychiatric symptoms on the quality of life of people with dementia living in nursing homes. J Am Med Dir Assoc. 2022;23:1474-1479.e1. [DOI] [PubMed] [Google Scholar]
- 14.Chejor P, Atee M, Cain P, Whiting D, Morris T, Porock D. Pain prevalence, intensity, and association with neuropsychiatric symptoms of dementia in immigrant and non-immigrant aged care residents in Australia. Sci Rep. 2024;14:16948. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Scherder EJ, Sergeant JA, Swaab DF. Pain processing in dementia and its relation to neuropathology. Lancet Neurol. 2003;2:677–86. [DOI] [PubMed] [Google Scholar]
- 16.Achterberg W, Lautenbacher S, Husebo B, Erdal A, Herr K. Pain in dementia. Pain Rep. 2019;5:e803. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Centmayer R, Leiske M, Lahmann NA. Pain prevalence and pain management in nursing home residents with cognitive impairment. Results from five multicenter cross-sectional surveys in Germany between 2014 and 2018. Pain Manag Nurs. 2024;25:487–93. [DOI] [PubMed] [Google Scholar]
- 18.Tsai YI, Browne G, Inder KJ. The effectiveness of interventions to improve pain assessment and management in people living with dementia: a systematic review and meta-analyses. J Adv Nurs. 2021;77:1127–40. [DOI] [PubMed] [Google Scholar]
- 19.Pu L, Barton M, Kodagoda Gamage M, Okada M, Todorovic M, Moyle W. Pain assessment and management in dementia care: qualitative perspectives of people with dementia, their families, and healthcare professionals. J Clin Nurs. 2025;34(7):2933–47. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Bao Z, Landers M. Non-pharmacological interventions for pain management in patients with dementia: a mixed-methods systematic review. J Clin Nurs. 2022;31:1030–40. [DOI] [PubMed] [Google Scholar]
- 21.Pu L, Moyle W, Jones C, Todorovic M. Psychosocial interventions for pain management in older adults with dementia: a systematic review of randomized controlled trials. J Adv Nurs. 2019;75:1608–20. [DOI] [PubMed] [Google Scholar]
- 22.Liao YJ, Jao YL, Berish D, et al. A systematic review of barriers and facilitators of pain management in persons with dementia. J Pain. 2023;24:730–41. [DOI] [PubMed] [Google Scholar]
- 23.Kodagoda Gamage MW, Todorovic M, Moyle W, Pu L. Cultural influence on nurses’ pain observations related to dementia: an integrative review. Pain Manag Nurs. 2023;24:406–26. [DOI] [PubMed] [Google Scholar]
- 24.Pieper MJ, van Dalen-Kok AH, Francke AL, van der Steen JT, Scherder EJ, Husebø BS, et al. Interventions targeting pain or behaviour in dementia: a systematic review. Ageing Res Rev. 2013;12:1042–55. [DOI] [PubMed] [Google Scholar]
- 25.Minaya-Freire A, Ramon-Aribau A, Pou-Pujol G, Fajula-Bonet M, Subirana-Casacuberta M. Facilitators, barriers, and solutions in pain management for older adults with dementia. Pain Manag Nurs. 2020;21:495–501. [DOI] [PubMed] [Google Scholar]
- 26.Spichiger F, Volken T, Bosshard G, Zigan N, Blanc G, Büscher A, et al. Pain interventions for people with dementia: a quasi-experimental study. BMC Palliat Care. 2022;21(1):228. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 27.Pickett J, Brayne C. The scale and profile of global dementia research funding. Lancet. 2019;394:1888–9. [DOI] [PubMed] [Google Scholar]
- 28.Nakanishi M, Hirooka K, Imai Y, Inoue S, Yukari Y, Katayama C, et al. Dementia care competence among care professionals and reduced challenging behavior of home-dwelling persons with dementia: a pre- and post-intervention data analysis. J Alzheimers Dis. 2018;64:515–23. [DOI] [PubMed] [Google Scholar]
- 29.Jönsson L, Wibom M, Londos E, Nägga K. Person-centered care at population scale: The Swedish registry for behavioral and psychological symptoms of dementia. Alzheimer’s & Dementia: Translational Research & Clinical Interventions. 2025;11:e70057. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Nakanishi M, Endo K, Hirooka K, Granvik E, Minthon L, Nägga K, et al. Psychosocial behaviour management programme for home-dwelling people with dementia: a cluster-randomized controlled trial. Int J Geriatr Psychiatry. 2018;33:495–503. [DOI] [PubMed] [Google Scholar]
- 31.Nakanishi M, Niimura J, Ziylan C, Bakker TT, Granvik E, Nägga K, et al. Time investment for program implementation to manage neuropsychiatric symptoms: an observational longitudinal study in in-home and residential care settings. Journal of Alzheimer’s Disease Reports. 2020;4:441–53. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32.Nakanishi M, Yamasaki S, Endo K, Niimura J, Ziylan C, Bakker TJEM, et al. E-learning and web-based tools for psychosocial interventions addressing neuropsychiatric symptoms of dementia during the COVID-19 pandemic in Tokyo, japan: Quasi-experimental study. JMIR Med Educ. 2021;7:e30652. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Nakanishi M, Ziylan C, Bakker T, Granvik E, Nägga K, Nishida A. Facilitators and barriers associated with the implementation of a Swedish psychosocial dementia care programme in japan: a secondary analysis of qualitative and quantitative data. Scand J Caring Sci. 2021;35:430–41. [DOI] [PubMed] [Google Scholar]
- 34.Ministry of Health. Labour and Welfare. Survey of institutions and establishments for Long-term Care, 2023. Tokyo: Health, Labour and Welfare Statistics Association; 2025. [Google Scholar]
- 35.Bédard A, Landreville P, Voyer P, Verreault R, Vézina J. Reducing verbal agitation in people with dementia: evaluation of an intervention based on the satisfaction of basic needs. Aging Ment Health. 2011;15:855–65. [DOI] [PubMed] [Google Scholar]
- 36.Cohen-Mansfield J, Thein K, Dakheel-Ali M, Jensen B. Sources of discomfort in persons with dementia. JAMA Intern Med. 2013;173:1378–9. [DOI] [PubMed] [Google Scholar]
- 37.Cohen-Mansfield J, Thein K, Dakheel-Ali M, Jensen B. Sources of discomfort in persons with dementia: scale and initial results. Behav Neurol. 2015;2015:732832. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 38.Takai Y, Yamamoto-Mitani N, Chiba Y, Nishikawa Y, Hayashi K, Sugai Y. Abbey pain scale: development and validation of the Japanese version. Geriatr Gerontol Int. 2010;10:145–53. [DOI] [PubMed] [Google Scholar]
- 39.Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44:2308–14. [DOI] [PubMed] [Google Scholar]
- 40.Cummings JL. The neuropsychiatric inventory: assessing psychopathology in dementia patients. Neurology. 1997;48:S10–6. [DOI] [PubMed] [Google Scholar]
- 41.Kaufer DI, Cummings JL, Christine D, Bray T, Castellon S, Masterman D, et al. Assessing the impact of neuropsychiatric symptoms in Alzheimer’s disease: the Neuropsychiatric Inventory Caregiver Distress Scale. J Am Geriatr Soc. 1998;46:210–5. [DOI] [PubMed] [Google Scholar]
- 42.Wood S, Cummings JL, Hsu MA, Barclay T, Wheatley MV, Yarema KT, et al. The use of the neuropsychiatric inventory in nursing home residents. Characterization and measurement. Am J Geriatr Psychiatry. 2000;8:75–83. [DOI] [PubMed] [Google Scholar]
- 43.Shigenobu K, Hirono N, Tabushi K, Ikeda M. Validity and reliability of the Japanese version of the neuropsychiatric Inventory-Nursing home version (NPI-NH). Brain Nerve. 2008;60:1463–9. [PubMed] [Google Scholar]
- 44.O’Connor N, Fox S, Kernohan WG, Drennan J, Guerin S, Murphy A, et al. A scoping review of the evidence for community-based dementia palliative care services and their related service activities. BMC Palliat Care. 2022;21(1):32. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Miranda R, Bunn F, Lynch J, Van den Block L, Goodman C. Palliative care for people with dementia living at home: a systematic review of interventions. Palliat Med. 2019;33(7):726–42. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 46.Harrison KL, Ritchie CS, Patel K, Hunt LJ, Covinsky KE, Yaffe K, et al. Care settings and clinical characteristics of older adults with moderately severe dementia. J Am Geriatr Soc. 2019;67(9):1907–12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47.Jansen BDW, Brazil K, Passmore P, Buchanan H, Maxwell D, McIlfatrick SJ, et al. Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study. BMC Palliat Care. 2017;16:6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 48.Ministry of Health, Labour and Welfare. https://www.mhlw.go.jp/toukei/saikin/hw/kaigo/service22/dl/kekka-gaiyou_2.pdf. Accessed on 26 Aug 2025.
- 49.Kelleher D, Windle K, Randell R, Lord K, Duffy L, Akhtar A, et al. A process evaluation of the NIDUS-Professional dementia training intervention for UK homecare workers. Age Ageing. 2024;53:afae109. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 50.Ministry of Health, Labour and Welfare. https://www.mhlw.go.jp/topics/kaigo/osirase/jigyo/21/dl/r03_zenkokukei.pdf. Accessed on 25 Aug 2025.
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are available from the Tokyo Metropolitan Institute of Medical Science but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of the Tokyo Metropolitan Institute of Medical Science.