Dementia Behavior Disturbance Scale Research Articles

Behavioral and psychological symptoms of dementia and mortality risk among people with cognitive impairment: an 8-year longitudinal study from the NCGG-STORIES.

Behavioral and psychological symptoms of dementia (BPSD) are common among people with dementia from the early stages and can appear even in mild cognitive impairment (MCI). However, the prognostic impact of BPSD is unclear. This study examined the association between BPSD and mortality among people with cognitive impairment. This longitudinal study involved 1,065 males and 1,681 females (mean age: males = 77.1 years; females = 78.6 years) with MCI or dementia diagnosis, from the National Center for Geriatrics and Gerontology-Life Stories of People with Dementia (NCGG-STORIES), a single-center memory clinic-based cohort study in Japan that registered first-time outpatients from 2010-2018. Information about death was collected through a mail survey returned by participants or their close relatives, with an up to 8-year follow-up. BPSD was assessed using the Dementia Behavior Disturbance Scale (DBD) at baseline. During the follow-up period, 229 (28.1%) male and 254 (15.1%) female deaths occurred. Cox proportional hazards regression analysis showed that higher DBD scores were significantly associated with increased mortality risk among males, but not females (compared with the lowest quartile score group, hazard ratios [95% confidence intervals] for the highest quartile score group = 1.59 [1.11-2.29] for males and 1.06 [0.66-1.70] for females). Among the DBD items, lack of interest in daily living, excessive daytime sleep, and refusal to receive care had a higher mortality risk. The findings suggest a potential association between BPSD and poor prognosis among males with cognitive impairment.

Physical function decline predictors in nursing home residents using new national quality indicators.

To determine the predictors of physical function (PF) decline among nursing home residents using items from the Long-term care Information system For Evidence (LIFE), a system launched in 2021 to ensure the quality of long-term care. The LIFE data of 1648 residents from 45 nursing homes in Japan were retrospectively collected in July 2021 (T0) and January 2022 (T1), including demographics, PF assessed by the Barthel index (BI), nutrition and oral health, and cognitive function. The Dementia Behavior Disturbance scale was used to assess the frequency of certain behaviors, such as "waking at midnight." The predictors of PF decline, defined as a decrease ≥5 in the BI score at T1 compared with that at T0, were determined using mixed-effects logistic regression analyses. PF at T0 was classified into high (>60 BI) and low (≤60 BI) groups. The participants' mean age was 87.2 ± 7.1 years, and 45.3% experienced PF decline. The significant predictors of PF decline were age ≥ 90 years, body mass index <18.5 kg/m2 , dementia diagnosis, moderate and severe cognitive impairments, not vocalizing reciprocal exchanges at will, always "waking at midnight," and high PF at T0. The LIFE items predicted PF decline among nursing home residents, suggesting that LIFE data can be used to ensure the quality of long-term care. Geriatr Gerontol Int 2024; 24: 123-132.

Incidence of and Risk Factors for Missing Events Due to Wandering in Community-Dwelling Older Adults with Dementia

The burden of missing incidents due to wandering with dementia is not only on the patient but also on their family, neighbors, and community. In this study, we conducted a non-randomized prospective one-year followup cohort study based on symptom registration with missing cases due to wandering with dementia as the endpoint. The incidence and recurrence rates of missing events were calculated. Furthermore, analysis of variance and logistic regression analysis were performed to clarify the risk factors associated with the missing event. Among the 236 patients with dementia enrolled, 65 (27.5%) had a previous missing event at baseline. Of the 65 patients with dementia who had a previous missing event at baseline, 28 had a missing event during the oneyear follow-up period (recurrence rate of 43.1%). Of the 171 who did not have a previous missing event at baseline, 23 had a missing event during the one-year follow-up period (incidence rate of 13.5%). Prevention of missing events requires focused attention on changes in the Mini-Mental State Examination, Dementia Behavior Disturbance Scale, Alzheimer's Disease Assessment Scale scores, and the development of a social environment for supporting family caregivers.

Difficulty and Change of Sub-items of the Dementia Behavior Disturbance Scale in Patients with Alzheimer-type Dementia

Difficulty and Change of Sub-items of the Dementia Behavior Disturbance Scale in Patients with Alzheimer-type Dementia

Temporary improvement of cognitive and behavioral scales for Dementia elderly by Shiritori word game with a dialogue robot: A pilot study.

Communication therapies based on conversations with caregivers, such as reminiscence therapy and music therapy, have been proposed to delay the progression of dementia. Although these therapies have been reported to improve the cognitive and behavioral functions of elderly people suffering from dementia, caregivers do not have enough time to spend on administering such communication therapies, especially in Japan where the workforce of caregivers is inadequate. Consequently, the progression of dementia in the elderly and the accompanying increased burden on caregivers has become a social problem. While the automation of communication therapy using robots and virtual agents has been proposed, the accuracy of both speech recognition and dialogue control is still insufficient to improve the cognitive and behavioral functions of the dementia elderly. In this study, we examine the effect of a Japanese word-chain game (Shiritori game) with an interactive robot and that of music listening on the maintenance and improvement of cognitive and behavioral scales [Mini-Mental State Examination (MMSE) and Dementia Behavior Disturbance scale (DBD)] of the dementia elderly. These activities can provide linguistic and phonetic stimuli, and they are simpler to implement than conventional daily conversation. The results of our Wizard-of-Oz-based experiments show that the cognitive and behavioral function scores of the elderly who periodically played the Shiritori game with an interactive robot were significantly improved over the elderly in a control group. On the other hand, no such effect was observed with the music listening stimuli. Our further experiments showed that, in the Shiritori intervention group, there was a ceiling on the increase in MMSE. The lower the MMSE before participating in the experiment, the greater the increase. Furthermore, greater improvement in DBD was observed when the participants actively played the Shiritori game. Since the Shiritori game is relatively easy to automate, our findings show the potential benefits of automating dementia therapies to maintain cognitive and behavioral functions.

Study on equivalence of the revised short-form version of Dementia Behavior Disturbance Scale

Study on equivalence of the revised short-form version of Dementia Behavior Disturbance Scale

Longitudinal association between nutritional status and behavioral and psychological symptoms of dementia in older women with mild cognitive impairment and early-stage Alzheimer's disease

While cross-sectional studies report associations between behavioral and psychological symptoms of dementia (BPSD) and nutritional status as a modifiable factor, their causal relationship remains unclear. Therefore, this study investigated the impact of nutritional status on BPSD. This study included women with mild cognitive impairment (MCI) and early-stage Alzheimer's disease (AD) from Memory Clinic, National Center for Geriatrics and Gerontology. The participants were assessed for nutritional status and BPSD using the Mini Nutritional Assessment Short-Form (MNA-SF) and the Dementia Behavior Disturbance Scale (DBD), respectively. Based on their MNA-SF scores, the subjects were classified as well-nourished, at risk of malnutrition, or malnourished. Nutritional status and change in BPSD was examined for association by univariate and multivariate linear regression analyses. This study analyzed 181 women (79 with MCI and 102 with early-stage AD). The multivariate analysis showed that the malnourished subjects or those at risk of malnutrition (54.1%) were significantly associated with increased DBD scores (β=0.255, P=0.003) during follow-up. In addition, multivariate regression analysis incorporating change in DBD sub-score as a dependent variable showed that the malnourished subjects or those at risk of malnutrition were associated with increased DBD sub-scores for "verbal aggressiveness/emotional disinhibition" (β=0.247, P=0.005). Poor nutritional status increased BPSD, especially verbal aggressiveness/emotional disinhibition, in those with MCI and early-stage AD during 2.5-year follow-up. Patients with MCI and early-stage AD may need to be assessed for nutritional status from early on, at the onset of mild cognitive decline, and require intervention to prevent worsening of BPSD. Further intervention studies in large prospective cohorts are needed to establish nutritional measures to prevent progression of BPSD in older adults with cognitive impairment.

Improvement in prescriptions while maintaining overall health outcomes: a prospective observational study conducted in Japanese facilities for older people

BackgroundImprovements in the use of polypharmacy or potentially inappropriate medication (PIM) may reduce medication costs in Japan. We aimed to evaluate the impact of improvement in prescription on both overall health outcomes and medication costs in Japanese facilities for older people.MethodsResidents in Japanese facilities for older people between March 2019 and March 2020 were included in this study. The following five indices were used to evaluate overall health outcomes: EuroQoL-5D-5L, Barthel Index, Mini Mental State Examination, Dementia Behaviour Disturbance Scale, and Vitality Index. The team, which consisted of one physician and several pharmacists, suggested improved prescriptions for the attending physicians of the participants. The impact of improvement in prescriptions on the health outcomes score, medication costs, and the number of medications were evaluated through two comparison groups: those whose number of medications decreased (decrement group, DG) and those whose medications did not (not decrement group, NDG); those prescribed PIMs in March 2019 and those not prescribed PIMs in March 2020 (improvement group, IG) and those prescribed PIMs both in March 2019 and March 2020 (not improvement group, NIG). In both comparison groups, propensity score matching was performed to balance demographics, and all health outcome scores, medication costs, and the number of medications in March 2020 were assessed using a t-test. Statistical significance was set at a p-value of < 0.05.ResultsEight-hundred-and-ninety-one participants (75.5% women, 86.2 ± 7.9 years old) were enrolled. After matching, in the comparison between the DG (N = 232, 77.2%, 85.7 ± 8.5) and NDG (N = 232, 78.5%, 86.0 ± 3.1), changes in the health outcomes score were nonsignificant. However, the medication costs and the number of medications significantly decreased. After matching, in the comparison between IG (N = 141, 75.2%, 86.7 ± 8.1) and NIG (N = 273, 74.2%, 86.2 ± 8.3), changes in health outcome scores and medication costs were not significant. However, the number of medications significantly decreased.ConclusionsImprovements in prescriptions did not adversely affect the overall health outcomes. However, it impacted medication costs and the number of medications. Improvement in prescriptions could decrease medication costs while maintaining overall health outcomes.

A NARRATIVE REVIEW OF THE MANAGEMENT OF BEHAVIORAL AND PSYCHOLOGICAL SYMPTOMS OF DEMENTIA

Dementia is a chronic or progressive neurodegenerative condition which is organic in origin. There will be impairment of thinking, memory orientation, comprehension, language, calculation, and judgement. Alzheimer's disease facts and gures in 2021 according to Alzheimer's association shows Alzheimer's disease accounts for 60% to 80% of the total cases. Behavioural and psychological symptoms of dementia also known as neuropsychiatric symptoms are a group of symptoms with behavioural and psychological manifestations. Disturbances include behavioural symptoms like wandering, hoarding, physical aggression, sexually disinhibition, culturally inappropriate behaviour, agitation and psychological symptoms like apathy, depression, anxiety, delusions, and hallucinations, sundowning, elation. Scales like the Neuropsychiatric Inventory, the Behavioural Pathology in Alzheimer Disease rating scale, the Consortium to Establish a Registry for Alzheimer Disease Behaviour Rating Scale for Dementia, Dementia Behaviour Disturbance scale, and the Neurobehavioral Rating Scale can be utilized to recognise BPSD.Neuropsychological assessment also have an important role. Non-pharmacological methodologies contain different sorts of treatment: tactile stimulation, pressure point massage, fragrant healing, light treatment, garden exercises, music therapy, dance therapy, and Snoezelen multisensory therapy, psychological strategies of multicomponent treatment strategies. Broadly focussing on sensory stimulation, social activities, structural activities, behavioural activities, environmental activities, and training programmes. Pharmacological treatment includes antipsychotics, mood stabilizers and antidepressants in treating BPSD, and cholinesterase inhibitors and memantine for the situation of Alzheimer's dementia sedative/hypnotics for sleep issues. Treatment can be further categorized based on individual NPS like agitation, psychosis, apathy, depression, sleep problems and other symptoms. Future treatment which has less evidence as of now includes rTMS, TDCS and Photo biomodulation therapy

Use of Robotic Pet in a Distributed Layout Elderly Housing with Services: A Case Study on Elderly People with Cognitive Impairment

In recent years, robotic pets have been used by many countries worldwide as a method for treating behavioral and psychological symptoms of dementia (BPSD). The seal robot PARO was loaned intermittently to a distributed layout elderly housing with services over a seven-month period, during which it was observed that three residents with cognitive dysfunctions showed improvements in their BPSD and the nursing care load of the staff was reduced during the periods when PARO was present. The objective of this study is to investigate, through a case study, the effects of intermittent interaction with PARO on those with cognitive dysfunctions and the staff workers. The short version of the Dementia Behavior Disturbance Scale (DBD-13) was used as the medical outcome index, and the KJ method was used to analyze the qualitative data, such as staff reports and interviews. The results show that the DBD-13 total scores reduced during the periods when PARO was present and increased during the periods when PARO was absent. The KJ method yielded similar findings. The use of DBD-13 and the KJ method complemented the results of each other and increased the persuasive power of the findings. By using the KJ method, it was further determined that the workload of the staff was reduced, allowing them to recuperate, which reconfirmed the value of PARO. Further case studies will be undertaken in the future with the aim of constructing a methodology for implementing case studies.

Verification of Trail Making Test in Elderly People with Behavioral and Psychological Symptoms of Dementia

In Alzheimer's disease (AD), attention and executive dysfunction occur early in the disease. However, little is known about the relationship between these disorders and behavioral and psychological symptoms of dementia (BPSD). This study investigated the relationship between BPSD and attention and execution functions. Twenty-five patients with mild cognitive impairment (MCI) and early AD were included. Neuropsychological tests, mini-mental state examination (MMSE), Raven’s colored progressive materials (RCPM), and trail making test (TMT) were conducted for patients with dementia. The dementia behavior disturbance scale (DBD) was used for psychological and behavioral evaluations of patients with dementia. The AD group showed significantly lower MMSE, DBD, and TMT-B scores than the MCI group. Multiple regression analyses revealed a significant correlation between DBD score, MMSE, and TMT-B.Conclusion: BPSD is associated with cognitive function severity in patients with MCI and early AD, suggesting that attentional and executive functions are independent risk factors for these neural substrates.

Exploring the Interactions Between Neurophysiology and Cognitive and Behavioral Changes Induced by a Non-pharmacological Treatment: A Network Approach.

Dementia due to Alzheimer’s disease (AD) is a neurological syndrome which has an increasing impact on society, provoking behavioral, cognitive, and functional impairments. AD lacks an effective pharmacological intervention; thereby, non-pharmacological treatments (NPTs) play an important role, as they have been proven to ameliorate AD symptoms. Nevertheless, results associated with NPTs are patient-dependent, and new tools are needed to predict their outcome and to improve their effectiveness. In the present study, 19 patients with AD underwent an NPT for 83.1 ± 38.9 days (mean ± standard deviation). The NPT was a personalized intervention with physical, cognitive, and memory stimulation. The magnetoencephalographic activity was recorded at the beginning and at the end of the NPT to evaluate the neurophysiological state of each patient. Additionally, the cognitive (assessed by means of the Mini-Mental State Examination, MMSE) and behavioral (assessed in terms of the Dementia Behavior Disturbance Scale, DBD-13) status were collected before and after the NPT. We analyzed the interactions between cognitive, behavioral, and neurophysiological data by generating diverse association networks, able to intuitively characterize the relationships between variables of a different nature. Our results suggest that the NPT remarkably changed the structure of the association network, reinforcing the interactions between the DBD-13 and the neurophysiological parameters. We also found that the changes in cognition and behavior are related to the changes in spectral-based neurophysiological parameters. Furthermore, our results support the idea that MEG-derived parameters can predict NPT outcome; specifically, a lesser degree of AD neurophysiological alterations (i.e., neural oscillatory slowing, decreased variety of spectral components, and increased neural signal regularity) predicts a better NPT prognosis. This study provides deeper insights into the relationships between neurophysiology and both, cognitive and behavioral status, proving the potential of network-based methodology as a tool to further understand the complex interactions elicited by NPTs.

Association between Daily Activities and Behavioral and Psychological Symptoms of Dementia in Community-Dwelling Older Adults with Memory Complaints by Their Families.

It is important and useful to consider information provided by family members about individuals with memory complaints’ instrumental activities of daily living (IADL). The purpose of this study was to clarify the characteristics and relevance of individuals with memory complaints’ IADL and behavioral and psychological symptoms of dementia (BPSD) assessed from the perspective of the family members using the Process Analysis of Daily Activity for Dementia and short version Dementia Behavior Disturbance scale. A self-administered questionnaire was sent to 2000 randomly selected members of Consumer’s Co-operative Kagoshima, and 621 responded. Of the returned responses, there were 159 participants who answered about individuals with memory complaints. The stepwise multiple regression analysis was used to examine the association between IADL and BPSD. The result showed that many IADL of the individuals with memory complaints were associated with BPSD of apathy, nocturnal wakefulness, and unwarranted accusations, adjusted for age, gender, and the observation list for early signs of dementia. In addition, each IADL was associated with BPSD of apathy, nocturnal wakefulness, and dresses inappropriately. Modifying lifestyle early on when families recognize these changes may help maintain and improve the long-term quality of life of the individuals with memory complaints and their family.

Non-pharmacological treatment changes brain activity in patients with dementia

Non-pharmacological treatment (NPT) improves cognitive functions and behavioural disturbances in patients with dementia, but the underlying neural mechanisms are unclear. In this observational study, 21 patients with dementia received NPTs for several months. Patients were scanned using magnetoencephalography twice during the NPT period to evaluate NPT effects on resting-state brain activity. Additionally, cognitive functions and behavioural disturbances were measured using the Mini-Mental State Examination (MMSE-J) and a short version of the Dementia Behaviour Disturbance Scale (DBD-13) at the beginning and the end of the NPT period. In contrast to the average DBD-13 score, the average MMSE-J score improved after the NPT period. Magnetoencephalography data revealed a reduced alpha activity in the right temporal lobe and fusiform gyrus, as well as an increased low-gamma activity in the right angular gyrus. DBD-13 score changes were correlated with beta activity in the sensorimotor area. These findings corroborate previous studies confirming NPT effects on brain activity in healthy participants and people at risk of dementia. Our results provide additional evidence that brains of patients with dementia have the capacity for plasticity, which may be responsible for the observed NPT effects. In dementia, NPT might lead to improvements in the quality of life.

The Effect of Eucalyptol on Nursing Home Residents

Eucalyptol is one of the most popular volatile components. It is used in many essential oils for relieving sinus and lung congestion caused by a variety of conditions. This pilot study sought to analyze clinical evidence for the effect of the scent of eucalyptol on the cognitive function of elderly people. Seventy nursing-home residents with cognitive impairment were recruited. Three one-week experiments were performed: eucalyptol scent was diffused in bedrooms with a diffuser only at wake-up time in the first experiment, and at wake-up time and bedtime in the second and third experiments. Results showed that although an improvement was not seen when using Mini Mental State Examination (MMSE) and Cohen-Mansfild Agitation Inventory (CMAI) measures, Dementia Behavior Disturbance Scale (DBD) scores improved significantly, even though no subject reported perceiving the scent. The significant improvements of the behaviour were found not only among the subjects whose room had a diffuser but also among the subjects who were exposed to an unperceivable level of eucalyptol drifted in the living room.

Malnutrition is Associated with Behavioral and Psychiatric Symptoms of Dementia in Older Women with Mild Cognitive Impairment and Early-Stage Alzheimer's Disease.

We examined the nutritional status and its association with behavioral psychiatric symptoms of dementia (BPSD) among 741 memory clinic patients (normal cognition (NC), 152; mild cognitive impairment (MCI), 271; early-stage Alzheimer disease (AD), 318). Nutritional status and BPSD were assessed using the Mini Nutritional Assessment Short-Form (MNA-SF) and the Dementia Behavior Disturbance Scale (DBD), respectively. Compared to subjects with NC, more subjects with MCI and early-stage AD were at risk of malnutrition (MNA-SF, 8–11: NC, 34.2%; MCI, 47.5%; early-stage AD, 53.8%) and were malnourished (MNA-SF, 0–7: NC, 4.6%; MCI, 5.9%; early-stage AD, 8.2%). Among patients with MCI or early-stage AD, those at risk of/with malnutrition showed higher DBD scores than those well-nourished (12.7 ± 9.0 vs. 9.5 ± 7.3; p < 0.001). Moreover, analysis of covariance adjusting for confounders showed that nutritional status was significantly associated with specific BPSD, including “verbal aggressiveness/emotional disinhibition” (F = 5.87, p = 0.016) and “apathy/memory impairment” (F = 15.38, p < 0.001), which were revealed by factor analysis of DBD. Our results suggest that malnutrition is common among older adults with mild cognitive decline, and possibility that nutritional problems are associated with individual BPSD.

Associations among behavioral and psychological symptoms of dementia, care burden, and family-to-work conflict of employed family caregivers.

The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family-to-work conflict (FWC) of employed family caregivers. A cross-sectional study was carried out with employed adult daughter or son (or in-law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work-Home Interaction-NijmeGen, Zarit Burden Scale-Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work-Home Interaction-NijmeGen, Zarit Burden Scale-Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work-life balance. Geriatr Gerontol Int 2019; 19: 51-55.

Physical Frailty Correlates With Behavioral and Psychological Symptoms of Dementia and Caregiver Burden in Alzheimer's Disease.

The aim of this study was to clarify the association of physical frailty with behavioral and psychological symptoms of dementia (BPSD) and caregiver burden in patients with Alzheimer's disease (AD). The subjects were 1,193 AD patients who presented to the Memory Clinic at the National Center for Geriatrics and Gerontology of Japan during the period from October 2010 to February 2015 (mean ± SD age = 78.8 ± 6.3 years; female, 68.6%). AD was diagnosed based on the criteria of the National Institute on Aging and Alzheimer's Association workgroups. The Frailty Index (FI) was calculated as the ratio of actual to 38 potential deficits. BPSD and caregiver burden were assessed by using the Dementia Behavior Disturbance Scale (DBD) and the Japanese version of Zarit Burden Interview (J-ZBI). Multiple linear regression analyses and structural equation modeling (SEM) were performed to examine the relationship between the FI, DBD, and J-ZBI. The subjects' mean FI score was 0.16 ± 0.10, with 663 (55.6%) and 198 (16.6%) subjects shown to be pre-frail (0.08 ≤ FI < 0.25) and frail (FI ≥ 0.25), respectively. Multiple linear regression analyses and SEM showed that the FI was independently associated with both DBD (β = 0.30, P < .001) and J-ZBI (β = 0.13, P < .001). Moreover, when the FI was considered as a categorical variable, even pre-frailty was associated with increased DBD score (β = 0.16, P < .001) and J-ZBI score (β = 0.09, P = .003). The presence of not only physical frailty but also pre-frailty, as determined by the FI, could increase BPSD and caregiver burden in patients with AD.

Frontal White Matter Hyperintensity Is Associated with Verbal Aggressiveness in Elderly Women with Alzheimer Disease and Amnestic Mild Cognitive Impairment

Background/Aims: Behavioral and psychological symptoms of dementia (BPSD) are exhibited in most patients with Alzheimer disease (AD). Although white matter hyperintensity (WMH) is often observed with AD, the precise role of WMH in BPSD remains unclear. The current study aimed to identify the impact of regional WMH on specific features of BPSD in persons with mild to moderate AD and amnestic mild cognitive impairment (aMCI). Methods: A sample of 256 female outpatients with AD (n = 217) and aMCI (n = 39) were recruited. We assessed BPSD using the Dementia Behavior Disturbance Scale. WMH and brain atrophy were evaluated using an automatic segmentation program. Regional WMH was evaluated as periventricular hyperintensity (PVH) and deep WMH in frontal, temporal, occipital, and parietal lobes. Results: Whole-brain WMH was associated with verbal aggressiveness. In multivariate analysis, PVH in the frontal lobe was independently associated with verbal aggressiveness after adjustment for brain atrophy and clinical confounders. Conclusion: The current results indicated that PVH in the frontal lobe was independently associated with verbal aggressiveness.

Usefulness of carer-held records to support informal caregivers of patients with dementia who live at home.

It is unclear whether carer-held records (CHR) are useful for patients with dementia. In this study, we evaluated the usefulness of the CHR for patients with dementia at the municipal level. Candidates for CHR use in this study were informal caregivers of patients with dementia who lived at home in Kawanishi, Japan. CHR users were those who are involved in the patient's care and treatment, such as informal caregivers, family physicians, dementia specialists, care professionals, and care service coordinators, known as ‛care managers' in Japan. Collaborative meetings were held every month mainly to help users, especially care managers, learn how to effectively use CHR. We surveyed informal caregivers before and 1.5 years after the start of CHR use to evaluate whether CHR improved collaboration and information provision. The Zarit Caregiver Burden Interview and Dementia Behaviour Disturbance Scale were also administered. We divided the informal caregivers who continued CHR use for 1.5 years into two subgroups based on whether their care manager attended the collaborative meetings at least twice. In addition, we divided informal caregivers into three subgroups depending on their relationship to the patient: spouse, child, or daughter-in-law. The study initially consisted of 201 informal caregivers. Among them, 74 informal caregivers continued CHR use for 1.5 years. The information provision score significantly improved after CHR use for all informal caregivers. The collaboration score significantly improved after CHR use only for informal caregivers whose care managers attended at least two collaborative meetings. The Zarit Caregiver Burden Interview score significantly improved after CHR use for daughter-in-law caregivers. The Dementia Behaviour Disturbance Scale scores did not significantly improve after CHR use. CHR were useful for informal caregivers of patients with dementia. However, care managers need to teach informal caregivers how to properly use CHR.