Association Between Dementia, Change in Home-Care Use, and Depressive Symptoms During the COVID-19 Pandemic: A Longitudinal Study Using Data from Three Cohort Studies.

Background: The emotional impact of the coronavirus disease 2019 (COVID-19) pandemic on people with dementia has been quantified. However, little is known about the impact of change in home-care use owing to the pandemic. Objective: To determine the longitudinal association between dementia, change in home-care use, and depressive symptoms during the pandemic. Methods: We included data of 43,782 home-dwelling older adults from the English Longitudinal Study of Ageing (ELSA), Study of Health, Ageing and Retirement in Europe (SHARE), and National Health and Aging Trends Study (NHATS). This study considered the latest main wave survey prior to the pandemic as the baseline, and the COVID-19 survey as follow-up. In a series of coordinated analyses, multilevel binomial logistic regression model was used to examine the association between baseline dementia, change in home-care use at follow-up, and presence of depressive symptoms. Results: Dementia, using the ELSA, SHARE, and NHATS datasets, was identified in 2.9%, 2.3%, and 6.5% of older adults, and home-care use reduced in 1.7%, 2.8%, and 1.1% of individuals with dementia, respectively. Dementia was significantly associated with the increased risk of depressive symptoms in all three cohorts. However, the interaction between dementia and period (follow-up) was non-significant in SHARE and NHATS. Across all three cohorts, home-care use during the pandemic, regardless of change in amount, was significantly associated with increased depressive symptoms, compared to the non-use of home care. Conclusions: These results highlight the need for tailoring dementia care at home to promote independence and provide sustainable emotional support.

Association between advance care planning and depressive symptoms among community-dwelling people with dementia: An observational cross-sectional study during the COVID-19 pandemic in Japan.

Objectives: Advance care planning (ACP) is an increasing priority for people with dementia during the COVID-19 pandemic. This study evaluated the association between ACP initiation and depressive symptoms among home-dwelling people living with dementia. Methods: An internet-based questionnaire survey was conducted with Japanese family caregivers of home-dwelling persons with dementia in June 2021. Family caregivers evaluated the level of depressive symptoms in persons with dementia using the Neuropsychiatric Inventory (NPI). Caregivers also rated the quality of life of persons with dementia using the EQ-5D-5L. Results: A total of 379 family caregivers participated in the survey. Depressive symptoms were reported in 143 persons with dementia (37.7%). A total of 155 persons with dementia (40.9%) had initiated ACP, of which 88 (56.8%) had care professionals involved in ACP conversation. After adjusting for the characteristics of persons with dementia and caregivers, persons with professional involvement showed significantly more severe depressive symptoms compared to those who did not initiate ACP. There was no significant difference in the quality of life of persons with dementia according to ACP initiation. Conclusions: Many home-dwelling persons with dementia experienced depressive symptoms during the COVID-19 pandemic, especially in cases where care professionals were involved in ACP conversations. Optimal and proactive ACP approaches need to be developed to prevent depressive symptoms in newly diagnosed persons.

Family caregivers' concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan.

BACKGROUND: The importance of advance care planning for people with dementia has increased during the Coronavirus Disease 2019 Pandemic. However, family caregivers may have concerns about having conversations regarding advance care planning with their loved ones, which may hinder the initiation of such planning. This study investigated family caregivers' concerns regarding conducting advance care planning for home-dwelling individuals with dementia. METHODS: A prospective cross-sectional study compared the level of family-caregiver concern between those who had initiated advance care planning and those who did not. In June 2021, an internet-based questionnaire survey was administered to Japan-based family caregivers of persons with dementia. Registered members of a Japan-based survey company were recruited; inclusion criteria were being aged 40 years or older and having been a primary, non-professional caregiver of a family member with dementia. Respondents rated their level of agreement with six statements regarding advance-care-planning-related concerns. Respondents also reported their psychological well-being using the WHO-5 Well-Being Index. RESULTS: Overall, 379 family caregivers participated in this survey. Of these, 155 (40.9%) reported that their loved ones had initiated advance care planning, of whom 88 (56.8%) stated that care professionals were involved in the advance-care-planning conversations. The level of family-caregiver concern was significantly lower when the loved one initiated the conversation concerning advance care planning. After adjusting for the characteristics of persons with dementia and their caregivers, family caregivers with lower psychological well-being showed significantly higher levels of concern. CONCLUSIONS: Family caregivers reported concerns regarding conducting advance care planning. There is a need for educational and clinical strategies that encourage professionals to address the psychological needs of family caregivers.

Care preferences of healthy, middle-aged adults in Japan and the USA if they acquired dementia: A cross-sectional observational study.

AIM: Japan introduced dementia-friendly initiatives into its national policies to help people with dementia remain involved in society for as long as possible. However, some people might choose to live in a nursing home to avoid care burden on family members. Understanding middle-aged adults' preferences for place of care and identifying factors that influence their preferences would help policy decision-makers promote dementia-friendly initiatives. The present study aimed to investigate the care preferences of middle-aged adults if they acquired dementia in Japan and the USA. METHODS: We carried out a cross-sectional observational study using an internet-based questionnaire survey of Japanese residents with Japanese ethnicity, Japanese Americans, and non-Asian Americans aged 40-70 years. A total of 301 participants, including 104 Japanese residents, 93 Japanese Americans and 104 non-Asian Americans, completed the survey. Participants were asked to answer the items based on a hypothetical situation in which they had acquired dementia requiring regular care and supervision. RESULTS: Participants preferred nursing home care (29.9%), followed by professional home care (19.6%), family home care (17.6%) and hospital care (11.3%). Japanese residents had a significantly lower preference for professional home care than did Japanese or non-Asian Americans (adjusted odds ratio 0.28, 95% confidence interval 0.10-0.75). Between-ethnicity difference in care preferences was not observed. CONCLUSIONS: A low preference for professional home care among the middle-aged adults might be influenced by country-specific long-term and dementia care systems. Policy decision-makers should develop professional home care services that are more available for families of people living with dementia. Geriatr Gerontol Int 2019; 19: 829-833.

Do Nursing Home Residents With Dementia Receive Pain Interventions?

This study compares pain interventions received by nursing home residents with and without dementia. Secondary data analyses of cross-sectional data from 50,673 nursing home residents in New York State were collected by the Minimum Data Set 3.0. Frequency distributions and bivariate analyses with χ2 tests were used to organize and summarize the data. Logistic regression analyses were performed to quantify the relationship between dementia and pain interventions. Our results show that residents with dementia had significantly fewer pain assessments and less reported pain presence than their counterparts. After adjusting for covariates, the results indicate that residents with dementia were significantly less likely to receive pro re nata and nonmedication pain intervention. However, there were no significant differences in scheduled pain medication between the 2 groups. To address the gap, we need more research to design a pain assessment tool that can differentiate severity of pain so that appropriate interventions can be applied.

Who Is Responsible? A Man With Dementia Wanders From Home, Is Hit by a Train, and Dies.

The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs of the person with dementia. As the disease progresses, individuals with dementia often require ongoing formal or informal care for their basic daily routine because of behavior changes and continuing loss of cognitive function. Most of the care for people with dementia takes place at home, and the unpaid, informal caregivers are often spouses or other relatives. Providing long-term informal care at home for someone with dementia is psychologically, physically, and financially draining. The tragedy described in this case elucidates the far-reaching societal impact of dementia care and the implicit health policy considerations. In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when he wandered from home, was hit by a train, and died, immediately affecting the Central Japan Railway Company operations and, subsequently, legal practice as well as Japanese elder care policy. The railway sued the man's wife and son for negligence and lost revenue, winning both trials at the local and district courts. This ruling shocked families and caregivers in Japan, where care for elderly parents traditionally falls on the oldest son, and brought attention to the complex issues related to dementia care. A decade later, we revisit this case to provoke a renewed dialogue about the matrix of responsibilities and liabilities associated with caregiving; to illuminate the unmet needs of the person with dementia, as well as his or her informal caregivers; and the financial implications related to long-term care policy. We close with 2 practical suggestions which preserve the dignity of the individual and provide reassurance for caregivers.

Dementia behaviour management programme at home: impact of a palliative care approach on care managers and professional caregivers of home care services.

OBJECTIVES: Care managers and professional caregivers of home care services are sometimes unaware of the psychosocial approaches to the challenging behaviour of dementia. Therefore, we developed a Behaviour Analytics & Support Enhancement (BASE) programme. We investigated the effects of the programme on the attitudes towards dementia care among professionals. METHOD: Forty-six participants in Japan received training in August 2016. The ongoing monitoring and assessment system was introduced to the participants for repeated measures of challenging behaviour. A 1-day follow-up meeting for debriefing was also performed after two months. A baseline and follow-up questionnaire survey was administered to the participating caregivers using a Japanese version of the Approaches to Dementia Questionnaire (ADQ) and the Zarit Burden Interview (ZBI). RESULTS: A significant improvement was observed in the total ADQ score among the participating caregivers from baseline to follow-up assessment. There was no significant difference between the baseline and follow-up assessment in the ZBI scores. In the follow-up meeting, several participants reported challenges and suggested solutions in facilitating a discussion on an action plan among professionals from various organizations. CONCLUSION: The implementation of the programme resulted in enhanced attitudes towards dementia care among the participants without an increased burden of care. Future studies should examine the programme's effectiveness on the challenging behaviour of persons with dementia.

Substitution of Formal and Informal Home Care Service Use and Nursing Home Service Use: Health Outcomes, Decision-Making Preferences, and Implications for a Public Health Policy.

OBJECTIVES: The purposes of this study are: (1) to empirically identify decision-making preferences of long-term health-care use, especially informal and formal home care (FHC) service use; (2) to evaluate outcomes vs. costs based on substitutability of informal and FHC service use; and (3) to investigate health outcome disparity based on substitutability. METHODOLOGY AND DATA: The methods of ordinary least squares, a logit model, and a bivariate probit model are used by controlling for socioeconomic, demographic, and physical/mental health factors to investigate outcomes and costs based substitutability of informal and formal health-care use. The data come from the 2013 Japanese Study of Aging and Retirement (JSTAR), which is designed by Keizai-Sangyo Kenkyu-jo, Hitotsubashi University, and the University of Tokyo. The JSTAR is a globally comparable data survey of the elderly. RESULTS: There exists a complement relationship between the informal home care (IHC) and community-based FHC services, and the elasticity's ranges from 0.18 to 0.22. These are reasonable results, which show that unobservable factors are positively related to IHC and community-based FHC, but negatively related to nursing home (NH) services based on our bivariate probit model. Regarding health-care outcome efficiency issue, the IHC is the best one among three types of elderly care: IHC, community-based FHC, and NH services. Health improvement/outcome of elderly with the IHC is heavier concentrated on IHC services than the elderly care services by community-based FHC and NH care services. CONCLUSION: Policy makers need to address a diversity of health outcomes and efficiency of services based on providing services to elderly through resource allocation to the different types of long-term care. A provision of partial or full compensation for elderly care at home is recommendable and a viable option to improve their quality of lives.

Are Hospital/ED Transfers Less Likely Among Nursing Home Residents With Do-Not-Hospitalize Orders?

OBJECTIVES: This study aims to examine whether an advance directive "Do Not Hospitalize" (DNH) would be effective in reducing hospital/emergency department (ED) transfers. Similar effects in residents with dementia were also examined. DESIGN: Cross-sectional study. SETTING/SUBJECTS: New York State (NYS) nursing home residents (n = 43,024). MEASUREMENTS AND ANALYSIS: The Minimum Data Set 2.0 was used to address the study aims. Advance directives with an indication of DNH and Alzheimer disease/dementia other than Alzheimer disease were coded (yes vs no). Logistic regression analyses were performed to quantify the relationship between DNH orders and hospital/ED transfers while adjusting for confounders. RESULTS: Our results show that 61% of nursing home residents had do-not-resuscitate orders, 12% had feeding restrictions, and only 6% had DNH orders. Residents with DNH orders had significantly fewer hospital stays (3.0% vs 6.8%, P <.0001) and ED visits (2.8% vs 3.6%, P = .03) in the last 90 days than those without DNH orders. Dementia residents with DNH orders had significantly fewer hospital stays (2.7% vs 6.3%, P < .0001) but not ED visits (2.8% vs 3.5%, P = .11) than those without DNH orders. After adjusting for covariates in the model, the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher (odds ratio = 2.23, 95% confidence interval = 1.77-2.81) than those with DNH orders. CONCLUSION: Residents with DNH orders had significantly fewer transfers. This suggests that residents' end-of-life care decisions were respected and honored. Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident's values and goals in guiding care provision toward the end of life.

Japanese Care Location and Medical Procedures for People with Dementia in the Last Month of Life.

BACKGROUND: Dementia-related societies worldwide have called for palliative end-of-life care for those suffering dementia; meanwhile, the Japanese dementia plan was revised on January 2015 to introduce into its objectives the support for end-of-life care via increased social and health care collaboration. OBJECTIVE: The study focus was the use of medical procedures in the last month of life among dementia patients in different care locations in Japan. METHODS: This study was conducted using a retrospective study design. Data from the Survey of Institutions and Establishments for Long-Term Care, which is a nationally representative cross-sectional survey of the public long-term care insurance services, were used. The 6,148 patients who received end-of-life care in their own home, nursing homes, or hospitals in September 2007, 2010, and 2013 were included for analysis. The primary disease of each patient was based on the ICD-10 code; a diagnosis of dementia included F00 (Alzheimer's), F01 (vascular), F02 (other), and F03 (unspecified). RESULTS: Of 6,148 patients, 886 (14.4%) had dementia as a primary disease; most received care in the last month of life in nursing homes (48.0%) or hospitals (44.8%) rather than in their own home (7.2%). Patients were less likely to undergo pain management when their primary disease was dementia (adjusted odds ratio, 0.44; 95% confidence interval, 0.21-0.91). CONCLUSION: Education and policy efforts are required to provide palliative end-of-life care to people with dementia at home. The national dementia plan should also explore possible approaches regarding pain management for dying people who have dementia.

An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper.

BACKGROUND: Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content. METHODS: We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC). RESULTS: Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including "person-centered care, communication, and shared decision making"; "continuity of care"; and "family care and involvement." Three countries that referred to palliative care did so explicitly, with two domains being well represented: "education of the health care team"; and "societal and ethical issues." The strategies all lacked reference to the domain of "prognostication and timely recognition of dying" and to spiritual caregiving. CONCLUSIONS: National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as "palliative care." In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.

Systems development and difficulties in implementing procedures for elder abuse prevention among private community general support centers in Japan.

The present study examines differences in systems development and difficulties in implementing procedures for elder abuse prevention in 1,119 private and 606 public community general support centers under the public long-term care insurance program in Japan. The private community general support centers showed more difficulty implementing procedures than the public community general support centers. Controlling for the type of municipality, progress in systems development did not differ between the private and public community general support centers. Further research should examine how the characteristics of municipal governments are related to systems development in community general support centers.

Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems?

BACKGROUND: The Ministry of Health, Labour, and Welfare of the Japanese national government announced a "Five-Year Plan for Promotion of Measures Against Dementia (Orange Plan)" in September 2012. This article described features of the Japanese dementia strategy in comparison with international dementia policies. METHODS: An international comparative study was implemented on national dementia policies to seek suggestions for Japanese national strategy. The study consisted of a bibliographical survey, a field survey, and an online case vignette survey in several countries. RESULTS: The Japanese health- and social-care system had multiple access points in the dementia care pathway, as did Australia, France, South Korea, and the Netherlands. Contrary to Japan, a simplified access point was observed in Denmark, England, and Sweden. The Orange Plan aimed to establish specific health-care services, social-care services, and the coordination of agencies for persons with dementia. However, fragmentation remains in the dementia care pathway. CONCLUSION: The national government should examine fundamental revisions in health, social-care services, and advocacy in joint initiatives with Alzheimer's Association Japan to improve the national dementia strategy.

Health care and personal care needs among residents in nursing homes, group homes, and congregate housing in Japan: why does transition occur, and where can the frail elderly establish a permanent residence?

OBJECTIVES: Japan has had high rates of transition to nursing homes from other long term care facilities. It has been hypothesized that care transitions occur because a resident's condition deteriorates. The aim of the present study was to compare the health care and personal care needs of residents in nursing homes, group homes, and congregate housing in Japan. DESIGN: The present study was conducted using a cross-sectional study design. SETTING/SUBJECTS: The present study included 70,519 elderly individuals from 5 types of residential facilities: care medical facilities (heavy medical care; n = 17,358), geriatric intermediate care facilities (rehabilitation aimed toward a discharge to home; n = 26,136), special nursing homes (permanent residence; n = 20,564), group homes (group living, n = 1454), and fee-based homes for the elderly (congregate housing; n = 5007). MEASUREMENTS: The managing director at each facility provided information on the residents' health care and personal care needs, including activities of daily living (ADLs), level of required care, level of cognitive impairment, current disease treatment, and medical procedures. RESULTS: A multinomial logistic regression analysis demonstrated a significantly lower rate of medical procedures among the residents in special nursing homes compared with those in care medical facilities, geriatric intermediate care facilities, group homes, and fee-based homes for the elderly. The residents of special nursing homes also indicated a significantly lower level of required care than those in care medical facilities. CONCLUSION: The results of our study suggest that care transitions occur because of unavailable permanent residence option for people who suffer with medical deterioration. The national government should modify residential facilities by reorganizing several types of residential facilities into nursing homes that provide a place of permanent residence.

Community-based system, reports, and substantiated cases of elder abuse: disparities between municipalities and relating factors in Japan.

This study examines (1) the staffing and financial characteristics of systems for elder abuse detection and intervention in the municipal governments of Japan and (2) the relationship among the development of detection and intervention systems, the reporting rates of suspected elder abuse cases, and substantiated abuse rates in 927 municipalities across Japan. Progressive systems for the detection and intervention of elder abuse were significantly associated with a larger number of public officers than in non-progressive systems. Furthermore, greater rates of both suspected and substantiated cases of abuse were associated with progressive systems for elder abuse detection and intervention. Per capita annual expenditures on the comprehensive support project and the community general support center's catchment under the Long-Term Care Insurance (LTCI) program showed no significant association with the development of systems, the rate of suspected cases, or the number of substantiated cases. National social policy makers should examine strategies that would help municipalities assign sufficient staff to elder abuse detection and intervention programs.

Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan.

BACKGROUND: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. METHODS: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). RESULTS: Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. CONCLUSION: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

Provision of individualized care and built environment of nursing homes in Japan.

The Japanese government introduced the concept of 'unit-care model' (a large-scale facility which consists of small-scale groups) in 2003 into nursing homes. The governmental requirements are mainly about structure and staffing, not about the way of care provision. We aimed to examine if the requirements affect actual care provision. We sent a questionnaire to 300 unit-care model nursing homes and 900 conventional model nursing homes. 81 unit-care model facilities, 164 conventional care model facilities, and 103 conventional care facilities which created small groupings of people within larger buildings as an alternative to multiple small separate units (group-care model) were included in the analysis. We asked the administrator of the facilities about their principles for care provision by the dimensions of (1) wake-up, (2) dressing assistance in the morning, (3) meal, (4) bathing, (5) toileting assistance, and (6) spare time. We mainly asked about flexibility of scheduling and choice for menu, programs, and utensils. Unit-care model facilities and group-care model facilities were negatively associated with principles of fixed time and all-at-once assistance for waking up, dressing, and toileting. Residents had more choice for menu and programs for spare time in unit-care model facilities and group-care model facilities. The governmental requirements affected principles for care provision by defining the structure of facilities and staffing for desirable care provision. Raising fees for the group-care model can be an effective measure to achieve it in facilities with conventional structure.

Priority for elderly persons with behavioral and psychological symptoms of dementia on waiting lists for placement in nursing homes in Japan: do nursing homes change priorities based on their own guidelines?

OBJECTIVES: In Japan, individuals seeking to be placed in nursing homes under the public long term care insurance program are subject to long waiting lists. Applicants are evaluated according to their needs for nursing home placement and assigned to homes based on their relative priority. The aim of the present study was to examine differences between the admission guidelines used by nursing homes and their attitudes regarding the priority for admitting elderly persons with behavioral and psychological symptoms of dementia (BPSD) from their waiting lists. DESIGN: This study was conducted using a cross-sectional study design. SETTING/PARTICIPANTS: Two hundred and eight different facilities provided sets of completed questionnaires and copies of their placement guidelines. MEASUREMENTS: The managing director or social worker at each facility provided self-reports of whether they would increase the priority of applicants with BPSD and whether they would admit applicants who require treatment for BPSD. Each facility's placement guidelines were also collected. RESULTS: Most evaluation guidelines (65.9%) considered an applicant's BPSD as a condition that required nursing home placement; however, only 16.8% of the respondents actually increased the placement priority of applicants with BPSD. Some respondents refused to admit applicants who require treatment for BPSD but did not explicitly state in their guidelines that the priority of applicants with BPSD would be reduced because of the facility's inability to address BPSD. CONCLUSION: The present study revealed differences between nursing homes' official guidelines and their attitudes toward the priority of admitting elderly persons with BPSD from their waiting lists. Future studies should explore the factors that influence the placement of individuals with BPSD into nursing homes.

Quality of life of residents with dementia in a group-living situation: an approach to creating small, homelike environments in traditional nursing homes in Japan.

OBJECTIVES: Group living is an approach that can create small, homelike environments in traditional nursing homes in Japan. The aim of the present study was to examine quality of life (QOL) of residents with dementia in group-living situations. METHODS: The group-living group consisted of facilities that formed residential units. Each unit had a common area and stable staff assignments. The control group consisted of facilities that did not form residential units. The quality of life instrument for Japanese elderly with dementia (QLDJ) scale was used to rate QOL by direct care workers of 616 residents with dementia from 173 facilities in the group-living group and 750 residents from 174 facilities in the control group. QOL was based on the following subscales: interacting with surroundings; expressing oneself; and experiencing minimal negative behavior. RESULTS: Multilevel regression analyses demonstrated a significantly greater QOL with respect to interacting with surroundings, expressing oneself, and experiencing minimal negative behavior for residents with dementia in the group-living group compared to the control group, as measured by the QLDJ. The total QLDJ score was also significantly higher for the group-living group. CONCLUSION: The results suggest improved QOL of residents with dementia under group-living situations. Future studies should examine the effect of group-living on QOL of residents with dementia using a cohort design, following residents longitudinally from admission.

A family booklet about comfort care in advanced dementia: three-country evaluation.

OBJECTIVES: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. DESIGN: Retrospective study. SETTING: Long term care facilities in French-speaking Canada, and the Netherlands and Italy. PARTICIPANTS: Bereaved family (n = 138). MEASUREMENTS: An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet. RESULTS: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents. CONCLUSION: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early.