Inaccessibility, unresponsiveness, inconsistency, and invisibility of informal caregivers of older persons with cognitive impairment: community-based participatory research.

BACKGROUND: Studies on informal caregivers in Japan have been limited to family caregivers and largely conducted where family caregivers generally gather. Family caregivers who do not visit such places or non-family caregivers are generally overlooked, and data on these informal caregivers remains scant. Consequently, a framework is needed through which healthcare professionals can approach the informal caregivers of community-dwelling older persons. Therefore, this study approaches such informal caregivers and proposes a classification system for them from the starting point of older persons living in the community with cognitive impairment. METHODS: In 2016, we conducted an epidemiological survey of 7000 + community-dwelling older persons and identified 198 residents with Mini-mental state examination scores less than 23. A team of healthcare professionals contacted them regularly. By 2022, 92 people were still living in the community, and we systematically asked them about their informal caregivers. After approaching the caregivers and obtaining informed consent, we mailed separate questionnaires to older persons and informal caregivers. RESULTS: Among the caregivers, 59%, 34%, and 3% were the child, spouse, and sibling of the older person, while the remaining 4% were non-family caregivers. Except for two daughters-in-laws, all children were biological children of the older person. Male caregivers (46%) tended to have full-time jobs, whereas female caregivers (54%) tended to face financial difficulties. Only 3% of the caregivers had joined a family caregivers' association. Caregivers' reason for not joining such organizations was a lack of time and knowledge. A 3-tiered classification system was developed for these informal caregivers: (1) the household form, (2) accessibility, and (3) the reciprocal awareness of caregiving. Furthermore, family caregivers who lived with the older person or visited them more than once a week with reciprocal awareness of caring and being cared, or "traditional caregivers," accounted for 68% of the caregivers in this study. CONCLUSION: Core family caregivers can be easily approached at places where such caregivers generally gather. However, there also exists a group of informal caregivers who are sometimes inaccessible, unresponsive, and invisible to healthcare professionals. Moreover, their awareness of caregiving is sometimes inconsistent.

GO Revisited: Qualitative Analysis of the Motivating Factors to Start and Continue Playing GO.

PURPOSE: To explore the motivating factors for starting and continuing to play GO among older adults, as well as to examine the effect of GO activities in helping people to live well with, as well as to prevent, dementia. DESIGN: Qualitative descriptive research. METHODS: Semi-structured interviews were conducted. FINDINGS: The participants reportedly started playing GO for dementia prevention, and to cope with their anxieties about aging. They described feeling relaxed while playing GO. They also felt that playing GO fostered human relationships. CONCLUSIONS: GO is effective in assisting older adults to cope with aging issues, cultivate peace of mind and encourage interaction with peers. CLINICAL EVIDENCE: GO is effective in assisting older adults to cope with aging issues, cultivate peace of mind and encourage interaction with peers.

[Classification of community-dwelling older people based on their physical, mental, cognitive, and oral functions and comorbidities and its relationship with the fall history].

AIM: To prevent falls among older adults, healthcare professionals need to assess these individuals from multiple perspectives. This study aimed to group community-dwelling older Japanese people based on their physical, mental, cognitive, and oral functions and comorbidities, and compare the history of falling in these groups. METHODS: Data were obtained from a cross-sectional survey conducted in 2015 among older residents of a ward of Tokyo. For the survey, a questionnaire was distributed to all residents aged ≥65 years without a certificate of long-term care (n = 132,005). Questions were posed concerning respondents' physical, mental, cognitive, and oral functions; comorbidities; and experience with falling in the past year. Cluster and logistic regression analyses were performed. RESULTS: A total of 70,746 participants (53.4%) were included in the analysis. The mean age was 73.6 years old, and 44.9% were male. Four groups were identified in the cluster analysis: the "good general condition group" (n = 37,797, 52.4%), "poor mental function group" (n = 10,736, 14.7%), "moderate physical function group" (n = 13,461, 19.0%), and "poor general condition group" (n = 9,122, 12.9%). A logistic regression analysis with adjusting for socio-demographic characteristics, health behaviors, and fear of falling showed that the odds ratios for the experience of falling within the past year were 1.44 (95% confidence interval: 1.34-1.53), 1.54 (1.44-1.65), and 2.52 (2.34-2.71) in the poor mental function, moderate physical function, and poor general condition groups, respectively, with the good general condition group as the reference. CONCLUSIONS: We classified community-dwelling older adults into four groups based on multiple functions and found possible variations in the risk of falling by group. These findings suggest that such classification may be useful for the prevention of falls.

Promoting cultural change towards dementia friendly communities: a multi-level intervention in Japan.

BACKGROUND: Effective strategies to develop dementia-friendly communities (DFCs) are needed in aging societies. We aimed to propose a strategy to develop DFCs from a Japanese perspective and to evaluate an intervention program that adopted the strategy. METHODS: This study implemented a multi-level intervention that emphasized nurturing community social capital in a large apartment complex in the Tokyo metropolitan area in 2017. We offered an inclusive café that was open for extended hours as a place to socialize and a center for activities that included monthly public lectures. Individual consultation on daily life issues was also available for free at the café. Postal surveys were sent out to all older residents aged 70 years and older in 2016 and 2019. With a one-group pre-test and post-test design, we assessed changes in the proportion of older residents who had social interaction with friends and those who were confident about living in the community, even if they were living with dementia. RESULTS: Totals of 2633 and 2696 residents completed the pre and post-intervention surveys, respectively. The mean age of the pre-intervention respondents was 77.4 years; 45.7% lived alone and 7.7% reported living with impaired cognitive function. The proportion of men who had regular social interaction and were confident about living in their community with dementia increased significantly from 38.8 to 44.5% (p = 0.0080) and from 34.1 to 38.3% (p = 0.045), respectively. Similar significant increases were observed in the subgroup of men living with impaired cognitive function, but not in the same subgroup for women. CONCLUSIONS: The intervention benefitted male residents who were less likely to be involved in the community's web of social networks at baseline. A strategy to create DFCs that emphasizes nurturing community social capital can form a foundation for DFCs. TRIAL REGISTRATION: This study was retrospectively registered in the University hospital Medical Information Network (UMIN) Clinical Trial Registry (registry number: UMIN000038193 , date of registration: Oct 3, 2019).

[Comprehensive health assessment of community-dwelling older people using mail method and its association with future transition to need for long-term care and dementia].

Objectives　We selected assessment items that can be used to evaluate the physical, mental, and social functions of community-dwelling older people comprehensively and easily, and examined whether these items could predict a future transition to the requirement for nursing care and dementia.Methods　We conducted a self-administered mail survey of 4,439 community-dwelling older people, who were not certified as requiring nursing care in 2011. The items for the survey were shortlisted out of a total of 54 items that were selected by referring to existing scales, and the evaluation items were determined by pass rate and factor analysis. The cut-off point of the total scores was estimated by ROC analysis using the certification of requiring long-term care (support level 1 or higher) and level of independence in the daily lives of older people with dementia (independence level I or higher) in 2014 as external criteria. The predictive validity was examined by binomial logistic regression analysis using the cut-off point of the total score and the score of the sub-domains as explanatory variables, and the requirement of nursing care and independence level of dementia in 2014 as objective variables.Results　A factor analysis of 1,810 subjects with no deficiencies in the 54 items identified 24 items in five domains (mental health, walking function, Instrumental Activities of Daily Living (IADL), cognitive function, and social support). During the ROC analysis, the cut-off point of the total score was estimated to be 20/21 points (nursing care: AUC 0.75, sensitivity 0.77, specificity, 0.56; dementia: AUC 0.75; sensitivity 0.79, specificity 0.55). The binomial logistic regression analysis showed that persons with a total score of less than 20 points in 2011 were significantly more likely to be certified as requiring nursing care (odds ratio 2.57, 95%CI 1.69-3.92, P<0.01) or show a decline in their independence level of dementia (odds ratio 3.12, 95%CI 1.83-5.32, P<0.01) in 2014. The scores of mental health, walking function, and IADL were significantly associated with certification of requiring nursing care, while walking function and cognitive function were significantly associated with dementia.Conclusion　We believe that the selected items in this study can successfully predict a transition to needing nursing care and dementia in the future. In the sub-domains, the results suggested an association with physical and mental function, as has been previously reported, but little association with social function.

Factors associated with inability to attend a follow-up assessment, mortality, and institutionalization among community-dwelling older people with cognitive impairment during a 5-year period: evidence from community-based participatory research.

BACKGROUND: The aim of the present study was to explore factors associated with (i) the inability to attend a follow-up assessment in the community-based participatory research (CBPR) framework; (ii) mortality; and (iii) institutionalization, across a 5-year period among older people with cognitive impairment identified via an epidemiological survey. METHODS: The participants were 198 older people whose score on the Mini-Mental State Examination was below 24, and who were living in our CBPR region in the Tokyo metropolitan area. Baseline data included sociodemographic factors, health-related factors, social factors, and assessments by healthcare professionals. Over the following 5 years we observed what happened to the subjects within the CBPR framework. Bivariate and stepwise multiple logistic regression analyses were performed to explore the factors associated with the inability to attend a follow-up assessment, 5-year mortality, and institutionalization. RESULTS: Participants who did not attend a follow-up assessment tended to live alone. Being older (>80), living with others, frailty, and the need for rights protection and daily living support were associated with increased mortality. Long-term care insurance certification was strongly associated with institutionalization as a natural consequence of the health-care system. Having dementia and low access to doctors were also positively associated with institutionalization. CONCLUSIONS: Older people with cognitive impairment who are living alone are at higher risk of being overlooked by society. To move toward more inclusive communities, the following are recommended: (i) more interventions focusing on older people living alone; (ii) social interventions to detect daily life collapse or rights violations; and (iii) more support to help people with dementia continue living in the community.

Rice farming care as a novel method of green care farm in East Asian context: an implementation research.

BACKGROUND: Green care farms, which offer care for people with dementia in a farm setting, have been emerging in the Netherlands. The aim of this study was to 1) implement green care farms which use rice farming in Japan, 2) explore the positive experiences of rice farming care, and 3) compare the effect of rice farming care to that of usual care on well-being and cognitive ability. METHODS: We developed a new method of green care farm in Japan which uses rice farming, a farming that is practiced all over East Asia. The participants were 15 people with dementia (mean age = 75.6 ± 9.8 years) who participated in a one-hour rice farming care program once a week for 25 weeks. We also collected qualitative data on the positive experiences of study participants after the program. As a reference data, we also collected the corresponding data of the usual care group which included 14 people with dementia (mean age = 79.9 ± 5.8 years) who were attending the near-by day-care. RESULTS: The mean participation rate on the rice farming care group was 72.1%. After the intervention, participants reported experiencing enjoyment and connection during the program. It also changed the staff's view on dementia. The green care farm group showed a significant improvement in well-being but no significant difference in cognitive function compared to the usual care group. CONCLUSIONS: Green care farms by using rice farming is promising care method which is evidence-based, empowerment-oriented, strengths-based, community-based dementia service, which also delivers meaningful experience for the people with dementia in East Asia. TRIAL REGISTRATION: UMIN, UMIN000025020 , Registered 1 April 2017.

Living on the edge of the community: factors associated with discontinuation of community living among people with cognitive impairment.

BACKGROUND: As Japanese society continues to age, the isolation of older people is increasing, and community living for people with cognitive impairment is becoming more difficult. However, the challenges faced by people with cognitive impairment living in the community have not been fully explored because of methodological difficulties. This study re-accessed people with cognitive impairment identified in a previous epidemiological survey to explore their current situation and the risk factors associated with all-cause discontinuation of community living. METHODS: Under a community-based participatory framework, we examined a high-risk approach for people with cognitive impairment and a community action approach in parallel, to build a dementia-friendly community. For the high-risk approach, we achieved stepwise access to 7614 older residents, which enabled us to select and visit the homes of 198 participants with a Mini-Mental State Examination score < 24 in 2016. In 2019, we re-accessed these individuals. For the community action approach, we built a community space in the study area to build partnerships with community residents and community workers and were able to re-access participants using multiple methods. RESULTS: We found that 126 (63.6%) participants had continued living in the same community, but 58 (29.3%) had discontinued community living. Of these, 18 (9.1%) had died, 18 (9.1%) were institutionalized, 9 (4.5%) were hospitalized, and 13 (6.6%) had moved out of the community. A multiple logistic regression analysis identified the following risk factors associated with discontinuation of community living: being certified under long-term care insurance, needing housing support, and needing rights protection. CONCLUSIONS: Three years after the baseline survey, 29.3% of people with cognitive impairment had discontinued community living. Despite having cognitive impairment or living alone, older people were able to continue living in the community if their needs for housing support and rights protection were met. Both social interventions and medical interventions are important to build age-friendly communities. TRIAL REGISTRATION: UMIN, UMIN000038189, Registered 3 October 2019, https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000043521.

Depressed mood and frailty among older people in Tokyo during the COVID-19 pandemic.

BACKGROUND: The study aim was to identify depressed mood and frailty and its related factors in older people during the coronavirus disease 19 pandemic. METHODS: Since 2010, we have conducted questionnaire surveys on all older residents, who are not certified in the long-term care insurance, living in one district of Tokyo municipality. These residents are divided into two groups by birth month, that is those born between April and September and those born between October and March, and each group completes the survey every 2 years (in April and May). Study participants were older residents who were born between April and September and who completed the survey in spring 2018 and in spring 2020, the pandemic period. Depressed mood and frailty were assessed using the Kihon Checklist, which is widely used by local governments in Japan. We had no control group in this study. RESULTS: A total of 1736 residents responded to both surveys. From 2018 to 2020, the depressed mood rate increased from 29% to 38%, and frailty increased from 10% to 16%. The incidence of depressed mood and frailty was 25% and 11%, respectively. Incidence of depressed mood was related to subjective memory impairment and difficulty in device usage, and incidence of frailty was related to being older, subjective memory impairment, lack of emotional social support, poor subjective health, and social participation difficulties. CONCLUSIONS: Older people with subjective memory impairment may be a high-risk group during the coronavirus pandemic. Telephone outreach for frail older people could be an effective solution. We recommend extending the scope of the 'reasonable accommodation' concept beyond disability and including older people to build an age-friendly and crisis-resistant community.

[Conflicts in the end-of-life care: Interviews with care staff by Buddhist priests and researchers].

AIM: Interprofessional communication and collaboration is essential for a better end-of-life and death, where individual dying people are respected and their satisfaction is the goal. The aim of this study is to explore 1) ethical conflicts viewed by care staff of geriatric institutions, 2) their views about geriatric medicine, and 3) their views about religion in the context of institutional end-of-life care. METHODS: Semi-structured interviews were conducted by Buddhist priests and researchers with nine care workers who worked in nursing homes or long-stay geriatric hospitals. This interview was conducted as part of a research project that investigated the feasibility of the engagement of religious workers in the geriatric care setting. RESULTS: Regarding ethical conflicts, six themes were merged: difficulty in knowing the will of the person being cared for, dissonance with the family, older person's wish to die, losing the purpose for living, staff not being used to death, and families not being used to death. Regarding geriatric medicine, eight themes were merged: gratitude for cooperation, persuasive explanation, not accepting death, not allowing patients to share a peer's death, cold attitude, being drug therapy centered, not being person-centered, and heavy burden for patients. Regarding religion, five themes were merged: expectation for salvation, barrier to hospitals, already involved in nursing homes, explicit religious traits are acceptable, and favorable character of religious workers in institutions. CONCLUSIONS: Communication between geriatric physicians, care staff, and mainstream religious workers, with the aim of providing a better quality of end-of-life and death, is beneficial in a super-aged society.

Everyday challenges facing high-risk older people living in the community: a community-based participatory study.

BACKGROUND: Considering the real-world experiences of those with cognitive impairments is important in building a positive community for older people. Community-based participatory research is an important methodology for investigators focused on improving community health. The aim of this study was to 1) investigate factors associated with the continuation of community dwelling among high-risk older people and 2) to create a model of an inclusive community space for older people in the largest housing complex district in Tokyo. METHODS: From 198 residents who completed all three steps (mail, face-to-face, and home-visit) of a previous large-scale epidemiological survey, we identified 66 residents who were at high-risk of moving out of the community. These participants underwent 6 months of regular assessments by experienced researchers to identify the factors associated with continuing to live in the community. We also employed a community action approach to develop a community space for residents in the study district where more than two researchers who were medical professionals served as staff. The services offered by the space were continuously improved according to user feedback. The function of this center was evaluated during interdisciplinary research meetings. RESULTS: After 6 months, among the 66 high-risk residents, 49 people were living in the community and 12 people had moved out of the community. Those who could not continue to live in the community had greater unmet needs in terms of social support, especially daily living support and housing support. In addition, their families perceived a heavier burden of care. Interestingly, dementia diagnosis via the DSM-5, clinical dementia rating, physical health, mental health, and long-term care usage did not predict the outcome. Through discussions with guests, we equipped the space with various services such as coordination of community care and networking with existing organizations. CONCLUSIONS: Merely providing healthcare and long-term care might not be sufficient to support community living in people with cognitive impairments. Daily living support and housing support should be provided in the context of a broad health services package. For this purpose, creating a comfortable community space for residents and community workers is essential.

The Differential Effects of Age on the Association Between Childhood Socioeconomic Disadvantage and Subjective Symptoms of Dementia Among Older Japanese People.

BACKGROUND: Despite increasing evidence of an association between childhood socioeconomic disadvantage and cognitive outcomes, such as dementia and cognitive decline, in Western countries, there are no studies on this association from non-Western societies. We investigated the relationship between childhood socioeconomic status (SES) and subjective symptoms of dementia among community-dwelling older Japanese people and examined age and sex variations in this association. METHODS: Data were derived from a cross-sectional survey for all community-dwelling individuals aged 65 years and over in Adachi, Tokyo (n = 132,005). We assessed subjective dementia symptoms using a self-administered dementia checklist, which was validated by comparison with the Clinical Dementia Rating scale. RESULTS: Data from 75,358 questionnaires were analyzed. After adjusting for potential covariates, lower childhood SES was associated with greater likelihood of subjective dementia symptoms. We found a significant interaction between childhood SES and age on subjective dementia symptoms but no interaction between childhood SES and sex. Age-stratified analysis indicated that the association between lower childhood SES and subjective dementia symptoms was stronger in the ≥75 years subgroup than in the 65-74 years subgroup, indicating an effect modification of age on this association. CONCLUSIONS: Our findings suggested that low SES in childhood might have a long-term influence on dementia symptoms in late life and that this influence varied by age. This differential association might be explained by the social and historical context in Japan (ie, World War II, postwar chaos, and high economic growth) that has shaped participants' early experiences.

Does community social capital buffer the relationship between educational disadvantage and cognitive impairment? A multilevel analysis in Japan.

BACKGROUND: This study explored the relationship between community social capital and cognitive impairment, with a focus on the buffering role of community social capital in the association between educational disadvantage and cognitive impairment in community-dwelling older adults in Japan. METHODS: We used data from two population-based, cross-sectional surveys targeting people aged ≥65 years in a suburban city of the Tokyo metropolitan area (n = 897; 49.8% men; average age = 74.4 years). Social capital included social support (emotional and instrumental support) and the strength of social networks (neighborly ties). To create district-level social capital indicators, we aggregated individual responses on social capital within each district. The Mini-Mental State Examination, Japanese version was used for the assessment of cognitive function. RESULTS: Using multilevel logistic regression analysis, we found that lower amounts of district-level emotional and instrumental support were associated with a greater likelihood of cognitive impairment among men. For women, district-level emotional support was associated with a greater likelihood of cognitive impairment. Additionally, a strong district-level social network buffered the relationship between low education and cognitive impairment in both sexes. CONCLUSIONS: Community social capital appears to have a protective role in determining cognitive function in old age. Our findings may facilitate the development of new community-based strategies to combat dementia.

Anticipatory anxiety about future dementia-related care needs: towards a dementia-friendly community.

AIM: Although a dementia-friendly community is a global goal, community-dwelling persons with dementia continue to have unmet care needs. The aim of this study was to explore the characteristics of persons who experience anxiety about the possibility of not receiving proper dementia care should they need it in the future. METHODS: A questionnaire was mailed to all residents aged 65 years or older (n = 132 005) living in one Tokyo district. The questionnaire included an item that measured anxiety about the possibility of not receiving proper dementia care as well as items about sociodemographic variables, depressive symptoms, frailty, housebound status, socioeconomic status, social support, access to a general practitioner (GP), and experience of dementia care. RESULTS: Of the 74 171 participants who responded to the anxiety item, 58 481 (78.8%) reported anxiety about the possibility of not receiving proper dementia care should they need it in the future. Simultaneous multiple logistic regression analysis indicated that factors associated with this anticipatory anxiety were depressive symptoms, frailty or prefrailty, being female, not being currently socioeconomically disadvantaged, not having someone who can take you to the hospital when you do not feel well, being younger (65-74 years), being married, not trusting in neighbours, higher educational level (>9 years), not having someone to consult when you are in trouble, not working, having been socioeconomically disadvantaged in childhood, only greeting or less with neighbours, and not having the experience of dementia care. Having access to a GP, living alone, and going out less than once a week did not show a significant association. CONCLUSIONS: This large-scale study explored factors associated with anticipatory anxiety about the possibility of not receiving proper dementia care should it be needed in the future. Further studies concerning interventions to decrease such anxiety are needed.

[The development of care farming for elderly people with cognitive impairment to enhance social inclusion: A feasibility study of rice-farming care for elderly people with cognitive impairment].

AIM: The aim of this study was to assess the feasibility of rice-farming care among elderly people with cognitive impairment as a tool for social inclusion. METHODS: Eight elderly individuals with cognitive impairment (7 men, 1 woman, mean age 68.3 years old) participated in the program over 25 weeks. The cognitive function, well-being, and depression were assessed before and after the program period. The degree of participants' independence during the program was also assessed. Semi-structured interviews with the participants and caregivers were held after the program period. RESULTS: The average participation rate was 93.0%. There were no unexpected events, and the subjects carried out farmwork almost independently. Regarding their well-being, two participants who scored below the cut-off criterion of mental health before the study scored above the cut-off after the study. Regarding depression, two participants who scored positive with a two-question case-finding instrument no longer scored positive after the study. Interviews with the participants showed that they enjoyed the program, especially because they had peers, a role, and gained positive emotions. Interviews with the caregivers showed that they had recognized for the first time what people can do with their skills. CONCLUSION: The results of the present study indicate that rice-farming was a feasible method of care with a positive impact on the well-being and depression of elderly people with cognitive impairment and enhanced their social participation, drawing out their individual strengths.