Background
The number of people who are 65 years and older in Japan exceeded 28% of the total population in 2018 [
1]. Japan is becoming the most aged society in the world [
2,
3]. As the society ages, the number of people with dementia is expected to grow to around 10,000,000 by the mid-century [
4], exceeding 10% of the total population. The Japanese government has created a national dementia strategy with the goal to reform the care system from one that is institution-based to one that is community-based. This “community-based integrated care system” would enable older people to age in the community for as long as possible [
5].
Aging and the associated changes can threaten one’s emotional, social, physical, and financial well-being if an individual is not able to successfully adapt to these changes. Poor adaptation to changes, as well as increasing need for care, can lead individuals to lose function such that they may no longer be able to live in the community. According to Golant [
6], the promotion of environments in which residential normalcy is a common goal can prevent unproductive discussions regarding age-segregated vs. age-integrated environments. Residential normalcy is not a static state, but exists with a dynamic tension that modulates according to residential comfort and residential mastery. To deliver residential normalcy for older people with cognitive impairments, real-world evidence concerning the experiences of community-dwelling older people with cognitive impairment is essential, which have not been fully explored [
7].
Previous studies have mainly focused on the survival rate of people with dementia. For instance, Ohara [
8] reported that the 5-year survival rate of dementia patients in Japan improved from 47.3 to 65.2% between 1988 and 2002. Prospective studies conducted in France [
9] and the UK [
10] both estimated the survival time from disease onset to be 4.5 years. Further, van de Vorst [
11] reported a linkage between low socioeconomic status (SES) and mortality in dementia patients. Specifically, the 5-year mortality rate in men was 74% among those in the lowest SES tertile and 57% among those in the highest. Similarly, Chen [
12] reported a higher mortality rate associated with living in a rural area (adjusted hazard ratio = 2.96) and having depression (adjusted hazard ratio = 4.15). However, few studies have gathered information about the experiences of people with dementia living in the community. In addition, the specific variables that impact community living are still unclear. From a clinical viewpoint, the factors that influence one’s ability to continue living in the community could be related to dementia, mental health, physical health, the characteristics of the community, socioeconomic status, and the need or lack of social support, in addition to sociodemographic variables.
According to Grill and Galvin [
13], only a small portion of community dwelling older people participate in clinical trials and biomarker studies, and participants in such trials tend to be younger, more educated, and are more likely to be Caucasian. To address this, Grill and Galvin recommended the use of community-based participatory research principles. Similarly, Lepore et al. [
14] reported that people with dementia were frequently excluded from research, and encouraged investigators to involve these individuals as participants in studies about care and service.
In conventional public health research, participants are usually assessed at multiple points in time. In such studies, follow-up assessments are a major challenge. For instance, if a participant was no longer registered in a particular area, privacy protection in Japan [
15] can make it difficult to judge whether the participant has moved to another area or has been institutionalized/ hospitalized. In addition, the experiences of the participants are often unclear. One approach for investigating individual experience is qualitative studies. However, the participants in such in-depth studies are not necessarily a representative sample. To address this, in the present study, we used a representative sampling method.
The aim of this study was 1) to investigate factors associated with the continuation of community dwelling amongst older individuals with cognitive impairment and 2) to create a model of an inclusive community space in the center of the largest housing complex district in Tokyo, which is known to have weakened social ties and an aging resident population. This study was based on the community-based participatory research (CBPR) approach [
16,
17]. In CBPR, researchers and community stakeholders form equitable partnerships and co-construct research for the mutual and complementary goals of community health improvement and knowledge production.
Results
Factors associated with high-risk participants continuing to live in the community
After the six-month follow-up period, 49 people remained in the community and 12 people had moved out of the community, i.e., into institutions (five people) or hospitals (seven people). We were not able to follow 5 participants for the entire follow-up duration. Table
2 compares the demographic variables of those who continued to live in the community with those who did not. Those who could not continue to live in the community had more unmet need in terms of social support, especially daily living support and housing support. In addition, their families perceived a heavier burden of care. Interestingly, a DSM-5 diagnosis of dementia, clinical dementia rating, physical health, mental health, and long-term care usage did not predict the outcome.
Table 2The functions of the community space during the study period
Activities involving other community workers |
Exchanging information | Every time our staff visited a participant, nobody answered the door and there was an unintelligible note on the door that appeared to have been written by the participant. Staff from existing community centers exchanged information regarding this issue in our space. |
Coordination of community care | A participant was diagnosed with a life-threatening disease, but ran out of the hospital and refused to go back. Our staff arranged for the community physicians and staff from the existing community center to meet the participant in our space to make a care plan. |
Activities involving other community workers and the individuals |
Anti-abuse action | A participant’s spouse seemed to be suffering from abuse, but was unable to talk about it at their home. Careful intake was conducted in our space, and we then reported the case to the local government. |
Anti-stigma action | A participant was bullied because others regarded their forgetfulness as laziness. The researcher gave the participant a brief anti-stigma education. |
Anti-poverty action | A participant was suffering from poverty and refused external help. Our staff collaborated with the community center to explain how to create a reliable safety net. |
Outreach | When our staff visited a participant’s house, their caregiver was deeply confused about how to care for a person with frailty. The caregiver was referred to the community center for more information. |
Activities involving just the individuals |
Education | A participant’s spouse was experiencing burnout because they were engaging in caregiving despite having been diagnosed with a serious illness. The researcher suggested that the couple access public help, educating them on the value of help-seeking. |
Assistance with understanding the medical system | A participant’s family was suspicious because the general hospital decided to refer the participant to the neighboring outpatient clinic. The staff helped the family to understand the community medical system. |
Emotional support for caregivers | A participant refused to go to the hospital and their family was exhausted from caregiving. The family talked about BPSD in our community space and received empathy from the staff. |
Social participation | A participant who was homebound began to come to participate in activities. |
Safeguarding a small amount of money | Although the participants enjoyed a community lunch club (organized by a different center), they often forgot to pay for it. Because the leader of the lunch club and the participants often meet at our space, we kept a small amount of money at our space to help the participants pay for lunch. |
Day care | When a caregiver (who had denied that the participant they were caring for had dementia) suddenly died, the participant had no place to stay in the daytime and began wandering the community. Eventually, the participant stayed at our space during the day. |
Concerning the 49 people who continued to live in the community, we assessed NPI-Q, DASC-21, and J-ZBI_8 scores before and after the follow-up period. Although NPI-Q (0.7 to 0.9, p = 0.228) and J-ZBI_8 (8.1 ± 7.7 to 9.0 ± 7.1, p = 0.531) scores were not significantly different, DASC-21 scores (34.6 ± 13.9 to 37.6 ± 15.0, p < 0.005) increased significantly, indicating that dementia had progressed.
Development of a model of inclusive community space
The average number of daily guests to the center was 12.7. Medical consultations by a doctor were available on 17 days, and the average number of consultations per day was 3.4. A conference with the staff from the existing community centers was held once a month. A half-hour health lecture for the residents was delivered once per month.
Our community space served a number of different purposes for the residents, in addition to functioning as a basecamp for our observations. For example, when a participant’s only caregiver suddenly died, the participant had no place to stay in the daytime. The participant began wandering throughout the community because the caregiver had denied that the participant had dementia, resulting in a lack of social support. Thanks to a relative, the participant was diagnosed with dementia and began to receive appropriate social support. However, she was unable to understand her situation, and repeatedly came to our community space in the morning before it had opened. Although she was upset, it was possible to calm the participant down with conversation or an explanation provided by the researcher. Thus, the center functioned as a de-facto day care center.
Table
3 describes the functions of the community space, which included exchanging information, coordination of community care, anti-abuse, anti-stigma, and anti-poverty action, outreach, education, assistance understanding the medical system, emotional support for caregivers, social participation, safeguarding small amounts of money for residents, and day care. These functions were categorized into three categories: 1) activities involving other community workers, 2) activities involving other community workers and individuals, and 3) activities involving just the individuals. We described the various episodes that occurred at the centre carefully, omitting detail to ensure the privacy of the participants.
Table 3Demographic variables of those who continued to live in the community compared with those who did not
number | | 49 | 12 | | |
Sociodemographic variables |
Sex | Male | 24 (49%) | 4 (33%) | | p = 0.343 |
Female | 25 (51%) | 8 (67%) | | |
Age | 65–74 | 81.9 ± 5.8 | 82.8 ± 4.7 | | p = 0.657 |
Education | ≥ 9 years | 13 (28%) | 3 (27%) | | p = 0.979 |
< 9 years | 34 (72%) | 8 (73%) | | |
Living status | Living alone | 21 (43%) | 7 (58%) | | p = 0.356 |
Living with others | 28 (57%) | 5 (42%) | | |
Marital status | Married | 29 (60%) | 6 (55%) | | p = 0.745 |
Not married | 19 (40%) | 5 (45%) | | |
Dementia-related variables |
Dementia | DSM-5 dementia | 12 (24%) | 3 (25%) | | p = 0.971 |
not dementia | 37 (76%) | 9 (75%) | | |
CDR | 0 | 5 (10%) | 1 (8%) | | |
0.5 | 19 (39%) | 1 (8%) | | |
1 | 22 (45%) | 6 (50%) | | |
2 | 2 (4%) | 3 (25%) | | |
3 | 1 (2%) | 1 (8%) | | |
MMSE-J | | 20.2 ± 2.5 | 19.0 ± 3.0 | | p = 0.17 |
NPI-Q | | 0.9 ± 1.9 | 1.6 ± 2.2 | | p = 0.504 |
J-ZBI_8 | | 7.9 + 7.5 | 19.7 + 3.8 | * | p = 0.018 |
Mental-health related variables |
GDS | normal | 17 (38%) | 4 (33%) | | p = 0.615 |
mildly depressed | 22 (45%) | 5 (42%) | | |
severely depressed | 6 (12%) | 3 (25%) | | |
WHO5-J-S | | 8.1 ± 4.0 | 6.2 ± 5.6 | | p = 0.183 |
Physical-health related variables |
Frailty | healthy | 12 (26%) | 2 (17%) | | p = 0.846 |
prefrailty | 12 (26%) | 4 (33%) | | |
frailty | 22 (48%) | 6 (50%) | | |
Access to doctor | having GP | 42 (88%) | 10 (83%) | | p = 0.655 |
not having GP | 6 (12%) | 2 (17%) | | |
Community-related variables |
Communicating with neighbor | lower than 1/month | 28 (64%) | 8 (67%) | | p = 0.846 |
1/month and over | 16 (36%) | 4 (33%) | | |
Trust in neighbor | no trust | 6 (13%) | 4 (27%) | | p = 0.088 |
trust | 40 (87%) | 11 (73%) | | |
Socio-economic status |
Subjective disadvantage | present | 19 (40%) | 6 (50%) | | p = 0.74 |
absent | 28 (60%) | 6 (50%) | | |
Income | < 1,000,000 yen | 9 (22%) | 2 (20%) | | P = 0.893 |
over | 32 (78%) | 8 (80%) | | |
Long-term care usage |
using LTC | | 7 (14%) | 4 (33%) | | p = 0.124 |
not using LTC | | 42 (86%) | 8 (67%) | | |
Need for social support |
Dementia disease diagnosis | | 31 (63%) | 8 (67%) | | p = 0.826 |
Medical check-up for physical conditions | 8 (16%) | 4 (33%) | | p = 0.184 |
Continuous medical care | | 8 (16%) | 4 (33%) | | p = 0.184 |
Daily living supports | | 18 (37%) | 9 (75%) | * | p = 0.017 |
Supports for their family | | 23 (47%) | 8 (67%) | | p = 0.221 |
Housing condition | | 2 (4%) | 4 (33%) | ** | p = 0.002 |
Lon-term care insurance | | 26 (53%) | 7 (58%) | | p = 0.743 |
Financial supports | | 7 (14%) | 2 (17%) | | p = 0.744 |
Rights protection | | 8 (16%) | 4 (33%) | | p = 0.184 |
Discussion
Of the 66 high-risk individuals, 12 people were unable to continue living in the community during the observation period. Considering that previous studies have mainly focused on mortality or survival rates because of difficulties accessing detailed information, our study represents an important examination of the real-world environment experienced by older community residents.
Before conducting this study, we hypothesized that factors that might be associated with an inability to continue living in the community might include medical biomarkers such as 1) clinical dementia stage, 2) physical frailty, 3) poor mental health, and 4) not accessing long-term care. However, our data indicated that the significant determinants were not medical markers, but instead unmet needs regarding social support and care burden. The national dementia strategy of Japan consists of 7 pillars [
5,
34]: 1) Raising awareness and promoting understanding of dementia, 2) Providing healthcare and long-term care services in a timely and appropriate manner as the stages of dementia progress, 3) Reinforcement of measures for younger onset dementia, 4) Support for those looking after people with dementia, 5) Creating age and dementia-friendly communities, 6) Promoting research and development and disseminating the results with regard to prevention, diagnosis, cures, rehabilitation models, and care models for dementia, and 7) Prioritizing the viewpoint of persons with dementia and their families. In hospitals, medical staff members sometimes focus mainly on healthcare and long-term care that concerns pillar 2. However, our results indicate that decreasing the family’s care burden (pillar 4), as well as the delivery of daily living support and housing support (pillar 5), is beneficial to community living. Thus, broadening the approach to care in medical settings may help older people to remain in the community for longer.
In this study, we used the CBPR approach to create a model of an inclusive community space with a human-rights-based approach, which is embodied in the PANEL framework. Our space acquired many functions on several levels. These included exchanging information, coordination of community care, anti-abuse, anti-stigma, and anti-poverty action, outreach, education, assistance understanding the medical system, emotional support for caregivers, social participation, safeguarding property, and day care. We grouped these functions into three categories: 1) activities involving other community workers, 2) activities involving other community workers and individuals, and 3) activity involving just individuals. These functions are consistent with the PANEL perspective. For any questions regarding legality, we consulted our legal counsel. For example, before we agreed to safeguard small amounts of money, we consulted our legal counsel and were advised that this activity was not legally problematic.
Because a guarantor, who is usually a family member or relative, is necessary to secure rental housing in Japan, socially isolated older people may find it difficult to rent an apartment. The housing complex in Takashimadaira is the largest housing complex owned by the Urban Renaissance Agency, which is an independent administrative agency that has built over 800,000 housing units since 1955, and does not require tenants to have a guarantor. As a result, many older isolated people live there. To examine the results of our present study, we proposed two context-mechanism-outcome configurations [
35]. First, the members of the initial study population were aware that the district in which the housing complex was located was rapidly aging and had some anxiety about the future of the community (context). Because of this, the residents agreed to complete the public health survey, which was planned via a collaboration between the city officials and our institute (mechanism). As the result, we successfully conducted a very large-scaled epidemiology study (outcome). Accordingly, as the project progressed, the residents and researchers came to know one another (context). Based on this relationship, the building of the new community space was easily welcomed by the residents (mechanism). As the result, this CBPR project was realized (outcome). According to previous literature [
36], such partnerships prioritize the generation of a shared vision together with shared values. In our study, based on the partnerships that were formed with the community residents, we were able to identify a function for enhancing age friendly communities in Japan.
However, several obstacles limit the generalization of our approach to different communities. First, research interventions might not be welcomed when residents do not have anxiety about the future of their community. Second, our project was large-scale and involved many researchers, and this might not be feasible in other communities.
During this study, researchers were strongly encouraged to build trust with people with dementia by visiting them at home. Information provided by the people with dementia was strongly respected, and was not considered to be inferior to information provided by family or other associated individuals. According to previous literature [
37,
38], there is a discrepancy between caregiver and patient perspectives, and caregivers may have a more negative perspective regarding the function and daily life of patients. According to a qualitative analysis of in-depth interviews with people with dementia [
39], a key factor in preserving personal dignity is engagement in meaningful activities within the safe and secure environment of the patient’s home. This previous report found that home is “a symbol of the identity the participant had built up over a lifetime”. One characteristic of our study is that assessments were mainly conducted at patient homes. Further research is needed to explore the factors that enhance the ability to continue living in the community.
Strengths and limitations
One strength of this study is that while the participants were identified using the standard flow method of large-scale public health research, we observed the experiences of the participants from a research basecamp that was rooted in the community. However, our study had several limitations. First, the number of participants was 66, which is low when conducting statistical analysis. As a result, we could not conduct multiple logistic regression analysis. Second, the selection of the 66 high-risk individuals out of the 198 potential participants was not strictly operational; we relied on expert consensus rather than cutoff points for some psychometrics. Third, we did not employ brain imaging or blood tests to facilitate dementia diagnoses. Such tests could have enabled the visiting psychiatrist assessing neurological symptoms to rule out intracranial lesions or other physical conditions that lead to cognitive decline. Fourth, interactions with the researcher may have affected the main outcome, presumably by encouraging participants to continue community living. Fifth, we did not conduct a structured interview that was audio recorded or transcribed verbatim for our qualitative analysis.
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