A Multiple Stakeholder Perspective for Evaluating Community-Based Dementia Care

Abstract For holistic interventions and research on dementia, it is fundamental to understand care experiences from the perspectives of carers, care recipients, and care professionals. While research on care dyads and triads have highlighted the effects of communication and interactional aspects on care relationships, there is a lack of knowledge on how individual-contextual and relational factors shape the provision and receipt of care in terms of decision-making processes, resource allocation, and expectations of care outcomes. Thus, this paper sheds light on (i) how carers negotiate care provision with other important life domains such as employment, household/family roles and conflicts, as well as their own health problems, life goals, values, and aspirations for ageing; (ii) how older adults with dementia perceive support and those who provide it; (iii) the structural constraints faced by care professionals in delivering a team-based mode of dementia care; and, taken together, (iv) how community-based dementia care is impeded by barriers at the individual, relational, and institutional levels. Findings were derived from semi-structured interviews and observational data from fieldwork conducted with 20 persons with dementia (median age = 82), 20 of their carers (median age = 60), and 4 professional care providers. All respondents were clients and staff of a multidisciplinary and community-based dementia care system in Singapore. Our analysis indicates the impact of dementia care is strongly mediated by the interplay between institutional/familial contexts of care provision and the various ‘orientations’ to cognitive impairment and seeking support, which we characterised as ‘denial/acceptance’, ‘obligated’, ‘overprotective’, and ‘precariously vulnerable’.

Among non-pharmacological interventions to address behavioral problems of residents with dementia, Music and Memory (M&M), a popular individualized music listening program, has been shown to have potential to improve quality of life among residents. To examine facilitators and barriers to implementation and sustainability of the M&M program in nursing facilities, a statewide (online and mail) survey of nursing homes was conducted in Wisconsin where the statewide implementation of the program occurred. The response rate was 41% (N=161). Descriptive statistics and content analysis were conducted. Over 80% of facilities provided the M&M program, and 86% of them planned to continue the program. The majority of respondents found the M&M to be beneficial to residents but also reported that the program was not equally effective for everyone, and M&M was time and labor intensive. Barriers to sustainability were: lack of buy-in by direct care staff, use of technology, costs of equipment, inconsistent volunteers, and families not supportive or helpful. Facilitators were: support of facility personnel, family, and volunteers; observing positive effects of program, M&M training provision and support, family involvement, and accessibility of equipment. Targeted resident selection is needed to identify the residents most likely to benefit from the program to avoid possibility of increased agitation or discomfort. Careful consideration is needed for facilities to identify realistic costs, labor, and staff buy-in to promote success. Michelle Kimzey, Ramona Baucham, Chelsea Martin, and Carol Howe, Texas Christian University, Fort Worth, Texas, United States There are unique challenges and considerations when receiving the diagnosis of dementia. There are interventions, services, and supports for people with dementia and their care partners, yet they are often unknown, disconnected, and may not be widely available or easily accessible. Health literacy was defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Using a descriptive qualitative design, the purpose of this study was to describe how persons living with dementia and their care partners obtain, understand, and use information to make health decisions to live well with dementia. The convenience sample consisted of 28 care partners and 15 people living with dementia participating in 6 separate focus groups. To illuminate findings, data was analyzed using a hybrid approach (deductive followed by inductive). Four themes emerged deductively as persons gain health literacy in dementia (access, understand, appraise, and understand). The notable finding is the trend at diagnosis where they first are "seeking the expert" ,and as they move from dependence and gain understanding they are "becoming the expert", and finally as they apply information they are "acting as the expert" for themselves and others. Engaging them in research not only gave them a voice but more importantly it influenced the health information that will be developed and implemented by them. These findings suggest there is a wealth of knowledge to be gained by persons living with dementia and their care partners.

TRIPLE JEOPARDY? STRESS AMONG DEMENTIA CAREGIVERS THROUGH THE LENS OF INTERSECTIONALITY Ruotong Liu, and Iris Chi, University of Southern California, Los Angeles, California, United States
Despite the benefits to economy and public health, caregivers are negatively affected by caregiving activities. Dementia caregivers, compared to other caregivers, are experiencing higher levels of stress, due to reasons such as the care recipients' changes in personalities and behaviors. Previous studies have documented differences in caregiver stress across gender and racial/ethnic groups. However, few studies have looked into caregiving differences within both gender and race/ethnicity through an intersectionality framework. This paper seeks to explore what are the differences in caregiving stress across the intersectionality of race and gender. Using Round 5 and Round 7 of NSOC and NHATS data, we examined differences in caregiver stress across and within different gender and racial/ethnic groups in terms of financial, emotional, and physical stress. 1,206 caregivers were included with 61% female, 50% White, and 32% Black caregivers. Logistic regression results indicate that female is less likely to have financial stress, but more likely to experience emotional stress. Compared to White, Black caregivers are worse off financially but better off physically. Both Black and other racial/ethnic caregivers are less likely to have emotional stress. Within the intersectionality framework, compared to White female, Black male are 3.4 times more likely to experience financial stress, all the other groups are 38%-71% less likely to have emotional stress, and Black female are 53% less likely to have physical stress compared to White female. The findings highlighted that in order to develop more effective interventions or policies, unique areas are to be focused for different population subgroups.

A MULTIPLE STAKEHOLDER PERSPECTIVE FOR EVALUATING COMMUNITY-BASED DEMENTIA CARE
Johan Suen, Duke-NUS Medical School, Singapore, Singapore For holistic interventions and research on dementia, it is fundamental to understand care experiences from the perspectives of carers, care recipients, and care professionals. While research on care dyads and triads have highlighted the effects of communication and interactional aspects on care relationships, there is a lack of knowledge on how individualcontextual and relational factors shape the provision and receipt of care in terms of decision-making processes, resource allocation, and expectations of care outcomes. Thus, this paper sheds light on (i) how carers negotiate care provision with other important life domains such as employment, household/family roles and conflicts, as well as their own health problems, life goals, values, and aspirations for ageing; (ii) how older adults with dementia perceive support and those who provide it; (iii) the structural constraints faced by care professionals in delivering a team-based mode of dementia care; and, taken together, (iv) how communitybased dementia care is impeded by barriers at the individual, relational, and institutional levels. Findings were derived from semi-structured interviews and observational data from fieldwork conducted with 20 persons with dementia (median age = 82), 20 of their carers (median age = 60), and 4 professional care providers. All respondents were clients and staff of a multidisciplinary and community-based dementia care system in Singapore. Our analysis indicates the impact of dementia care is strongly mediated by the interplay between institutional/familial contexts of care provision and the various 'orientations' to cognitive impairment and seeking support, which we characterised as 'denial/acceptance', 'obligated', 'overprotective', and 'precariously vulnerable'.

ADAPTIVE REUSE OF DISTRESSED MALLS FOR DEMENTIA-FRIENDLY CITY CENTERS: OUTCOMES FROM COMMUNITY FOCUS GROUPS Emily Roberts, Oklahoma State University, Stillwater, Oklahoma, United States
It is estimated that 5.4 million Americans have some form of dementia and these numbers are expected to rise in the coming decades, leading to an unprecedented demand for memory care housing and services. In searching for innovative options to create more autonomy and better quality of life in dementia care settings, repurposing existing structures, in particular vacant urban malls, may be one option for the large sites needed for the European model of dementia villages. These settings may become sustainable Dementia Friendly City Centers (DFCC), because in the case of enclosed mall construction, the internal infrastructure is in place for lighting, HVAC, with varied spatial configuration of public spaces. This presentation describes the community engagement research being conducted by a research team at a Midwestern university, laying groundwork for the DFCC model for centralized dementia programs, services and attached housing. Focus group outcomes from four disciplines (caregiver, physician, designer, community development) detailed four principle themes including : community revitalization, building sustainability, urban regreening and the nurturing of innovation to further a culture of dementia care which is inclusive, progressive and convergent with the needs of an aging. The DFCC model can be seen as one opportunity to make life better not only for those with needs associated with dementia now, but also for ourselves in the future, therefore educating and updating future stakeholders about the value of this model of care will be critical in transforming current hurdles into future opportunities.

AGE COHORT DIFFERENCES AND DEPRESSIVE SYMPTOMS AMONG COMMUNITY-DWELLING OLDER AMERICANS
Ethan Siu Leung Cheung, 1 and Ada Mui, 2 1. Columbia University,Bronx,New York,United States,2. Columbia University,New York,New York,United States This study uses Wave 3 National Social Life, Health and Aging Project to examine the correlation between age cohorts [60s (n=1204); 70s (n=1176); 80 and older (n= 724)], cognitive status, and depression symptoms. In the total sample, 53.90% were females, 76.15% Whites, 15.29% Blacks, and 8.56% Asians. Compared to the 60s and 70s cohorts, 80+ cohort was cognitively more impaired [Mean (SD) of MoCA Short Form were 10.7(2.9), 10.0(3.2), and 8.1(3.6)]. There were no age cohorts' differences in depressive symptoms experienced (Mean of CESD Short Form = 21.03; SD = 4.06). In order to identify predictors of depression, multiple hierarchical regressions were performed. The 60s sample was the reference group to compare with 70s and 80s cohorts. Results showed that age cohort variables had a significant independent effect as well as a joint effect with cognitive status in explaining depression scores. For each age cohort group, parallel regression analyses were conducted and all models were significant. Findings suggest that ADL impairment was the only common predictor for depressive symptoms for the three cohort groups, and the association was the strongest for the 60s cohort (b = .31). Other unique predictors for 60s cohort were lower-income, more IADLs impairment, higher stress and cognitive impairment. For the 70s cohort, unique predictors of depressive symptoms were female gender, unmarried, and less socialization. For the 80 and above group, correlates of depression are female, White, and high stress level. Findings highlight the necessity of age-sensitive programs on depression support for community-dwelling older Americans.

COGNITIVE STIMULATION THERAPY OUTCOMES ACROSS HEALTHCARE AND COMMUNITY SETTINGS FOR INDIVIDUALS WITH DEMENTIA Randy Gallamore, Saint Louis University, St. Louis, Missouri, United States
Cognitive Stimulation Therapy (CST) is an evidenced-based intervention for individuals with mild to moderate dementia. Originally developed in the U.K., CST has been adapted in several areas of the United States as a meaningful group intervention to help aid in recall and reminiscence for this population. Adaptations of CST have now been developed, including the application of these groups in medical and healthcare settings. However, no study to date has compared memory and mood outcomes of community CST groups to healthcare CST groups. This study will examine the differences in memory, mood and physical mobility scores across both rural and urban settings where CST is used. Two-hundred and sixty-six total participants who have completed all 14 sessions were analyzed, with 150 who participated in a rural hospital and 116 who were in community or university settings. Preliminary data shows that CST is an intervention that can be used effectively in both environments. The results from this study show that improvements in scores were seen in both community (SLUM = +1.75; Cornell = -1.41) and healthcare settings (SLUM = +2.59; Cornell = -2.63). CST might be a meaningful intervention to also help in decrease depression and loneliness in this population. Continued group interventions should be developed in medical and healthcare settings as a resource for patients and family members with dementia-related disorders. There should also be further consideration on the factors that impacted the difference between the two settings.