Including ethnic minorities in dementia research: Recommendations from a scoping review.

Introduction: Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help-seeking and care. Despite increasing population diversity in high-income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research. Methods: We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high-income countries were included. A steering group of experts developed criteria through which high-quality studies were identified. Results: Sixty-six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty-three studies translated or used a culturally validated instrument. Twenty-three articles conducted subgroup analyses based on ethnicity. Six high-quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia. Discussion: We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

Communicating COVID-19 health information to culturally and linguistically diverse communities: insights from a participatory research collaboration.

OBJECTIVE: To consider the challenges of communicating COVID-19 directives to culturally and linguistically diverse (CALD) communities in Australia, and present evidence-based solutions to influence policy and practice on promoting relevant health behaviours; to advance participatory research methodologies for health behaviour change. Type of program or service: We present a case study of a participatory research collaboration between CALD community leaders and health behaviour change scientists during the COVID-19 crisis. The goal was to better understand the role of community leaders in shaping health behaviours in their communities and how that role might be leveraged for better health outcomes. METHODS: This article is the culmination of a series of dialogues between CALD community and advocacy leaders, and health behaviour change scientists in July 2020. The academic authors recruited 12 prominent CALD community leaders, conducted five semi-structured dialogues with small groups, and worked with all participants to develop insights that were applicable to the many different CALD communities represented in the research collaboration. RESULTS: Three key findings emerged: 1) partnerships between CALD leaders, communities and government are critical for effective health communication; 2) shifting behaviour requires moving beyond disseminating information to designing tailored solutions; and 3) the diverse needs and circumstances of people and communities must be at the centre of health communication and behaviour change strategies. LESSONS LEARNT: The collaborative process we undertook in this study enabled us to identify key challenges experienced and solutions offered by CALD leaders in communicating health information throughout the COVID-19 pandemic. Partnering with communities that are subject to health messaging can reduce inequalities in healthcare communication by enabling the development of strategies that help align human behaviour with the recommendations of health experts. This - along with sustained partnership and collaboration with CALD communities, understanding the cultural context, and the appropriate tailoring and delivery of communications - will ensure health-related messages are not lost in translation. The lessons provided in this paper are applicable not only to the current pandemic but also to post-pandemic social and economic recovery.

Exploring the implementation of the Community for Successful Ageing (ComSA)program in Singapore: lessons learnt on program delivery for improving BioPsychoSocial health.

BACKGROUND: The Community for Successful Ageing (ComSA) program has implemented overlapping BioPsychoSocial (BPS) components as part of a Community Development (CD) grassroots and volunteer-led initiative. Implementation of such multi-component programming is influenced by known program characteristics including novelty, complexity and observability as well as related organizational factors. As such, we explored ComSA CD's implementation from the organizational perspective, seeking to inform program improvements. METHODS: We conducted four focus groups with program staff, partners and trainers (total N = 21 participants). Findings were analysed using an interpretative approach and synthesized into a line of argument informing lessons learnt. RESULTS: An implementation framework was identified. It is guided by considering the influence of known program characteristics across major themes, representing three core implementation stages. These and supporting sub-themes are elaborated in turn: 1) Creating commitment toward the program was challenged by novelty and at times a lack of shared understanding of ComSA CD, particularly relating to the S component. Overall, cohesion within organizational contexts and having a strong rapport with the community (ability to engage) were needed to persuade volunteers and participants to commit to the program. 2) Coordination and resource allocation were influenced by the complexity of interconnecting BPS components - requiring aligning communication between partners and adapting the BPS sequence, given the separated management structure of program trainers. Efficiency of resource utilization was constrained by the ability to pool and match resources given the limited manpower and community partners who worked-in-silo due to a KPI-centric culture. 3) Collaborative program monitoring and appraisal increased observability of the program's benefits, but depended on partners' prior commitment. Despite appreciating its holistic BPS programming, dropout rate was used as a way to gauge program success, which has limited interpretability. Occasional uncertainty about the program value contributed to concerns about duplicating existing ageing programs, particularly those related to the B component. CONCLUSION: Lessons learnt for improving BPS programming include (1) eliciting better participants' buy-in and shared program vision, (2) increasing adaptability of BPS sequence and building a culture of shared values for working together (3) and developing comprehensive monitoring systems for program appraisal.

Theory and Design of the Community for successful ageing (ComSA) program in Singapore: connecting BioPsychoSocial health and quality of life experiences of older adults.

BACKGROUND: Despite the emphasis on holistic health promotion in community programs for older people, few studies explicitly consider how BioPsychoSocial (BPS) health elements are interconnected and function to improve Quality of Life (QoL). The Community for Successful Ageing (ComSA) program in Singapore focuses on Community Development (CD) initiatives for older people, accounting for BPS theory in its design and content. Biological (B) health is conceived as physiological and cognitive functioning and related biological self-care; Psychological (P) health as feelings of life satisfaction, and Social health (S) as perceived social support and civic engagement. Furthermore, three overlapping sub-constructs are theorized to connect these elements. Namely Bio-Psychological (BP) health in terms of self-perceptions of ageing; the Psycho-Social (PS) aspects of interpersonal communication; and the Socio-Communal (SC) health in terms of civic engagement. BPS health is conceived as distinct from QoL, defined as composed of control, autonomy, self-realisation and pleasure (measured by CASP-19) of the older person. We examined 1) interconnections of BPS constructs and related sub-constructs and 2) their associations with QoL to inform a practical, applied program theory. METHODS: A baseline survey (n = 321) of program participants (Mean = 70 years, SD = 8.73). All continuous variables were binarized as 'high' if the scores were above the median. Multivariate logistic regression was used to assess 1) the adjusted effect of each BPS construct on CASP-19, and 2) the odds of scoring high on one BPS construct with the odds of scoring high on a related sub-construct (e.g. B and BP health). RESULTS: The strongest relationship with QoL was markedly with BP self-perceptions of ageing (OR = 4.07, 95%CI = 2.21-7.49), followed by P life satisfaction (OR = 3.66, 95%CI = 2.04-6.57), PS interpersonal communication (OR = 2.42, 95%CI = 1.23-4.77), SC civic engagement (OR = 1.94, 95%CI = 1.05-3.57), and S social support (OR = 1.89, 95%CI = 1.06-3.38). Core B, P and S health were closely associated with their sub-constructs. CONCLUSION: ComSA CD is tightly coupled to its proposed program theory. It offers classes to improve B self-care and BP self-perceptions of ageing, group-based guided autobiography to improve P life-satisfaction and PS interpersonal communication, and community initiatives that encourage seniors to solve community issues. This holistic approach is likely to enhance ageing experiences and QoL.

Explaining the continuum of social participation among older adults in Singapore: from 'closed doors' to active ageing in multi-ethnic community settings.

OBJECTIVES: This study aims to identify and explain the continuum in which older people in Singapore participate in community and social life, highlighting the influence of culture and policy context on social participation. METHODS: Using an ethnographic approach in a neighbourhood (n=109), we conducted focus groups with older adults of different ethnicities, exploring experiences of social participation. Next, participants took 50 photographs relating to 'lives of elders', showcasing the socio-ecological context that influenced social participation. Lastly, go-along interviews were conducted in various precincts with community leaders. RESULTS: A continuum of social participation emerged among older adults, ranging from (1) marginalization and exclusion, to (2) 'comfort-zoning' alone (3) seeking consistent social interactions, (4) expansion of social network, and (5) giving back to society. Seeking consistent social interactions was shaped by a preference for cultural grouping and ethnic values, but also a desire for emotional safety. Attitudes about expanding one's social network depended on the psychosocial adjustment of the older person to the prospect of gossip and 'trouble' of managing social relations. Despite the societal desirability of an active ageing lifestyle, cultural scripts emphasizing family meant older adults organized participation in social and community life, around family responsibilities. Institutionalizing family reliance in Singapore's welfare approach penalized lower-income older adults with little family support from accessing subsidies, and left some living on the margins. DISCUSSION: To promote inclusiveness, ageing programs should address preferences for social participation, overcoming barriers at the individual, ethnic culture and policy level.