Dementia Knowledge and Attitudes of the General Public among the Bangladeshi Community in England: A Focus Group Study

Older people from ethnic minorities are underrepresented in dementia care. Some of the determinants of access to care are knowledge and perceptions of dementia, which may vary between ethnic groups in the population. The aims of this study were to compare knowledge and perceptions of dementia and Alzheimer's disease (AD) among four ethnic groups in Copenhagen, Denmark, and to assess the influence of education and acculturation. Quantitative survey data from 260 participants were analyzed: 100 native Danish, and 47 Polish, 51 Turkish, and 62 Pakistani immigrants. Knowledge and perceptions of dementia and AD were assessed with the Dementia Knowledge Questionnaire (DKQ) supplemented with two questions from the Alzheimer's Disease Awareness Test (ADAT). Knowledge and perceptions of dementia and AD in the four groups were compared, and the influence of education and acculturation was assessed. Group differences were found on the DKQ total score as well as all sub-domains. Turkish and Pakistani people were most likely to hold normalizing and stigmatizing views of AD. Level of education and acculturation had limited influence on dementia knowledge, accounting for 22% of the variance at most and had only minor influence on perceptions of AD. Lacking knowledge and certain perceptions of dementia and AD may hamper access to services in some ethnic minority groups. Ongoing efforts to raise awareness that dementia and AD are not part of normal aging, particularly among Turkish and Pakistani communities, should be a high priority for educational outreach.

Objective: To explore attitudes to quitting smoking and experience of smoking cessation among Bangladeshi and Pakistani ethnic minority communities. Design: Qualitative study using community participatory methods, purposeful sampling, interviews and...

Introduction: Perceptions of dementia are important determinants of support, treatment and care received in the dementia community. Understanding these perceptions are vital for regions such as Latin America, where there is a rapid increase in people living with dementia. The aim of this study is to review and synthesise the general public’s perceptions of dementia in Latin America, what factors are associated with these perceptions, and how they differ between countries in the region.Methods: Searches were completed across five databases (Medline, SCOPUS, PsychINFO, SciELO, and WoS). Studies were required to capture attitudes or knowledge of dementia in the general public residing within Latin America. English, Spanish and Portuguese search terms were used. Results were synthesised narratively.Results: About 1574 unique records were identified. Following lateral searches, de-duplication and screening, six articles (four studies) met the inclusion criteria for this review. All the studies were quantitative research from Brazil (median, n = 722). There was evidence of a limited to moderate knowledge of dementia, though a significant minority had negative or stigmatising attitudes. Only higher levels of education were consistently associated with better attitudes and knowledge of dementia in the region.Conclusion: There is a need for more in-depth research about attitudes of the general public across Latin America, particularly outside of São Paulo state, Brazil. There appears to be a greater need to raise awareness of dementia amongst less educated Latin American groups.

There is a general lack of awareness and understanding of dementia within ethnic minority groups in the United Kingdom. There is also a dearth of research involving ethnic minority caregivers about reducing barriers to accessing services and optimizing engagements with religiously tailored interventions. This paper reports findings from a qualitative study that examined the barriers to health care service use in the Bangladeshi community living in the United Kingdom. The research draws on findings from a doctoral level research study on understanding dementia among the Bangladeshi community in England. The data for the doctoral research were gathered in two ways: (a) focus group discussions and (b) semi-structured interviews. All data were audio-recorded and analysed using thematic analysis. NVivo software was used to aid transcribing, coding, and interpretation of emergent themes. The data showed that there were some barriers experienced by participants due to their religious and cultural beliefs and practices with other barriers related to the complexity of the UK health care system. Gender-based caregiving also appeared to interfere with religious ideologies while religiously appropriate health care services were deemed of great importance for successfully accessing those services. The findings provide an understanding of the experiences of the Bangladeshi community when seeking to access mainstream UK health care services and may help to provide useful directions for future research.

Objectives: Without information about how adolescents perceive dementia, and what their dementia related experiences are, it is hard to raise awareness of dementia and positive attitudes towards people with dementia in adolescents. Aim: To evaluate dementia-related knowledge with a focus on comparison between adolescents with and those without relatives with dementia and their perception and experiences of relatives with dementia to provide basic data for educating about knowledge of dementia and strengthening positive attitudes towards dementia. Methods: 1128 students (aged 14 -19) from non-health related secondary schools in Slovenia completed the dementia-related knowledge survey. In subsample of 335 students with relatives with dementia we explored their experiences of dementia in relatives. Results: Out of 20 questions and supplementary questions on dementia knowledge, participants were on average able to answer 71.5% correctly (M = 14.30; SD = 2.56). Respondents with relatives with dementia reported higher knowledge (M = 14.67; SD = 2.44, p<0.05), boys reported lower levels of knowledge than girls (p<0.05), and students of secondary technical and vocational school, and of general secondary schools (grammar-school) scored significantly higher on the knowledge questionnaire in comparison to students of lower vocational and secondary vocational schools (p<0.05). We also identified that in subsample of 335 adolescents with a relative with dementia a sadness and fear prewail in their attitudes towards dementia (e.g. 55% of all responses). Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age.

Qualitative Research in CKD: How to Appraise and Interpret the Evidence

We compare the Pakistani and Bangladeshi communities in Britain with other ethnic minorities to ask the questions ‘are Muslims different?’ and ‘is their behaviour changing over time?’. We look at the gender gap in education, age at marriage, marriage from the source country and female employment. In all these dimensions we find that Muslim communities are different but also that there is a convergence in behaviour. This is because those born in Britain generally differ markedly in behaviours from those born in the country of origin, but also because there is change within both the UK- and foreign-born communities.

Aim: The aim of this study was to explore the awareness and views of members of the ethnic minority community towards primary health care interpreting provision in two localities in Hertfordshire. Background: Ethnic minority groups often have to undertake many aspects of their day-to-day lives with limited English. The provision of high quality language interpretation services is vital for enabling access to public services, including healthcare. The use of accredited or professional interpreters has been minimal within primary care and undermines the principle of equity in the National Health Service. The local Primary Care Trust and ethnic minority forums initiated this study. Methods: The overall research design was qualitative and data collection was undertaken using focus groups. Twenty-four participants from the Pakistani (Punjabi and Urdu speakers), Bangladeshi (Bengali speakers) and Chinese (Cantonese and Mandarin speakers) communities took part in one of five focus groups. Ethnic minority members recruited participants, conducted the focus groups and translated the interviews after receiving in-depth training. Findings: Participants were unaware that healthcare professionals could access interpreting provision for their primary health care consultations, which were usually managed with the assistance of family members (including children) and friends. Both the appropriateness of using children and the potential compromising of confidentiality and privacy when using friends to interpret were concerns. Women discussed inventing illnesses rather than talking openly about embarrassing health issues in front of their children or husbands, which they suggested, may lead to depression or other mental health problems. Trust, accuracy, independence and confidentiality were important attributes participants expected in a professional interpreter whom they would prefer was from their own gender and culture.

To examine (1) the knowledge of dementia among Aboriginal and Torres Strait Islander community members and health-care workers providing care to Aboriginal and Torres Strait Islander people; (2) the factors associated with higher levels of knowledge about dementia. An online cross-sectional survey was conducted. Aboriginal and Torres Strait Islander community members were recruited through social media advertisements and an online market research platform. Health-care workers (general practitioners, nurses, Aboriginal health workers and allied health professionals) were recruited via emailed invitations from a peak body and a community service organisation. Participants answered an online survey containing 34 true/false items examining knowledge of dementia. Separate linear regressions were used to examine the factors associated with higher levels of knowledge about dementia among community members and health-care workers. Two hundred and twenty individuals (74 community members and 146 health-care workers) participated. The overall mean knowledge of dementia score for all participants was 26.80 (SD = 4.43). Health-care workers had higher knowledge (M = 27.23, SD = 4.66) than community members (M = 25.96, SD = 3.82, p = .04). Community members with higher levels of education answered 6% (95% CI 1%-11%) more items correctly than participants with lower levels of education. General practitioners and nurses had significantly higher knowledge of dementia; however, health-care workers who provided care to a family member or friend living with dementia had significantly lower knowledge of dementia. Novel approaches are needed to increase knowledge of dementia amongst both Aboriginal and Torres Strait Islander community members and health-care workers who provide care to ensure culturally sensitive and effective support.

Alzheimer’s disease and related dementias have not been given much attention in sub-Saharan Africa. Although the prevalence of dementia in Ghana is not yet established, those who present cognitive impairment are often stigmatized, discriminated against, or physically harmed by community members. The mistreatment may be due to a lack of dementia knowledge and awareness in Ghana. Recognizing the critical need to increase dementia knowledge and awareness in Ghana, Alzheimer’s Ghana (Ghana), AlterDementia (US), and researchers from the University of Georgia and Emory University (US) partnered to develop and implement a culturally adapted and relevant dementia education intervention. Through a series of collaborative sessions, both organizations and researchers co-created educational materials and intervention strategies addressing dementia awareness and knowledge. Education sessions consisted of a dementia overview, brain health overview, community testimonies, local resources, question and answer session, and closing remarks. Community-based participatory research principles were used to engage public officials, faith-based organizations, television personalities, healthcare professionals, secondary school educators, and researchers in Ghana to facilitate nine dementia education sessions, spanning 15-90 minutes, to over 800 participants across four regions of Ghana. Surveys and field notes were used to collect demographic and dementia knowledge and awareness data. Preliminary findings suggest promising avenues for improving dementia knowledge and reducing stigma. This work underscores the value of community-university partnerships to culturally adapt evidence-based interventions to advance ongoing community initiatives addressing dementia.

Adults hold negative attitudes toward sexual expression in late life. We investigated knowledge and attitudes about older adult sexuality and dementia among staff in nursing homes (NHs). We acquired staff demographics, knowledge of dementia and sexuality, and attitudes of sexuality. Staff participated in focus groups and received continuing education credit. The three NHs had an average census of 178 beds. Participants' (N=100) mean age was 38.53. The most common type of sexual contact reported was nondemented male with nondemented female (67.5%), followed by demented male with demented female (53.6%). Participants endorsed neutral attitudes about late-life sexuality. Focus groups revealed a need for more training and effective interventions to balance resident safety and autonomy. Staffs' knowledge of sexuality and dementia, desire for guidance in "managing" sexual expression, and neutral attitudes toward late-life sexuality supports the need for educational interventions on sexuality and dementia in NH.

UNDERSTANDING DEMENTIA AMONG THE BANGLADESHI COMMUNITY IN ENGLAND

Caring for people with dementia requires specialized competencies. Previous education programs had a positive effect on college students’ dementia knowledge, communication skills, empathy for and attitudes towards people with dementia. To prepare high school students to care for people with dementia – whether it be in a professional or personal capacity - a six session online Dementia Bootcamp was created. Topics included dementia overview, prevention, symptoms, and a framework for understanding them, communication, family support, and evaluation. Information was delivered via short didactic instruction, presentations by people with dementia, and experiential activities such as a virtual dementia simulation. Students met with a mentor, a person with dementia, or volunteered at a dementia day program. Parental consent and student assent were obtained for six students who participated in a focus group. The focus group was audio recorded and an interview schedule was used to understand what students learned, their response to online delivery, and recommendations for future offerings. Data was transcribed and verified, coded for categories and themes developed. Increased dementia awareness and knowledge, confidence in the ability to communicate with someone with dementia, how to prevent dementia, improved cognitive empathy and empathic imagination, and reduced stigma were reported. Online delivery was well received; students recommended longer sessions, more engagement with content and each other, and more information about how dementia affects the brain. The program has been integrated into a high-school health sciences curriculum.

The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members’ understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders’/service providers’ views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have “alternative” knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community.

We investigated the relationship between community motivations to control AIDS-related prejudice and the experience of stigma by community members with HIV or AIDS, using self-reports from 203 New England residents with HIV or AIDS and 2,444 randomly selected residents of the same New England communities. Multilevel regression analyses revealed that the disclosure concerns of participants with HIV or AIDS were lower in communities where residents were motivated by personal values to control AIDS-related prejudice, and were higher in communities where residents were motivated by social pressure to control AIDS-related prejudice. Reported experiences with discrimination and exclusion were unrelated to community motivations. The results of our study suggest that external and internal pressures to control prejudice shape the experience of stigmatization.