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Stigma and discrimination in relation to dementia has a range of implications for people living with dementia and their families worldwide, including help-seeking, quality of life, social rejection and isolation. Few studies consider the perceptions and stigma towards dementia from multiple perspectives, such as people living with dementia, carers, general public and health-care workers. South Africa has limited evidence on the stigmatisation of people living with dementia, with responses to people living with dementia being driven by poor understanding of the condition, cultural beliefs about causes and social interaction problems associated with memory and cognitive impairment. This study explored the experiences of stigma among people living with dementia and their carers through understanding their own knowledge, attitudes and beliefs as well as those of the public and health-care workers. Qualitative data (N = 52) were collected across two provinces and in four languages (English, Afrikaans, Sesotho and isiZulu), with semi-structured interviews and focus groups with the following stakeholder groups: people living with dementia and their carers, the general public and health-care workers. Inductive thematic analysis generated themes across stakeholder groups. The study shows that people living with dementia and carers experienced high levels of internalised stigma, related to negative public attitudes, which were associated with high levels of isolation, health system unpreparedness and limited access to support. The study contributes to the evidence base needed in South Africa but also extends its relevance by contributing to a growing global evidence base on stigma and dementia in low- and middle-income contexts. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Tackling dementia stigma is a policy priority. In Indonesia, we have little insight into the general public's knowledge and attitudes about dementia. METHODS: Cross‐sectional study of 4430 Indonesian adults recruited from Jakarta and North Sumatra, Indonesia. Measures included dementia knowledge and attitudes. RESULTS: A total of 86.3% (n = 3,803) of adults had not heard of the terms dementia or Alzheimer's disease, and commonly viewed dementia as a normal part of aging. Being older, incorrect knowledge about etiology, not having heard of the terms dementia and/or Alzheimer's disease, having less than primary education, and being from North Sumatra were associated with more negative attitudes (p‐values < 0.05). DISCUSSION: Misconceptions and lack of awareness about dementia are common in Indonesia. Attitudes tended not to be negative, but our research highlights factors associated with dementia attitudes. Future research should use this information to better tailor and target potential anti‐stigma strategies. Highlights: Most Indonesians had not heard of the terms dementia and/or Alzheimer's disease and thought it was caused by normal aging.The majority of participants held mixed or positive attitudes towards dementia.A series of demographic factors alongside poor awareness were associated with negative attitudes towards dementia. [ABSTRACT FROM AUTHOR]

Background: Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context. Aims: This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia. Materials and Methods: This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts. Results: Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis. Discussion: A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising. Conclusion: In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience. [ABSTRACT FROM AUTHOR]

This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding 'obedience' and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil. [ABSTRACT FROM AUTHOR]

India is the world's second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia (n = 8), caregivers (n = 19), health care professionals (n = 16) and the general public (n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia. [ABSTRACT FROM AUTHOR]

The A-ADS is one the first validated measures of attitudes of dementia in adolescents, though further validation is needed. 630 adolescents were recruited from secondary schools in England. A Principal Component Analysis was completed (n = 230) followed by a Confirmatory Factor Analysis (n = 400). Reducing the A-ADS into a single factor, 13-item measure (Brief A-ADS) improved the model fit of the measure (χ2 = 182.75, DF = 65, CMIN/DF = 2.81, p < 0.001, CFI = 0.90, RMSEA = 0.07). The scale demonstrated good internal consistency, good predictive and concurrent validity. Building on the validation of the A-ADS, the Brief A-ADS is suitable to capture attitudes towards dementia amongst adolescents. [ABSTRACT FROM AUTHOR]

Objectives: We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya. Methods: A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data. Findings: Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse. Conclusions: We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally. [ABSTRACT FROM AUTHOR]

Objectives: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: (a) to determine whether culture and religion play a role in caregiving; (b) to draw insights on how family caregivers cope, what barriers they face and what help they would be willing to accept and (c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. Methods: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35–80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. Results: Five themes emerged: knowledge and awareness; stigma; importance of religion and duty to care; use of day care centres and home-help; and barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatised, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. Discussion: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services and an emphasis on home-based care. [ABSTRACT FROM AUTHOR]

Pakistan is a lower middle-income country, which to date has had very little research and policy making to address the challenge of dementia. This study aims to explore the perceptions of dementia in a group of Pakistani adults. A series of focus group discussions were completed during 2017 with men and women in two metropolitan centres in Pakistan (Lahore and Karachi) (N = 40). Two vignettes, depicting someone with mild dementia and someone with severe dementia, were used to facilitate discussions. An induction-led thematic analysis was completed. Five themes were identified, reflecting (a) dementia awareness, (b) responsibility, (c) barriers to health care, (d) identified support needs, and (e) religion. Most participants had little awareness and knowledge about dementia, commonly understood to be a disease of forgetting or just normal ageing. Thus, there is an urgent need of a nation-wide campaign to raise dementia awareness in Pakistan, though this needs to be accompanied by improved, accessible health and social care services. [ABSTRACT FROM AUTHOR]

The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives is imperative in order to sustain dementia friendly communities. With this in mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities. [ABSTRACT FROM AUTHOR]

Dementia-related stigma is a key barrier to people living well with dementia, leading to social isolation and poor well-being. Adolescents represent an under-researched group that will become future carers and healthcare workers for the estimated 83.2 million people who will be living with dementia by 2030. Understanding the factors involved in dementia attitude formation in adolescents is useful for the development of evidence-based anti-stigma initiatives. This study aims to identify predictors of dementia attitudes in adolescents. This is a cross-sectional study using secondary data analysis. 470 participants aged 12–15 years old from secondary schools in the Southeast of England, United Kingdom completed validated questionnaires relating to dementia attitudes (KIDS and Brief A-ADS) as well as demographic information. Multiple regressions were employed as well as a path analysis via a structural equation model to test for direct and mediatory effects. Multiple regression models revealed that being female, having higher levels of contact with dementia, and higher levels of empathy are positively associated with dementia attitudes in adolescents (p<0.05). Within the accepted structural equation model, empathy was a key mediator between contact and dementia attitudes. This study highlights the pivotal role that contact with dementia can have in influencing dementia attitudes in adolescents with empathy serving as a mediator between contact and dementia attitudes. Interventions that use contact should consider how to stimulate empathetic responses to ultimately shape dementia attitudes. [ABSTRACT FROM AUTHOR]