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Background: Dementia stigma has adverse effects on people with dementia and their carers. These effects can lead to poor quality of life among other negative impacts., Objective: The aim of this study is to develop and pilot a novel dementia stigma reduction intervention in rural Kenya, leveraging existing Community Health Workers (CHWs) for its delivery., Methods: The pre-post pilot study was conducted, utilizing a parallel mixed-methods design. Ten CHWs were trained to deliver a contextually developed dementia anti-stigma intervention. These CHWs delivered four workshops to 59 members of the general public in Makueni County, with each workshop lasting between 1.5 to 2 hours. Focus group discussions and pre/post surveys were used as measures., Results: The intervention was well received amongst the participants, particularly in terms of its format and accessibility. We observed the largest effects in reducing negative beliefs related to treatment (η2 = 0.34), living well with dementia (η2 = 0.98), and care (η2 = 0.56) for the general public post intervention. Improvements to attitudes were also observed in the CHWs, but the effect sizes were typically smaller., Conclusions: The intervention was accessible and feasible in rural Kenya, while also showing preliminary benefits to stigma related outcomes. The findings indicate that culturally sensitive interventions can be delivered in a pragmatic and context specific manner, thus filling an important knowledge gap in addressing stigma in low-resource settings. Future research is needed to ascertain the intervention's long-term benefits and whether it tackles important behavioral outcomes and beliefs deeply ingrained within communities.

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.

Background and Objectives: The prevalence of dementia will increase in low- and middle-income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear., Research Design and Methods: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analyzed thematically., Results: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Help-seeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations., Discussion and Implications: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Reducing stigma is a key benefit to intergenerational programs. However, little is known about the availability and suitability of measures that capture dementia-related attitudes in adolescents, thus limiting interpretations of the efficacy of such programs. The aim of this scoping review was to provide an overview of outcome measures used to capture dementia-related attitudes in adolescents. Scoping review methodology was used to systematically identify relevant articles. Key search terms included dementia, attitudes, and adolescents. Fourteen studies met the inclusion criteria, of which 13 unique measures were identified. However, there are gaps in psychometric properties and a lack of underlying theoretical frameworks. [ABSTRACT FROM AUTHOR]

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]

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]

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]

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Background: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample.Methods: 301 adolescents (M = 12.6 years old, SD = 0.73) were assigned to either receive Dementia Friends (a 60-min interactive class that teaches about dementia and its effects on people's lives) or education as usual. All participants completed a series of validated questionnaires pre- and post-intervention, related to dementia attitudes (Brief A-ADS and KIDS).Results: Adolescents in the dementia awareness group showed little to no improvements between time-points. The change scores in the dementia awareness group did not significantly differ to the control group based on both KIDS (d = - 0.003, p = 0.98) and Brief A-ADS (d = 0.14, p = 0.13) measures. There was no Group x Time effect after controlling for confounding variables.Conclusions: Dementia Friends is successful in terms of reach and impact, though this study suggests that it may fall short of achieving its goal of improving attitudes towards dementia. Importantly, Dementia Friends did not have a negative effect on attitudes, and the majority of adolescents enjoyed the sessions. It is important that these findings are replicated in a larger randomised-controlled study. [ABSTRACT FROM AUTHOR]

Local dementia education initiatives exist in schools but it is unclear what the wider uptake of such programmes are. A self-created survey was sent to staff in a number of secondary schools (teaching ages 11–16) across Sussex, England. Sixty schools responded to the survey (response rate = 58%). While the majority of schools expressed an interest in including some form of dementia education within their school in the future, only nine schools (15%) currently had dementia education embedded within their curriculum. Despite government calls to reduce stigma and improve attitudes towards dementia, it seems very little is being taught in secondary schools on the topic. [ABSTRACT FROM AUTHOR]