Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.

INTRODUCTION: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis. METHODS: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion. RESULTS: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities. CONCLUSION: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society. PATIENT OR PUBLIC CONTRIBUTION: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.

Are dementia services and support organisations meeting the needs of Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers of LGBT people living with dementia? A scoping review of the literature.

OBJECTIVES: More than 60% of people with dementia live at home, where assistance is usually provided by informal caregivers. Research on the experiences of the Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers is limited. This scoping review of the literature synthesizes international evidence on support provision for the population of LGBT caregivers. METHODS: Eight electronic databases and Google Scholar were searched using terms including 'Dementia', 'LGBT' and 'Caregiver' for all types of articles, including empirical studies, grey literature and sources from charity/third sector/lobbying organisations. Article selection was performed by two raters. Data were analysed through deductive thematic analysis, and three themes were established a priori: Distinct experiences of LGBT caregivers; current barriers to support; strategies to overcome the current challenges. RESULTS: Twenty articles were included. Distinct experiences of LGBT caregivers included a loss of LGBT identity, the impact of historical events, families of choice, and disclosing LGBT identities. Current barriers to support included poor representation of LGBT caregivers in support services, negative attitudes of staff and reluctance of caregivers to seek support. Strategies to overcome the current challenges included staff awareness training and kite-marking inclusion. CONCLUSION: Limited cultural competency of staff and a subsequent reluctance to seek help have an impact on use of support services among LGBT caregivers. Implications for practice include the development of cost-effective, feasible, and acceptable inclusiveness training for services. Implications for policy include implementation in organisations of top-down agendas supporting staff to understand sexuality and non-heteronormative relationships in older age.

The prevalence of psychiatric disorders among Vietnamese children and adolescents.

OBJECTIVE: To determine the prevalence of psychiatric disorders among Vietnamese children and adolescents living in Perth, Western Australia. DESIGN, PARTICIPANTS AND SETTING: A list of Vietnamese households was drawn from Perth telephone directories. A computer program generated a systematic probability sample of households. All children and adolescents aged 9-17 in these households were invited to participate in the study. Children and their parents were interviewed in their home using the Diagnostic Interview Schedule for Children, version 2.3 (DISC-2.3). The child version (DISC-C) was used for children and the parent version (DISC-P) for adults. The study was conducted between July and December 1997. MAIN OUTCOME MEASURES: The prevalence of psychiatric disorders in children and adolescents, based on DISC-C and DISC-P data. RESULTS: Results were based on the 519 children (89.2%) for whom complete data were available. Twenty-three parents (4.4%) reported that their child had one or more disorders on the DISC-P, 82 children (15.8%) reported one or more disorders on the DISC-C, and 18.3% of children were reported to have a disorder on either the DISC-C or the DISC-P. Parent-child concordance on specific diagnoses was very low (0.6%). The great majority of disorders reported were anxiety disorders, especially simple and social phobias. CONCLUSIONS: The combined prevalence of psychiatric disorders among Vietnamese children aged 9-17 was similar to that found among children in Western Australia's general population. Vietnamese children in our study were much more likely to report symptoms of a psychiatric disorder than were their parents.