Receiving a dementia diagnosis is a complex experience that can provide clarity about symptoms but often creates uncertainty. Support during and after diagnosis is essential to help individuals navigate living with dementia. This qualitative descriptive study examined experiences during and after diagnosis among people with dementia and care partners in New Brunswick, Ontario, and Quebec.

Interviews with 5 people with dementia and 15 care partners were conducted and then analysed using qualitative content analysis to identify barriers, facilitators, and contextual influences related to a positive experience.

Barriers included limited resources, poorly coordinated care, disorganized diagnostic pathways, and stigma. Facilitators included access to information, person-centred care, support networks, recognition of personhood, and structured care navigation. The COVID-19 pandemic further shaped experiences.

Findings highlight the importance of compassionate care, accessible information, and coordinated services while underscoring systemic gaps, stigma, and the impact of the pandemic.

The Forward with Dementia (FWD) project is a dementia awareness campaign that was implemented across five countries. The campaign included components such as websites (in four languages – www.forwardwithdementia.org), webinars, newsletters, and social media posts. This campaign is the fourth phase of a three-year longitudinal mixed methods study with five phases in five countries: Canada (New Brunswick, Ontario, Quebec), Australia, the Netherlands, United Kingdom, and Poland. The purpose of this study is to evaluate the implementation and perceived impact of the FWD websites and campaign in the five participating countries.

The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance) was used to guide the campaign evaluation. The evaluation was drawn from Google Analytics, surveys, individual interviews, and report cards. Data collection occurred between September 2021 and May 2022.

There were approximately 124,945 page views across all FWD websites during the campaign. Participants of the surveys and interviews reported engaging in a range of campaign activities. They read information about receiving a diagnosis, stories from persons with lived experience in dementia, news, and attended webinars (or watched recording). Most participants rated the information that they read on the website moderately, very, or extremely helpful. In addition, the majority of respondents said that they plan to visit the website again. During the interviews, participants shared that the website was easy to navigate, practical, and that it maintains a positive tone related to dementia. The co-design aspect of the campaign was considered a strength.

The findings indicate that the FWD campaign can provide support for people who have recently received a dementia diagnosis and their family or friends. In addition, the campaign may provide health and social care providers with a new source of information and tools to use and share with their clients. These results informed the development of a playbook to guide regions and countries beyond those involved in this project to implement similar initiatives.

The diagnostic interview for social and communication disorders (DISCO – 11; Wing 2006), is a semi-structured, interview-based instrument used in the diagnosis of children with autism spectrum disorder (ASD). This paper explores the psychometric properties of the DISCO-11 used in a specialist Paediatric clinical setting. Two key research questions were examined; (1) Does the factor structure of the DISCO-11 reflect the diagnostic and statistical manual 5th edition (DSM-5, American Psychiatric Association [APA], 2013) dyad of impairment in ASD? (2) Is there evidence of diagnostic stability over time using the DISCO?

Review assessments of 65 children with ASD were carried out using standardised measures including the DISCO-11 and the autism diagnostic observation schedule.

The results revealed two factors resembling the DSM-5 algorithms, as used in DISCO-11, which were named as social-communication, and restricted and repetitive behaviours. The reliability, for the overall DISCO score was good (Cronbach’s alpha = 0.78). The social communication and social interaction subscale showed good reliability (Cronbach’s Alpha = 0.77) as did the restricted and repetitive patterns of behaviour, interests or activities subscale (Cronbach’s Alpha = 0.74). Acceptable internal reliability was found for the overall DISCO score and the subscales of social communication and social interaction and the restricted and repetitive patterns of behaviour, interests or activities. Test–retest showed good stability of diagnosis over time.

This study supports that the DISCO-11 shows potential as a valid and reliable instrument that can be used both for clinical and research purposes.