Tal Araten-Bergman

As the population of people ageing with intellectual disabilities grew in the 1980s, the Hong Kong government supported research exploring their needs and recommended a range of initiatives, including the promotion of community inclusion. This study aimed to identify how the government has understood and responded to the ‘problem’ of people ageing with intellectual disabilities since that time. A total of 53 documents published by the Hong Kong government between 2004 and 2024 related to ageing with intellectual disabilities, including reports, funding agreements, financial budgets, and policy recommendations, were identified. They were thematically analysed to identify how ageing with intellectual disabilities was represented as a problem and how the government responded to the problem. The findings show that people ageing with intellectual disabilities are portrayed as declining physically and ageing prematurely, their needs as no longer being met by vocational adult services, and their families as having limited capacity to meet their increasing care needs. With a few exceptions, government policies have not pursued specialist programs targeting ageing people or their families. Rather, policies have enhanced the capacity of general services for adults with intellectual disabilities to address health care needs, the capacity of parental caregivers through education and allowances, and have alleviated parental anxiety about future care through the establishment of Special Needs Trust. While recognising the changing needs of the growing number of people ageing with intellectual disabilities, the Hong Kong government has nonetheless continued the policy trajectory established in the 1980s that emphasises lifelong care and protection of people with intellectual disabilities rather than promoting community inclusion and independent living.

Culturally and linguistically diverse (CALD) communities often encounter persistent barriers to participation in healthcare initiatives, particularly in the context of dementia care. In response, researchers have increasingly used co‐design methods to more effectively involve CALD participants in developing dementia support resources. This meta‐synthesis examines how researchers have engaged people from CALD communities in co‐design, focusing on the approaches used to support equitable and meaningful participation. Twelve studies were identified and analysed using an established six‐step meta‐synthesis approach. Research teams in the reviewed studies employed a range of strategies to engage CALD participants in co‐designing dementia support. These included building trust and enhancing engagement through partnerships with community leaders and ethnic organisations; improving communication via translation, interpretation and bilingual staff; and supporting inclusive, informed participation through flexible participation options and culturally tailored dementia content. The approaches also contributed to reducing barriers to inclusion. However, key gaps remain in the reviewed literature—most notably, no studies reported providing cultural safety training for researchers, and participants with advanced dementia or verbal communication difficulties were largely underrepresented. The findings highlight a need to strengthen inclusive practices in future co‐design, including equipping research personnel with cultural safety knowledge and skills, and using non‐verbal and visual methods to advance sustainable, culturally responsive dementia care for CALD populations.

Non-pharmacological interventions are increasingly recommended for people with dementia, to delay the progression of their symptoms and maximise their independence. Evaluation is required of how interventions are experienced by people with young onset dementia and if they are meeting their distinct additional needs. This review aimed to examine the empirical evidence on non-pharmacological intervention experiences and expressed needs of this population. We followed the Joanna Briggs Institute (JBI) methodology and the PRISMA-Extension for Scoping Reviews checklist of reporting items. Five databases were searched for experiences with non-pharmacological physical, functional, cognitive, psychological, or social interventions by people with young onset dementia between 2013-2024. Twenty-three articles were reviewed. Intervention experiences were disparate and delivered across fragmented services. Experiences with specific interventions were not well described although age appropriate, individually tailored services with navigation support were requested. Psychosocial interventions were particularly lacking and did not address the social relationships and activities that had been lost post-diagnosis but remained significant to people with young onset dementia. Further research is needed to examine how psychosocial interventions are experienced and how delivery can be structured to cohesively meet the psychosocial intervention gaps and expressed needs of people with young onset dementia.

BackgroundActive Support is a person-centred practice that enables people with intellectual disabilities (IDs) to engage in meaningful activities and social interactions. The Active Support Measure (ASM) is an observational tool designed to measure the quality of support that people with IDs living in supported accommodation services receive from staff. The aim of the study was to explore the underlying constructs of the ASM.MethodsMultilevel exploratory factor analysis was conducted on ASM data (n = 884 people with IDs across 236 accommodation services) collected during a longitudinal study of Active Support in Australian accommodation services.ResultsMultilevel exploratory factor analysis indicated that 12 of the ASM's 15 items loaded on two factors, named Supporting Engagement in Activities and Interacting with the Person.ConclusionsThe 12-item ASM measures two dimensions of the quality of staff support. Both technical and interpersonal skills comprise good Active Support.

This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing.

Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022. Findings, based on 14 identified articles show that sibling relationships are considered in the context of parent-child relationships. Little attention is given to the nature of sibling relationships per se. Rather, research in Chinese societies generally frames sibling relationships as one-way caregiving, and where siblings' caregiving responsibilities are inherited from parents, increase as parents age and are organised according to gender and birth order. These findings contrast to Western studies where increasingly perspectives of adults with intellectual disabilities are sought and the reciprocal nature of sibling relationships is highlighted. Future research in Chinese societies may benefit from exploring aspects of relationships beyond caregiving.

Person-centred planning is often seen as a panacea, but without the addition of thoughtful processes and person-centred actions, it too often becomes a meaningless paper exercise. Planning has many purposes: from determining funding and setting broad life goals to creating detailed blueprints for the delivery of a specific type of support. Whatever its purpose, planning with people with disabilities requires collaboration, time, skilled facilitation and knowledge about the person and their support networks. This chapter discusses the nature of support planning, outlines its core principles and processes and considers these in the context of service systems and disability support organisations.

Background: Social media use continues to grow, and it offers an important way for adults with intellectual disabilities to feel socially included and to communicate with others.Aim: This study aimed to establish the state of knowledge about social media use among adults with intellectual disabilities, their experiences and its impact.Method: A scoping review was conducted of peer‐reviewed literature published between 2000 and 2021 that reported empirical research on social media use, experiences, training and outcomes for adults with intellectual disabilities.Findings: Adults with intellectual disabilities use social media platforms and experience a range of positive outcomes including feeling more included and valued. Some of the negative impacts included bullying and exploitation. The high cost of technology and some elements of design sometimes make social media inaccessible.Conclusions: The studies included provided evidence about the experience of using social media from adults with intellectual disabilities and some perspectives of family members and paid supporters. Future research is needed to examine effective approaches to overcoming barriers to access and ways to manage some of the negative impacts of engagement in order to inform policy and practice.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.