Growing older with intellectual disability: insights, perspectives and future research directions from a stakeholder event

Purpose Ageing with intellectual disability is an increasingly recognised area of need. The purpose of this paper is to report on the perspectives of people with intellectual disability, families and practitioners regarding the challenges and priorities for ageing well and identify implications for future practice and research. Design/methodology/approach A co-produced stakeholder event was held in the Northwest of England with people with lived experience, family carers, practitioners and service providers. Engagement activities included small group discussions, a wishing well activity, flipchart exercises and creative artefacts. Data were captured through facilitator notes, written contributions and questionnaires, then anonymised, digitised and thematically analysed. Findings Four main themes were identified: mental health and service access; social inclusion and community support; respite and carer well-being; and dementia. Stakeholders highlighted gaps in tools to recognise early signs of dementia, track changes and provide evidence to clinicians, leading to delays in diagnosis and support. Participants also described the impact of anxiety on daily life, fragmented and costly community services and the strain families face because of outdated or crisis-driven respite provision. Research limitations/implications The findings of this study reflect perspectives from one region of England and cannot be generalised to all populations, though the themes align with wider literature and suggest broader relevance. Practical implications Priorities include co-produced dementia monitoring tools, embedding person-centred mental health planning, addressing geographical disparities and expanding proactive respite provision. Originality/value To the best of authors’ knowledge, this is one of the first co-produced UK studies to explore ageing with intellectual disability through direct stakeholder engagement. This study foregrounds lived experience voices and identifies dementia, mental health and carer well-being as critical areas for future policy and practice.