The UK-Irish Consortium for ageing well with a lifelong disability: Priorities, perspectives and opportunities

As life expectancy across the world continues to rise, ensuring that older adults live long and healthy lives is a global priority. Both the UK and Ireland have committed to achieving this objective by funding research that helps people maintain wellbeing, independence and health as they age. However, to ensure that all older adults live long and healthy lives, we need to identify and address inequalities where some populations may not have the same opportunities to age well. One such population who experience social and health inequalities are people living with lifelong disabilities.
Lifelong disabilities have their onset in childhood and include cerebral palsy, intellectual disability, autism spectrum disorder, visual impairment and hearing impairment. People with lifelong disabilities are living longer than even before, and represent an important but often forgotten ageing population. They have been under-represented in research and policies on healthy ageing. Most research and policy on healthy ageing emphasises that we need to avoid ageing into disability, whereas there is significantly less research about ageing well with a disability.
There is a need to develop research that will help address and reduce the inequalities faced by people living with lifelong disabilities in order to help them age well. This networking grant will allow us to bring together researchers, clinicians and key stakeholders to develop this research. To engage researchers, clinicians and stakeholders we will undertake a series of networking and development activities: a public engagement project, two research retreats, and a scoping review. These participants will be invited to join the UK-Irish consortium for ageing well with a lifelong disability to mobilise expertise and drive research forward.

The public engagement project will involve asking people with a lifelong disability to submit a piece of media to display on an online gallery about what ageing well means to them. We will also ask people with a lifelong disability and other stakeholders to tell us their research priorities for ageing well. The top research priorities identified will be discussed and developed at two research retreats to be held in Ireland and the UK. The retreats will involve researchers, clinicians and stakeholders coming together to discuss and develop the ideas for future research projects and identify opportunities for research funding.
The grant applicants will also review the current evidence-base to map current research on ageing well with a lifelong disability. As part of this review they will also summarise existing published research priorities to understand the broader landscape of research priorities for people ageing with a lifelong disability. By doing this they will be able to identify what research people with a lifelong disability want prioritised, and what research has actually been done.
The outcomes of these networking and development activities will be shared through a publicly accessible consortium website, public lectures delivered by the principal investigators and a published scoping review. We will consolidate all findings into a summary report that will lay out the ideas for future research that were developed through this networking grant.
The activities and outcomes will help develop research in the following meaningful ways:
1.) By working with people with a lifelong disability we can identify and develop their research priorities, and by reviewing and consolidating previous research we can understand where further research is needed (priorities).
2.) By bringing together researchers, clinicians and key stakeholders we will gain insights from a range of experts about how, and where, to develop research (perspectives).
3.) By developing the UK-Irish consortium for ageing well with a lifelong disability we will have the expertise needed to drive this research forward (opportunities).