To mark Carers Week 2026 , Barbara Campbell, National Embedding Lead for Northern Ireland, shares insights from carers involved in one of IMPACT’s Demonstrator projects in Northern Ireland, exploring their experiences, and outlining why future planning matters for families.
As we mark Carers Week 2026, it is important to recognise the extraordinary contribution made by family carers who support adults with a learning disability every day. We have been learning about carers’ experiences in our Demonstrator project in Northern Ireland. In partnership with the SPPG (Department of Health), Trusts and voluntary and community services, we have been exploring how best to support carers and families to begin these conversations and create a future plan.
Many carers have spent decades advocating, caring, coordinating services, providing emotional support, and ensuring their loved one can live a good life. Yet, one of the most difficult challenges many families face is thinking about the future:
“What happens when I am no longer able to provide the same level of support?”
“Who will understand my son, daughter, brother or sister as well as I do?”
“How can I be confident they will continue to live a good life?”
These are not simply questions. They are deeply emotional concerns rooted in love, responsibility, and uncertainty for the future.
Using evidence to inform improvement
A key principle of IMPACT’s approach is that improvement is strongest when different forms of evidence are brought together.
Throughout our work in Northern Ireland we have drawn upon:
• Published research
• Lived experience
• Practice knowledge
The research highlights a consistent message. Families often delay future planning conversations because they feel overwhelmed, emotionally fatigued, or because day-to-day caring demands leave little time to think ahead.
However, the evidence also suggests that early planning can reduce anxiety, strengthen resilience, and increase opportunities for adults with learning disabilities to exercise choice and control over their future.
However, research alone is never enough. We therefore combined this evidence with the voices of carers and practitioners to better understand the local context and identify what families need.
What carers told us
Through workshops and engagement events with carers, siblings, and family members, several themes emerged consistently. Central to these was the importance of having a trusting relationship to navigate their journey, alongside access to clear and reliable information.
Many carers spoke about feeling alone with these responsibilities. Some described carrying future planning concerns for years but not knowing who to talk to or how to begin.
Others told us they were worried about leaving things too late but felt overwhelmed by the complexity of available information. One of the strongest messages from the workshops was that families wanted future planning to be viewed as a journey rather than a single event. They wanted opportunities for conversation, reflection, and support over time.
Moving from crisis planning to life planning
An important learning from both the evidence and carers’ experiences was that future planning should not be viewed solely as preparing for a crisis. Instead, it should be seen as part of supporting adults with learning disabilities to live good lives, build relationships, develop independence where possible, and strengthen the networks around them.
Future planning is about creating confidence that wishes, relationships, routines, supports, and aspirations can continue into the future. Ultimately, it is helps families move from uncertainty toward greater preparedness.
Looking ahead
As this work continues, we are developing practical resources with carers, not for carers. The aim is to create materials that are grounded in evidence, informed by lived experience and useful in real life.
This year’s Carers Week provides an opportunity not only to celebrate the contribution of family carers, but also to listen carefully to what they are telling us.
The message is clear:
Families want support to start conversations earlier. They want information that is practical and accessible. They want systems that work alongside them.
Most importantly, they want reassurance that the people they love will continue to be supported to live meaningful, connected and fulfilling lives long into the future.
That is why future planning matters.
If you would like further information about this project or would like to get involved, please contact Barbara Campbell.