Commissioner’s Blog: More must be done to ensure the voices of unpaid carers are heard

This week I visited the Widdershins Centre in Pontypool to hear from older people about the action I should take to deliver positive change.

Widdershins is a community hub run by Age Connects Torfaen, which provides a wide range of activities, services and support to older people. This includes daily activities that enable carers to have a break, as well as a dementia-friendly sports group who have participated in golf, tennis, gym and fitness bootcamp activities.

The on-site Bistro also hosts a warm hub space every Monday and Friday, offering a free hot meal and drink, as well as a place that older people can get together, socialise and pick up local information.

In addition, the team at the Centre have worked with Cardiff Metropolitan University to develop the Memory Connects App, co-designed and produced with individuals living with dementia and their carers/families, which as a semi-finalist in the Longitude prize for dementia.

More widely, Age Connects provides the hospital discharge service across the Aneurin Bevan Health Board area and the Carers’ Hub at the Grange Hospital.

A huge amount going on, I’m sure you’ll agree!

One conversation that stuck with me in particular was with an unpaid carer (providing support to her husband who is living with dementia) who shared her frustration at not feeling heard or valued in her role.

She told me that when her husband received his diagnosis, she did not receive any information and was not offered any support.

She also said that she found out about the activities for people living with dementia at the centre by chance, happening to see a poster at another local venue.

Her experience highlights a much wider issue: the absence of accessible, timely information for carers at crucial moments. She highlighted that her own resources and resourcefulness had meant that the was able to find information and support, but was concerned that others may not have the same opportunities to do this and the impact they would have.

What struck me most was when she told me I was the first person – outside of those at the centre – who had ever asked her about her experiences as a carer and what that meant for her life.

This is simply not good enough. Carers play a vital role in supporting those with dementia, yet too often they feel invisible, undervalued, and unheard. Their voices must be central in shaping the services designed to support them.

As the Dementia Action Plan for Wales is being revised, there is a critical opportunity to ensure that the experiences and insights of people living with dementia and their carers directly inform its development through genuine co-production, as expected by our legislation. We must listen, learn, and take action to make sure that no one is left without the support they need.

Places like Widdershins are invaluable, and it is crucial that unpaid carers know about the kinds of community-based support that is available, support that can make all the difference to the experiences of unpaid carers and protect their health and well-being.

More must be done to ensure that information and support are provided proactively when a dementia diagnosis is given. This is not just about improving access to services, it is about recognising the immense contributions of unpaid carers, as well as the challenges they often face, and ensuring they feel heard, valued, and supported.

No carer should ever feel that their struggles and sacrifices go unnoticed; the voices and experiences of unpaid carers matter, and it is our responsibility to listen and act on these.