Carers Week: building carer friendly communities yourself as carer

As Carers Week highlights the theme of Building Carer Friendly Communities, Karen Young shares how caring for her husband Alan led her to help build a local support group for families affected by Lewy body dementia, and why carers should not be left to cope alone.

“Caring is a journey of unconditional love. I am Alan’s wife, best friend and primary care partner of 46 years. We live in South Yorkshire in a multigenerational home with our daughter and two young grandchildren. Our house is full of warmth and noise, but it also reflects the daily complexity of living with dementia.

Before diagnosis, life felt expansive. With our four children grown, we were planning adventure and spontaneity. Alan was a chartered civil engineer in transport planning, and I worked as a specialist bilingual employment coach and advocate for deaf people who use British Sign Language. We were a capable, practical team, supporting each other in work and family life. Everything shifted when Alan was diagnosed with Parkinson’s disease in 2019, and later with Lewy body dementia in 2022.

In the beginning, when you get a diagnosis, you often feel like, I don’t know what to do. I’m just lost. Once you’ve had your diagnosis, once you’ve got your medication, actually, they cut you loose then, and the responsibility’s on you.

The post-diagnostic support available for Lewy body dementia often depends on where you live and who you see. You are expected to find information, work out what support is available, and somehow navigate services at the very point when you have the least capacity to do it. I really feel that that’s a big gap in provision, because a care navigator would have the local knowledge, and then they would be able to navigate you, signpost you, support you, maybe pull things together.

Education is so key for carers. If you can understand why your loved one behaves the way that they do, then it just helps you to have more patience, knowledge, confidence, maybe just reduce your anxiety, reduce your stress.

With encouragement from our local Memory Service and support from Voluntary Action Rotherham, we established a peer-led Lewy body dementia group in Rotherham. It is a safe space to speak openly about the distinctive features of Lewy body dementia and share experiences, practical strategies and hope. We meet monthly, and we also have a carers-only WhatsApp group where we support each other in between meetings and share information.

The aim is that the carer does not feel alone, that they know there are people out there if they want to. It’s that sense of, actually, we’re in it. We are in it together. We say we’re amazing. That reinforcement matters, because carers need to hear that.

One of the things is, if you have a joint space, it’s difficult for the carer to really talk about the things that they maybe want to talk about. That is why carers need space for themselves as well.

We have also invited different speakers into the group so carers can hear directly about local support and ask questions in a safe setting, including social prescribers, Carers Resilience and Crossroads Care.

The police have talked to us about the Herbert Protocol, which allows families to record key information in advance to help police if someone with dementia goes missing, as well as safety in the home. We have looked at bringing in occupational therapy and speech and language therapy as well. It means people get information in a way that feels personal, relevant and easier to act on.

I felt so alone after Alan’s diagnosis, but being able to set up a support group for other families has given me so much joy and purpose. When dementia narrows your world, connection can widen it again.

Life has changed profoundly for me and Alan over the past few years. Alan now needs supervision, reassurance and support with daily activities. Yet there are still moments of connection: a shared smile, reading with our grandchildren, glimpses of the Alan I have always known. We are trying to do things together while we can, such as a weekly non-contact boxing group that keeps us active and connected.

I have personally also received wonderful support from Carers Resilience in Rotherham. They are a very good example of a community for carers and of what it means to feel supported rather than left to manage on your own.

Most of the caring is done in the home, and the carer can lose all of their life, really, because it is all they do. They don’t do anything for themselves. That cannot be right. Make carers a priority and understand that carers save the government millions and millions of pounds. If you invest in your carers, you actually have a stronger, better society.”

Karen’s Peer Support Group for Lewy Body Dementia is held every second Friday of the month, 10am-12pm, at Social Prescribing Hub, Rawmarsh Health Centre, Barbers Avenue, Rotherham S62 6AE.

For more information, please contact the Rotherham Memory Service on 03000 215 100 or rdash.rotherham-memory-service@nhs.net