Real stories

Meet Dementia together magazine’s co-production panel

Pete Middleton, who has Alzheimer’s, in Northamptonshire 

Co-production fires me up, so I was pleased to have the opportunity to work on this special issue.

I had to give up work when diagnosed, and I want to show that people living with dementia are capable and useful. 

I was a technical author and editor for many years, so am experienced and comfortable in the field. I love working with other people and it’s also great fun. 

I was interested in how we present things for different readers and keen to learn more about the process of putting the magazine together.

This project has helped me to feel useful.

Perhaps we should do more of this in the future because it’s good to refresh content. 

Lynne McVicar, a former carer in London

My husband, Niven, was diagnosed with dementia aged 58.

Eventually I had to give up most of my work in writing and communications to become his full-time carer. He died aged 64. 

Those six years were an enormous learning curve.

I’d known nothing about dementia – other than that it affected a person’s memory – or how it would eventually infiltrate every aspect of our lives.

I now use that experience to help others as a Dementia Support Forum volunteer. 

For me, this project was about teamwork and being able to take a fresh, open and meaningful look at stories which connect with and inspire a wide range of people affected by dementia.

It’s about being heard – but also about hearing others. 

Allison Batchelor, living with Alzheimer’s in County Down

Dementia affects my ability to find my words and I often need time to think about what I want or need to say or do.

I was drawn to the project because I wanted to contribute to the magazine and meet people with different backgrounds and viewpoints.

Writing about peer support also helps to get the message out and encourage people. 

This is not something I’d done before.

I wanted to learn more about how ideas behind articles are formulated, article structure, writing, the editing process, and interviewing people. 

I was keen to work alongside someone for guidance and step-by-step instructions, though I was keen to build my confidence and skill base.

Diana Smith-Harris, a former carer in West Yorkshire 

I cared for my husband Eugene, who had young-onset dementia.

I now use the experience I gained as a carer, and during my 31 years as a social worker, to champion projects and research surrounding young-onset dementia. 

The special issue project interested me because I have never been involved in putting together a magazine – it has been a completely new experience for me. 

I enjoyed working with people with similar experiences to me as well as sharing ideas and learning more about the process behind publishing a magazine. 

Nigel Hullah, living with dementia in south-west Wales 

I was diagnosed with young-onset dementia in 2013.

I chair the 3 Nations Dementia Working Group and – as the slow drip of being considered a lesser person because of my dementia was made obvious to me – I’ve become fully engaged with social justice and human rights for people with dementia. 

I thought this would be an interesting opportunity to help produce a well-thought-out magazine and be able to influence content. 

This shows how lived experience can influence and improve an already excellent publication.

The help and support from the team has been outstanding and I couldn’t have asked for more.