The power of different voices sharing personal stories about dementia

At Alzheimer’s Society, we share a large number of real-life stories – people’s experiences of dementia and of making a difference in their community. 

Stories are a powerful way to increase understanding about dementia and what we can all do to help. They also make sure that people who are dealing with the day-to-day impact of dementia know they’re not alone. 

Dementia affects people from all communities and walks of life, and the Society is here for everyone affected by the condition.

We want to reflect the range of experiences that different people have, as well as what they have in common. 

Many of our stories appear in Dementia together magazine, and we think that anyone who reads it should be able see that our magazine is for them. 

Seeing ourselves 

People are often keen to make a difference for others by sharing their experiences, and many come to us with their story. However, to make every issue of our magazine visibly diverse, we also seek out stories from specific communities and about particular subjects.

Sometimes people have reasons to think twice about telling their stories, such as cultural attitudes or fears that it might affect the support they rely on. 

If you don’t already see people or stories that you identify with in the magazine, that can also be discouraging. You might think we’re not interested in sharing your experiences, or you may need reassurance about how we’d present them. 

These kinds of barriers don’t just sort themselves out – we need to focus on them to break them down. 

Seeing each other 

We look at the articles in each magazine and ask: Whose voices are we leaving out? What aspects of living with dementia and uniting against it are we not portraying? 

If there’s a reason why our articles tend to over-represent some experiences, then we see what we can do to address it. For example, it’s probably no surprise that the people with dementia whose stories we feature are often in the condition’s earlier stages.

But we can sometimes support a person with more advanced dementia to tell their story. We also look for carers and services supporting people with more advanced dementia to share their perspectives. 

Where there are communities whose stories don’t come to us as a matter of course, we see who we can work with to get these voices heard. It sometimes takes time to build the trust needed to do this, but it’s always worth the effort. 

Listening to you 

Our magazine is much more diverse and inclusive than ever before, but of course we want to get even better. This is an ongoing process, and we could easily miss things that might be obvious to you. 

Do you have experiences that you think could help us better represent how dementia can affect different people’s lives? Or do you know someone who might? 

 Do you have feedback about kinds of stories that we’re missing, or ideas about how to feature them? If so, we're keen to hear from you!