Advice

Sharing your story with the media to help make dementia a priority

People like you are key to achieving positive change for everyone affected by dementia. 

There are many different ways to campaign, but speaking to a local newspaper, magazine or radio station – or even to national media – can be extremely effective.

It might sound like an intimidating thing to do, but we support people who are doing it throughout. 

Without hearing from people with direct experience of dementia, politicians and the public often don’t understand its devastating impact. 

Advocating for people 

Edward Wilson, who lives with young-onset Alzheimer’s in Belfast, is using his voice to campaign for improved diagnosis. 

Earlier this year, after helping to make a film shown to members of the Northern Ireland Assembly, Edward was interviewed by ITV. 

‘Throughout my career I’ve advocated for people,’ Edward says. ‘I once worked in a homeless hostel and became a social worker supporting people with mental health conditions. 

‘I’m using my experience to advocate for people with dementia – especially those who aren’t able or confident enough to speak for themselves.’ 

Diagnosis challenge 

Edward wants healthcare professionals to be more aware of the signs of dementia, and to ask for advice or a referral when they’re unsure. 

‘Getting my dementia diagnosis was very challenging,’ he says. 

‘I first noticed issues with my memory when colleagues mentioned that I was repeating myself and forgetting things. 

‘Like many people I was working at home during Covid, so I was able to mask the symptoms.’ 

Edward visited his GP three times and was eventually prescribed antidepressants. 

‘After three years of the antidepressants not working, I insisted that I be sent to a specialist and was eventually diagnosed with Alzheimer’s. 

‘I know GPs are busy, but I think it would be useful to encourage them to think differently or even pick up the phone to dementia experts if they’re in doubt.’ 

‘For as long as I can’ 

Since receiving his diagnosis and being prescribed medication, Edward says things have improved. 

‘I need well-established routines, but I can still cook, drive and do DIY,’ he says. 

‘I’ve got a to-do list in the kitchen which my wife writes on, but I’m brilliant at forgetting to read it! 

‘Alzheimer’s is a progressive condition. As time goes on, I will lose more of my memory and other abilities. 

‘I will campaign for as long as I can.’