Alzheimer’s Society CEO responds to criticism of their latest TV campaign

It’s been a whirlwind few days following the launch of our new film ‘The Long Goodbye’. My biggest personal learning since joining Alzheimer’s Society has been that everyone’s experience of dementia is different and my goodness, that’s played out over the last few days seeing the responses to the film.

The film tells the unvarnished truth about the devastation caused by dementia. It’s not an easy watch but it’s an important one, and by reading hundreds of responses across social media since we launched it, it’s a reality that resonates with a lot of people.  

I wanted to address some of the questions we’re being asked, and I’m personally being approached with, too.  

Was the film informed by people with lived experience? It was very much co-produced – from concept to creation – with hundreds of people directly affected by dementia. The script was written by someone drawing on her own experience, having lost her dad to the disease two years ago. These discussions haven't all been easy and of course we haven't all agreed but they have been great, challenging debates. We continually adjusted the script based on that feedback.  And it's important to add that the staff team within in the Society who are responsible for creating it, including me, have all had our own experiences of slowly losing parents to dementia too.

I’ve also been asked why we’ve made the film so hard-hitting.

First of all, I want to make it really clear this is not about fundraising for us. It’s about raising awareness of the devastating reality of dementia for so many families. Shockingly, only 10% of people know that dementia is the leading cause of death in the UK and only 20% of people think dementia will affect them or someone they know (when in reality it will affect 50% of the population).  

Every day, I hear from people telling me that they need us to hear their story. We don’t like talking about end-of-life, death and dying – but we have to get better at talking about it. Every time we shy away from talking about it, we give policy makers and decision makers cover to ignore dementia and take action on something else. It’s just not good enough, dementia isn’t the priority it should be, and we can’t put up with it anymore.

We're hidden away from dementia being UK's biggest killer. People just don't understand the scale of it. Of course I understand that people want to hear about living well. And it’s really hard for me to hear from those who think we haven’t taken the right approach here. But if we’re really going to change what a dementia diagnosis means for so many people, I need us to step outside of what we've always done. We’re at a crossroads for dementia. It’s an overused phrase but we really are – we’re on the cusp of potentially game-changing research for some people and we’ve got the opportunity to make things better for our kids and grandkids. Better than what many of our loved ones are going through right now.

The reality is, if we carry on doing what we’re doing, nothing will change. And I need us to make this better.