We reveal the heart-breaking reality of dementia happening behind closed doors

How we are making a case for change on dementia issues

We want to kickstart a national conversation about dementia and make it a political, health and social priority. Dementia is the biggest health and social care crisis of our time and UK’s biggest killer – but its huge, devastating impact is hidden behind closed doors.

• Today we launch ‘Behind Closed Doors’, a powerful new campaign to shed light on the hidden reality of dementia and the devastating lack of support currently offered, to create an unignorable case to make the condition a political priority.
   
• TV presenter and journalist Anna Richardson, who fronted last night’s documentary ‘Anna Richardson: Love, Loss and Dementia’, today launched the ‘Behind Closed Doors’ installation at London’s Southbank.
   
• Celebrity supporters Anne-Marie Duff, David Baddiel and Suranne Jones have lent their voices to bring to life the desperate calls made to the charity’s support line every day from families in crisis.
   
• The campaign comes in response to startling new research that reveals caring for someone with dementia leaves family carers overwhelmed, unsupported and isolated as they pick up the pieces where health and social care is failing them.

The Behind Closed Doors campaign

Thousands of families are left to cope alone with the devastation of dementia, feeling overwhelmed, unsupported and isolated as they pick up the pieces where health and social care is failing them.

We're bringing these heart-breaking stories of dementia out from behind closed doors, making them public and impossible for decision-makers to ignore. Together, we can drive change and make dementia a priority.

Our powerful new campaign aims to shed light on the hidden reality of dementia and the devastating impact of a lack of support, creating an unignorable case for dementia to be made a political, health and care priority.

How many people live with dementia?

With around 1 million people with dementia in the UK and numbers set to rise to 1.4m by 2040, our latest campaign aims to bring out from behind closed doors the hidden reality of the UK’s leading cause of death.

It comes in response to startling new research that reveals how thousands of families are left to cope alone with the devastation of dementia, feeling overwhelmed, unsupported and isolated as they pick up the pieces where health and social care is failing them.

Who is helping us spread the word?

TV presenter and journalist Anna Richardson, whose dad is living with vascular dementia, today launched the ‘Behind Closed Doors’ installation from London’s Southbank. The installation will encourage people to see, hear and share real life experiences of dementia, from people from all walks of life.

We are calling on people across the UK to share their own stories of dementia to help bring about change and make dementia a national conversation, via a dedicated website stories hub.

We will take the stories we collect to those who need to hear them the most, holding decision-makers and governments across the UK to account to face up to the UK’s biggest killer, realise the magnitude of the issue and address the urgent challenges it poses.

What our dementia campaign supporters have to say

Anna Richardson said: “Coping with my dad's dementia is the most painful thing I've ever experienced. We all deserve a better future, we all need hope.”

Celebrity supporters Anne-Marie Duff, David Baddiel and Suranne Jones, all of whom have a personal connection to dementia, have lent their voices to the campaign, bringing to life the desperate calls the charity’s support line receives every day.

Anne-Marie Duff, actor and Alzheimer’s Society supporter whose brother Eddie is living with early-onset Alzheimer’s disease, explained why she wanted to be part of this campaign. She said, “The more we talk about dementia, the lighter the weight is that we carry because we realise that so many people have very similar experiences, but they feel isolated, helpless and alone. 

I absolutely resonate with those feelings. We need to make dementia a priority because we’re an ageing population and the statistics are so high.”

David Baddiel, comedian and Alzheimer’s Society Ambassador whose dad Colin lived with Pick’s Disease for several years and passed away in January 2022, added: 

Dementia takes an incredible toll on the families and carers around the person living with the condition. 

"I’ve seen people lock themselves away because they didn’t know what else to do. They were scared. Dementia is scary, but I think the only way to deal with that fear is by talking about it, sharing what you and your family members are going through and by trying to dispel myths about it.”

Suranne Jones, actor and Alzheimer’s Society Ambassador whose mother Jenny lived with dementia for eight years before sadly passing away in 2016, said: “I was honoured to have been asked to be part of Alzheimer’s Society’s Behind Closed Doors campaign. 

Recording the Support Line calls made it really hit home just how isolating dementia can be for the person living with the condition and their families. The words really resonated with me, and I'm driven more than ever to help in whatever way I can to make a difference."

By talking and raising awareness, we can create a world where people have access to the support they so desperately need and can improve the lives of everyone affected by dementia.

The dementia research we have commissioned

Research commissioned by Alzheimer’s Society and carried out by Walnut Unlimited has revealed just 3 in 10 agreed that health care support or social support for dementia is easy to access. While less than 40% of family carers were satisfied with the support available for people living with dementia. As a result, over half (51%) of family carers have had their own mental or physical health impacted by caring for someone with dementia and over a quarter of family carers say they feel more isolated. 

This follows previous insight which found that despite dementia being the UK’s biggest killer, just 10% of people believe this to be true. 

Zohra Shaikh (80) from Surrey, who cares for her husband Afzal (88) who was diagnosed with young onset dementia and vascular dementia, said, “Receiving a dementia diagnosis or caring for a loved one can leave you feeling like you’re alone. It can be difficult to socialise in the ways you used to, to access the right support, and to open up to those around you. But it isn’t something that should be swept under the carpet."

The more we talk about it, the more people we can help in years to come.

What we have to say on the dementia health and social care issue

Kate Lee, CEO of Alzheimer’s Society, said: 

“Dementia is the biggest health and social care issue of our time. Its devastation reaches families in every corner of the UK and yet it isn’t the priority it needs to be. At least a third of people living with dementia don’t have a diagnosis and are therefore unable to access the vital care, support and treatments they desperately need."

Dementia is a forgotten crisis that can’t be ignored any longer.

“That’s why we’re asking people to share their dementia stories and bring this reality out from behind closed doors. We want to get people talking about dementia and join us in pushing governments across the UK again, and again, and again to make dementia the priority it needs to be.”