What if the person you love doesn’t want anyone else to know about their dementia?

The diagnosis may have come as a terrible shock for both of you, or it might have been something you’d been expecting. But now it’s up to the person you love who they decide to tell about their dementia…or not.

Of course, some people want to be open about it from the start. While the prospect of breaking the news to friends and family might seem daunting and upsetting, many believe that the sooner they do it, the quicker they can start to get the support and understanding they need from those closest.

Fortunately, as awareness of dementia increases, the likelihood of people saying something crass or offensive has diminished. Instead, they’re more likely to react in a caring and respectful manner.

There are also couple of organisations you are legally required to inform, such as the DVLA and your car insurance provider (although this doesn’t necessarily mean you have to stop driving). If the person you love is working, it’s also worth checking any employment contracts too because there might be a legal requirement to tell your employer the diagnosis.

But while evidence suggests that telling others can make the dementia journey a bit easier on everyone, there are no rules about who you should tell or when you should tell them.

So if the person you care about insists that they want to keep it quiet, most family members are happy to simply respect their wishes. After all, there’s no need to tell everyone you know or people you don’t see very often.

But what if they want to keep it even quieter? Want if they don’t even want their children or best friends to know?

Unforgettable founder James Ashwell only discovered his mum Fay had dementia after his father’s sudden death. James was never sure whether his dad kept the diagnosis a secret out of respect for his mum or because he couldn’t bear to accept it himself. ‘Perhaps the idea that they may now be robbed of their future together was too much, he couldn’t face it,’ James recalls. ‘Instead he played it down and protected her – and us – from it. Consequently, we never had the, ‘Mum’s got dementia,’ conversation.’

Many family carers admit that saying nothing can be incredibly difficult. Some shared their experiences recently on twitter. Richard Creighton, who cares for his wife Kate who has dementia, said; ‘This has been a big issue for me. Kate has always wanted to be private. She has told only one person, her best friend. I told our children three years after the diagnosis. After six years, I opened up.’

Dementia author and advocate Marianne Sciucco admitted she felt the same when someone close to her was diagnosed with dementia; ‘This is an issue most people grapple with, I did. Even after death, I’m still uncomfortable revealing his diagnosis, one he did not know and would not understand if he did.’

Most blame their loved one’s desire to keep quiet on the stigma that still sadly surrounds a dementia diagnosis. ‘Stigma and shame robbed us of opportunity to plan, prepare and find out mum’s wishes,’ Julia Powell said. ‘I feel bad exposing mum’s secret but her local friends knew something was wrong.’

Nigel Gibbs decided to face his own diagnosis in a different way. ‘My husband, when diagnosed with FTD, said straight away he was going to tell people. No secrets,’ says his wife Mary, ‘And he was going to hand in his driving licence immediately.’

Some family carers eventually find that their loved one’s desire to talk about their diagnosis changes as their illness progresses. ‘When Jan was first diagnosed, she was a champion of it,’ recalls Dan Gaetano. ‘She even talked about it on a morning TV show. I was the one who had a hard time. In the mid stages she seemed to balk at it and now in her later stages she has no concern. Now I am the one who talks/tweets about it.’

What have you found? We’d love to hear your experiences and views about this too. Please share your thoughts with our community other members of the Unforgettable Dementia Support Group.