To Tell or Not to Tell?

Good morning everyone,

Preoccupied as we naturally all are with the problems connected with COVID-19, I thought for this Friday’s musing, I’d take the coronavirus topic off the menu for a short while.

Although it can’t be anything but uppermost in all our minds, there are still other challenges that go on regardless, and maybe it would be good to focus something else for a while, for a bit of a break. But before I move away from this most talked-about topic, may I just mention the new forum Positive Wellbeing for Self-isolators on HeathUnlocked. It's there for anyone who is self-isolated at home for any reason, who wants a bit of support and interaction with others, and we have a lively group of people as members. I see that some of you have taken a stroll over already, but if you haven't tried it out yet, do take a look.

But my question this morning is, how to proceed when a loved one with dementia doesn’t want anyone else to know?

I think it’s a moral dilemma versus a practical one.

I read an article about it a few weeks ago. It’s not something I’ve come across myself, but I do understand how reluctant some people might be, seeing it as a sort of social stigma, despite all the efforts society has made to ‘normalise’ the diagnosis,

I think most of the reluctance is possibly personal denial of the diagnosis, driven by a fear of what’s to come. If someone has shared their diagnosis with you and asks you to keep it confidential, how to proceed? Obviously we don't want to betray a confidence and upset the person concerned, but maybe it's better to try to reassure them that its not shameful in any way and most people at least now have a basic understanding of what dementia is, and that any decent person will not be judgmental.

In its early stages dementia probably can be hidden, but it must become more and more difficult, especially when you are in the role of Carer and have to provide for the person’s changing needs to keep them safe and well. Quite apart from anything else, others are going to draw their own conclusions as to what might be wrong when the effects of the dementia begin to make it clear that there is some kind of problem.

Even if you start out agreeing to keep silent, I’d think that eventually, you are probably are going to have to reveal this secret, and I think I’d rather work with the person in question to feel more comfortable about revealing the truth, than make a promise that it may be impossible to keep.

Perhaps there’s a middle ground in which you agree to say nothing initially, but can’t promise never to say anything.

It takes time for the diagnosis of anything serious to sink in. I know people who haven’t wanted to mention a cancer or mental health diagnosis, and I think there’s a long way to go before we reach a place in society where we feel can all be more open and comfortable about some diagnoses.

Has anyone had any experience of a request of this nature and found themselves in a dilemma, or what’s your opinion on how to deal with it?

Hoping everyone in the Care Community is managing to deal with the new reality of life amid coronavirus and I wish you all strength to deal with the challenges it’s throwing up, and I send you all good wishes in your efforts to stay safe and well.

[sassy59]

Thank you Callendersgal for taking Covid-19 off the table for a short while. We’re seeing news about that just about everywhere. Lots of alarm for many so great to have the positive wellbeing for self-isolators website. Such a great place to go for support.

Pete’s mum had dementia but would never acknowledge that fact so life just went on. It soon became apparent to everyone though that things weren’t right and many distanced themselves from her. Sad but true.

I’m wishing you a good day and hoping we all stay safe and well. Xxxx

[Hidden in reply to sassy59]

Hi sassy59, I think it's very sad but true that lots of people really don't know how to communicate with those who have dementia. It becomes easier not to try and it can be hurtful in the early stages. Maybe one reason why it could be better to just say nothing! And no harm done promising to keep the secret if you are able to maintain that confidence. Thanks so much for your input and have a good day, and stay safe.

[sassy59 in reply to Hidden]

So true Callendersgal. Thank you and you stay safe and well too. Xxxx

[Gambit62]

Undeniably a very difficult situation.

If we were looking at this from a professional standpoint then the issue would be safeguarding - you can't promise not to mention something if the individual's health (mental or physical) and welfare are at risk because you need to deal with those issues.

Off course, it also depends on how advanced the dementia actually is, but I have a great fondness for 'therapeutic lying' which isn't about dishonesty but about recognising that the person concerned sees the world very differently from the way you see it and when you are interacting with them you need to be responding to their world, particularly when they are 'lost in time' as tends to happen as the dementia progresses.

Reality is that, as time goes on keeping the secret becomes harmful rather then helpful - and that is the point where the secrecy has to stop.

Dementia is life changing and people's response to change definitely is a cycle - starting with denial, followed by anger before you get to acceptance, and then being able to adapt. Everyone is different in how quickly the go through that cycle and the speed will always vary. Some never get out of denial. Some never get out of anger. All you can really do is respond to the individual as they are at that moment whilst keeping an eye on the environment as a whole and calling in professionals (potentially without the knowledge of the person) if the environment is becoming unsafe. The big downsides to that a) levels of professional competence can be hit and miss and b) there often aren't enough professionals to meet the needs.

[Hidden in reply to Gambit62]

That’s excellent input and advice Gambit62, and thanks so much for taking the time to address the issue so thoroughly. It’s great food for thought and I much appreciate it.