Is it right to protect someone from their own dementia diagnosis? James Ashwell asks whether it may be wiser – and kinder – to tell them the truth

Looking back, I’m not sure if Mum even knew she had dementia. This may sound surprising, especially since she lived with the illness for more than six years. But when you consider the way she was cared for; it makes perfect sense. For a start, nobody ever used the word dementia in front of her, including the professionals we encountered. Instead, we all fell back on a term which seemed gentler, kinder and easier all round. Mum’s difficulties were the result of memory problems.

I know that everyone – from the GP who first mentioned her memory problems to the consultant at the memory clinic she attended – had Mum’s best interests at heart. So did we, her family, when we discussed these memory problems with her. Mum herself seemed to understand, too, and would tell people about her memory problems in a very matter-of-fact manner.

Yet ironically Mum didn’t even have memory problems. The type of dementia she had – early-onset frontotemporal Dementia (sometimes known as Pick's disease) – mainly affected her speech and ability to express emotions. Memory problems only came much later, long after she’d lost the ability to name or discuss them. But somehow we all clung to this inaccurate description of Mum’s illness, allowing her to be defined by it. Why? Because, rightly or wrongly, it sounded less brutal than the reality.

Of course, nobody wants to be told they have a terminal, progressive illness, so receiving a dementia diagnosis gradually, in small steps, does seem the best option. ‘Worried about your Memory?’ is certainly a better way to start a potentially difficult conversation than ‘Think you’ve got dementia?’ In fact, it’s no surprise that this gentle question is the title of one of the Alzheimer’s Society’s very popular information brochures. Unfortunately, in many cases, the conversation doesn’t seem to progress any further.

We weren’t the only family to shy away from deeper conversations, or to step carefully around, the ‘D’ word. Many other families avoid it too, and with very good reason. ‘Mum cared for her sister who had dementia and, as a result, the illness terrified her,’ says Kate, a visitor to Unforgettable. ‘So when she was diagnosed herself we avoided saying ‘dementia’ because we knew how much it upset her.’ Instead, Kate’s family found another description which felt right for them. ‘Whenever Mum asked ‘what’s wrong with me?’ We told her she was suffering from wear and tear on the brain,’ Kate recalls. ‘For some reason, this description made sense and seemed to calm her down.’

Other families find they need to go further than simply being economical with the truth. Therapeutic lying is a skill most dementia carers develop to spare their loved ones from pain and grief. ‘Where’s my Dad?’ can be greeted with, ‘oh where would he usually be now?’ rather than explaining he died 20 years ago. Applying the same technique to issues as fundamental as ‘what is wrong with me?’ can therefore make sense. After a while it even begins to come naturally. ‘You’re just getting forgetful in your old age,’ slips easily off the tongue when you’ve said it enough times.

Then there are the families who try to tell their loved ones the truth…but are consistently met with such denial, rage and horror that they eventually give up and decide instead to protect their loved ones from all mention of the ‘D’ word.

Those of us working in the dementia space consciously collude with this desire to protect. At Unforgettable we don’t have the word ‘dementia’ on any of the packaging for our own products because there’s a consensus in the industry that it is such a highly charged, emotive word, it’s mere presence on a box or package causes offence and puts people off buying something that may help them. We explain our policy by saying we’re simply being kind and compassionate (which we are). Our packaging policy is also based on data and research from most of our suppliers and partners who have learned, over time, that sales are higher when they don’t mention the ‘D’ word specifically. But whether this is in the best interests of the person with dementia remains to be seen.

These issues make life much tougher on families and carers. For whilst their loved one can live without the stress of knowing they have a terminal illness, in a kind of happy-ish denial, the family, unfortunately, cannot. They are the ones who must cope with the caring duties and the multitude of big decisions they bring, whilst also tip-toeing around the ‘D’ word.

Of course, every person and every dementia journey is unique and I’m not suggesting for one moment that everyone ‘should’ be told the truth about their diagnosis. Kindness and compassion will always play a pivotal role. However, we also need to be aware of this strange sub-language that surrounds dementia. It’s one that we, as a society, have created, and perhaps we need to consider whether it really is as helpful as we would like to believe.

In my opinion, the more honest and clear you can be about dementia the better for everybody. If we could move beyond talking about memory problems we might be able to have a truthful, adult conversation with our loved ones about their real condition – whilst they’re still capable of understanding.

I’ll never know if Mum understood her diagnosis or not and that’s something I regret. I remember once, when Mum was still in the early stages of the illness, she started telling me about her father whom she’d cared for when he became ill. He’d been diagnosed with ‘shell shock’ after lengthy army service, yet all the symptoms and behaviours Mum described to me were of a dementia very similar to the one she was currently experiencing herself, but which would never have been diagnosed as such back then.

When I recall that conversation now I can’t help wondering… Perhaps Mum understood perfectly what was happening to her and this was her way of telling me. Or perhaps the opposite is true. Perhaps her own experience of caring for her father in a world in which illnesses of the mind or brain were too feared to mention, meant she was happier not knowing.

But the ‘what if’ questions regularly come back to haunt me. What if she did want to talk about it? What if she was waiting for one of her children to initiate a conversation? What if she was scared and wanted her family to reassure her? But in our efforts to be kind, none of us did. In our efforts to be kind we may, unknowingly, have overlooked her fundamental right to know the truth about her illness.

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