THE BLOG

Join the Dementia Conversation

22/05/2013 17:03 BST | Updated 22/07/2013 10:12 BST

Given that my dad had dementia for 19 years, you might expect that he and I would have had at least one conversation about it.

We had the sort of relationship where we could discuss things openly, to the extent that during my early childhood dad would talk candidly about the sort of funeral he wanted when his time came. Yet we never discussed dementia. We never talked about what would happen if he could no longer look after himself, make decisions or manage his affairs. He was a strong, hardworking, resourceful and dependable man; it never crossed the minds of anyone in my family that he would ever be anything else.

As a result the years he spent living with vascular dementia, and particularly the last nine spent in care homes, were very much trial and error for us. We knew him better than anyone else, and yet we had to accept that we could only ever represent his wishes to the best of our ability, rather than to the letter of what he would have wanted.

From my dad's point of view, I'm quite sure that if he had been told he would develop dementia, he would have simply said he wanted a gun to shoot himself. He was from a generation that, if they had an understanding of dementia, it was the most negative possible representation - a perception of the disease that in reality was very far removed from the majority of what my dad actually experienced.

Much of that stigma is still rife in society today, and yet it wasn't fear that stopped me talking to my dad about dementia. When he was developing it through a series of TIAs (mini strokes), we simply didn't realise that it was dementia, or indeed what dementia even meant. We dubbed it eccentricity and went along with his increasingly erratic behaviour, compensating for his gradual inability to look after himself by rallying round to help.

It was only when a larger stroke, that left him collapsed at home, led to hospitalisation that we were officially given his diagnosis of dementia. By that point the strokes had destroyed enough of his brain that any sort of in-depth conversation with dad about his diagnosis and the future was impossible. Our opportunity to talk had gone, and as we came to realise, it would never return.

Having a conversation may not seem like a luxury, but there is a point when it can become too late to talk, and you just never know if or when that point may come. Of course it may never come, but amongst the 800,000+ people who are currently living with dementia in the UK, I would hazard a guess that the vast majority never had a full and frank discussion with their loved ones about dementia, their wishes for care and their future planning.

Most people don't even have a will, let alone a power of attorney, so why would we bother to talk about a progressive terminal disease that is more feared than cancer amongst the over 50s? Yet we WILL talk about cancer and a host of other diseases. Dementia needs to be talked about as much, if not more, simply because the very nature of it is to erode the ability to have conversations.

Families across the world can no longer simply ignore dementia. It has touched so many people's lives and will touch far more in the future. Not talking about something doesn't mean it won't, or it isn't, happening. Strangely, having been a person who never talked about dementia, I now talk about it all the time, and I can honestly say that the more you talk the easier it gets.

Talking produces expressions of emotions, prompts questions, explores understanding and changes perceptions. It can inform, or at very least relieve the feeling of trying to make sense of everything alone. Most of all though, it gives families that precious chance to be open and honest with each other.

Of all the conversations I had with my dad, the one I really should have had was about dementia. I will never be able to change that, but you can learn from my missed opportunity. Dementia is too life-changing not be discussed, so be brave and talk about it.