D-Day: The Tide Is Turning For Dementia

It is finally time to talk about dementia! It is now everywhere in the news, in the public eye, in politicians' speeches and soon in dinner party conversations: the D-word might no longer be the dirty word, or the dreaded, damned word. Dementia is finally having a moment.

Years ago, we could not talk about cancer in conversation as we can now; HIV/Aids have been part of the accepted global landscape for some time. It is still to this day difficult to share thoughts and experiences of mental illness, but there has been a significant drive to promote its discussion in recent years. Yet dementia remains one of the most taboo subjects of all, and it instils an instinctive fear in most of us. But it is a subject many of us need to familiarise ourselves with if we are to believe the statistics.

At the recent G8 Dementia Summit, world leaders committed their resources to developing a cure or treatment for dementia by 2025.

There are currently 44 million people across the globe living with dementia; a number that is expected to rocket to 132 million by 2050.

And yet, in the UK cancer research gets 8x the amount of funding as dementia.

The UK has promised to double its annual research funding to £135 million by 2025.

Hilary Evans, of Alzheimer's Research UK was quoted in The Times, saying "This action plan is the best possible news for people living with dementia. It tells them that the world will fight for them, and that the best and most collaborative science is our greatest weapon."2 Yet whilst these initiatives are undoubtedly good news, we will not realistically feel their benefit for many years to come. And that is of little help to those living with dementia now.

I have just lost my 83 year old father, who had Alzheimer and vascular dementia. He lived far away and was looked after by my brother and his wife. Their personal life over the last year just disappeared. Dementia destroys families, tears at the very heart of what being 'human' is. Seeing the parent who brought you up and loved you slowly being replaced by a stranger who is angry, doesn't recognise you, behaves like a toddler on amphetamines, runs away etc. is soul destroying. Not knowing what little sense of reality, what little glimpses of consciousness your loved one might occasionally experience is awful; not losing your marbles around them can be challenging.

So, naturally, I was interested in finding out what is available to those living with dementia and their families. I spoke with Rogier Van Den Brink, Managing Director of Red & Yellow Care, a team of specialists offering a unique clinical care solution.

"Today's global attention for dementia is a great development," says Rogier "and it is very positive news that a collaborative effort is made to increase research budgets and diagnostic rates. But the most pressing issue is the current lack of post-diagnostic care and support for those already living with dementia."

So what can they hope for now? "The unprecedented levels of attention for the condition will inevitably lead to reduced stigma and innovation of care across the board" says Rogier. "And Red & Yellow Care has done exactly that. We have developed a post-diagnostic care service that helps people to live independently for longer and enjoy life beyond diagnosis. Because, contrary to popular belief, life can be enjoyable for people with dementia. To achieve this, care and support should be holistic, tailored to the individual and offered for life. And life should be about 'the moment'. Even if we are unable to remember our past experiences, we are all able to experience the moment. By shifting our focus, we can see life as a series of events - not necessarily to be remembered, but to be enjoyed as they happen."

Rogier's words resonate with me. It makes me sad that we couldn't provide the best possible care for my father and that we found it difficult to "enjoy life" and experience the moment with him. I realize now how valuable support and guidance are to families and carers. But it also gives me hope that we are seeing a shift, a new acceptance of dementia and that we will see more organisations like Red and Yellow paving the way in how we care for those with dementia.
 

1. [BBC News http://www.bbc.co.uk/news/health-25318194 (11 December 2013)]↩

2. [Chris Smyth, The Times, 12 December 2013 pp. 1 & 4]↩