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Care Verses Cure - Let's Not Fight About It

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Dementia, in common with many terminal diseases, polarises opinion when it comes to the priorities different individuals and groups have.

For me, finding merit in every argument isn't difficult. Take for example families who have a loved one currently living with dementia; their priority is generally for improved care and support now. Who wouldn't agree with that?

Then take those grieving the loss of a loved one to dementia; their greatest priority as they attempt to come to terms with their grief is potentially to help others learn from their experiences of care and caring.

For all who fear dementia, they are most likely to want to know how they can prevent themselves, or family members, from developing it. Meanwhile, other individuals may look to prioritise improved understanding of what causes the different dementias, development of more effective treatments, or advancements towards curing Alzheimer's and the other 100-plus dementias, all with equally passionate and reasoned arguments.

You might expect each of these priority areas to dovetail each other quite neatly, but in the current climate of austerity there is growing competition for exposure and, crucially, money. Against this backdrop, the G8 met to discuss dementia for the first time on 11 December 2013, making it clear that their priority was research and future planning.

It seems pretty obvious to me that one meeting on one day to discuss a topic as vast as dementia is going to need to focus primarily on one particular area. Yet the consternation that accompanied the announcement that the G8 would focus on research, and the criticism that has abounded as a result of the lack of focus on care, has baffled me.

To make it clear, if you want to compartmentalise my priorities, I currently fit into that group of people who are mourning the loss of a loved one. I share my experiences of my deceased father's dementia in the hope that others can learn from them. In this regard I fit very neatly into the group marked 'better care please' since a cure is clearly far too late for my father.

In my role as a campaigner, I regularly hear the voices of families who are coping with the advancement of their loved one's dementia and desperately seeking increased understanding and improved care. I have walked in their shoes and that only reinforces my resolve for 'better care please'.

Equally importantly though I also hear from those who are recently diagnosed, particularly but not exclusively people with early onset dementia, who are pinning all their hopes on improved treatments and that elusive cure. As we seek to diagnose increasing numbers of people in a more timely fashion in the future, there will be many more voices in this camp - people who don't fit the stereotypical view of a person with dementia (often portrayed as someone who is in the more advanced stages and totally dependent), and who want to maintain their quality of life through any means possible for as long as possible.

In essence the G8 could have met to discuss any of these priorities, and I'm certain we can (and will) share much good practice to further the aim of 'better care please'. But we must remember that these eight countries, whilst having many similarities, also have significant differences in culture, demographics and approaches to health and social care. With this in mind, the general sharing of good care practice is invaluable, but when it comes to tackling some of the specific issues around care in the UK, I believe we need to work primarily on a national rather than international level.

Sharing of research resources, information and outcomes, however, is where the G8 is perfectly placed, and I support the fact that they chose to focus on this. Does that make care the poor relation to cure? In my view no it does not. Am I comfortable with the idea that private companies may benefit from the G8 prioritising research? Not particularly, but then most elements of care provision, apart from the wonderful dedication of family carers, goes back to a business model (be it profit or non-profit making) at some juncture somewhere in the world.

How do we move forward in 2014? I believe that everyone who cares about dementia needs to learn to dovetail a little more; care, cure and every priority in between has its place, and for a passionate campaigner like myself, each deserves focus and progress. How to ensure that happens is the great undiscovered challenge for 2014. Let's make a difference, together.

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