The Global Challenges of Dementia

Dementia is a huge topic, encompassing many different aspects that stray into the territories of (in no particular order) healthcare, social care, science, community, family life, wider society, therapeutic practitioners, the voluntary sector, academia, finance, pharmaceuticals and yes, politics. 'Ownership' of it is hotly contested - it is a health issue, a care issue, something that governments must lead on or something that only the individuals living with it, and their families, truly understand?

Mixing politics with health and social care is a thorny issue, so it's perhaps no surprise that the G8 Dementia Summit in December 2013 and the more recent UK legacy event to follow up the Summit have been contentious.

Dementia is a huge topic, encompassing many different aspects that stray into the territories of (in no particular order) healthcare, social care, science, community, family life, wider society, therapeutic practitioners, the voluntary sector, academia, finance, pharmaceuticals and yes, politics. 'Ownership' of it is hotly contested - it is a health issue, a care issue, something that governments must lead on or something that only the individuals living with it, and their families, truly understand?

In the midst of all of this the UK legacy event drew mixed reactions. It saw the introduction of the new World Dementia Envoy, Dr Dennis Gillings, and the World Dementia Council, and featured speakers that included government representatives from the G8 nations and experts from health, care, the voluntary sector, science, finance, academia and pharmaceuticals.

The audience was equally mixed, and included people living with dementia and carers past and present. Helga Rohra, Chairperson of Alzheimer Europe's European Working Group of People with Dementia, asked a very pointed question about how the Envoy and his team intend to engage with and actively involve people who are living with dementia. The answer, however, is unclear.

One of the growing criticisms of this new world focus on dementia has come from the lack of engagement with those who are living with dementia and their families, something that will need to be addressed and not in a tokenistic way. Alongside this has been the mixed messages of just what the priorities are and how we square the global challenges with the domestic ones.

It's vital that in debating global verses domestic challenges we understand the remit of both. On a global level it's about action that will be beneficial worldwide, irrespective of how each individual country approaches the care and support of its citizens who are living with dementia now and in the future. By the very nature of this remit it is extremely broad and can only really effectively look at issues such as brain research, development of new treatments (which in my view should be both pharmacological and non-pharmacological/therapeutic) and innovations in care.

I understand the reservations of people who want more immediate action. Clearly the global remit is unlikely to benefit someone who is living with moderate or advanced dementia in 2014. The timescales for much of this work span many years, but the aim is to learn from what we know now and build on that to help our fellow citizens in the future.

These global efforts are far too little too late for my dear dad, who passed away in 2012, and will be too late for many other beloved family members, but I appreciate the need for this type of forward-thinking global focus. Without it, the danger is that we live forever more being inadequately reactive to each new person who develops dementia, rather than being proactive in effective treatment and care. The holy-grail may be seen as a cure, but I would go further and look towards preventing the development of dementia to begin with.

So if the global dementia focus can't help our loved ones who are living with dementia today, what can? For me this is the domestic policy focus. The detailed domestic challenges that each country faces have to be tackled individually because health and social care systems, budgets, communities, societies and nations are very different in the care and support they currently offer to people who are living with dementia.

The global dementia focus can give us innovative examples of current care models that may or may not be adaptable to fit the UK's needs, but it is for all of us who care passionately about dementia in the UK to use the 2015 General Election to lobby our politicians. Put dementia on the manifesto agenda. Make sure that health and social care is understood, properly debated and funded. Ensure that there is cross-party support for a new dementia strategy, and that such a strategy puts people living with dementia and their families at its heart.

The aspiration of living well with dementia fits into both the global and domestic policy agendas, but arguably as both stand we still have a long way to go. There is innovative work in the UK that embodies this aspiration, but pockets of good practice don't offer the widespread benefits that are required. Going forward, we need to find a fusion of the very best the UK can offer allied with global progress.

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