So I’m sure we are all aware of the g8 dementia summit held in the week. Here is my summary and thoughts of what was discussed and whether it will make the difference we hope for.
- My first issue was with the Prime Minister saying he wanted the day of the summit to go down in history as the “day that the global fight back began”. Well excuse me Mr Prime Minister, I think you’ll find that many of us plebeians have been fighting back from the day this illness surfaced in our families. I myself have been fighting for nearly a year, which is nothing compared to many of the people I adore and follow. Little recognition for the fight backstage? No? OK then. We’ll carry on regardless.
- My next problem was this quote “It doesn’t matter whether you’re in London or Los Angeles, in rural India or urban Japan – dementia steals lives, it wrecks families, it breaks hearts and that is why all of us here are so utterly determined to beat it,” I agree, dementia can do these things without the correct support for the individual, carer and families. Which is what the current problem is. There is little or no support for those in this situation. It’s not so much that I am saying David Cameron is wrong, it’s just he makes it seem, to me, that there is other option but this destruction. Yes we do need to beat it, but first shouldn’t we tackle the stress and upset caused by lack of funding for support etc?
- Yes it’s lovely that they are doubling the funding to £132m (by 2025-that’s another 12 years away) but that is specifically money for a cure. Which again, I agree is needed. But personally I would like to see more money donated to helplines, support groups and personalized nurses/carers like Marie Curie/Macmillan etc. For example more localized Admiral Nurses to support families and individuals through what can be a very trying time, so they feel less alone and stressed until the cure is discovered. Also, the government pledged £375m to aid abroad. I’m all for charity, but we pledge this amount and then we end up giving more on top of that to foreign countries, where the money will also never end up with those who need it. Perhaps we should keep this money and use it to support the families and individuals with dementia?
Those are my three main bug bears. I will now go through the declaration from the G8 dementia summit and highlight the things that struck me.
“We acknowledge the on-going work occurring in our countries and globally to identify dementia as a major disease burden and to address issues related to ageing and mental health, including the World Health Organisation’s 2012 report, Dementia – A Public Health Priority” – as some of my online friends have also pointed out, the word “disease” comes with many negative stigmas. One pointed out that it is usually associated with contagiousness. We want to eradicate the belief that dementia, like other mental illnesses is catching. That’s why to us, dementia is more an “illness” than a “disease”. I looked up the difference between an illness and a disease and got the following response… “The difference between an illness and disease is that an illness is subjective feeling with no particular condition while a disease is a condition that leads to improper functioning of the body. An illness is curable but there some diseases that do not currently have a cure. In diagnosis the root cause of a disease can be identified e.g. pathogens, allergic reaction, but that of an illness is not identifiable” As we do not yet know what the cause of dementia is, how can we define it as a disease?
We recognise that dementia is not a normal part of ageing – I’m glad they made this point, so many people don’t go to get diagnosed for they believe they are going through a normal part of ageing, until this idea is tackled, many more undiagnosed cases will slip through the net and not receive the “help” they need. (I put help in inverted commas as it comes down to whether or not that support is available anyway).
“We note the socio-economic impact of dementia globally. Seventy per cent of the estimated annual world-wide cost of US$604 billion is spent on informal, social and direct medical care. Yet nearly 60 per cent of people with dementia live in low and middle income countries so the economic challenge will intensify as life expectancy increases across the globe.” – This sentence confuses me, I’m guessing us unpaid family carers are included in the “informal” part. (If we’re not, I’ll be slightly peeved at the lack of recognition). Even so, there is nothing there to mention how much unpaid carers SAVE the global economy, putting themselves out of pocket for no reward other than the emotional reward that caring gives.
“These costs are expected to increase significantly if therapies to prevent dementia and improve care and treatment are not developed and implemented. We recognise the need to strengthen efforts to stimulate and harness innovation and to catalyse investment at the global level.” – Not everything has to cost so much money, a great friend of mine on twitter designs things intended to aid those living with dementia, and has produced many cost effective versions of the pricier products available online. Using the innovation and experience of those who live with and/or care for an individual with dementia, I’m sure we can find better care methods/treatments and the such like at a more affordable level.
They support the appointment of a Dementia Innovation Envoy – as said above, I hope this includes people who have experience of dementia, in order to increase innovation to improve the quality of life for individuals with dementia and their families.
“The ambition to identify a cure or a disease-modifying therapy for dementia by 2025 and to increase collectively and significantly the amount of funding for dementia research to reach that goal. We will report biennially on expenditure on publicly funded national dementia research and related research infrastructure; and we will increase the number of people in dementia related research studies” – OK, so this is no bad thing. Increased funding and research is always going to be a beneficial thing, but, at fear of repeating myself. A cure is not the only thing we need.
” Encourage open access, where possible to all publicly funded dementia research and to make the research data and results available for further research as quickly as possible, while protecting the privacy of individuals and respecting the political and legal frameworks of the countries in which the research is conducted” As a blogger about things dementia related, this excites me. Anything we can learn about dementia, and share with others will all help.
“Consider what changes could be made to promote and accelerate discovery and research and its transformation into innovative and efficient care and services” – how about the first, and most important thing? Raise awareness to remove the stigma. Once people are made aware of dementia, and how it actually affects the individual and their carers/families they will be more likely to donate voluntarily or help in other ways such as volunteering. Schemes like the Purple Angel will be integral in this awareness raising. And I am proud to be a part of it.
“Call upon all sectors to treat people affected by dementia with dignity and respect, and to enhance their contribution to dementia prevention, care and treatment where they can; and call upon civil society to continue and to enhance global efforts to reduce stigma, exclusion and fear.” And there we have our first mention and acknowledgement of our backstage fight. It’s true though that this awareness needs to be made in all sectors (as highlighted in my red bank posts). Anyone who may come into contact with an individual with dementia in the workplace needs to be aware of what it is, how it affects the individual and what they can do to help.
All this will be going on until they meet again in 3 years to review. But will it make a difference? I’m not holding out much hope I’m afraid. I think all this summit has done was made the media focus on dementia for a day. And then poof, it’s gone again.The true impact will be felt once all our backstage fights come together, and are supported by the government, businesses and all other sectors.
I will stop here, but I will be doing another post about the communique, which goes into more details about the goals and aims of the summit.