In this post I’ll cover what was written in the communique, which was a bit more detailed than the declaration. I’ll try not to repeat myself.
“We understand the importance of using existing evidence and knowledge to inform decision-making, as well as creating better and more robust monitoring and evaluation evidence” – As mentioned in the previous post, I do hope this means existing individuals with dementia and their carers. Who else could have better knowledge and experience?
“We acknowledge the need to attract new investors and the need to support the disruptive technology and innovation in companies and academia that is currently being postponed or shelved because of the technical and financial threat of failure”- as brought to my attention by another great friend on Twitter, The Dementia Advocacy Network will now be closed due to funding issues. This announced to me the same day as the G8 dementia summit promised to stop this kind of thing happening.
“We recognise that both public and industry-led research and capacity must be encouraged to enable new approaches to be identified and developed. We must explore all avenues of innovation. Priorities for investment include:
• Research to elucidate the mechanisms underlying the initiation and progression of neurodegeneration as a basis for identifying new targets for therapeutic development;
• Prevention of dementia;
• Making timely diagnosis and early intervention feasible, affordable and cost effective;
• Facilitating the integration of care and helping individuals and their carers access care and social services in their homes and communities; and
• Making care homes more responsive to needs.” Prevention would be great, finding a cure, finding the cause, all great. However we cannot be making timely diagnoses without removing the stigma and encouraging people to seek a diagnosis without fear of what may happen to them, or them thinking it is a normal part of aging. And we shouldn’t just be making care homes more responsive to needs, but all businesses. As for facilitating the integration of care…We don’t just need care and social services, we need more local support groups or respite available. We need someone to talk to any hour of any day. Dementia doesn’t work during office hours, which is the only time you can contact social services. I could go on and on about this. It winds me up that we have to get to breaking point before help is offered.
“To reduce the impact of dementia on an ageing society…” Dementia is not just affecting older people. There is little mention of younger onset dementia anywhere at all in the communique.
“We should explore ways to connect people affected by dementia, particularly to support collaborative problem solving” I do believe many of us are already exploring this avenue. If any research had been done by the summit you would have realised how many online support groups there are, chat rooms, tweet ups, currys, blogs which are uniting us and encouraging others to connect and suggest ideas.
“Dementia is a global challenge and one which is set to intensify. History shows major diseases can be made manageable, even preventable, with sufficient political will. We therefore need to better understand risk factors for dementia in younger generations, identify available options to reduce risk, and develop and implement rigorously designed public health programmes” (yes I just made a little “woop” sound)BUT WHAT ABOUT SUPPORT?!?!?!
“Responding effectively to dementia requires policy makers across government to work together. Governments can also learn from one another. To learn from one another and facilitate knowledge exchange, we will strive to improve the way in which we share government policy documents on treatment, services, interventions and research for people affected by dementia” – does anyone know if countries discuss their own research into illnesses etc with each other? If one country starts an experiment for example do they tell others? The way the summit talked about sharing ideas and discussions between countries leads me to believe this is not a regular occurrence, so why? Why aren’t countries discussing things that working and things that aren’t? This world baffles me, us plebeians have the sense to share, so why aren’t the governments?
“Dementia is our collective social responsibility. We affirm our commitment to improving the lives of people affected by dementia, regardless of nationality, identity, background, culture socioeconomic status, language or religion” – it’s great that in this day and age we won’t discriminate against anyone while improving lives. It’s also great that we feel the need to state that we won’t discriminate.
“Dementia requires long term health and social care support. Providing care for those with dementia can present challenges for families and carers. We need to provide better and more concrete measures for improving services and support for people with
dementia and their carers, to improve their quality of life and wellbeing.” THIS SHOULD HAVE BEEN THE FUNDAMENTAL POINT THAT THE SUMMIT FOCUSSED ON, NOT POINT 21 OF A COMMUNIQUE THAT WILL ONLY BE READ BY THOSE OF US ALREADY DEDICATED TO IMPROVING LIVES.
“We pledge to disseminate successful approaches to supporting people with dementia and their carers including:-
• Provision of advice, including on care planning, management and wellness support
• Appropriate use of medication, particularly antipsychotics, and delaying and/or reducing secondary complications
• Community-based programmes fostering inclusion and improved quality of life
• Delivering services through a continuum of care, including primary care
• Individual tailoring of care
• Realisation of new, ambulant living options
• Helping care homes to meet the needs of people with dementia
• Affordable options for care and everyday support
• Addressing end of life care”- Most of this is already going on, in the areas with more support, and for those with the money to pay for it. What we need to focus on is helping people realising there are other options and making it affordable.
“Carers themselves are often older adults, mainly women, who may be dealing with their own health problems. We call for greater social responsibility and innovation to improve the quality of life for carers and improve care while reducing costs and financial burden including:-
• Training for carers, including how to deal with dementia related behaviours
• Improve the reconciliation of care and career for carers
• Support carers in acute situations and crises
• Local and affordable options for care and everyday support
• Promote civic engagement and the development of social networks
• Attract and train community representatives to support people with dementia in social environments
• Creating better and robust evaluation evidence
• Using existing evidence and knowledge” Again, why is this a secondary point in a communique that won’t be read by the masses? It’s been mentioned that we need to make dementia research etc more accessible, but I’ve struggled to read and understand the declaration and communique. And I know what I was looking for. Why has this not been part of a more in depth media coverage? To make people aware of what we (family, carers and individuals with dementia) need.
“Appropriate autonomy and self-determination, including substitute or supported decision making, for people with dementia must be protected and strengthened. Therefore national and local policies should be in place to ensure appropriate autonomy and self-determination are recognised and protected.” Here’s looking at you red bank, and your lack of knowledge regarding power of attorney.
“As people age, many fear the potential onset of dementia-related symptoms or a diagnosis of dementia. Negative reactions from family, friends, and professionals can impact a person’s willingness to seek assistance, as well as their well-being and ability to manage the changes brought about by dementia. We commit to improving the understanding of community attitudes towards people with dementia across generations.” – Once again, already being done – Hi Purple Angels 😉
…we call upon organisations… “to promote various forms of civic engagement on dementia awareness, and to contribute to the prevention of dementia and to improve care and treatment where they can”. – I may have to include this in the Purple Angel contact letter I send – the government wants you to get involved guys!
If you want to check the information without my annotations and comments: