Please, please remember to focus on the people who suffer from dementia as well as the diseases themselves.
It will be very easy for those at the summit on dementia to fall into a medical model discussion on dementia, the medical research on cures and ways to alleviate the symptoms of dementia but it is equally important that there is a focus on how we support and care for those who have dementia now when there is no known cure available and we focus on supporting those families who care for people with dementia, whose levels of stress may increase causing them to suffer from illness as well.
Medical advances have meant wonders for many diseases, many who suffer from cancer for example can live in hope, especially if the disease is caught early, of a cure or remission, for those beyond that hope there is the comfort of pain relief and, hopefully, effective palliative care. This does not in any way ease the distress but it does, to some extent, provide clarity on the future and provides the help of the health system.
With dementia however, there is no clarity nor is there effective medical assistance. Those who have dementia are dealt with by a social care system that is fragmented, under-funded and, unfortunately, largely ignored by social policy.
Whilst there will be a great many politicians, bureaucrats and medical experts at the summit on Dementia the reality that the actual care is delivered by families or low-paid care workers and if we want to address the care and support of people who have dementia now then it is those people the summit needs to find ways to support in order that they in turn are better able to support those with dementia right now.
Medical cures and research success take time, time that many of those with dementia right now will never see come to fruition, in addition to the medical research there MUST be social research looking at what is effective in supporting those with dementia in the absence of medical help. There must be a concerted effort to ensure that best practice in dementia care is applied across the board, there needs to be a policy of high quality standards for care services rather than one of ‘essential’ standards and there needs to be a recognition that social care services provide and equally important role in supporting those with dementia and that dementia services should be funded in the same way as any other long term medical condition.
The G8 summit on dementia is important in raising awareness of the issues but let us hope that the issues go beyond medical science and include the aspects of providing social care support to those who suffer from dementia right now.