Having learned through TP a lot about what so many carers have to deal with, I can well understand the cynicism above. I have only been caring for 15 months but am well into the 24/7 challenge (J. has the rapid on-set form of early on-set AD); how people cope with this for years, I really cannot imagine.
Although I am retired (early) from my international, senior, business career, I have been doing consultancy work for the past 41/2 years. One especially important piece of work involved strategic leadership of a major global project to significantly improve the health and intellectual capacity of children and the health of mothers (before and after birth) by ensuring sufficient vitamins and essential minerals in the diet. This is needed in the developed world almost as much as in the developing. I was providing strategic guidance to all of the work and helping governments (UNICEF, WHO, national governments), aid agencies, public health experts and business leaders work together to deliver the benefits cheaply, efficiently and universally. Recently from US and Canadian experience we learned that the interventions can reduce heart attacks and strokes in adults by about 25%.
I use the past tense for my involvement; I resigned last week because of the impossibility of combining caring for J. with such work. My resignation was accepted although I have been asked to stay in touch with the work and continue to provide critical input on a regular basis to the group of senior people leading the work.
I know full well that others have had to give up highly meaningful work to be carers. Such costs are additional - and almost impossible to determine. At least I do not need the payment (much of the work was unpaid, anyway); those who have families to support on their wage or salary must be torn apart in deciding their priorities.
The only way we will get things changed is to make telling and practical input to government. Carers UK, who commissied the study, and The Princess Royal Trust for Carers made the following comparisons in their press releases (actual quote is from the Trust) about the £87 billion family carers save the government:
£87 billion is more than the annual cost of all aspects of the NHS, audited in 2006/07
It exceeds the amount spent on social care services for adults and children by local authorities every year by more than four times.
This figure is 52% higher than the last estimate in 2002
The government is currently consulting about what carers need (hence the flurry of reports and statements on carers from government and from charities). I have been invited to a (short) day's consultation in Newcastle in mid-October. Getting our facts clear and our needs well and reasonably defined is essential if we are to change government policy. Continuing to argue our corner effectively and reasonably (by government criteria) is essential if we are to improve the lot of carers in the years to come. Sadly, many of us will not see the benefits - the wheels of change grind incredibly slowly.