Today I spoke in public for the first time about what it is like to live with someone with dementia. It was a meeting for the local Alzheimers Society with health and social services. I talked about how the services see me as a carer, even the ‘main carer.’ This is an extract:

“I am the husband and that is a 24/7 commitment and I am content with that. I do what I can in that role, which also includes going out to work and following other interests and having a pint occasionally with friends. But what if I am the carer? There are apparent advantages – I can have an assessment, for example, or a head massage at a carers day – there was one time when I went to the social services office and was given a sum of money, with instructions that I was to spend it on myself. It reminded me of a kindly aunt. Most important of all, as I say, health and social services are providing all kinds of help, which are intended to support the carer. To support the carer. This is where it doesn’t look so good from my point of view. This word carer gives me a certain role in the view of health and social services, in the minds of managers and policy makers. And you are going to support me in it. Let me give one example of what this might mean. . Last year the government introduced a review of social care called Options for Excellence, and there are working groups looking to deliver personalised social care. I was interested in what they might say about respite at home – obviously it’s a better option, if we can manage it, to put the care into the person’s home rather than put the person in a care home. The review has a number of good recommendations in its vision for the future of adult social care. Here is one: ‘Every area will have short-term home-based respite support for carers in crisis or emergency situations.’

But I don’t want to wait to be supported until I break down and you have to take over. In fact I don’t intend to break down at all. What we need is help now, not to wait until there is a crisis or emergency.”