In the world of dementia policy and influence, the voluntary organizations and user organizations have a very special role. Alzheimer Disease International, and the Alzheimer organizations in every country, work to raise awareness, to raise money for research into a cure and to influence government policies, while at the same time providing direct services and information to people with dementia and their carers. It is hard to challenge how they talk about dementia, because they hold the moral high ground. By definition they ‘know’ about dementia. To contradict them is to risk being accused of denying their experience, which is a particularly unacceptable action if you are a professional health worker, such as a nurse. By necessity, the people who are most influential in those organizations are carers, or people in the early stages of dementia who are still well enough and articulate enough to take part in committees and public discourse in the media. From general observation, this appears to be an atypical group of people with dementia; younger, White, middle class and middle aged. Because the policy makers and decision makers are often from the same demographic, they more easily identify with and pay attention to those advocates for dementia. It is harder to empathize with an old lady in a care home who appears unable to communicate rationally. Her circumstances are too frightening. It is therefore important to consider how nurses can help to bring the needs of all people with dementia forward for the attention of policy makers and shape how people think about dementia, to redress the balance. How nurses talk about this condition is crucial to the future of how we care for people affected by it. Dementia is technically the name given to the symptoms which are caused by a number of diseases including vascular disease, alcohol-related brain damage, Pick’s disease and Lewy body disease. People who deliver the nursing care of people with the symptoms of those diseases need to know which disease it is, because that helps with medication and predicting which symptoms will predominate, and telling relatives and carers and the patient what to expect. But interestingly, globally, we seem to be moving towards calling everything ‘Alzheimer’s’, no matter what the cause, and no matter what the predominant symptoms. My own experience of naming the disintegrative disorders of child hood ‘dementia’, which technically they are, gives rise to anger and a disproportionate level of repugnance among nurses.