Information in dementia care: sense making and a public health direction for the UK?

Providing information is a core focus of policy and practice in dementia care. Information is a vehicle through which people can be enabled or disabled, so it is essential that we ensure that information is available in a way that is accessible and relevant for people with dementia and that it enables personal aspiration and collective identity to be advanced in a way that is to the benefit of those living with dementia. People with dementia need information to support autonomy in making decisions and in acting on those decisions. Information must be provided in a way that is appropriate to the individual and to achieve that requires knowledge of the needs of that individual. However, maintaining autonomy includes, but involves much more than, the provision of information – others need to listen and hear their views and be prepared to act on them. As professionals, we must be aware that the (dementia) information we provide may disrupt the biographical narrative that people with dementia value. Thus, a person-centred approach encourages the sharing of knowledge and information. The (mis)use of information also impacts on the way that society disables, discriminates and applies barriers against people with disability.