[This article first appeared in: Dementia Newsletter RWHT Volume 1 Issue 6 January 2011].
This report presents research by the Alzheimer’s Society into the information needs of people with dementia and their carers, with recommendations for implementing the National Dementia Strategy’s information objectives.
A core set of information on the condition should be provided free of charge to each person with dementia and their carer(s) at the time of diagnosis. This information should be provided proactively. Effective coordination between health and social care staff in providing information should ensure there are no gaps or duplication.
Staff should be able to signpost people to additional sources, as required. Staff require training on how to assess and understand the information needs of people with dementia, and should be able to tailor their information provision to individuals. Information targeted to people with dementia needs to be carefully designed to meet the needs of people with dementia.
Public awareness of dementia and its impact on people’s lives needs to be raised, as does the level of GP knowledge and awareness of dementia.
The Department of Health booklet “Who cares” should be updated and re-printed. A further booklet should be developed that addresses the information needs of people with dementia, to handle fears and anxieties about being diagnosed with dementia, coping with the stigma connected with dementia, how to tell other people about a diagnosis of dementia etc.
Every carer and person with dementia needs a core set of information to which they can refer for advice and consult for sources of further information.
More research is needed into the information needs of particular groups of people with dementia, such as the travelling community, people from black and minority ethnic groups.
Local information provision can be improved by local statutory health and social care services working together, and working proactively. Support in developing local information could be provided on a national basis includes using the Department of Health’s Dementia information portal (http://www.dementia.dh.gov.uk/).
People with dementia and carers need to have access to emergency advice and information, in the form of local 24-hour crisis support.
Sharp, S. (2010). Information needs of people with dementia and carers. London: Alzheimer’s Society, 2010.