Younger onset dementia: developing a longitudinal model as the basis for a research agenda and as a guide to interventions with sufferers and carers.

With the current emphasis on community care, the importance of dementia as an area for the interventions of community practitioners, especially nurses, cannot be overemphasized. However, despite being the subject of increasing research over recent times, a comprehensive model of the dementia experience from either the sufferer's or carer's perspective has yet to be developed. This is particularly noticeable in the case of people suffering from dementia below the age of 65. This situation is exacerbated by the lack of representative epidemiological studies which relate to the incidence or prevalence of younger onset dementia. In this paper, the current epidemiological literature on younger onset dementia is considered and the findings from previous work are used to suggest prevalence figures for Wales. A longitudinal model of the dementia experience from a sufferer's perspective is then presented as the basis for a research agenda. It is also suggested that this model, subject to empirical testing and refinement, could be used as a guide to interventions for practitioners working with the sufferers and their carers.