A study to define: profound and multiple learning disabilities (PMLD).

This study aimed to define the term 'profound and multiple learning disabilities' (PMLD). A shared understanding of terminology or diagnostic terms describing groups of individuals is important for the purposes of strategic development, service planning, and the provision and equity of service delivery. A literature review provided different definitions and meanings associated with the term. The meaning attributed to the definitions was explored in focus groups and individual interviews (face to face and telephone) with service managers, commissioners, practitioners, frontline healthcare staff and family carers who provide services, support and care for people with PMLD. Further iterative discussions were held with a smaller group over the precise wording of the chosen definition to ensure there was a shared and common understanding. Personal characteristics for the purpose of this study are defined as diagnoses, disabilities, impairments, activity restrictions and other characteristics which represent a person with PMLD.

Risk factors for dementia in people with down syndrome: issues in assessment and diagnosis.

It has been clearly established that there is an increased incidence of early onset dementia of the Alzheimer type (DAT) in people who have Down syndrome. There are variations in the age of onset of the clinical signs of DAT, which may be accounted for by different risk factors. In this review we examined the evidence that different biological and psychological factors may influence the risk for DAT. Limitations in design of early studies, the need for consistent diagnostic criteria for DAT in individuals with Down syndrome, and the lack of adequate psychometric tools to detect cognitive change are highlighted. Implications for research and clinical practice are considered in order to assess potential risk factors.