Watchman, Karen

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia.

Research that has tracked living situation changes is lacking for people with Down syndrome post-diagnosis of dementia. Extant studies have not considered reasons for a move, the stage at which it happened, and how involved in the decision the person with Down syndrome was. To study this, a postal questionnaire was used with 35 carers of persons with Down syndrome in Scotland who had been diagnosed with dementia during the previous five years.