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Alzheimer's dementia in persons with Down's syndrome

Predicting time spent on day-to-day caregiving

Michael Gill

Trinity College, Dublin, Ireland

Philip Mccallion

University at Albany, USA

Cecily Begley

Trinity College, Dublin, Ireland

The aim of this study was to investigate the amount of time formal caregivers spend addressing activities of day-to-day care activities for persons with Down's syndrome (DS) with and without Alzheimer's dementia (AD). Caregivers completed for 63 persons with DS and AD, and 61 persons with DS without AD, the Caregiving Activity Survey-Intellectual Disability (CAS-ID). Data was also gathered on co-morbid conditions. Regression analysis was used to understand predictors of increased time spent on day-to-day caregiving. Significant differences were found in average time spent in day-to-day caregiving for persons with and without AD. Mid-stage and end-stage AD, and co-morbid conditions were all found to predict increased time spent caregiving. Nature and tasks of day-to-day caregiving appeared to change as AD progressed. The study concluded that staff time to address day-to-day caregiving needs appeared to increase with onset of AD and did so most dramatically for persons with moderate intellectual disability. Equally, while the tasks for staff were different, time demands in caring for persons at both mid-and end-stage AD appeared similar.

Key Words: cost of care • out of home care • staff carers

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