The influence of Alzheimer's dementia on time spent caregiving for persons with Down Syndrome

Abstract

Background: Persons with Down syndrome (DS) are at increased risk of Alzheimer’s type dementia (AD) when compared to the general population, yet little attention has been paid to the impact of the illness on such persons and their caregivers in residential and community settings. Aim: To investigate the amount of time formal caregivers spend caring for and supporting persons with DS with and without dementia in their day-to-day activities of living. Method: 63 persons with DS and dementia, and 61 persons with DS without dementia, and their caregivers were administered the Down Syndrome Mental Status Examination (DSMSE), the Test for Severe Impairment (TSI), the Daily Living Skills Questionnaire (DLSQ), and the Adaptive Behaviour Scale-Part 11 (ABS-11). Caregivers also recorded time-spent caregiving over a twenty-four hour period. Costs were calculated for time-spent caregiving. Data were also gathered on clinical correlates or co-morbid conditions. Finally regression analysis was used to understand the predictors of increased time spent caregiving.