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Journal of Intellectual Disabilities, Vol. 6, No. 3, 263-279 (2002)
DOI: 10.1177/1469004702006003036

Time Spent Caregiving for Persons with the Dual Disability of Down's Syndrome and Alzheimer's Dementia

Preliminary Findings

M. Mccarron

M. Gill

Trinity College, Dublin, Ireland

B. Lawlor

St James's Hospital, Dublin, Ireland

C. Begley

Trinity College, Dublin, Ireland

Persons with Down's syndrome (DS) are at increased risk of Alzheimer's type dementia (AD) compared with the general population. Little attention has been paid to the current and future impact of AD on caregivers and clients in residential and community settings. The present study sought to test if the Caregiver Activity Survey-Intellectual Disability (CAS-ID) would be useful in measuring time spent by professional caregivers aiding persons with DS and AD. Preliminary findings suggest that staff caregiving time increases significantly when a person with DS experiences symptoms of dementia. No significant differences were reported in time spent caregiving for subjects at mid-stage versus end-stage dementia; however, the nature and tasks of caregiving change as dementia progresses. This study supports the utility of the CAS-ID in measuring time spent caregiving for persons with AD and DS. Care providers must plan appropriate models of health and social care to effectively address these needs.

Key Words: Alzheimer's dementia • assessment • caregiver time • Down's syndrome


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