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Alzheimer's dementia in persons with Down's syndrome: predicting time spent on day-to-day caregiving
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(4), November 2005, pp.521-538.
- Publisher:
- Sage
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.
Supporting persons with Down syndrome and advanced dementia: challenges and care concerns
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(2), May 2010, pp.285-298.
- Publisher:
- Sage
There has been growing interest in addressing resource, training, and service redesign issues including an increase in collaboration in response to the increasing prevalence of dementia among persons with intellectual disability (specifically Down syndrome) – and recently this has included consideration of the specific issues in advanced dementia. This study aimed to understand staff challenges, issues and perceptions of critical issues in caring for persons with both intellectual disability and advanced dementia. Thirteen focus group interviews were held involving staff in six intellectual disability services and one specialist palliative care provider in Dublin, Ireland, where the staff identified three key themes: readiness to respond to end of life needs; the fear of swallowing difficulties; and environmental concerns and ageing in place. Results highlight four underlying issues that emerged in this study offer clues to solutions: differences in staff preparation associated with settings; lack of understanding and lack of collaboration with palliative care services; uncertainties about the ability to transfer existing palliative care models to persons with intellectual disability and dementia; and the need to develop training on end stage dementia and related care approaches.