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Impact of Dementia Upon Residential Care for Individuals With Down Syndrome
Author(s) -
Lloyd Vicki,
Kalsy Sunny,
Gatherer Amanda
Publication year - 2008
Publication title -
journal of policy and practice in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.592
H-Index - 30
eISSN - 1741-1130
pISSN - 1741-1122
DOI - 10.1111/j.1741-1130.2007.00137.x
Subject(s) - dementia , intellectual disability , psychology , challenging behaviour , down syndrome , cognitive dissonance , caregiver stress , clinical psychology , cognition , scale (ratio) , caregiver burden , psychiatry , gerontology , medicine , disease , social psychology , physics , pathology , quantum mechanics
Despite the increased prevalence of dementia in individuals with Down syndrome, relatively little is known about its impact upon care provision. Carers may be familiar with the demands of assisting a person with Down syndrome, but generally have little knowledge about the course or impact of dementia. This dissonance may lead to stress, which can have a detrimental effect on the carer and the quality of care for the recipient. In this exploratory study, the authors examined the objective and subjective impact of dementia upon paraprofessional paid carers of individuals with Down syndrome working in residential settings. The study used the Caregiver Activities Scale—Intellectual Disabilities (CAS‐ID), the Caregiver Difficulties Scale—Intellectual Disabilities (CDS‐ID), and the Maslach Burnout Inventory (MBI). Responses given for these measures by paraprofessional carers of individuals with Down syndrome and dementia ( n = 9) were compared with responses from those caring for recipients with Down syndrome and no additional cognitive decline ( n = 11). No significant differences were found in the responses from these sets of carers on measures of objective (CAS‐ID) or subjective burden (CDS‐ID). However, the MBI revealed that carers of individuals with Down syndrome and dementia reported significantly increased levels of emotional exhaustion. Findings suggested that, while even when there is little difference in the level of caregiving tasks or the subjective difficulties of caregiving, the onset of dementia in individuals with Down syndrome resulted in increased emotional exhaustion for carers. Additional factors not considered within this study, such as challenging behavior, may also be pertinent to carer burden.