Impact of Dementia Upon Residential Care for Individuals With Down Syndrome

Abstract

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.

Taking each day as it comes: staff experiences of supporting people with Down syndrome and Alzheimer's disease in group homes

“…In contrast, Lloyd et al . () found no difference in the amount of time staff spent caring for adults with Down syndrome with and without dementia in a disability residential care setting, but suggested this was attributable to the earlier stage of dementia of these residents compared with those who were the focus of the study by McCarron et al . There is evidence that behavioural and psychological symptoms of dementia (BPSD), including depression, psychosis, psychomotor agitation, aggression and apathy in people without ID have been associated with carer burden and experience of crisis (Lawler ).…”

Quality outcomes in group home dementia care for adults with intellectual disabilities

“…2004; Huxley et al . 2005; Lloyd et al . 2008) and thus training on managing behaviours is crucial for staff providing direct care.…”

“…2010a,b). Staff burden is another result of dementia care demands; carers of individuals with latter stage dementia often report significantly increased levels of emotional exhaustion (Lloyd et al . 2008) and night‐time care needs and issues around eating and personal care are often areas that demand the most staff time (Wilkinson et al .…”

Coping with dementia and older families of adults with Down syndrome

“…They did note, however, that the nature and tasks of caregiving for families changed as dementia progressed. Interestingly, Lloyd, Kalsy, and Gathere (2008) although finding some differences favoring time spent between adults with dementia and those not experiencing decline, could not report statistical significance.…”