Suchergebnisse

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.

Abstract  The authors describe and assess the experience of providing proactive screening for dementia in older adults with intellectual disabilities (ID) through a dedicated clinical psychology service within the National Health Service in England. Subjects were the first 18 participants who were referred to the clinical service or were identified as showing early signs of probable dementia in a proactive screening strategy. The screening process involved combining neuropsychological, behavioral, and health data with information from a clinical assessment of the presenting problem in a case series approach. The process of psychological assessment and formulation is illustrated together with an outline of the psychological interventions employed for early‐, mid‐, and late‐stage dementia. An appraisal of the service strategy showed that a dedicated psychology service for dementia assessment can be effective when offering a defined and workable psychological response to the increasing presentation of dementia‐associated behaviors among people with ID. Ancillary services included supporting carers in contributing to the assessment and intervention process so as to ensure appropriately responsive and respectful care management for the person with ID and dementia. The authors recommend that a multimodal stage model of intervention founded on direct performance and informant‐based assessments (within a framework of differential diagnosis) be employed in supporting people with ID and dementia.