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Caregiving and Adults With Intellectual Disabilities Affected by Dementia


Ken Courtenay, Consultant Psychiatrist, Haringey Learning Disabilities Team, Unit 5, St George's Estate, White Hart Lane, London N22 5QL, UK. Tel: +44 208489 1395; E-mail:


Authors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997–2008 on the current knowledge on social-psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level between the person and their carer and organizational and interorganizational supports have an impact on the quality of care provided. However, the lack of robust evidence to meet the needs of adults with ID affected by dementia means that service organizations often have to extrapolate from the evidence base of dementia care practices in the general population. The review showed that concerns over staff burden, behavioral interventions, and staff training, and applications of models of care were emerging, but were not systematically studied. Authors noted that pharmacological agents and nonpharmacological, psychosocial techniques were being used to assist carers manage behavior, but the evidence base of both nonpharmacological and pharmacological interventions that can help people with ID and dementia and their carers is insufficient because of the absence of systematic and robust studies. The authors note a need for an international research agenda that begins to address gaps in knowledge. With more adults projected to be affected by dementia, a robust evidence-based body of literature on dementia care in people with ID can help with planning for and providing quality dementia-capable services.