Ageing and intellectual disabilities: a review of recent literature

Abstract

Purpose of review Summary of recent research and research-based recommendations to address health needs and dementiarelated concerns in older persons with intellectual disabilities. Recent findingsUse of longitudinal designs has expanded our knowledge of the changes experienced in old age by persons with intellectual disabilities. Investigation of amyloid deposition in persons with Down syndrome continues to expand our understanding of dementia presentation and potentially of therapeutic interventions. More knowledge is now available on the properties of assessment instruments leading to recommendations for use under particular circumstances. Furthermore, randomized trials support the use of preventive and health supportive strategies. Summary As longevity increases for persons with intellectual disabilities, research continues to support good health outcomes and in particular to address the challenges posed by dementia.

Environmental Evaluations and Modifications to Support Aging at Home With a Developmental Disability

“…Lifespan among adults with nonorganic forms of intellectual disabilities has substantially increased over the past 50 years (Janicki, Dalton, Henderson, & Davidson, 1999). Although precise numbers are not available, McCallion and McCarron (2004) point out that in countries with national databases, such as Ireland, this longevity increase is seen as dramatic. They cite an increase of 368% from 1974 to 2002 in persons with intellectual disabilities between the ages of 35 and 54 and an increase of 249% in those older than 55.…”

Medical conditions and medication use in adults with Down syndrome: A descriptive analysis

“…Adults with intellectual disabilities such as Down syndrome are experiencing simultaneous increases in life expectancy and the prevalence of certain medical conditions [1] , including hypothyroidism [2] and sleep apnoea [3] . Premature aging is not uncommon for older adults with Down syndrome [4] .…”

Meeting the End of Life Needs of Older Adults with Intellectual Disabilities

“…As a citizen, the person with intellectual disability should have choice about where to be cared for and where to die and staff are challenged by how then to respond to the additional care needs of the person who is on a journey with a terminal illness (Blackman & Todd, 2005). Many intellectual disability services are poorly prepared to meet and respond to end-stage dementia in terms of the suitability of the service environments and the skill mix and knowledge base of staff (McCallion & McCarron, 2004).…”

“…Responses to these new challenges are too rarely planned and are often unprepared for the end stage of disease even when maintaining a person in place is intended McCallion et al, 2005). Data gathered to date suggests that service redesign for dementia is needed at individual, staff, residential/programming unit and organizational levels (McCallion & McCarron, 2004). Equally, approaches and assumptions may need to be re-examined at end stage disease (McCarron et al, 2010).…”

“…This was and to some extent continues to be a largely hidden population in general health care, services were largely provided within their own intellectual disabilities services system, aging was the exception rather than an expectation and there were beliefs that people with intellectual disabilities themselves were not able or ready to made decisions about their end of life care. Some of these assumptions were never true but increases in longevity, onset of chronic diseases such as Alzheimer's disease and the development of palliative delivery in multiple countries are changing this picture (FaheyMcCarthy et al, 2009;McCallion & McCarron, 2004;& Tuffrey-Wijne, et al, 2007).…”