Aging and Intellectual Disabilities: A Review of Recent Literature

Philip McCallion; Mary McCarron

Disclosures

Curr Opin Psychiatry. 2004;17(5) 

In This Article

Abstract and Introduction

Purpose of review: Summary of recent research and research-based recommendations to address health needs and dementia-related concerns in older persons with intellectual disabilities.
Recent findings: Use 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.

This review begins by noting both the success that ageing of persons with intellectual disabilities represents and the challenge it means for families, physicians, professionals and the services providers who must offer new forms of care.[1**,2] Adults with intellectual disabilities are experiencing increased longevity, and concerns have been raised that this means increased demand for services and special attention that many jurisdictions are ill-prepared to address.[1**,2,3] When persons with intellectual disabilities were not expected to live into old age there was a reasonable expectation that parents would outlive their offspring and offer a lifetime of care. Few services for old age were developed or provided. Today, we have sizeable groups of individuals with intellectual disabilities that are ageing and thus need related services. In nations with national databases such as Ireland, changes in life expectancy can be dramatically illustrated. From 1974 through 2002 the number of persons with intellectual disabilities in the Irish database aged 35-54 increased 368% and those over 55 by 249%.[4] Yet, providing services for ageing persons with intellectual disabilities and supporting their families are areas where professional and care staff have received little training.[1**,2]

As much as the ageing of persons with intellectual disabilities is a credit to the sustained efforts of families, providers, communities and professionals to improve their lives, ageing also presents its own challenges. In his consideration of fundamental principles underpinning successful ageing, Kahn[5] argues for the importance of an absence of illness and of illness-related disability. Ageing may also require a willingness to accept age-determined health-related decrements to independence[6] and such decrements may mean that successful ageing requires the application of compensatory external resources.[7] The maintenance of good health and the application of additional external resources when ill health does occur are likely to be of particular concern for persons with intellectual disabilities, given that when combined with existing disabilities, relatively small additional health concerns can have major implications for independence.[8] Hawkins et al.[9] point out that most information on decline and need, at least for persons with Down syndrome, has been based on studies with cross-sectional designs and may therefore exaggerate the rate of decline. Using a longitudinal approach, it was found that decline for persons with Down syndrome did appear to occur on average 10 years earlier than for the general population, and although short-term memory decline was similar to the general population, long-term memory in persons with Down syndrome declined after age 39 at a faster rate.[9] For all of these reasons attention to changing health needs and in particular to Alzheimer's disease and other dementias receive critical attention in the literature reviewed here.

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