Dementia and People with Intellectual and Developmental Disabilities

IntroductionDementia is an acquired syndrome secondary to many causes. common feature is the continuous progressive deterioration of intellectual functions and personality changes, associated with a marked decline in activities of daily living. Memory loss, a common early sign, is followed by impairment in other domains like language, judgment, mood changes, psychiatric disorders, like hallucinations, psychosis, and sleep disorders. These symptoms are also associated with gait deterioration, swallowing disorders, loss of activities of daily living and in some cases epileptic seizures. clinical presentation is variable depending on the cause and the individual affected.Dementia and agingDementia, a condition age related, is becoming more important in people with DD, as, given the marked improvement observed in the last 30 years in the quality of care they receive, the life expectancy is getting longer.The 1923 report from the US Census Bureau on persons with intellectual and developmental disabilities (IDD) living in institutions showed that around 67% were between the ages of ten and thirty years, 95% were under the age of 40, and only 1% above the age of sixty (1). Most of the deaths occurred in the first decade particularly the first two years of life. mortality ratios directly correlated with the degree of intellectual disability and approximately 50% of the deaths were due to infectious disorders. Epilepsy and heart conditions were also reported as frequent cause of death. Similar results were observed in a study that evaluated cause of death of individuals admitted to an institution in California during the period 1944-1962 (2).The life expectancy of persons with IDD living in three institutions in the Commonwealth of Massachusetts, between the years 1917-1930, was 30 years for males and 32 years for females (3, 4).At Wrentham Developmental Center, an institution for persons with IDD in Massachusetts, there were 365 individuals residing as of April 1999; the average age was 55 years, (range 34-91 years), 160 persons were over the age of 55 years, and 47 of them were 70 years or more. Fifty-two individuals died between January 1995 and June 2000, the average age at death was 64 yrs (range 33-90 years). In 2014 there were 314 individuals living in the facility, average age was 63 years (range 33 to 101 years) 270 of them were 65 years or older.In some groups of individuals with IDD the increase in age was even more dramatic. life span of children born with Down syndrome was 9 years in the 1920s, increased to 30 years in the 1960s, and to 55 years in 1993 (5, 6) In 1996 it was reported that in California the life expectancy of a 1 year old child with Down syndrome and profound IDD was 43 years and increase to 55 years in those with mild to moderate degree of IDD (7). At WDC, in 1999, the average age of persons with DS at the time of death was 61 yrs. (range 47-70 yrs.).A prospective study done in British Columbia, Canada in 1995 (8), with a cohort of more than 3,000 individuals with cerebral palsy, found an overall survival rate of 87% at age 30 years. Also it was estimated that for those in the 30-39 years bracket, the possibilities of survival to the next decade was in the order of 90%. With proper resources, people with hemiplegia and IDD can live well after 70 years (9).Recognition of the issueThe recognition of the special needs of the elderly person with IDD is relatively new. Early workers in the field presented the issue of aging in IDD in the 1960's (10), but gerontological issues were not as prevalent as they are now (11) and it is only in the past 20-25 years that the special needs of older adults with IDD were recognized. For example the first full session on The aging mentally retarded was presented at the 12th Congress on Gerontology, in Germany, in 1981 (12).This awareness led to a positive response from governmental agencies. …

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