cover of dementia directory

Researchers in the field of intellectual/developmental disabilities (I/DD) believe there are at least 180,000 older adults with I/DD in the US. Of these people, 11,000 will be affected by dementia. Most people with I/DD in general are as likely as older adults without disabilities to have dementia.

However, people with Down syndrome are more likely to have dementia in their life, with 30-40% of people with Down syndrome having dementia by age 50. The average age of the ‘onset’ – that is, when we first notice changes – in adults with Down syndrome is age 52. This percentage increases as people age.

People with I/DD may experience the challenges of dementia in different ways than people without disabilities and older adults. All changes for a person with I/DD should be considered in relation to the abilities they had previously (their baseline). Family, friends, and trusted staff who see a person
daily are often the experts in recognizing and noticing these changes.

The resources included in this document are intended to be helpful to people with I/DD and their
families.